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  • 1.
    Andersson, Siv Folkhammar
    et al.
    Unit of Rehabilitation, Kalmar County Council, Oskarshamn, Sweden.
    Bergman, Stefan
    Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden; Primary Health Care Unit, Department of Public Health and Community Medicine, Institute of Medicine, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden.
    Henriksson, Elisabet Welin
    Divison of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden; Division of Nursing Science, Department of Medical and Health Science, Linköping University, Linköping, Sweden.
    Bremander, Ann
    Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden; School of Business, Engineering and Science, Halmstad University, Halmstad, Sweden.
    Arthritis management in primary care: A study of physiotherapists' current practice, educational needs and adherence to national guidelines2017In: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 15, no 4, p. 333-340Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: With an increasing number of patients with osteoarthritis (OA) and rheumatoid arthritis (RA) in primary care, our aim was to investigate arthritis-related practice in physiotherapy and to study adherence to evidence-based care.

    METHODS: Seventy physiotherapists (PTs) working in primary care were emailed a questionnaire to investigate current practice and the number of roles assumed by PTs, the degree of confidence, educational needs and adherence to national guidelines in managing patients with OA or RA. Interventions supported by national guidelines were compared with reports of treatment modalities in the questionnaire.

    RESULTS: Sixty-four (91%) PTs responded, and they reported a higher degree of confidence in assessment, treatment and education of patients with OA than for those with RA (p < 0.001). The total number of roles assumed by the PTs was higher in the management of OA than for RA (p < 0.001). PTs who assumed a greater number of roles also reported a stronger degree of confidence in assessing OA (p = 0.036). Those who assumed fewer roles also reported less confidence in RA treatment (p = 0.045). Recommendations in the guidelines were followed by the majority of PTs for eight of 11 treatment modalities in OA and for six of six in RA.

    CONCLUSIONS: PTs reported a lower degree of confidence and the assumption of fewer roles in managing patients with RA compared with OA. There was good adherence to the national guidelines for almost all the treatment modalities listed. Even so, the results indicate a need for education, especially in chronic inflammatory arthritis care.

  • 2.
    Degen, Winfried G. J.
    et al.
    Department of Biochemistry, University of Nijmegen, Nijmegen, The Netherlands.
    Pieffers, Martijn
    Department of Biochemistry, University of Nijmegen, Nijmegen, The Netherlands.
    Welin-Henriksson, Elisabet
    Department of Medicine, Rheumatology Research Unit, Center for Molecular Medicine, Karolinska Institutet & Karolinska Hospital, Stockholm, Sweden.
    van den Hoogen, Frank H. J.
    Department of Rheumatology, University Hospital Nijmegen, Nijmegen, The Netherlands.
    van Venrooij, Walther J.
    Department of Biochemistry, University of Nijmegen, Nijmegen, The Netherlands.
    Raats, Jos M. H.
    Department of Biochemistry, University of Nijmegen, Nijmegen, The Netherlands.
    Characterization of recombinant human autoantibody fragments directed toward the autoantigenic U1-70K protein2000In: European Journal of Immunology, ISSN 0014-2980, E-ISSN 1521-4141, Vol. 30, no 10, p. 3029-3038Article in journal (Refereed)
    Abstract [en]

    The U1-70K protein is specifically bound to stemloop I of the U1 small nuclear RNA contained in the U1 small nuclear ribonucleoprotein complex (U1 snRNP), which is involved in the splicing of pre-mRNA. All components of the U1 snRNP complex, including the U1-70K protein, are important autoantigens in patients with systemic lupus erythematosus (SLE) and mixed connective tissue disease (MCTD). Here we describe for the first time the selection and characterization of recombinant human anti-U1-70K single chain autoantibody fragments (anti-hU1-70K scFv) from autoimmune patient-derived phage display antibody libraries. All scFv specifically recognize parts of the hU1-70K protein and its apoptotic 40-kDa cleavage product. In Western blotting assays a number of scFv preferentially recognize the 40-kDa apoptotic cleavage fragment of the U1-70K protein, suggesting a possible involvement of this apoptotic cleavage product in the autoimmune response of patients. The germline gene usage of these recombinant autoantibodies was also determined. Using several U1-70K deletion and point mutants of both human (h) and Drosophila melanogaster (Dm) origin, it was established that the U1-70K epitope that is recognized by the anti-hU1-70K scFv is located within the RNA binding domain.

  • 3.
    Georg, Carina
    et al.
    Department of Learning, Informatics, Management and Ethics, Sweden.
    Karlgren, Klas
    Department of Learning, Informatics, Management and Ethics, Sweden.
    Ulfvarson, Johanna
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden.
    Jirwe, Maria
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden.
    Welin, Elisabet
    Division of Nursing Science, Department of Medical and Health Sciences, Linköping University, Linköping, Sweden.
    A Rubric to Assess Students' Clinical Reasoning When Encountering Virtual Patients2018In: Journal of Nursing Education, ISSN 0148-4834, E-ISSN 1938-2421, Vol. 57, no 7, p. 408-415Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Training with virtual patients has been proposed as a suitable learning activity to improve clinical reasoning skills for nursing students. However, published instruments with the capacity to assess students' reasoning process in the encounter with virtual patients are lacking.

    METHOD: Deductive and abductive analyses were used to adapt the Lasater Clinical Judgment Rubric (LCJR) to assess nursing students' clinical reasoning skills in the encounter with virtual patients. The new rubric's ability to capture nursing students' clinical reasoning processes was tested using deductive analysis and statistical analysis.

    RESULTS: A grading rubric for virtual patients, the vpLCJR, was developed. Cronbach's alpha showed .892, indicating good internal consistency.

    CONCLUSION: The rubric vpLCJR, which deconstructs aspects of clinical reasoning for both students and faculty members, can be used to clarify expectations, assess students' clinical reasoning process, and provide feedback for learning when nursing students encounter virtual patients. [J Nurs Educ. 2018;57(7):408-415.].

  • 4.
    Georg, Carina
    et al.
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden; Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Huddinge, Sweden.
    Welin, Elisabet
    Örebro University, School of Health Sciences.
    Jirwe, Maria
    Department for Health Promoting Science, Sophiahemmet University, Stockholm, Sweden; Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Huddinge, Sweden.
    Karlgren, Klas
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden; Department of Research, Education, Development and Innovation, The Södersjukhuset Hospital, Stockholm, Sweden.
    Ulfvarson, Johanna
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Huddinge, Sweden.
    Psychometric properties of the virtual patient version of the Lasater Clinical Judgment Rubric2019In: Nurse Education in Practice, ISSN 1471-5953, E-ISSN 1873-5223, Vol. 38, p. 14-20Article in journal (Refereed)
    Abstract [en]

    A number of studies attest to the effectiveness of virtual patients in fostering and assessing students' development of clinical reasoning. An objective assessment of students' clinical reasoning is, however, challenging. This study focused on determining the psychometric properties of the virtual patient version of the Lasater Clinical Judgment Rubric, a rubric that is aimed at assessing nursing students' clinical reasoning processes when encountering virtual patients. A nonexperimental design was used in which data from 125 students' reflections on solving two different virtual patient scenarios were included in the analysis. First, a deductive content analysis was conducted using the categories of the rubric as a lens. After that, each student's performance was quantified according to the different levels of the rubric. Exploratory factor analysis and test of normality and reliability, including the Kaiser-Meyer-Olkin test, Bartlett's test, the Shapiro-Wilk test, and Cronbach's alpha were used in the analysis. The result suggested three factors: "Understanding the patient", "Care planning" and "Reflecting" that explained 81.8% of the variance. Cronbach's alpha was 0.931. The result showed the rubric to be a valid assessment instrument for assessing nursing students' clinical reasoning when encountering virtual patients.

  • 5.
    Gunnarsson, Iva
    et al.
    Karolinska University Hospital at Solna, Stockholm, Sweden.
    Sundelin, Birgitta
    Karolinska University Hospital at Solna, Stockholm, Sweden.
    Jónsdóttir, Thorunn
    Karolinska University Hospital at Solna, Stockholm, Sweden.
    Jacobson, Stefan H.
    Danderyd University Hospital, Stockholm, Sweden.
    Henriksson, Elisabet Welin
    Karolinska University Hospital at Solna, Stockholm, Sweden.
    van Vollenhoven, Ronald F.
    Karolinska University Hospital at Solna, Stockholm, Sweden.
    Histopathologic and clinical outcome of rituximab treatment in patients with cyclophosphamide-resistant proliferative lupus nephritis2007In: Arthritis and Rheumatism, ISSN 0004-3591, E-ISSN 1529-0131, Vol. 56, no 4, p. 1263-1272Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Rituximab is a monoclonal antibody directed against the CD20 marker of B cells. Because of its ability to deplete B lymphocytes, it has been suggested that the drug could be of benefit in B cell-dependent diseases, including systemic lupus erythematosus (SLE). The purpose of this study was to investigate the histopathologic and clinical effects of combination treatment with rituximab and cyclophosphamide (CYC) in patients with CYC-resistant proliferative lupus nephritis.

    METHODS: Seven female patients with proliferative lupus nephritis were treated with rituximab in combination with CYC. Renal biopsies were performed before treatment and during followup. SLE activity was evaluated by the Systemic Lupus Erythematosus Disease Activity Index (SLEDAI) and the British Isles Lupus Assessment Group index. In 6 of the 7 patients, immunostaining of lymphocyte subpopulations in the renal tissue was performed before treatment and during followup.

    RESULTS: At 6 months of followup, significant clinical improvement was noted, with a reduction in SLEDAI scores (from a mean of 15 to 3), anti-double-stranded DNA antibody levels (from a mean of 174 IU/ml to 56 IU/ml), and anti-C1q antibody levels (from a mean of 35 units/ml to 22 units/ml). On repeat renal biopsy, improvement in the histopathologic class of nephritis occurred in a majority of patients, and a decrease in the renal activity index was noted (from 6 to 3). A reduction in the number of CD3, CD4, and CD20 cells in the renal interstitium was noted in 50% of the patients on repeat biopsy.

    CONCLUSION: At 6 months of followup, all patients had responded both clinically and histopathologically to combination therapy. For patients with proliferative lupus nephritis who fail to respond to conventional immunosuppressive therapy including CYC, combined treatment with rituximab and CYC may constitute a new treatment option.

  • 6.
    Henriksson, Elisabet Welin
    et al.
    Department of Cell and Molecular Biology, Laboratory of Medical Cell Genetics, Medical Nobel Institute, Karolinska Institute, Stockholm, Sweden.
    Pettersson, Ingvar
    Autoepitope-mapping of the U1-70K protein with human-Drosophila chimeric proteins1997In: Journal of Autoimmunity, ISSN 0896-8411, E-ISSN 1095-9157, Vol. 10, no 6, p. 559-568Article in journal (Refereed)
    Abstract [en]

    The 70K protein is the major autoantigen for anti-RNP autoantibodies directed against the U1 small nuclear ribonucleoprotein complex particle. The U1-70K protein has been epitope-mapped by various groups, and a major antigenic region of about 70 amino acids has been found which overlaps with the RNA binding motif. Attempts to map the major antigenic region further with smaller cloned fragments or with peptides have been hampered by total loss of, or strongly reduced, antigenicity. Thus the major antigenic region is composed of conformational epitopes and a detailed analysis of particular epitopes has not been possible. In the present work, we examine the antigenicity of chimeric proteins assembled from the highly conserved Drosophila melanogaster 70K proteins grafted with human 70K segments. With this approach, the effects on antigenicity of exchanging particular segments can be assayed with the overall structure of the major antigenic domain kept relatively constant. Our results, supported by depletion experiments, show that residues 99-128 from the human protein are essential for recognition by both human and canine anti-RNP autoantibodies. These residues have to be presented in a manner that allows correct conformational interaction between the different protein domains.

  • 7.
    Henriksson, Elisabet Welin
    et al.
    Department of Cell and Molecular Biology, Laboratory of Medical Cell Genetics, Medical Nobel Institute, Karolinska Institute, Stockholm, Sweden.
    Pettersson, Ingvar
    Human anti-RNP sera contain both human-specific and cross-reactive anti-70K autoantibodies1996In: Journal of Autoimmunity, ISSN 0896-8411, E-ISSN 1095-9157, Vol. 9, no 4, p. 551-559Article in journal (Refereed)
    Abstract [en]

    The U1 snRNP (small nuclear ribonucleoprotein complex) associated 70K protein is the main autoantigen for the anti-RNP autoantibodies which are directed against the U1 snRNP particle. The major antigenic region of the 70K protein has by various laboratories been mapped to an RNA binding domain required for the 70K-U1 snRNA interaction. We have used recombinant proteins comprising this region from the human and the Drosophila melanogaster 70K proteins to examine the species specificity of the human anti-70K autoantibodies found in 42 patient sera. Most, but not all, anti-70K positive sera in this cross-sectional sample contained both human 70K specific anti-bodies and Drosophila 70K reactive antibodies. Results of a longitudinal follow-up of 14 patients indicated that the cross-reactive anti-70K antibodies developed secondarily to the establishment of a species-specific anti-70K reaction. In a fraction of the patient sera this broadening of the response never occurred. Taken together, the data in this study support the hypothesis that the endogenous human 70K protein is the immunogen driving the production of anti-70K autoantibodies.

  • 8.
    Jónsdóttir, Thorunn
    et al.
    Department of Rheumatology, Karolinska University Hospital, Stockholm, Sweden.
    Gunnarsson, Iva
    Department of Rheumatology, Karolinska University Hospital, Stockholm, Sweden.
    Risselada, Anke
    Department of Rheumatology, Karolinska University Hospital, Stockholm, Sweden.
    Welin Henriksson, Elisabet
    Department of Rheumatology, Karolinska University Hospital, Stockholm, Sweden.
    Klareskog, Lars
    Department of Rheumatology, Karolinska University Hospital, Stockholm, Sweden.
    van Vollenhoven, Ronald F
    Department of Rheumatology, Karolinska University Hospital, Stockholm, Sweden.
    Treatment of refractory SLE with rituximab plus cyclophosphamide: clinical effects, serological changes, and predictors of response2008In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 67, no 3, p. 330-334Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To evaluate efficacy, serological responses, and predictors of response in patients with severe and refractory systemic lupus erythematosus (SLE) treated with rituximab plus cyclophosphamide.

    METHODS: 16 patients entered a treatment protocol using rituximab plus cyclophosphamide. Disease activity was assessed by the SLE disease activity index (SLEDAI) and by the British Isles Lupus Assessment Group (BILAG) index.

    RESULTS: At six months follow up, mean SLEDAI values decreased significantly from (mean (SD)) 12.1 (2.2) to 4.7 (1.1). Clinical improvement (50% reduction in SLEDAI) occurred in all but three patients. All but one patient responded according to BILAG. Remission defined as SLEDAI <3 was achieved in nine of 16 patients. Isotype analysis of anti-dsDNA antibodies revealed preferential decreases of IgG and IgA, but not IgM. Higher absolute numbers of CD19+ cells at baseline were correlated with shorter depletion time (r = -0.6).

    CONCLUSIONS: The majority of patients improved following rituximab plus cyclophosphamide. The differential downregulation of anti-DNA of the IgG and IgA but not the IgM isotypes supports the hypothesis that cells producing pathogenic autoantibodies are preferentially targeted by the treatment. The fact that greater absolute numbers of CD19+ cells at baseline predict a less impressive clinical and serological response suggests that more flexible dosing could be advantageous.

  • 9.
    Jónsdóttir, Thórunn
    et al.
    Department of Medicine, Karolinska University Hospital, Karolinska Institutet, Stockholm, Sweden.
    Sundelin, Birgitta
    Department of Pathology and Cytology, Karolinska University Hospital, Karolinska Institutet, Stockholm, Swede.
    Welin Henriksson, Elisabet
    Department of Neurobiology, Care Sciences and Society, Karolinska University Hospital, Karolinska Institutet, Stockholm, Sweden.
    van Vollenhoven, Ronald F.
    Department of Medicine, Karolinska University Hospital, Karolinska Institutet, Stockholm, Sweden.
    Gunnarsson, Iva
    Department of Medicine, Karolinska University Hospital, Karolinska Institutet, Stockholm, Sweden.
    Rituximab-treated membranous lupus nephritis: clinical outcome and effects on electron dense deposits2011In: Annals of the Rheumatic Diseases, ISSN 0003-4967, E-ISSN 1468-2060, Vol. 70, no 6, p. 1172-3Article in journal (Refereed)
  • 10.
    Jónsdóttir, Thórunn
    et al.
    Department of Medicine, Rheumatology Unit, arolinska University Hospital, Karolinska Institutet, Stockholm, Sweden.
    Zickert, Agneta
    Department of Medicine, Rheumatology Unit, arolinska University Hospital, Karolinska Institutet, Stockholm, Sweden.
    Sundelin, Birgitta
    Department of Oncology and Pathology, Pathology and Cytology, Karolinska University Hospital, Karolinska Institutet, Stockholm, Sweden.
    Henriksson, Elisabet Welin
    Department of Neurobiology, Care Sciences and Society, Karolinska University Hospital, Karolinska Institutet, Stockholm, Sweden.
    van Vollenhoven, Ronald F.
    Unit for Clinical Therapy Research, Inflammatory Diseases (ClinTRID), Karolinska University Hospital, Karolinska Institutet, Stockholm, Sweden.
    Gunnarsson, Iva
    Department of Medicine, Rheumatology Unit, arolinska University Hospital, Karolinska Institutet, Stockholm, Sweden.
    Long-term follow-up in lupus nephritis patients treated with rituximab: clinical and histopathological response2013In: Rheumatology, ISSN 1462-0324, E-ISSN 1462-0332, Vol. 52, no 5, p. 847-855Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To investigate the long-term clinical, histological and serological affects of B-cell-depleting therapy (BCDT) in patients with LN refractory to conventional treatment.

    METHODS: Twenty-five patients, followed for a mean time of 36 months (9-95 months), were included. Renal disease activity was evaluated with the BILAG index and renal response was determined according to the LN European consensus statement. Renal biopsies were performed for histological evaluation at baseline and follow-up.

    RESULTS: Partial response (PR) or complete renal response (CR) was observed in 22 of 25 after a median of 12 months. Sixteen patients achieved CR after a median of 24 months. Six patients experienced a renal relapse. Proteinuria decreased significantly (P = 0.0002) from baseline to 36 months. A noteworthy histological improvement was seen in nearly all patients with a significant reduction in activity index (P = 0.01). Longer depletion time and low baseline values of IgM were indicative of achieving clinical remission during the first year after treatment (P = 0.03 and P = 0.04, respectively).

    CONCLUSION: In therapy-resistant LN, BCDT induced clinical and histological improvements in the majority of patients. Transition from PR to CR was mainly seen during the second year of follow-up. Patients with longer depletion time and low baseline levels of IgM were more likely to gain a faster remission, suggesting that the clinical benefit may be linked to suppression of autoreactive plasmablasts. Although formal evidence of BCDT in LN is lacking, our data may provide guidance to clinicians considering therapeutic options in patients with refractory LN.

  • 11.
    Lööf, Helena
    et al.
    Sophiahemmet University, Stockholm, Sweden; Department of Clinical Sciences, Danderyd Hospital, Karolinska Institutet, Stockholm, Sweden.
    Demmelmaier, Ingrid
    Department of Neurobiology, Division of Physiotherapy, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Henriksson, Elisabet Welin
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden; Department of Rheumatology, Karolinska University Hospital, Stockholm, Sweden.
    Lindblad, Staffan
    Department of Learning Informatics Management and Ethics, Medical Management Centre, Karolinska Institutet, Stockholm, Sweden.
    Nordgren, Birgitta
    Department of Neurobiology, Division of Physiotherapy, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Opava, Christina Helging
    Department of Neurobiology, Division of Physiotherapy, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; Department of Rheumatology, Karolinska University Hospital, Stockholm, Sweden.
    Johansson, Unn-Britt
    Sophiahemmet University, Stockholm, Sweden; Department of Clinical Sciences, Danderyd Hospital, Karolinska Institutet, Stockholm, Sweden.
    Fear-avoidance beliefs about physical activity in adults with rheumatoid arthritis2015In: Scandinavian Journal of Rheumatology, ISSN 0300-9742, E-ISSN 1502-7732, Vol. 44, no 2, p. 93-89Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: The aim of this study was to describe fear-avoidance beliefs about physical activity and explore how these beliefs correlate with sociodemographic, disease-specific, and psychosocial factors in adults with rheumatoid arthritis (RA).

    METHOD: This cross-sectional study is part of the Physical Activity in Rheumatoid Arthritis (PARA) 2010 study. The study participants (n = 2351) were identified through the Swedish Rheumatology Quality (SRQ) registries from six rheumatology clinics in Sweden. Univariate and backwards stepwise logistic regressions were performed.

    RESULTS: Stepwise logistic regressions showed that male gender [odds ratio (OR) 1.55, 95% confidence interval (CI) 1.26-1.91] and having a below average income (OR 1.35, 95% CI 1.12-1.63) were associated with an increased risk of high scores on the modified Fear Avoidance-Belief Questionnaire (mFABQ). The two disease-specific factors most indicative of high mFABQ scores were high level of pain (OR 1.99, 95% CI 1.40-2.84) and poor health (OR 1.59, 95% CI 1.10-2.29). With regard to psychosocial factors, low health-related quality of life (HRQoL; OR 0.44, 95% CI 0.35-0.55) and a low score on the Exercise Self-Efficacy Scale (ESES; OR 0.66, 95% CI 0.52-0.82) were significantly associated with a high mFABQ score. The model fit was 0.27 (Nagelkerke's R(2)).

    CONCLUSIONS: High fear-avoidance beliefs about physical activity in patients with RA were found to be associated with being male and having a below average income, a high level of pain, poor health, a low HRQoL, and low ESES score. Additional research is warranted for adults with RA to capture the multiple potential correlates to fear-avoidance beliefs about physical activity.

  • 12.
    Lööf, Helena
    et al.
    Sophiahemmet University, Stockholm, Sweden; Department of Clinical Science and Education, Södersjukhuset, Karolinska Institutet, Stockholm, Sweden.
    Johansson, Unn-Britt
    Sophiahemmet University, Stockholm, Sweden; Department of Clinical Science and Education, Södersjukhuset, Karolinska Institutet, Stockholm, Sweden.
    Henriksson, Elisabet Welin
    Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden; Department of Rheumatology, Karolinska University Hospital, Stockholm, Sweden.
    Lindblad, Staffan
    Department of Learning Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Bullington, Jennifer
    Department of Health Care Sciences, Ersta University College, Stockholm, Sweden.
    Body awareness in persons diagnosed with rheumatoid arthritis2014In: International Journal of Qualitative Studies on Health and Well-being, ISSN 1748-2623, E-ISSN 1748-2631, Vol. 9, no 1, article id 24670Article in journal (Refereed)
    Abstract [en]

    Living with rheumatoid arthritis (RA) poses physiological and psychological demands on a person. RA is a autoimmune disease that can cause pain, disability, and suffering. The ability to notice bodily inner sensations and stimuli (body awareness, BA) is described in the literature in ways that could have either a positive or a negative impact on a person's health. The concept of BA is complex and a thorough understanding is needed about what BA means from the patient's perspective. This study was therefore conducted to acquire greater insight into this phenomenon. The study is grounded in a phenomenological life-world perspective. Eighteen narrative interviews were conducted in patients (age range 23-78 years) with RA. The interviews were analyzed using the Empirical Phenomenological Psychological method. General characteristics were found running through all 18 interviews, indicating that the disease resulted in a higher degree of negatively toned BA. BA was either a reactive process of searching or controlling after disease-related symptoms or a reactive process triggered by emotions. BA was an active process of taking an inventory of abilities. All participants had the ability to shift focus from BA to the outside world. Four typologies were identified: "A reactive process on symptoms," "A reactive process on emotional triggers," "An active process of taking an inventory of abilities," and "A shifting from BA to the outside world." In conclusion, because BA can be both positively and negatively toned, health care professionals must have a good understanding of when BA is positive and when it is negative in relation to the patient. RA had caused a higher degree of negatively toned BA. Thus, the ability to shift attention from BA to activity in the outside world could sometimes be beneficial for the patient's general health.

  • 13.
    Lööf, Helena
    et al.
    Sophiahemmet University College, Stockholm, Sweden; Division of Medicine, Department of Clinical Sciences, Karolinska Institutet, Danderyd Hospital, Stockholm, Sweden.
    Johansson, Unn-Britt
    Sophiahemmet University College, Stockholm, Sweden; Division of Medicine, Department of Clinical Sciences, Karolinska Institutet, Danderyd Hospital, Stockholm, Sweden.
    Henriksson, Elisabet Welin
    Division of Nursing, Department of Neurobiology, Care Sciences and Society (NVS), Karolinska Institutet, Stockholm, Sweden; Rheumatology Clinic, Karolinska University Hospital, Stockholm, Sweden.
    Lindblad, Staffan
    Rheumatology Clinic, Karolinska University Hospital, Stockholm, Sweden; Department of Learning Informatics Management and Ethics, Karolinska Institutet, Medical Management Center, Stockholm, Sweden.
    Saboonchi, Fredrik
    Sophiahemmet University College, Stockholm, Sweden; Division of Medicine, Department of Clinical Sciences, Karolinska Institutet, Danderyd Hospital, Stockholm, Sweden; Stockholm University, Stockholm, Sweden.
    Development and psychometric testing of the Swedish version of the Body Awareness Questionnaire2013In: Journal of Advanced Nursing, ISSN 0309-2402, E-ISSN 1365-2648, Vol. 69, no 7, p. 1643-1651Article in journal (Refereed)
    Abstract [en]

    AIM: This paper is a report of the development and psychometric testing of the Swedish version of the Body Awareness Questionnaire to measure bodily focus of attention.

    BACKGROUND: The Body Awareness Questionnaire has been identified as an instrument with excellent psychometric properties within the concept of body awareness. It has been used in both research and clinical settings in different contexts. However, a validated Swedish version is not available.

    METHOD: A cross-sectional design was applied for adaptation of the Body Awareness Questionnaire and psychometric validation. Data were collected between autumn 2009 and spring 2011 from 120 patients diagnosed with rheumatoid arthritis, and from 120 students. The 'concurrent think aloud' method was used in a pre-test to determine the usability of the questionnaire. Cronbach's alpha was used to test the internal consistency, and confirmatory factor analysis was performed to test the construct validity.

    RESULTS: According to the confirmatory factor analysis, neither the one-factor model nor the four-factor model tested in this study fulfilled the pre-specified criteria in accordance with the Comparative Fit Index, Standardized Root Mean Squared Residual and the Root Mean Square Error of Approximation. The value of Cronbach's alpha for the Swedish version of the Body Awareness Questionnaire was satisfactory.

    CONCLUSION: Our results indicate that the two models tested in this study do not provide a good fit to the observed data. Further refinement and testing of the Swedish version of the Body Awareness Questionnaire is therefore required. The concept of body awareness may be useful in the management of chronic disease and can be addressed in nursing.

  • 14.
    Lööf, Helena
    et al.
    Sophiahemmet University, Stockholm, Sweden; Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital, Division of Medicine, Stockholm, Sweden.
    Johansson, Unn-Britt
    Sophiahemmet University, Stockholm, Sweden; Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital, Division of Medicine, Stockholm, Sweden.
    Henriksson, Elisabet Welin
    Karolinska Institutet, Division of Nursing, Department of Neurobiology and Rheumatology Unit, Karolinska Hospital, Stockholm, Sweden.
    Lindblad, Staffan
    Karolinska Institutet, Department of Learning Informatics, Management and Ethics, Stockholm, Sweden.
    Saboonchi, Fredrik
    Sophiahemmet University, Stockholm, Sweden; Karolinska Institutet, Department of Neuroscience, Division of Insurance Medicine, Stockholm, Sweden; University of Stockholm, Stress Research Institute, Stockholm, Sweden; Red Cross University College, Stockholm, Sweden.
    Pain and fatigue in adult patients with rheumatoid arthritis: Association with body awareness, demographic, disease-related, emotional and psychosocial factors2013In: Open Journal of Nursing, ISSN 2162-5336, E-ISSN 2162-5344, Vol. 3, no 2, p. 293-300, article id 32989Article in journal (Refereed)
    Abstract [en]

    Background: Patients and clinicians report pain and fatigue as key outcome measures in rheumatoid arthritis. Fatigue and pain are a major concern to patients. Aim: The objective of this study was to examine fatigue and pain in adult patients with rheumatoid arthritis (RA) and to investigate the association between pain and fatigue with body awareness, demographic, disease-related, emotional and psychosocial factors.

    Method: Data were collected from a sample of patients with RA (n = 120) recruited from a Rheumatology clinic in a large university hospital in Stockholm, Sweden. Eligible for inclusion were patients between 20 - 80 years of age and with a confirmed diagnosis of RA. Fatigue was measured using the Multidimensional Assessment of Fatigue (MAF) scale, while the Visual Analogue Scale (VAS) was used to assess components of pain. A multiple stepwise regression analysis was performed to evaluate factors related to fatigue and pain. In the first step a univariate analysis of variance (ANOVA) was used for all relevant independent factors. In the next step backwards stepwise regression was applied.

    Result: Fatigue was significantly associated with the Disease Activity Score 28-joints (DAS 28) (p = 0.049), the Body Awareness Questionnaire (BAQ) (p = 0.006), the Positive Affect (PA) scale (p = 0.008) and no smoking (p = 0.021). Pain was significantly associated with the EuroQol EQ-5D (p = 0.008) and the DAS 28 (p = 0.001). The adjusted R-square was 28.6% for fatigue and 50.0% for pain. Conclusion: This study clearly demonstrates that fatigue and pain in patients with RA appear to be associated with disease-related factors. Furthermore, fatigue was related to body awareness and emotional factors, and pain was related to health related quality of life.

  • 15.
    Manninen, Katri
    et al.
    Department of Learning, Karolinska Institutet, Informatics, Management and Ethics, Stockholm, Sweden.
    Henriksson, Elisabet Welin
    Department of Neurobiology, Karolinska Institutet; Care Sciences and Society, Stockholm, Sweden.
    Scheja, Max
    Department of Education, Stockholm University, Stockholm, Sweden.
    Silén, Charlotte
    Department of Learning, Karolinska Institutet, Informatics, Management and Ethics, Stockholm, Sweden.
    Patients' approaches to students' learning at a clinical education ward: an ethnographic study2014In: BMC Medical Education, ISSN 1472-6920, E-ISSN 1472-6920, Vol. 14, article id 131Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: It is well known that patients' involvement in health care students' learning is essential and gives students opportunities to experience clinical reasoning and practice clinical skills when interacting with patients. Students encounter patients in different contexts throughout their education. However, looking across the research providing evidence about learning related to patient-student encounters reveals a lack of knowledge about the actual learning process that occurs in encounters between patients and students. The aim of this study was to explore patient-student encounters in relation to students' learning in a patient-centered health-care setting.

    METHODS: An ethnographic approach was used to study the encounters between patients and students. The setting was a clinical education ward for nursing students at a university hospital with eight beds. The study included 10 observations with 11 students and 10 patients. The observer followed one or two students taking care of one patient. During the fieldwork observational and reflective notes were taken. After each observation follow-up interviews were conducted with each patient and student separately. Data were analyzed using an ethnographic approach.

    RESULTS: The most striking results showed that patients took different approaches in the encounters with students. When the students managed to create a good atmosphere and a mutual relationship, the patients were active participants in the students' learning. If the students did not manage to create a good atmosphere, the relationship became one-way and the patients were passive participants, letting the students practice on their bodies but without engaging in a dialogue with the students.

    CONCLUSIONS: Patient-student encounters, at a clinical education ward with a patient-centred pedagogical framework, can develop into either a learning relationship or an attending relationship. A learning relationship is based on a mutual relationship between patients and students resulting in patients actively participating in students' learning and they both experience it as a joint action. An attending relationship is based on a one-way relationship between patients and students resulting in patients passively participating by letting students to practice on their bodies but without engaging in a learning dialogue with the students.

  • 16.
    Manninen, Katri
    et al.
    Karolinska University Hospital, Department of Infectious Diseases, Stockholm, Sweden.
    Henriksson, Elisabet Welin
    Karolinska Institutet, Department of Neurobiology, Care Sciences and Society, Stockholm, Sweden.
    Scheja, Max
    Stockholm University, Faculty of Social Science, Department of Education, Stockholm, Sweden.
    Silén, Charlotte
    Karolinska Institutet, Department of Learning, Informatics, Management and Ethics, Stockholm, Sweden.
    Supervisors' pedagogical role at a clinical education ward: an ethnographic study2015In: BMC Nursing, ISSN 1472-6955, E-ISSN 1472-6955, Vol. 14, article id 55Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Clinical practice is essential for health care students. The supervisor's role and how supervision should be organized are challenging issues for educators and clinicians. Clinical education wards have been established to meet these challenges and they are units with a pedagogical framework facilitating students' training in real clinical settings. Supervisors support students to link together theoretical and practical knowledge and skills. From students' perspectives, clinical education wards have shown potential to enhance students' learning. Thus there is a need for deeper understanding of supervisors' pedagogical role in this context. We explored supervisors' approaches to students' learning at a clinical education ward where students are encouraged to independently take care of patients.

    METHOD: An ethnographic approach was used to study encounters between patients, students and supervisors. The setting was a clinical education ward for nursing students at a university hospital. Ten observations with ten patients, 11 students and five supervisors were included in the study. After each observation, individual follow-up interviews with all participants and a group interview with supervisors were conducted. Data were analysed using an ethnographic approach.

    RESULTS: Supervisors' pedagogical role has to do with balancing patient care and student learning. The students were given independence, which created pedagogical challenges for the supervisors. They handled these challenges by collaborating as a supervisory team and taking different acts of supervision such as allowing students their independence, being there for students and by applying patient-centredness.

    CONCLUSION: The supervisors' pedagogical role was perceived as to facilitate students' learning as a team. Supervisors were both patient- and student-centred by making a nursing care plan for the patients and a learning plan for the students. The plans were guided by clinical and pedagogical guidelines, individually adjusted and followed up.

  • 17.
    Manninen, Katri
    et al.
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Scheja, Max
    Department of Education, Faculty of Social Science, Stockholm University, Stockholm, Sweden.
    Henriksson, Elisabet Welin
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Silén, Charlotte
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Self-centeredness or patient-centeredness–final year nursing students’ experiences of learning at a clinical education ward2013In: Journal of Nursing Education and Practice, ISSN 1925-4040, E-ISSN 1925-4059, Vol. 3, no 12, p. 187-198Article in journal (Refereed)
    Abstract [en]

    Background: Different types of clinical education wards with the aim of facilitating transition from student to professional have been established giving students more autonomy and responsibility. Studies report positive effects but deeper understanding concerning how clinical education wards can contribute to learning for students nearing graduation is needed. Aim: To explore final year nursing students’ experiences of learning when they are supported to take care of patients independently.

    Methods: The context for this study was a clinical education ward for nursing students at a university hospital in Sweden. Individual and group interviews with 18 students of 29 eligible students were conducted after their clinical practice. The data was analyzed using qualitative content analysis with a focus on students’ experiences of their encounters with patients, supervisors, students and other professionals.

    Results: The two main themes appeared as important aspects influencing final year students’ learning, uncertainty as a threshold and experiencing engagement. Sub-themes characterizing uncertainty as a threshold were self-centeredness and ambivalence describing the patient from the perspective of performing nursing tasks. Sub-themes characterizing experiencing engagement were creating mutual relationship and professional development. Caring for patients with extensive need for nursing care helped the students to become patient-centered and overcome the threshold, experience engagement and authenticity in learning the profession.

    Conclusions: A clinical education ward may enhance the students’ experience of both external and internal authenticity enabling meaningful learning and professional development. It is important to acknowledge final year nursing students’ need for both challenges and support in the stressful transition from student to professional. Therefore, an explicit pedagogical framework based on patient-centered care and encouraging students to take responsibility should be used to help the students to overcome self-centeredness and to focus on the patients’ needs and nursing care.

  • 18.
    Manninen, Katri
    et al.
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Welin Henriksson, Elisabet
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Scheja, Max
    Faculty of Social Science, Department of Education, Stockholm University, Stockholm, Sweden.
    Silén, Charlotte
    Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden.
    Authenticity in learning: nursing students' experiences at a clinical education ward2013In: Health Education, ISSN 0965-4283, E-ISSN 1758-714X, Vol. 113, no 2, p. 132-143Article in journal (Refereed)
    Abstract [en]

    Purpose: This study aims to explore and understand first year nursing students' experiences of learning at a clinical education ward.

    Design/methodology/approach: The setting is a clinical education ward for nursing students at a department of infectious diseases. A qualitative study was carried out exploring students' encounters with patients, supervisors, students and other health care professionals. A total of 19 students were interviewed. Data were analyzed using qualitative content analysis investigating both the manifest and the latent content.

    Findings: The most important components in students' learning are mutual relationships and a sense of belongingness. A mutual relationship between the students and the patients is created and becomes the basis of students' learning. Belongingness means the students' experience of being for real a part of the team taking care of the patients.

    Research limitations/implications: The study, while linked to a particular teaching hospital, offers insights of more general nature by linking the findings to a theory of transformative learning.

    Originality/value: This study adds a deeper understanding of students' perspectives of significant characteristics to take into account when organizing clinical practice in health care education. Being entrusted and supported by a team of supervisors to take care of patients at a clinical education ward early in the education program provides an experience of internal and external authenticity. The students learn from, with and through the patients, which contributes to meaningful learning, understanding nursing, and professional development.

  • 19.
    Parodis, Ioannis
    et al.
    Division of Rheumatology, Department of Medicine, Karolinska Institutet, Stockholm, Sweden; Rheumatology, Karolinska University Hospital, Stockholm, Sweden.
    Lopez Benavides, Angie H
    Division of Rheumatology, Department of Medicine, Karolinska Institutet, Stockholm, Sweden; Rheumatology, Karolinska University Hospital, Stockholm, Sweden; Department of Rheumatology, Odense University Hospital, Odense, Denmark.
    Zickert, Agneta
    Division of Rheumatology, Department of Medicine, Karolinska Institutet, Stockholm, Sweden; Rheumatology, Karolinska University Hospital, Stockholm, Sweden.
    Pettersson, Susanne
    Division of Rheumatology, Department of Medicine, Karolinska Institutet, Stockholm, Sweden; Rheumatology, Karolinska University Hospital, Stockholm, Sweden; Division of Physiotherapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Möller, Sonia
    Division of Rheumatology, Department of Medicine, Karolinska Institutet, Stockholm, Sweden; Rheumatology, Karolinska University Hospital, Stockholm, Sweden.
    Welin Henriksson, Elisabet
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; Division of Nursing Science, Department of Medical and Health Sciences, Linköping University, Linköping, Sweden.
    Voss, Anne
    Department of Rheumatology, Odense University Hospital, Odense, Denmark.
    Gunnarsson, Iva
    Division of Rheumatology, Department of Medicine, Karolinska Institutet, Stockholm, Sweden; Rheumatology, Karolinska University Hospital, Stockholm, Sweden.
    The impact of belimumab and rituximab on health-related quality of life in patients with systemic lupus erythematosus2019In: Arthritis care & research, ISSN 2151-464X, E-ISSN 2151-4658, Vol. 71, no 6, p. 811-821Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Accumulating evidence supports an impaired health-related quality of life (HRQoL) in patients with systemic lupus erythematosus (SLE). We investigated the effects of two biologic treatments on SLE patients' HRQoL.

    METHODS: SLE patients from the Karolinska University Hospital treated with belimumab (n=34) or rituximab (n=35) were included; Swedish population-based age- and sex-matched norms served as controls. Data were collected prospectively at treatment initiation and at months 3, 6, 12 and 24; these included the SF-36, FACIT-Fatigue, EQ-5D, and Stanford HAQ-DI.

    RESULTS: Substantial decrements from Swedish norms were observed across all SF-36 domains at baseline. Belimumab-treated patients reported gradual improvements in the SF-36 physical component summary (significant from month 12; P=0.023) and FACIT-Fatigue (significant by month 24; P=0.001), no changes in EQ-5D scores, and improvements in HAQ-DI by month 6 (P=0.014). Rituximab-treated patients showed rapid improvements in the SF-36 mental component summary and FACIT-Fatigue by month 3 (P=0.031 and P=0.007, respectively), as well as improvements in EQ-5D at month 6 (P=0.016) and HAQ-DI at month 3 (P=0.033). Based on baseline evaluations, patients receiving antimalarial agents (n=33) performed better in the SF-36 social functioning (P=0.022) and mental health (P=0.023) domains compared to patients who were not (n=36).

    CONCLUSION: Our findings corroborated considerable HRQoL impairments in SLE patients. Patients' perceptions of HRQoL showed discrepant patterns over time in the two treatment groups, and could provide additional information along with the clinical evaluation of biologic therapy in SLE. Survey on the effects of antimalarial agents on SLE patients' HRQoL in larger cohorts is merited.

  • 20.
    Pettersson, Susanne
    et al.
    Rheumatology Clinic, Karolinska University Hospital, Stockholm, Sweden Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden .
    Boström, Carina
    Division of Physiotherapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Eriksson, Karin
    Division of Physiotherapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Svenungsson, Elisabet
    Department of Medicine, Unit of Rheumatology, Karolinska University Hospital, Karolinska Institutet, Stockholm, Sweden.
    Gunnarsson, Iva
    Department of Medicine, Unit of Rheumatology, Karolinska University Hospital, Karolinska Institutet, Stockholm, Sweden.
    Welin Henriksson, Elisabet
    Rheumatology Clinic, Karolinska University Hospital, Stockholm, Sweden Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Lifestyle habits and fatigue among people with systemic lupus erythematosus and matched population controls2015In: Lupus, ISSN 0961-2033, E-ISSN 1477-0962, Vol. 24, no 9, p. 955-965Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The objective of this paper is to identify clusters of fatigue in patients with systemic lupus erythematosus (SLE) and matched controls, and to analyze these clusters with respect to lifestyle habits, health-related quality of life (HRQoL), anxiety and depression.

    METHODS: Patients with SLE (n = 305) and age- and gender-matched population controls (n = 311) were included. Three measurements of fatigue (Fatigue Severity Scale (FSS), Vitality (VT, from SF-36) and Multidimensional Assessment of Fatigue scale (MAF) and hierarchic cluster analysis were used to define clusters with different degrees of fatigue. Lifestyle habits were investigated through questionnaires. HRQoL was assessed with the SF-36 and anxiety/depression with the Hospital Anxiety and Depression Scale.

    RESULTS: Three clusters, denominated "High," "Intermediate" and "Low" fatigue clusters, were identified. The "High" contained 80% patients, and 20% controls (median; VT 25, FSS 5.8, MAF 37.4). These had the most symptoms of depression (51%) and anxiety (34%), lowest HRQoL (p < 0.001) and they exercised least frequently. The "Intermediate" (48% patients and 52% controls) (median; VT 55, FSS 4.1, MAF 23.5) had similarities with the "Low" regarding sleep/rest whereas social status and smoking were closer to the "High." The"Low" contained 22% patients and 78% controls (median; VT 80, FSS 2.3, MAF 10.9). They had the highest perceived HRQoL (p < 0.001), least symptoms of anxiety (10%), no depression, smoked least (13%) and reported the highest percentage (24%) of exercising ≥ 3 times/week.

    CONCLUSION: Fatigue is common, but not a general feature of SLE. It is associated with depression, anxiety, low HRQoL and less physical exercise. Patients with SLE and population controls with a healthy lifestyle reported lower levels of fatigue. Whether lifestyle changes can reduce fatigue, which is a major problem for a majority of SLE patients, needs to be further explored.

  • 21.
    Pettersson, Susanne
    et al.
    Rheumatology Clinic, Karolinska University Hospital, Solna, Stockholm, Sweden; Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Lundberg, Ingrid E
    Rheumatology Clinic, Karolinska University Hospital, Solna, Stockholm, Sweden; Rheumatology Unit, Department of Medicine, Karolinska University Hospital, Solna, Karolinska Institutet, Stockholm, Sweden.
    Liang, Matthew H.
    4Division of Rheumatology, Immunology and Allergy, Brigham and Women’s Hospital, Boston, MA, USA; Section of Rheumatology, VA Boston Healthcare System, Boston, MA, USA.
    Pouchot, Jacques
    Faculty of Medicine, Paris Descartes University, the Public Assistance Hospitals of Paris (AH-HP), Georges Pompidou European Hospital, Paris, France.
    Welin Henriksson, Elisabet
    Rheumatology Clinic, Karolinska University Hospital, Solna, Stockholm, Sweden; Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Determination of the minimal clinically important difference for seven measures of fatigue in Swedish patients with systemic lupus erythematosus2015In: Scandinavian Journal of Rheumatology, ISSN 0300-9742, E-ISSN 1502-7732, Vol. 44, no 3, p. 206-210Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: To estimate the minimal clinically important difference (MCID) in seven self-administered measures assessing fatigue in Swedish patients with systemic lupus erythematosus (SLE).

    METHOD: The participants (n = 51, women 98%, age 52.8 ± 12.1 years, disease duration 18.7 ± 13.6 years) met in groups of six to nine persons. After completing seven fatigue questionnaires [the Fatigue Severity Scale (FSS); the Multidimensional Assessment of Fatigue (MAF) scale; the 20-item Multidimensional Fatigue Inventory (MFI); the Chalder Fatigue Scale (CFS); the Short Form-36 Vitality subscale (VT); the Functional Assessment of Chronic Illness Therapy - Fatigue (FACIT-F) scale; and the Numeric Rating Scale (NRS)], each respondent had a minimum of five face-to-face discussions, followed by an individual comparative assessment of their own level of fatigue (seven-grade scale). This method resulted in 260 contrasting assessments; MCIDs were first calculated using the paired differences and then established by a regression approach. Patients were asked to comment on their experience with the questionnaires and whether they captured their fatigue adequately.

    RESULTS: The paired approach (using 'little more fatigue' as an anchor for MCID during the face-to-face comparative assessments) provided estimates of 4.6-17.0; the regression approach provided estimates of 4.3-10.8. Estimates using the regression approach were consistently lower than those using the paired model. The MCID estimates were least favourable and fewer respondents supported the use of the NRS compared to the other self-reported questionnaires.

    CONCLUSIONS: All seven instruments detect MCIDs for fatigue in Swedish patients with SLE. However, the single-question measure was not supported by the MCID estimates or by comments from the respondents.

  • 22.
    Pettersson, Susanne
    et al.
    Rheumatology Clinic, Karolinska University Hospital, Stockholm, Sweden; Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Lövgren, Malin
    School of Health and Social Sciences, Dalarna University, Falun, Sweden; Stockholms Sjukhem Foundation, Research and Development Unit/Palliative Care, Stockholm, Sweden.
    Eriksson, Lars E.
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Moberg, Cecilia
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Svenungsson, Elisabet
    Rheumatology Clinic, Karolinska University Hospital, Stockholm, Sweden; Department of Medicine, Unit of Rheumatology, Karolinska Institutet, Stockholm, Sweden.
    Gunnarsson, Iva
    Rheumatology Clinic, Karolinska University Hospital, Stockholm, Sweden; Department of Medicine, Unit of Rheumatology, Karolinska Institutet, Stockholm, Sweden.
    Henriksson, Elisabet Welin
    Rheumatology Clinic, Karolinska University Hospital, Stockholm, Sweden; Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    An exploration of patient-reported symptoms in systemic lupus erythematosus and the relationship to health-related quality of life.2012In: Scandinavian Journal of Rheumatology, ISSN 0300-9742, E-ISSN 1502-7732, Vol. 41, no 5, p. 383-390Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of this study was to explore the most distressing symptoms of systemic lupus erythematosus (SLE) and determine how these relate to health-related quality of life (HRQoL), anxiety/depression, patient demographics, and disease characteristics (duration, activity, organ damage).

    METHODS: In a cross-sectional study, patients with SLE (n = 324, age 18-84 years) gave written responses regarding which SLE-related symptoms they experienced as most difficult. Their responses were categorized. Within each category, patients reporting a specific symptom were compared with non-reporters and analysed for patient demographics, disease duration, and results from the following questionnaires: the Medical Outcomes Study 36-item Short Form Health Survey (SF-36), the Hospital Anxiety and Depression Scale (HADS), the Systemic Lupus Activity Measure (SLAM), the SLE Disease Activity Index (SLEDAI), and the Systemic Lupus International Collaboration Clinics/American College of Rheumatology (SLICC/ACR) damage index.

    RESULTS: Twenty-three symptom categories were identified. Fatigue (51%), pain (50%), and musculoskeletal distress (46%) were most frequently reported. Compared with non-reporters, only patients reporting fatigue showed a statistically significant impact on both mental and physical components of HRQoL. Patients with no present symptoms (10%) had higher HRQoL (p < 0.001) and lower levels of depression (p < 0.001), anxiety (p < 0.01), and disease activity (SLAM) (p < 0.001).

    CONCLUSION: Fatigue, pain, or musculoskeletal distress dominated the reported symptoms in approximately half of the patients. Only patients reporting fatigue scored lower on both mental and physical aspects of HRQoL. Our results emphasize the need for further support and interventions to ease the symptom load and improve HRQoL in patients with SLE. Our findings further indicate that this need is particularly urgent for patients with symptoms of pain or fatigue.

  • 23.
    Pettersson, Susanne
    et al.
    Department of Neurobiology, Care Sciences and Society (NVS), Division of Nursing, Karolinska Institutet, Stockholm, Sweden; Rheumatology Unit, Karolinska University Hospital, Stockholm, Sweden.
    Möller, Sonia
    Rheumatology Unit, Karolinska University Hospital, Stockholm, Sweden.
    Svenungsson, Elisabet
    Rheumatology Unit, Karolinska University Hospital, Stockholm, Sweden; Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden.
    Gunnarsson, Iva
    Rheumatology Unit, Karolinska University Hospital, Stockholm, Sweden; Department of Medicine Solna, Karolinska Institutet, Stockholm, Sweden.
    Welin Henriksson, Elisabet
    Department of Neurobiology, Care Sciences and Society (NVS), Division of Nursing, Karolinska Institutet, Stockholm, Sweden; Rheumatology Unit, Karolinska University Hospital, Stockholm, Sweden.
    Women's experience of SLE-related fatigue: a focus group interview study2010In: Rheumatology, ISSN 1462-0324, E-ISSN 1462-0332, Vol. 49, no 10, p. 1935-1942Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of this study was to describe women's experience of SLE-related fatigue, how they express the feeling of fatigue, impact on life and strategies developed to manage fatigue in daily living.

    METHOD: Seven, semi-structured focus group discussions with 33 women were audio-taped, transcribed verbatim and analysed according to qualitative content analysis.

    RESULTS: Perceptions of SLE-related fatigue were sorted into four themes. Nature of Fatigue, involved the sensation, occurrence and character. Aspects Affected by Fatigue described emotions that arose together with fatigue as well as aspects of work, family life, social contacts and leisure activities that were affected by fatigue. Striving Towards Power and Control concluded the array of ways used to manage daily life and were categorized into the mental struggle, structure, restrict and provide. Factors Influencing the Perception of Fatigue described understanding from their surroundings and pain as strongly influencing the experience and perception of fatigue.

    CONCLUSION: SLE-related fatigue was portrayed as an overwhelming phenomenon with an unpredictable character, resulting in the feeling that fatigue dominates and controls most situations in life. The choice of strategies was described as a balance with implications for how fatigue limited a person's life. Health care professionals are advised to take a more active role to empower people with SLE to find their own balance as a way to achieve a feeling of being in control.

  • 24.
    Pettersson, Susanne
    et al.
    Rheumatology Clinic, Karolinska University Hospital, Stockholm, Sweden; Division of Physiotherapy, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Svenungsson, Elisabet
    Rheumatology Clinic, Karolinska University Hospital, Stockholm, Sweden; Rheumatology Unit, Department of Medicine, Karolinska Institutet, Solna, Stockholm, Sweden.
    Gustafsson, Johanna
    Rheumatology Clinic, Karolinska University Hospital, Stockholm, Sweden; Rheumatology Unit, Department of Medicine, Karolinska Institutet, Solna, Stockholm, Sweden.
    Möller, Sonia
    Rheumatology Clinic, Karolinska University Hospital, Stockholm, Sweden.
    Gunnarsson, Iva
    Rheumatology Clinic, Karolinska University Hospital, Stockholm, Sweden; Rheumatology Unit, Department of Medicine, Karolinska Institutet, Solna, Stockholm, Sweden.
    Welin Henriksson, Elisabet
    Rheumatology Clinic, Karolinska University Hospital, Stockholm, Sweden; Division of Nursing, Department of Neurobiology Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden; Division of Nursing Science, Department of Medical and Health Sciences, Linköping University, Linköping, Sweden.
    A comparison of patients' and physicians' assessments of disease activity using the Swedish version of the Systemic Lupus Activity Questionnaire2017In: Scandinavian Journal of Rheumatology, ISSN 0300-9742, E-ISSN 1502-7732, Vol. 46, no 6, p. 474-483Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: We compared patients' assessments of systemic lupus erythematosus (SLE) disease activity by a Swedish version of the Systemic Lupus Activity Questionnaire (SLAQ) with physicians' assessments by the Systemic Lupus Activity Measure (SLAM) and Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K). We also explored the performance of the SLAQ in patients with short (< 1 year) versus long (≥ 1 year) disease duration.

    METHOD: Patients filled out the SLAQ before physicians' assessments. Correlations between SLAQ total, subscales (Symptom score, Flares, Patients global) and SLAM and SLEDAI-2K, as well as between the corresponding items in SLAQ and SLAM, were evaluated using Spearman's ρ. Comparisons between patients with different disease durations were performed with Mann-Whitney U or chi-squared tests.

    RESULTS: We included 203 patients (79% women), with a median age of 45 years [interquartile range (IQR) 33-57 years] and disease duration of 5 years (IQR 0-14 years). Correlations between physicians' SLAM without laboratory items (SLAM-nolab) and patients' assessments were: SLAQ total, ρ = 0.685, Symptom score, ρ = 0.651, Flares, ρ = 0.547, and Patients global, ρ = 0.600. Of the symptom items, fatigue (ρ = 0.640), seizures (ρ = 0.635), and headache (ρ = 0.604) correlated most closely. Neurology/stroke syndrome, skin, and lymphadenopathy correlated less well (ρ < 0.24). Patients' and physicians' assessments were notably more discordant for patients with short disease durations.

    CONCLUSION: We confirm that the SLAQ can be used to monitor disease activity. However, the discrepancy between patients' and physicians' assessments was greater for patients with short versus long disease duration. We encourage further use of the SLAQ, but would like to develop a shorter version which would be valuable in modern, partly web-based, clinical care.

  • 25.
    Regardt, Malin
    et al.
    Department of Occupational Therapy, Karolinska University Hospital, Solna, Sweden; Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    Schult, Marie-Louise
    Department of Clinical Sciences, Karolinska Institutet, Danderyd Hospital, Stockholm, Sweden; Rehabilitation Medicine University Clinic, Danderyd Hospital, Stockholm, Sweden.
    Axelsson, Yvonne
    Department of Occupational Therapy, Karolinska University Hospital, Solna, Sweden.
    Aldehag, Anna
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    Alexanderson, Helene
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden; Department of Physical Therapy, Karolinska University Hospital, Solna, Sweden.
    Lundberg, Ingrid E.
    Rheumatology Unit, Karolinska University Hospital, Stockholm, Sweden.
    Henriksson, Elisabet Welin
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden; Rheumatology Unit, Karolinska University Hospital, Stockholm, Sweden.
    Hand exercise intervention in patients with polymyositis and dermatomyositis: a pilot study2014In: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 12, no 3, p. 160-172Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The aim of the present study was to develop a 12-week hand exercise intervention for patients with polymyositis (PM) and dermatomyositis (DM) and evaluate adherence, patients' opinions of the programme design and overall feasibility, and the effect on hand function and activity limitation after the intervention.

    METHOD: A pilot hand exercise intervention was conducted on a convenience sample of 15 patients with reduced handgrip strength and established, inactive PM and DM. Acceptable adherence was set at 75%. The programme was evaluated based on patients' opinions regarding exertion, the movements involved and overall feasibility. Hand- and pinch-grip strength, grip ability, dexterity and activity limitation were assessed.

    RESULTS: Eleven of 15 patients completed the intervention, with acceptable adherence of 78-100%. Measures of handgrip strength, dexterity and activity limitation were reduced at baseline compared with normative data from the literature. Throughout the intervention, rates of perceived exertion were scored between 'moderate' and 'fairly strong'. Finger abduction and adduction were excluded from the hand exercise programme because they were not feasible to perform. Repetitions of the exercise increased gradually to a maximum of 30 per movement. Patients regarded this as too time-consuming and suggested ten repetitions daily or 10-20 repetitions 2-4 times per week. There were some individual, clinically meaningful improvements in hand function and activity limitation. A comparison between baseline and after the intervention showed that the three-jaw (tripod) pinch-grip strength (left hand) had increased (p < 0.007; z = -2.7).

    CONCLUSION: A hand exercise programme was found to be feasible to perform by patients with established PM or DM. The effect was limited, with few individual improvements in hand function and activity limitation, indicating a need to increase the resistance in the movements and to limit the duration of each exercise session.

  • 26.
    Regardt, Malin
    et al.
    Department of Neurobiology, Karolinska Institutet, Care Sciences and Society, Huddinge, Sweden; Department of Medicine, Karolinska Institutet, Rheumatology Unit, Sweden; Department of Occupational Therapy, Karolinska University Hospital, Stockholm, Sweden.
    Welin Henriksson, Elisabet
    Department of Neurobiology, Karolinska Institutet, Care Sciences and Society, Huddinge, Sweden; Department of Medicine, Karolinska Institutet, Rheumatology Unit, Sweden.
    Alexanderson, Helene
    Department of Medicine, Karolinska Institutet, Rheumatology Unit, Sweden; Physical Therapy Department, Rheumatology Unit, Karolinska University Hospital, Stockholm, Sweden.
    Lundberg, Ingrid E.
    Department of Medicine, Karolinska Institutet, Rheumatology Unit, Sweden.
    Patients with polymyositis or dermatomyositis have reduced grip force and health-related quality of life in comparison with reference values: an observational study2011In: Rheumatology, ISSN 1462-0324, E-ISSN 1462-0332, Vol. 50, no 3, p. 578-585Article in journal (Refereed)
    Abstract [en]

    OBJECTIVES: The aims of this study were to investigate hand function in PM and DM patients and compare this with reference values in healthy individuals and also to investigate if hand function correlated with activity performance and health-related quality of life.

    METHODS: An observational cross-sectional study was performed in 18 women and 13 men with PM or DM with established disease. Grip force and hand mobility were assessed by Grippit and Escola Paulista de Medicina-Range of Motion scale. Activity performance was measured with myositis activities profile and health-related quality of life by short form-36 (SF-36).

    RESULTS: Women and men with PM and DM with mean disease duration of 6.8 (5.5) years had a significantly lower grip force than gender- and age-matched healthy individuals (women 71% and men 60%). They also had significantly lower mean values in all dimensions of the health-related quality of life instrument SF-36 compared with the Swedish population. In patients with PM and DM, the grip force correlated significantly with the ability to perform domestic activities. In women with PM and DM, the grip force correlated significantly with the health-related quality of life dimensions vitality and mental health. There were no significant differences between patients with PM and DM regarding grip force, hand mobility, activity performance or health-related quality of life.

    CONCLUSIONS: Patients with PM or DM have reduced grip force that could influence activity performance and health-related quality of life.

  • 27.
    Regardt, Malin
    et al.
    Department of Occupational Therapy Karolinska University Hospital Solna, Sweden; Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Sweden.
    Welin Henriksson, Elisabet
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Sweden; Department of Medicine, Rheumatology Unit, Karolinska University Hospital at Solna, Karolinska Institutet, Stockholm, Sweden.
    Sandqvist, Jan
    Department of Social and Welfare Studies, Faculty of Health Sciences, Linköping University, Norrköping, Sweden.
    Lundberg, Ingrid E.
    Department of Medicine, Rheumatology Unit, Karolinska University Hospital at Solna, Karolinska Institutet, Stockholm, Sweden.
    Schult, Marie-Louise
    Karolinska Institutet, Department of Clinical Sciences, Danderyd Hospital, Division of Rehabilitation Medicine, Stockholm, Sweden; The Rehabilitation Medicine University Clinic, Danderyd Hospital, Stockholm, Sweden.
    Work ability in patients with polymyositis and dermatomyositis: An explorative and descriptive study2015In: Work: A journal of Prevention, Assessment and rehabilitation, ISSN 1051-9815, E-ISSN 1875-9270, Vol. 53, no 2, p. 265-277Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Polymyositis (PM) and dermatomyositis (DM) are rare, chronic inflammatory diseases leading to muscle weakness and low muscle endurance. The muscle weakness may lead to restrictions in daily activities and low health-related quality of life.

    OBJECTIVES: This study aimed to investigate the work situation, work ability, work-related risk factors, and influence of the physical and psycho-social work environment in patients with PM and DM.

    METHODS: Patients with PM/DM were assessed using the Work Ability Index (WAI), and the Work Environment Impact Scale (WEIS).

    RESULTS: Forty-eight patients (PM n = 25 and DM n = 23) participated (women/men: 29/19) with a mean age of 54 years (range 28-67 years, SD.10) and mean disease duration of nine years (SD.9). Forty-four percent worked full-time, 31% part-time and 25% were on full-time sick leave. More than 50% self-rated work ability as "poor" or "less good". Physically strenuous work components were present "quite to very often" in 23-79% and more in patients on sick leave ≥ 2 years. For those working, the interfering factors in the work environment concerned task and time demands. Supporting factors concerned meaning of work, interactions with co-workers and others. Self-rated work ability correlated moderately-highly positive with percentage of full-time employment, work-related risk factors and opportunities and constraints in the work environment.

    CONCLUSIONS: Poor self-rated work ability is common in patients with PM/DM indicating a need to identify interfering risk factors and support patients to enhance work performance.

  • 28.
    Seidl, Rainer
    et al.
    Department of Pediatrics, University of Vienna, Austria.
    Labudova, Olga
    Department of Pediatrics, University of Vienna, Austria.
    Krapfenbauer, Kurt
    Department of Pediatrics, University of Vienna, Austria.
    Henriksson, Elisabet Welin
    Department of Cell and Molecular Biology, Medical Nobel Institute, Karolinska Institute, Stockholm, Sweden.
    Craft, Joe
    Department of Internal Medicine, Rheumatology Section, Yale University, New Haven, CT, United States.
    Turhani-Schatzmann, Dritan
    Department of Pediatrics, University of Vienna, Austria.
    Achsel, Tilmann
    Institut für Molekularbiologie und Tumorbiologie, Marburg, Germany.
    Bidmon, Bettina
    Department of Pediatrics, University of Vienna, Austria.
    Pruijn, G J M
    Department of Biochemistry, Katholieke Universiteit Nijmegen, Netherlands.
    Cairns, Nigel
    Institute of Psychiatry, MRC Brain Bank, London, United Kingdom.
    Lubec, Gert
    Department of Pediatrics, University of Vienna, Austria; FRSC, United Kingdom; University of Vienna, Department of Pediatrics, Vienna, Austria.
    Deficient brain snRNP70K in patients with Down syndrome2001In: Electrophoresis, ISSN 0173-0835, E-ISSN 1522-2683, Vol. 22, no 1, p. 43-48Article in journal (Refereed)
    Abstract [en]

    The small nuclear ribonucleoprotein 70K (snRNP 70K; U1-70 kDa) is an integral part of the spliceosome, a large RNA-protein complex catalyzing the removal of introns from nuclear pre-mRNA. snRNP is one of the best-studied essential subunits of snRNPs, is highly conserved and its inactivation was shown to result in complete inhibition of splicing. Applying subtractive hybridization, we found a sequence with 100% identity to snRNP absent in fetal Down syndrome (DS) brain. This observation made us determine snRNP-mRNA steady-state levels and protein levels in brains of adult patients with DS. snRNP-mRNA and protein levels of five individual brain regions of DS and controls each, were determined by blotting techniques. snRNP-mRNA steady state levels were significantly decreased in DS brain. Performing Western blots with monoclonal and human antibodies, snRNP protein levels were decreased in several regions of DS brain, although one monoclonal antibody did not reveal different snRNP-immunoreactivity. Although decreased snRNP-protein could be explained by decreased mRNA-steady state levels, another underlying mechanism might be suggested: snRNP is one of the death substrates rapidly cleaved during apoptosis by interleukin-1-beta-converting enzyme-like (ICE) proteases, which was well-documented by several groups. As apoptosis is unrequivocally taking place in DS brain leading to permanent cell loses, decreased snRNP-protein levels may therefore reflect decreased synthesis and increased apoptosis-related proteolytic cleavage.

  • 29.
    Tingström, Joanna
    et al.
    Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
    Barimani, Mia
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Sonesson, Sven-Erik
    Department of Women and Child Health, Karolinska Institutet, Stockholm, Sweden.
    Wahren-Herlenius, Marie
    Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
    Henriksson, Elisabet Welin
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    The experiences of pregnancy in women with SSA/Ro52 autoantibodies2010In: Musculoskeletal Care, ISSN 1478-2189, E-ISSN 1557-0681, Vol. 8, no 4, p. 215-223Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE:  Congenital heart block may develop in the foetus during pregnancy in SSA/Ro52 autoantibody-positive women. The aim of this study was to investigate how women with SSA/Ro52 autoantibodies experience their pregnancy in terms of the risk of developing foetal heart block, and in undergoing serial ultrasound Doppler echocardiography to detect early signs of congenital heart block.

    METHODS:  Data were collected through individual semi-structured interviews with SSA/Ro52-positive women post-pregnancy (n = 14). The interviews were audio-taped, transcribed verbatim and analysed according to qualitative content analysis.

    RESULTS:  Three categories emerged from the responses: information, emotional response and support. The information received prior to and during early pregnancy was focused on the need for attending a specialized antenatal clinic, and information on the risk for congenital heart block was scarce or missing. During gestational weeks 18-24, when the ultrasound/Doppler examinations were performed, all women described increased stress. However, the interaction with the caregivers made the women feel more safe and secure. Several women also said that they did not emotionally acknowledge the pregnancy until after gestational week 24. None had been offered psychological support.

    CONCLUSION:  There is a need for structured information and organized programmes for the surveillance of women who are SSA/Ro52 positive during their pregnancy. Further, offering psychological support to the women and their families to manage the stress and to facilitate the early attachment to the child should be considered.

  • 30.
    Tingström, Joanna
    et al.
    Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
    Henriksson, Elisabet Welin
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Stockholm, Sweden.
    Sonesson, Sven-Erik
    Department of Women and Child Health, Karolinska Institutet, Stockholm, Sweden.
    Wahren-Herlenius, Marie
    Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
    Ro52 autoantibody-positive women's experience of being pregnant and giving birth to a child with congenital heart block2013In: Midwifery, ISSN 0266-6138, E-ISSN 1532-3099, Vol. 29, no 1, p. 18-23Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: congenital heart block may develop in the fetus of women with Ro/SSA autoantibodies. The aim of this study was to investigate how women expecting a child with congenital heart block (CHB) experienced their pregnancy and post-partum period.

    DESIGN, SETTING AND PARTICIPANTS: women giving birth to a child with CHB in Sweden during 2000-2009 were identified in a population-based manner and individually interviewed post-pregnancy using a semi-structured interview guide. The interviews (n=21) were audiotaped, transcribed verbatim and analysed by qualitative content analysis.

    FINDINGS: three categories emerged from the responses: learning, suspense and facing. Learning contained both learning about the child's heart block, but frequently also about autoantibody-positivity and a potential rheumatic diagnosis in the mother (16/21). The medical procedures and information differed considerably depending on the area of residence and who was encountered in the health-care system. In many cases, ignorance about this rare condition caused a delay in treatment and surveillance. Suspense described the women's struggle to cope with the feeling of guilt and that the child had a serious heart condition and might not survive the pregnancy. Facing included the post-partum period, leaving the hospital and adjusting to everyday life. The women had tended to put their pregnancies 'on hold', and some described that they needed prolonged time to bond with their newborn child.

    CONCLUSION: increased awareness and knowledge of CHB are needed to provide adequate care. Offering psychological support by a health-care professional to facilitate early bonding with the child should be considered.

    IMPLICATIONS FOR PRACTICE: there is a need for structured programs for surveillance of the pregnancies. Such programme should implement guidelines for the involved personnel in the chain of care and make relevant information accessible for the women and families.

  • 31.
    Tingström, Joanna
    et al.
    Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
    Hjelmstedt, Anna
    Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Welin Henriksson, Elisabet
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Ambrosi, Aurélie
    Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
    Sonesson, Sven-Erik
    Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Wahren-Herlenius, Marie
    Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
    Anti-Ro/SSA autoantibody-positive women's experience of information given on the risk of congenital heart block.2016In: Lupus, ISSN 0961-2033, E-ISSN 1477-0962, Vol. 25, no 5, p. 536-542Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Congenital heart block (CHB) may develop in fetuses of women with anti-Ro/SSA autoantibodies, and carries substantial morbidity and mortality. The aim was to evaluate how information on CHB is imparted and identify areas of improvement.

    METHODS: A questionnaire was distributed to anti-Ro/SSA antibody-positive women who had either participated in a surveillance programme but whose expected child did not develop CHB (n = 100, denoted Doppler-Assessed Pregnancies (DAP) group) or given birth to a child with CHB (n = 88, denoted CHB-Affected Pregnancies (CAP) group).

    RESULTS: The response rate was 83% (157/188). Most women received the information on CHB when they were already pregnant (DAP group 60%, CAP group 83%). However, a majority of them would have wanted the information before pregnancy (DAP group 52%, CAP group 56%), and most stated that it would not have influenced their decision to have a child (DAP group 77%, CAP group 58%). The ability to both understand the information and to perceive the information as sufficient were significantly higher when someone trained in paediatric cardiology gave the information.

    CONCLUSIONS: Our findings indicate that information on CHB should be given to women before pregnancy. The data further highlight the importance of having specific knowledge for giving relevant and understandable, yet sufficient information.

  • 32.
    Tingström, Joanna
    et al.
    Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
    Hjelmstedt, Anna
    Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Welin Henriksson, Elisabet
    Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Sonesson, Sven-Erik
    Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden.
    Wahren-Herlenius, Marie
    Department of Medicine, Karolinska Institutet, Stockholm, Sweden.
    Ro/SSA autoantibody-positive pregnancy: reactions to serial fetal Doppler echocardiographic surveillance2015In: Lupus, ISSN 0961-2033, E-ISSN 1477-0962, Vol. 24, no 14, p. 1540-1545Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: The risk for congenital heart block (CHB) associated with maternal Ro/SSA autoantibodies is low, but the possibility of treating early stages of disease has seen the introduction of Doppler echocardiographic surveillance programs with serial examinations during the CHB susceptibility weeks of pregnancy. The aim of the present study was to understand how Ro/SSA autoantibody-positive women having undergone Doppler echocardiographic surveillance programs and giving birth to children without CHB experienced their pregnancy and frequent ultrasound examinations.

    METHODS: A validated questionnaire based on data from an interview-study was distributed to Ro/SSA-positive women supervised with Doppler examinations during their pregnancy (n = 100).

    RESULTS: The response rate was 79%. The majority of the women (61%) reported that the increased number of ultrasound examinations influenced their pregnancy, but in a positive way, with qualified information and additional support from health care personnel in conjunction with the examinations. Further, the visits to the clinic provided opportunities to see the ultrasound picture of the expected infant. However, one-third of the women also reported stress in relation to the examinations.

    CONCLUSIONS: Fetal echocardiographic surveillance holds many and predominantly positive effects for Ro/SSA-positive women during pregnancy in addition to the medical advantages.

  • 33.
    van Vollenhoven, Ronald F.
    et al.
    Departments of Rheumatology, Karolinska Hospital, Stockholm, Sweden.
    Gunnarsson, Iva
    Departments of Rheumatology, Karolinska Hospital, Stockholm, Sweden.
    Welin Henriksson, Elisabet
    Departments of Rheumatology, Karolinska Hospital, Stockholm, Sweden.
    Sundelin, Birgitta
    Departments of Pathology, Karolinska Hospital, Stockholm, Sweden.
    Österborg, Anders
    Departments of Haematology, Karolinska Hospital, Stockholm, Sweden.
    Jacobson, Stefan H.
    Departments of Nephrology, Karolinska Hospital, Stockholm, Sweden.
    Klareskog, Lars
    Departments of Rheumatology, Karolinska Hospital, Stockholm, Sweden.
    Biopsy-verified response of severe lupus nephritis to treatment with rituximab (anti-CD20 monoclonal antibody) plus cyclophosphamide after biopsy-documented failure to respond to cyclophosphamide alone2004In: Scandinavian Journal of Rheumatology, ISSN 0300-9742, E-ISSN 1502-7732, Vol. 33, no 6, p. 423-427Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: The monoclonal anti-B cell antibody rituximab (Rituxin, Mabthera) may be of benefit in antibody-driven diseases, including systemic lupus erythematosus (SLE) nephritis.

    PATIENTS AND TREATMENT: Two female patients with biopsy-confirmed severe and active SLE nephritis despite treatment with cyclophosphamide (CyX) were given four rituximab infusions plus two additional CyX infusions.

    RESULTS: Both patients tolerated the treatment well and SLE activity improved. On repeat kidney biopsy after the combined treatment, Patient 1 showed a profound reduction of nephritis activity, and she was maintained on low-dose prednisolone only. A repeat biopsy after 1 year confirmed the sustained reduction of lupus nephritis activity. In Patient 2, rebiopsy after combined treatment also showed a significant reduction in disease activity.

    CONCLUSION: These cases provide histopathological documentation of a significant treatment benefit from rituximab plus CyX in two patients refractory to CyX alone. This combination is being explored further as salvage therapy for such CyX-resistant patients.

  • 34.
    Waernulf, Lena
    et al.
    Department of Clinical Sciences, Karolinska Institutet, Danderyd Hospital, Stockholm, Sweden.
    Moberg, Cecilia
    Department of Occupational and Environmental Dermatology, Stockholm, Sweden.
    Welin Henriksson, Elisabet
    Rheumatology Unit, Karolinska University Hospital, Solna, Sweden; Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Evengard, Birgitta
    Department of Clinical Microbiology, Umeå University, Umeå, Sweden; Department of Laboratory Medicine, Karolinska Institutet, Karolinska University Hospital Huddinge, Stockholm, Sweden.
    Nyberg, Filippa
    Department of Clinical Sciences, Karolinska Institutet, Danderyd Hospital, Stockholm, Sweden.
    Patients' views on care and treatment after phototherapy for psoriasis and atopic eczema including a gender perspective2008In: Journal of dermatological treatment (Print), ISSN 0954-6634, E-ISSN 1471-1753, Vol. 19, no 4, p. 233-240Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Psoriasis and atopic eczema are reportedly as common among women as among men and are not known to differ in severity between sexes. Research has shown that men get more treatment with ultraviolet (UV) light for longer periods than women. This fact, together with ongoing efforts to improve patient satisfaction with care and treatment at our department, prompted us to gather information from our patients.

    OBJECTIVE: The aim of this study was to explore patients' views of dermatological care and treatment methods.

    METHOD: A questionnaire-based survey was carried out, complemented with qualitative interviews.

    RESULTS: The main findings fall under three areas of clinical relevance: information to patients must be individually designed with a gender perspective; men and women have different attitudes towards greasing which must be kept in mind in clinical practice; and women often appear to be under-prescribed UV treatment.

    CONCLUSION: The information from our study can form a basis for new therapeutic strategies, taking a gender perspective into account.

  • 35.
    Waldheim, Eva
    et al.
    Division of Nursing, Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden.
    Ajeganova, Sofia
    Department of Medicine, Unit for Gastroenterology and Rheumatology, Karolinska Institutet, Stockholm, Sweden.
    Bergman, Stefan
    Primary Health Care Unit, Department of Public Health and Community Medicine, Institute of Medicine, The Sahlgrenska Academy, University of Gothenburg, Gothenburg, Sweden; Spenshult Research and Development Center, Halmstad, Sweden; Department of Clinical Sciences, Section of Rheumatology, Lund University, Lund, Sweden.
    Frostegård, Johan
    Unit of Immunology and Chronic Disease, Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden.
    Welin, Elisabet
    Department of Medical and Health Sciences, Linköping University, Linköping, Sweden; Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
    Variation in pain related to systemic lupus erythematosus (SLE): a 7-year follow-up study2018In: Clinical Rheumatology, ISSN 0770-3198, E-ISSN 1434-9949, Vol. 37, no 7, p. 1825-1834Article in journal (Refereed)
    Abstract [en]

    We have previously shown that most patients with systemic lupus erythematosus (SLE) reported low degree of SLE-related pain. However, 24% of the patients reported high degree of SLE-related pain, more fatigue, anxiety and depression, and worse health-related quality of life (HRQoL). To explore SLE-related pain, the presence of long-standing widespread pain, and patient-reported outcomes (PROs) after 7 years. Sixty-four out of 84 patients participated in a 7-year follow-up of the original survey and completed the same questionnaires answered at inclusion: pain (VAS 100 mm), fatigue (MAF), HRQoL (SF-36), anxiety and depression (HADS), and, if appropriate, a pain-drawing. Differences between inclusion and follow-up (change) were calculated. The patients with a low degree of SLE-related pain at inclusion reported no changes at follow-up in pain and PROs except for worsening in physical function in SF-36, median change (IQR) 0 (- 10 to 5), p = 0.024. Half of the patients with high degree of pain at inclusion reported decreased pain at follow-up, median change (IQR) 45 (35 to 65), p = 0.021; fatigue, 8 (8 to 17), p = 0.018; anxiety, 4 (1 to 4), p = 0.035; and depression, 4 (2 to 5), p = 0.018 and improvements in most dimensions of SF-36. The remaining half of the patients reported no changes regarding pain and PROs except for a worsening in vitality in SF-36, 20 (15 to 35), p = 0.0018. All patients with remaining high level of pain indicated long-standing widespread pain. After 7 years, a subgroup of patients with SLE reported remaining high level of SLE-related pain and a high symptom burden, including long-standing widespread pain. Such patients require more observant attention to receive appropriate treatment.

  • 36.
    Waldheim, Eva
    et al.
    Unit of Rheumatology, Karolinska University Hospital, Stockholm, Sweden; Division of Nursing, Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden.
    Elkan, Ann-Charlotte
    Unit of Rheumatology, Karolinska University Hospital, Stockholm, Sweden; Department of Medicine, Huddinge, Karolinska Institutet, Stockholm, Sweden; Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden.
    Bergman, Stefan
    Research and Development Centre, Spenshult Hospital, Sweden; Department of Rheumatology, Clinical Sciences, Lund University, Lund, Sweden.
    Frostegård, Johan
    van Vollenhoven, Ronald F
    Unit of Rheumatology, Karolinska University Hospital, Stockholm, Sweden; Department of Medicine, Solna, Karolinska Institutet, Stockholm, Sweden.
    Henriksson, Elisabet Welin
    Unit of Rheumatology, Karolinska University Hospital, Stockholm, Sweden; Division of Nursing, Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden.
    Extent and characteristics of self-reported pain in patients with systemic lupus erythematosus2013In: Lupus, ISSN 0961-2033, E-ISSN 1477-0962, Vol. 22, no 2, p. 136-143Article in journal (Refereed)
    Abstract [en]

    OBJECTIVE: Patients' own experiences of subjective symptoms are scarcely covered, and the objective of this study was to investigate the extent and characteristics of self-reported pain in patients with systemic lupus erythematosus (SLE).

    METHODS: This study comprised a cross-sectional design where 84 patients with SLE were asked to complete self-assessments: visual analogue scale of pain and the Short-Form McGill Pain Questionnaire. Medical assessments, including ESR, SLAM, SLEDAI, and SLICC, were also performed.

    RESULTS: Of the study population, 24% reported higher levels of SLE-related pain (≥40 mm on VAS). This group had a significantly shorter disease duration, higher ESR, and higher disease activity, according to the SLAM and SLEDAI, compared to the rest of the study population. This group mainly used the words "tender," "aching," and "burning" to describe moderate and severe pain, and they used a greater number of words to describe their pain. Of the patients with higher levels of pain, 70% reported their present pain as "distressing." The most common pain location for the whole patient population was the joints. Patients rated their disease activity significantly higher than physicians did.

    CONCLUSION: These findings expand the current knowledge of the extent of SLE-related pain and how patients perceive this pain. The results can contribute to affirmative, supportive and caring communication and especially highlight SLE-related pain in patients with a short disease duration and high disease activity.

  • 37.
    Waldheim, Eva
    et al.
    Unit of Rheumatology, Karolinska University Hospital, Stockholm, Sweden; Division of Nursing, Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden.
    Elkan, Ann-Charlotte
    Innovation and Development SRQ (Swedish Rheumatology Quality Register), Dept. of Rheumatology, Karolinska University Hospital, Stockholm, Sweden; Institute of Environmental Medicine, Karolinska Institutet, Stockholm, Sweden.
    Pettersson, Susanne
    Unit of Rheumatology, Karolinska University Hospital, Stockholm, Sweden; Division of Nursing, Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden.
    van Vollenhoven, Ronald F.
    Unit of Rheumatology, Karolinska University Hospital, Stockholm, Sweden; Department of Medicine, Solna, Karolinska Institutet, Stockholm, Sweden.
    Bergman, Stefan
    Research and Development Centre, Spenshult Hospital, Sweden; Department of Rheumatology, Clinical Sciences, Lund University, Lund, Sweden.
    Frostegård, Johan
    Institute of Environmental Medicine, Unit of Immunology and Chronic Disease, Karolinska Institutet, Stockholm, Sweden.
    Henriksson, Elisabet Welin
    Unit of Rheumatology, Karolinska University Hospital, Stockholm, Sweden; Division of Nursing, Department of Neurobiology, Care Science and Society, Karolinska Institutet, Stockholm, Sweden.
    Health-related quality of life, fatigue and mood in patients with SLE and high levels of pain compared to controls and patients with low levels of pain2013In: Lupus, ISSN 0961-2033, E-ISSN 1477-0962, Vol. 22, no 11, p. 1118-1127Article in journal (Refereed)
    Abstract [en]

    Objective: The objective of this paper is to investigate health-related quality of life (HRQoL), fatigue, anxiety and depression in patients with systemic lupus erythematosus (SLE) and higher levels of pain and to compare them to patients with lower levels of pain and controls.

    Method: Patients were dichotomized into two groups based on SLE-related pain score on the visual analog scale (VAS): low-pain group (76%, n=64, VAS 0-39 mm) and high-pain group (24%, n=20, VAS 40-100 mm). Sex- and age-matched controls were randomly selected from the general population. Participants were asked to complete questionnaires regarding self-reported pain, HRQoL, fatigue, anxiety and depression. Medical assessments also were recorded.

    Result: Fatigue score in the high-pain group (median, 36.5; interquartile range (IQR), 32.5-39.7) was significantly higher (p<0.001) compared to the low-pain group (median, 23; IQR, 14.6-34.1), as well as scores for anxiety (median, 9; IQR, 6.5-11.5) and depression (median, 7.5; IQR, 5.5-9) (p<0.001). The high-pain group had significantly lower scores compared to the low-pain group in all dimensions in the SF-36 (p ≤ 0.001-0.007). No statistical differences were detected between the low-pain group and controls in any measurement except for the dimensions physical function, general health, vitality and social function in SF-36. Conclusion Patients with SLE scoring higher degrees of pain were burdened with more fatigue, anxiety and depression and lower levels of HRQoL compared to patients with lower levels of pain who did not differ significantly from the general population in most dimensions. These results elucidate the importance of identifying patients with higher degrees of pain who are probably in need of more extensive multidimensional interventions to decrease symptom burden.

  • 38.
    Welin Henriksson, Elisabet
    et al.
    Laboratory of Medical Cell Genetics, Medical Nobel Institute, Karolinska Institute, Stockholm, Sweden.
    Hansson, Helene
    bDept. of Small Anim. Clin. Sciences, Swed. Univ. of Agricultural Sciences, Uppsala, Sweden.
    Karlsson-Parra, Alex
    Dept. Clin. Immunol. Transfus. Med., University Hospital, Uppsala, Sweden.
    Pettersson, Ingvar
    Laboratory of Medical Cell Genetics, Medical Nobel Institute, Karolinska Institute, Stockholm, Sweden.
    Autoantibody profiles in canine ANA-positive sera investigated by immunoblot and ELISA1998In: Veterinary Immunology and Immunopathology, ISSN 0165-2427, E-ISSN 1873-2534, Vol. 61, no 2-4, p. 157-170Article in journal (Refereed)
    Abstract [en]

    Canine systemic lupus erythematosus (SLE) has a similar disease expression as human SLE, but the serological characterisation of the canine disease is as yet incomplete. In the present study, we examined the specificity of antinuclear antibodies (ANA) in indirect immunofluorescence (IIF) positive canine sera. Sixty-four canine IIF ANA positive sera were characterised using HeLa cell nuclear extract immunoblots and recombinant U1-70K ELISA. We compared these results with a previously shown concordance between indirect immunofluorescence and immunodiffusion in canine SLE serological diagnosis. One canine serum reacting with Sm proteins was observed, and five canine sera presented anti-RNP autoantibodies against the antigens 70K, A, C, and/or B/B'. The autoantigen most frequently recognised was a 43 kDa nuclear protein, previously described as hnRNP G. This prominent canine autoantigen was missing in the commercially available extract designed for immunodiffusion testing of human sera. Other prominent canine autoantigens were found not to be identical with the principal human ones, thus making present human test systems deficient for the use in canine systemic connective disease diagnosis. The development of antigenic extract designed for canine autoimmune autoantigens is necessary in order to make immunodiffusion a useful method in canine diagnosis. The anti-RNP positive canine sera were examined in more detail and we found that the human major antigenic region of the most prominent RNP antigen, the U1-70K protein, also is targeted by canine autoantibodies. Thus, the response against the RNP antigen seems to be conserved between man and dog.

  • 39.
    Welin Henriksson, Elisabet
    et al.
    Department of Medicine, Rheumatology Research Unit, Karolinska Hospital, Karolinska Institutet, Stockholm, Sweden; .
    Wahren-Herlenius, Marie
    Department of Medicine, Rheumatology Research Unit, Karolinska Hospital, Karolinska Institutet, Stockholm, Sweden.
    Lundberg, Ingrid E.
    Department of Medicine, Rheumatology Research Unit, Karolinska Hospital, Karolinska Institutet, Stockholm, Sweden.
    Mellquist, Evi
    Department of Medicine, Rheumatology Research Unit, Karolinska Hospital, Karolinska Institutet, Stockholm, Sweden.
    Pettersson, Ingvar
    CavidiTech AB, Uppsala Science Park, Uppsala, Sweden.
    Key residues revealed in a major conformational epitope of the U1-70K protein1999In: Proceedings of the National Academy of Sciences of the United States of America, ISSN 0027-8424, E-ISSN 1091-6490, Vol. 96, no 25, p. 14487-1492Article in journal (Refereed)
    Abstract [en]

    Epitopes depending on three-dimensional folding of proteins have during recent years been acknowledged to be main targets for many autoantibodies. However, a detailed resolution of conformation-dependent epitopes has to date not been achieved in spite of its importance for understanding the complex interaction between an autoantigen and the immune system. In analysis of immunodominant epitopes of the U1-70K protein, the major autoantigen recognized by human ribonucleoprotein (RNP)-positive sera, we have used diversely mutated recombinant Drosophila melanogaster 70K proteins as antigens in assays for human anti-RNP antibodies. Thus, the contribution of individual amino acids to antigenicity could be assayed with the overall structure of the major antigenic domain preserved, and analysis of how antigenicity can be reconstituted rather than obliterated was enabled. Our results reveal that amino acid residue 125 is situated at a crucial position for recognition by human anti-RNP autoantibodies and that flanking residues at positions 119-126 also appear to be of utmost importance for recognition. These results are discussed in relation to structural models of RNA-binding domains, and tertiary structure modeling indicates that the residues 119-126 are situated at easily accessible positions in the end of an alpha-helix in the RNA binding region. This study identifies a major conformation-dependent epitope of the U1-70K protein and demonstrates the significance of individual amino acids in conformational epitopes. Using this model, we believe it will be possible to analyze other immunodominant regions in which protein conformation has a strong impact.

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