To Örebro University

Background: In interview studies, men under surveillance for screening-detected abdominal aortic aneurysms have reported ambivalence towards this diagnosis: the knowledge was welcomed together with worries, feelings of anxiety and existential thoughts about life's fragility and mortality due to the diagnosis. Previous surveys about health-related quality of life aspects among men under surveillance for screening-detected aneurysm have all used generic patient-reported outcomes. Therefore, the aim of this study was to extend the core-questionnaire Consequences of Screening for use in abdominal aortic aneurysm screening by testing for comprehension, content coverage, dimensionality, and reliability.

Methods: In interviews, the suitability, content coverage, and relevance of the core-questionnaire Consequences of Screening were tested on men under surveillance for a screeningdetected abdominal aortic aneurysm. The results were thematically analysed to identify the key consequences of abnormal screening results. Item Response Theory and Classical Test Theory were used to analyse data. Dimensionality, differential item functioning, local response dependency and reliability were established by item analysis, examining the fit between item responses and Rasch models.

Results: The core-questionnaire Consequences of Screening was found to be relevant for men offered regular follow-up of an asymptomatic screening-detected abdominal aortic aneurysm.Fourteen themes especially relevant for men diagnosed with a screening-detected abdominal aortic aneurysm were extracted from the interviews: 'Uncertainty about the result of the ultra sound examination', 'Change in body perception', 'Guilt', 'Fear and powerlessness', 'Negative experiences from the examination', 'Emotional reactions', 'Change in lifestyle', 'Better not knowing', 'Fear of rupture', 'Sexuality', 'Information', 'Stigmatised', 'Self-blame for smoking', 'Still regretful smoking'. Altogether, 55 new items were generated: 3 were single items and 13 were only relevant for former or current smokers. 51 of the 52 items belonging to a theme were confirmed to fit Rasch models measuring fourteen different constructs. No differential item functioning and only minor local dependency was revealed between some of the 51 items.

Conclusions: The reliability and the dimensionality of a condition-specific measure with high content validity for men under surveillance for a screening-detected abdominal aortic aneurysm have been demonstrated. This new questionnaire called COS-AAA covers in two parts the psychosocial experience in abdominal aortic aneurysm screening.

Background: Consideration of health-related quality of life (HRQOL) in diabetes has been associated with long-term and short-term complications such as hypoglycaemia, but not with short-term glucose control. This study aimed to collect health utilities related to different degrees of poorly controlled postprandial glucose (PPG) and its impact on HRQOL in the UK and in Sweden.

Methods: Three health state descriptions were developed based on literature reviews and interviews with people with diabetes and healthcare professionals, characterising mild, moderate and severe impact of postprandial hyperglycaemic symptoms on HRQOL. Time Trade-Off (TTO) interviews with a 10-year trade-off period were conducted with samples of the UK general public and of Swedish people with diabetes. Mean TTO-derived health state values were expressed on a scale from 0 (death) to 1 (full health).

Results: One hundred fifty participants from the general population were interviewed in the UK (57% female, mean age 35 years) and 150 participants with diabetes in Sweden (64% female, mean age 51 years, 42% type 1 and 58% type 2 diabetes). The mean TTO-derived health state values were for the UK and Swedish participants: mild impact of poorly PPG control (0.89/0.76); moderate (0.75/0.71); severe (0.56/0.58).

Conclusions: Glucose lowering treatments associated with improved control over PPG levels could have important benefits to people with type 1 and type 2 diabetes since findings suggest that increasing severity in postprandial hyperglycaemic symptoms is perceived as having significant negative impact on HRQOL of individuals with type 1 or type 2 diabetes.

OBJECTIVE: Translating the newly developed Empowerment Audiology Questionnaire, EmpAQ-15 to Swedish, and performing content validation on the Swedish version.

DESIGN: Best-practice principles using forward and back translations which were revised by a committee prior to field testing. Field testing was conducted by cognitive interviews with hearing-aid users talking through and rating the items in the translated questionnaire. Content validation was assessed by examining equivalence, accessibility, acceptability, comprehensiveness, and relevance of interview data. Questionnaire introduction and scoring instructions were evaluated by Swedish audiologists.

STUDY SAMPLE: Ten adult native speaking Swedish hearing aid users, recruited with purposive sampling. Maximum variation based on age, gender, hearing aid usage, and degree of hearing loss. Seven Swedish audiologists assessing instructions for result calculations.

RESULTS: The conceptual equivalence between the Swedish translation and the English original questionnaire was judged to be high overall. The instructions and majority of items were experienced as accessible, acceptable, comprehensive, and relevant. The audiologists showed that they could follow scoring instructions and reason about the results.

CONCLUSIONS: This content validity study was the first step towards a Swedish version of a self- report measure of Empowerment for people with hearing loss.

BACKGROUND: Pectus excavatum (PE) is the most common congenital chest wall deformity. Most individuals with PE suffer from psychosocial problems, with low self-esteem and poor body image. Correctional surgery for PE is available, the most widely used is the Nuss procedure. The Nuss procedure has previously been reported to improve self-esteem, body image and health-related quality of life (HRQoL). To assess HRQoL among individuals with PE, the Nuss Questionnaire modified for Adults (NQ-mA) and Single Step Questionnaire (SSQ) has been developed. The aim of the current study was to translate and culturally adapt NQ-mA and SSQ to fit a Swedish context, and to evaluate the psychometric properties, and validate the culturally adapted versions.

METHODS: Individuals who had undergone the Nuss procedure for pectus excavatum were invited to participate in a multicentre study with cross-sectional design. HRQoL was assessed by NQ-mA, SSQ and RAND-36. Psychometric properties for NQ-mA and SSQ were evaluated by content validity index and construct validity (exploratory factor analysis, confirmatory factor analysis, and inter-scale correlations). Known-groups validity, as well as floor and ceiling effects, were evaluated. Internal consistency reliability was examined using Cronbach's alpha.

RESULTS: In total 236 individuals participated in the study. Content validity index for NQ-mA showed satisfactory results, except for two items. Factor analysis for NQ-mA suggested a two-factor model, with exclusion of two items. Subscales correlated adequately with RAND-36's domains. Known-groups validity for NQ-mA demonstrated high sensitivity for between-group differences. Ceiling effects were present in several items. Cronbach's alpha for NQ-mA was .89. Confirmatory factor analysis for SSQ resulted in a three-factor model, with exclusion of five items. However, this model was shown to be unstable through further exploratory factor analysis testing, and no further psychometric tests were conducted for SSQ.

CONCLUSION: The 10-item Swedish version of NQ-mA was shown to be valid for research and clinical assessment of HRQoL in individuals with pectus excavatum. The Swedish version of SSQ requires revision of items before further validation can be performed.

BACKGROUND: The World Health Organization Disability Assessment Schedule (WHODAS 2.0) is a generic questionnaire that captures health and disability-related functioning information corresponding to six major life domains: Cognition, Mobility, Self-care, Getting along, Life activities, and Participation. The WHODAS 2.0 is used in a wide range of international clinical and research settings. A psychometric evaluation of WHODAS 2.0, Swedish version, in the general population is lacking, together with national reference data to enable interpretation and comparison. This study aims to evaluate the psychometric properties of the Swedish 36-item version of WHODAS 2.0 and describe the prevalence of disability in a Swedish general population.

METHODS: A cross-sectional survey was performed. Internal consistency reliability was assessed with Cronbach's alpha. The construct validity was evaluated with item-total correlation, Pearson's correlation between the WHODAS 2.0 domains and the RAND-36 subscales, analysis of known groups by one-way ANOVA, and analysis of the factor structure by confirmatory factor analysis.

RESULTS: Three thousand four hundred and eighty two adults aged 19-103 years (response rate 43%) participated. Significantly higher degrees of disability were reported by the oldest age group (≥ 80 years), adults with a low level of education, and those on sick leave. Cronbach's alpha was from 0.84 to 0.95 for the domain scores and 0.97 for the total score. The item-scale convergent validity was satisfactory, and the item-scale discriminant validity was acceptable except for the item about sexual activity. The data partially supported the factor structure, with borderline fit indices.

CONCLUSION: The psychometric properties of the self-administered Swedish 36-item version of the WHODAS 2.0 are comparable to those of other language versions of the instrument. Data of the prevalence of disability in Swedish general population enables normative comparisons of WHODAS 2.0 scores of individuals and groups within clinical practice. The instrument has certain limitations that could be improved on in a future revision. The test-retest reliability and responsiveness of the Swedish version of WHODAS 2.0 for different somatic patient populations remain to be evaluated.

BACKGROUND: This study aims to evaluate data quality, scaling properties, and reliability of the Swedish RAND-36 in a general population sample and to present reference data for the Swedish population.

METHODS: Testing of data quality, scaling assumptions and reliability followed methods recommended for the International Quality of Life Assessment Project, previously used for psychometric testing of SF-36 and RAND-36. Data were collected via regular mail for a random stratified sample of the general population in a Swedish county. Weighted means for RAND-36 scores were used and differences by sex, age, education, and occupational groups were tested.

RESULTS: The response rate was 42%, and the sample comprised 3432 persons (45% men, 55% women) with a median age of 56.9 years. The internal consistency reliability was satisfactory, with Cronbach's alphas > 0.80 for all eight scales. The percentage of missing items was low, ranging between 1.3% and 3.2%. No floor effects (≥15%) were noted, while ceiling effects were observed for physical functioning, role-functioning/physical, pain, role-functioning/emotional, and social functioning. Item-scale correlations were satisfactory (r ≥ 0.40). Correlations among the physical health scales were strong (range 0.58-0.68) as were the correlations among the mental health scales (range 0.58-0.73). Men reported significantly better health-related quality of life (HRQoL) on all scales, although the gender differences were small. Comparisons among age groups showed approximately equal scores among those 20-29, 30-39, and 40-49 years, while significant decreases in physical health were observed in the older age groups. Substantially worse physical health scores were observed in the oldest age group (80+). Significant differences among age groups were noted also for the mental health scales; however, better energy/fatigue and emotional well-being scores were seen in the older age groups, except for the oldest (80+). Those with university education reported significantly better scores on all scales compared to those with mandatory education.

CONCLUSIONS: The study suggests that the Swedish version of RAND-36 is an acceptable and reliable instrument for measuring HRQoL in the general population. The study provides reference data that can be used for norm-based comparisons.

BACKGROUND: Assessment of Rehabilitation Needs Checklist (ARNC), has been developed to assess rehabilitation need in cancer patients and is recommended by the Confederation of Regional Cancer Centres in Sweden, known as Hälsoskattningen. The aim of the study was to test the reliability and validity of the ARNC, mainly by comparing it with the Distress thermometer and EORTC QLQ-C30.

METHODOLOGY: A sample of 993 persons identified in the Swedish cancer register. The study participants were diagnosed with cancer in 2021 in the Mid Sweden region. The psychometric methods tested reliability and validity including factor analysis.

RESULTS: The response rate was 38%. The test-retest analysis showed that ICC was 0.80 or higher for 12 of the ARNC items. A strong or modarete correlation between ARNC and the other instruments was found in all functional scales and for most items. CFA of the 13-item two-factor model showed a RMSEA value of 0.04, CFI and TLI values of 0.97 and 0.96, and a SRMR value of 0.05, indicating a satisfactory model fit.

CONCLUSION: The evaluation of the ARNC suggests that it is an acceptable and reliable screening instrument for detecting symptoms and signs indicating a possible need of rehabilitation. The medium to strong correlations between ARNC items and the EORTC QLQ- C30 items and scales suggest that ARNC could be an alternative also for research purposes when a shorter and less comprehensive instrument is needed. The simple design could be an advantage as it lowers the burden on cancer patients.

BACKGROUND: The World Health Organization Disability Assessment Schedule 2.0 (WHODAS 2.0) is a generic instrument for the assessment of functioning in six domains, resulting in a total health-related disability score. The aim of this study was to investigate the psychometric properties of the Swedish-language version of the self-rated 36-item version in psychiatric outpatients with various common psychiatric diagnoses using Rasch analysis. A secondary aim was to explore the correlation between two methods of calculating overall scores to guide clinical practice: the WHODAS simple (summative) model and the WHODAS complex (weighted) model.

METHODS: Cross-sectional data from 780 Swedish patients with various mental disorders were evaluated by Rasch analysis according to the partial credit model. Bivariate Pearson correlations between the two methods of calculating overall scores were explored.

RESULTS: Of the 36 items, 97% (35 items) were within the recommended range of infit mean square; only item D4.5 (Sexual activities) indicated misfit (infit mean square 1.54 logits). Rating scale analysis showed a short distance between severity levels and disordered thresholds. The two methods of calculating overall scores were highly correlated (0.89-0.99).

CONCLUSIONS: The self-administered WHODAS 2.0 fulfilled several aspects of validity according to Rasch analysis and has the potential to be a useful tool for the assessment of functioning in psychiatric outpatients. The internal structure of the instrument was satisfactorily valid and reliable at the level of the total score but demonstrated problems at the domain level. We suggest rephrasing the item Sexual activities and revising the rating scale categories. The WHODAS simple model is easier to use in clinical practice and our results indicate that it can differentiate function among patients with moderate psychiatric disability, whereas Rasch scaled scores are psychometrically more precise even at low disability levels. Further investigations of different scoring models are warranted.