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Living with pectus excavatum: Experiences and health-related quality of life before and after minimal invasive repair
Örebro University, School of Health Sciences.ORCID iD: 0000-0002-3743-7826
2025 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Although pectus excavatum (PE), the most common congenital chest wall deformity, can cause both physical and psychosocial suffering, minimal invasive repair for PE (MIRPE) can improve outcomes regarding health-related quality of life (HRQoL). However, MIRPE has not been evaluated in a Swedish context and lacks qualitative explorations. This thesis examines the HRQoL and experiences of living with PE before and after MIRPE. Study I translated, culturally adapted, and evaluated the psychometrical properties of the Nuss Questionnaire modified for Adults (NQ-mA) and the Single Step Questionnaire. The Swedish version of NQmAwas validated for assessment after MIRPE. Study II evaluated HRQoL in patients who had undergone MIRPE. The results show men have better HRQoL than women. Older participants and those who still had their bar in place had significantly lower HRQoL. Study III described the experiences of living with PE before MIRPE. The qualitative findings show that PE was a heavy burden, causing both physical and social limitations in everyday life. Although the participants experienced that healthcare providers have limited knowledge about PE, MIRPE instilled hope for a better life after surgery. Study IV, a mixed-methods design, aimed to gain a comprehensive understanding of experienced HRQoL after MIRPE. Participants experienced a strengthened sense of self and an increased freedom in life after MIRPE. For some of the participants, however, surgery did not solve all their problems. In conclusion, a Swedish HRQoL measurement for individuals with PE is valid for use after MIRPE. PE is a heavy burden and healthcare providers need to increase their knowledge about PE. Although HRQoL improves after MIRPE, careful preoperative information must be provided for individuals to make informed decisions.

Place, publisher, year, edition, pages
Örebro: Örebro University , 2025. , p. 95
Series
Örebro Studies in Medicine, ISSN 1652-4063 ; 317
Keywords [en]
Experiences, funnel chest, minimal invasive repair, mixedmethods, Nuss, Pectus excavatum, psychometrics, qualitative content analysis, quality of life
National Category
Other Health Sciences
Identifiers
URN: urn:nbn:se:oru:diva-118810ISBN: 9789175296371 (print)ISBN: 9789175296388 (electronic)OAI: oai:DiVA.org:oru-118810DiVA, id: diva2:1930429
Public defence
2025-04-11, Örebro universitet, Campus USÖ, Tidefeltsalen, Södra Grev Rosengatan 32, Örebro, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2025-01-23 Created: 2025-01-23 Last updated: 2025-04-02Bibliographically approved
List of papers
1. Translation and psychometric evaluation of the Swedish versions of Nuss Questionnaire modified for Adults (NQ-mA) and Single Step Questionnaire (SSQ)
Open this publication in new window or tab >>Translation and psychometric evaluation of the Swedish versions of Nuss Questionnaire modified for Adults (NQ-mA) and Single Step Questionnaire (SSQ)
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2020 (English)Conference paper, Published paper (Refereed)
National Category
Nursing
Identifiers
urn:nbn:se:oru:diva-83319 (URN)
Conference
Nordic Conference in Nursing Research – Methods and Networks for the Future, Copenhagen, Denmark, October 12-14, 2020 (Conference postponed)
Available from: 2020-06-17 Created: 2020-06-17 Last updated: 2025-03-18Bibliographically approved
2. Health-related quality of life after Nuss procedure for pectus excavatum: a cross-sectional study
Open this publication in new window or tab >>Health-related quality of life after Nuss procedure for pectus excavatum: a cross-sectional study
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2022 (English)In: Interactive Cardiovascular and Thoracic Surgery, ISSN 1569-9293, E-ISSN 1569-9285, Vol. 35, no 1, article id ivac031Article in journal (Refereed) Published
Abstract [en]

OBJECTIVES: Pectus excavatum (PE) can cause both physical and psychosocial symptoms and affect patients' health-related quality of life. Previous international studies have shown that the Nuss procedure increases both self-esteem and body image. The aim of the study was to evaluate the health-related quality of life in patients who have undergone the Nuss procedure for PE.

METHODS: The study had a cross-sectional multicentre design. All patients (N = 420) who underwent the Nuss procedure for PE in 3 cardiothoracic departments in Sweden from 2000 to 2019 were invited to answer the RAND-36 and Nuss Questionnaire modified for adults. Genders were compared using the Mann-Whitney U-test. Patients were divided into groups based on age at time of surgery (<20, 20-30 or >30 years) and analysed by the Kruskal-Wallis H-test with post-hoc analyses.

RESULTS: A total of 236 patients returned the questionnaires; 82.2% were males. Men scored significantly better on the modified Nuss Questionnaire total (P = 0.01) and psychosocial (P = 0.02) subscales. Patients who had surgery at <20 years of age had significantly better scores on the same scales (P = 0.007 and 0.006, respectively) compared to patients aged 20-30 years at the time of surgery. However, no significant difference was seen in comparison with patients >30 years. Patients who had their bar removed had significantly better values on both scales.

CONCLUSIONS: Male gender, young age at surgery and bar removal seem to be associated with better health-related quality of life after the Nuss procedure for PE.

Place, publisher, year, edition, pages
Oxford University Press, 2022
Keywords
Bar removal, Nuss procedure, Pectus excavatum, Quality of life
National Category
Surgery
Identifiers
urn:nbn:se:oru:diva-97474 (URN)10.1093/icvts/ivac031 (DOI)000756963000001 ()35142354 (PubMedID)2-s2.0-85134083334 (Scopus ID)
Funder
Region Örebro County, OLL-939296
Note

Funding agency:

Örebro University 2021/02220

Available from: 2022-02-14 Created: 2022-02-14 Last updated: 2025-03-18Bibliographically approved
3. Experiences of living with funnel chest prior to corrective surgery: An interview study
Open this publication in new window or tab >>Experiences of living with funnel chest prior to corrective surgery: An interview study
2024 (English)In: PLOS ONE, E-ISSN 1932-6203, Vol. 19, no 7, article id e0304968Article in journal (Refereed) Published
Abstract [en]

Objectives: Pectus excavatum, or funnel chest, causes both physical and psychosocial issues, affecting health-related quality of life. However, the literature on how funnel chest affects daily living prior to corrective surgery is sparse. Therefore, the study aimed to describe the experiences of living with funnel chest prior to correctional surgery.

Materials and methods: The study had a qualitative exploratory design. Consecutive sampling was applied in which all individuals from a single cardiothoracic department scheduled for the minimally invasive repair of pectus excavatum were asked to participate. Nineteen participants, 17 men and two women, participated in the study. Individual telephone interviews were conducted from February 2020 until April 2021. The interviews were analyzed with qualitative content analysis using an inductive approach.

Results: The overall theme "To have or not to have a cavity in my chest, it could make a difference" was interpreted as the latent meaning of the participants' experiences. The theme included two subthemes with three categories each. The subtheme "The funnel chest puts a weight on my shoulders" describes the heavy burden the funnel chest places on the participants. The second subtheme, "This is me, but I want to change my future", describes that participants see the funnel chest as a part of themselves; nevertheless, they look forward to surgery and a life without it.

Conclusion: The results emphasize the heavy burden funnel chest causes and the great limitations it places on the individual. It also highlights the importance of surgery and the hope for a better future for individuals with funnel chest.

Place, publisher, year, edition, pages
Public Library of Science (PLoS), 2024
National Category
Psychology
Identifiers
urn:nbn:se:oru:diva-115181 (URN)10.1371/journal.pone.0304968 (DOI)001267555600019 ()38995912 (PubMedID)2-s2.0-85198587852 (Scopus ID)
Note

LN was financed by grants from the Swedish state under the agreement between the Swedish government and the county councils, the ALF agreement (OLL-967445) https://www.researchweb.org/is/oll. LN was also financed by grants from the Örebro County Research Committee (OLL-941242) https://www.researchweb.org/is/oll. 

Available from: 2024-08-12 Created: 2024-08-12 Last updated: 2025-03-18Bibliographically approved
4. Experiences and health-related quality of life following minimal invasive surgical repair for pectus excavatum – a mixed methods study
Open this publication in new window or tab >>Experiences and health-related quality of life following minimal invasive surgical repair for pectus excavatum – a mixed methods study
(English)Manuscript (preprint) (Other academic)
National Category
Other Health Sciences
Identifiers
urn:nbn:se:oru:diva-120011 (URN)
Available from: 2025-03-18 Created: 2025-03-18 Last updated: 2025-04-02Bibliographically approved

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