Self-reported engagement in everyday activities following bilateral lung transplantation in paediatric cystic fibrosis: A single centre study

Jenny-Maree Marshall, Emma Schneider, Shenae O’Mahony, Natasha Lannin, Glen Phillip Westall, Anoo Bhopti

Research output: Contribution to journalArticleResearchpeer-review

2 Citations (Scopus)

Abstract

Introduction Following lung transplantation, it is unknown how children/adolescents self-assess their performance in everyday activities, importance of these activities, and whether resumption of everyday activities influences self-reported quality of life. The aim was to examine the effect of bilateral lung transplantation on children’s/adolescent’s perception of engagement in everyday activities over the first 18 months post-transplant. Methods A multiple-single- case- study pre-post test design was conducted at a National Paediatric Lung Transplant Service. Participants were aged under 18 years and were 3 months post first bilateral lung transplant at the time of recruitment. Outcomes were self-reported quality of life (Paediatric Quality of Life Inventory (PedsQL), Transplant Module and engagement in meaningful life roles (Child Occupational Self-Assessment (COSA) Scale) measured at 3 months and 18 months post-transplant from participants, and their parent(s) (PedsQL). Analysis included paired between-time differences and descriptive analysis. Results Seven participants were recruited to the trial with a mean age of 13 (SD 4) years and a diagnosis of cystic fibrosis. The total mean scores on PedsQL remained stable between 3 months and 18 months for both participants and parents. The PedsQL transplant module total mean scores of participants significantly increased from 3 months (M=66.58, SD=11.83) to 18 months (M=80.25, SD=11.56), t(5) = 2.91, p=0.03 whereas parents’ scores remained stable. COSA responses reported ‘big problems’ with self-care tasks, family engagement and coping with worries at 3 months. At 18 months, the ‘big problem’ activities shifted to community engagement and independence. Conclusion Time influences self-reported quality of life and engagement in meaningful life roles for children/adolescents and their parents 3 months to 18 months post-lung transplant. Our findings highlight the importance of focusing on occupational roles and occupational performance of children and adolescents when designing post-transplant interventions, suggesting a key role for occupational therapy after transplantation.

Original languageEnglish
Article numbere002251
Number of pages8
JournalBMJ Paediatrics Open
Volume7
Issue number1
DOIs
Publication statusPublished - 20 Dec 2023

Keywords

  • Cystic Fibrosis
  • Occupational therapy
  • Rehabilitation
  • Technology

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