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

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.

Establishing a Virtual Home Assessment Program: from Concept to Implementation as a Result of the COVID-19 Pandemic.

PURPOSE OF REVIEW: Environmental home assessments have traditionally been performed in-person at the homes of Children's Mercy Kansas City patients. The COVID-19 pandemic brought many challenges to the way patients interact with their healthcare providers, including home visiting programs. Reaching out to patients with high-risk asthma and immunocompromised health was still needed, despite the pandemic. This project's purpose was to develop a virtual (telemedicine) healthy home assessment protocol that would continue to meet patients' needs during the isolation resulting from the pandemic. RECENT FINDINGS: This is a newly developing approach to performing home environmental assessments with limited published research. Research on the effective use of telemedicine as an alternative to in-person clinic visits has shown that for some health conditions telemedicine represents a useful technique to engage with patients and caregivers. For some conditions, like pediatric asthma, it provides a similar level of efficacy in disease management while providing a more efficient form of interaction. This article describes the development and delivery process, timelines of caregiver interaction, and guidelines for performing virtual home assessments. It summarizes the challenges and benefits of using a virtual process for delivering home assessment services for asthma and allergy patients. Overall, caregivers indicated they found the use of virtual technology had significant benefits for them including their personal comfort and the time efficiency gained by using virtual visits to interact with Healthy Homes Program staff.