Health-related quality of life in long-term survivors of paediatric liver transplantation

Konidis, Stacey V; Hrycko, Alexander; Nightingale, S. L.; Renner, Eberhard L.; Lilly, Leslie; Therapondos, George; Fu, Ann; Avitzur, Yaron; Ng, Vicky L.

doi:10.1093/pch/20.4.189

Cited by 19 publications

(44 citation statements)

References 29 publications

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“…SF‐36 domain scores are provided in Table . Two studies using the SF‐36 reported physical component scores as the lowest of the domain scores . In contrast, Kosola et al reported physical component scores to be the highest of all domain scores at 92.7 ± 12.3, higher than published US population norms (84.0 ± 23.0).…”

Section: Resultsmentioning

confidence: 86%

“…Kosola et al also reported school functioning scores to be comparable to other domains in patients <7 years old (79.8 ± 10.6), but the lowest of all domains (69.2 ± 15.7) in patients aged 7‐17 years. Two studies reported social functioning domain scores to be the highest of the reported scores. Table summarizes studies using the PedsQL.…”

Section: Resultsmentioning

confidence: 99%

“…This disease‐specific tool for pediatric LT recipients was used to assess HRQOL in patients alive 15 or more years after pediatric LT, with mean total PeLTQL scores in 7 patients of 64.7 ± 15.2. Mean scores of PeLTQL subdomains included future health (66.7 ± 18.9), coping and adjustment (55.8 ± 20.2), and social‐emotional (70.6 ± 16.3) …”

Section: Resultsmentioning

confidence: 99%

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Health‐related quality of life after pediatric liver transplantation: A systematic review

Parmar

Vandriel

2017

Liver Transpl

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With improved survival rates after pediatric liver transplantation (LT), attention is targeting improving the health-related quality of life (HRQOL) as an outcome metric. We conducted a systematic review of the literature to examine HRQOL after pediatric LT, focusing on assessment tools and factors associated with HRQOL. A literature search was conducted through PubMed, Web of Science, Ovid, and Google Scholar for all studies matching the eligibility criteria between January 2004 and September 2016. Titles and abstracts were screened independently by 2 authors and consensus for included studies was achieved through discussion. A total of 25 (2 longitudinal, 23 cross-sectional) studies were reviewed. HRQOL in pediatric LT recipients is lower than healthy controls, but it is comparable to children with chronic diseases or other pediatric solid organ transplant recipients. Domain scores were lowest in school functioning on the Pediatric Quality of Life Inventory (PedsQL) Generic Core Scale 4.0 and general health perception on the Child Health Questionnaire, the 2 most commonly used generic HRQOL instruments. Identified predictors of poor HRQOL include sleep disturbances, medication adherence, and older age at transplantation. Two recently validated disease-specific HRQOL tools, Pediatric Liver Transplant Quality of Life tool and the Pediatric Quality of Life Inventory 3.0 Transplant Module, have enabled enhanced representation of patient HRQOL, when used in conjugation with generic tools. Heterogeneity in study design and instruments prevented a quantitative, meta-analysis of the data. In conclusion, continued optimization of durable outcomes for this population mandates prioritization of research focusing on the gap of targeted intervention studies aimed at specific HRQOL subdomains and longitudinal studies to predict the trajectory of HRQOL over time. Liver Transplantation 23 361-374 2017 AASLD.

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Section: Resultsmentioning

confidence: 86%

Section: Resultsmentioning

confidence: 99%

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Health‐related quality of life after pediatric liver transplantation: A systematic review

Parmar

Vandriel

2017

Liver Transpl

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“…The results of this systematic review show that PROMs are being used in the field of pediatric solid organ transplant . However, researchers advise that both generic and disease‐specific instruments are used to conduct a comprehensive evaluation of health status and overall QOL to generate more accurate depictions of a patient's health‐related QOL . In 52 out of 62 pediatric transplantation articles reviewed in this study, a second disease‐specific PROM was not administered in conjunction with a generic instrument.…”

Section: Discussionmentioning

confidence: 99%

Patient‐reported outcome measures within pediatric solid organ transplantation: A systematic review

Anthony

Stinson

Lazor

et al. 2019

Pediatric Transplantation

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Subjective evaluation of medical care and disease outcomes from patients' perspectives has become increasingly important. Patient‐reported outcome measures (PROMs) play a prominent role in engaging patients, capturing their experiences and improving patient care. This systematic review sought to identify PROMs that are used in the field of pediatric solid organ transplantation, with the aim to inform the implementation of PROMs into clinical practice for this population. A systematic review of English language, peer‐reviewed articles was performed on key health science databases to identify publications using PROMs in pediatric solid organ transplantation. The search yielded 3670 articles, with a final data set of 62 articles that included 47 different PROMs. The three most frequently used PROMs included the following: (a) PedsQL™ Generic Core Scales (n = 25); (b) Children's Depression Inventory (n = 6); and (c) Child Health Questionnaire (n = 6). Of the 47 PROMs, 42 were generic and five were disease‐specific; only six PROMS had a documented psychometric evaluation within a pediatric solid organ transplant population. This review outlines the attributes of the instruments (eg, domains captured), as well as the psychometric properties of those evaluated. PROMs are increasingly used in the field of pediatric transplantation; however, there are limited details in the current literature about their conceptual underpinnings and psychometric properties. This review highlights the need for additional psychometric evaluation of identified measures to establish the necessary foundation to inform the implementation of PROMs into clinical care for pediatric solid organ transplant patients.

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“…Liver transplantation is well‐established in Canada as the optimal standard of care for children experiencing end‐stage liver failure . Transplantation, as a treatment for pediatric end‐stage liver failure, has advanced long‐term health outcomes with ten‐year survival rates reaching 75%‐85% .…”

Section: Introductionmentioning

confidence: 99%

The experiences of parents and caregiver(s) whose child received an organ from a living anonymous liver donor

Ghent

Robertson

Young

et al. 2019

Clinical Transplantation

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Background Anonymous living donor transplantation is a potential strategy to address the shortage of available organs for transplant. A living anonymous donor (LAD) is a donor with no biological connection and whose identity is unknown to the recipient. This study captured the lived experiences of pediatric liver transplant recipient families whose child received an organ from a LAD. Methods Qualitative data collection and analysis were guided by a theoretical framework of phenomenology. Data analysis highlighted themes through an inductive process of reviewing transcript paragraphs to code for significant statements that represented key concepts and captured depth of experience. Results A total of nine interviews were conducted with 10 participants. Data analysis yielded themes of emotional turbulence through their transplant journey. Pre‐transplant experiences were characterized by feelings of helplessness and desperation. Receiving a LAD transplant prompted shock, relief, and acceptance of the donation. Post‐transplant experiences were characterized by altered life‐perspectives and varied levels of connectedness to the donor, marked by gratitude and concern for donor well‐being. Conclusion Anonymous donation in liver transplantation is perceived by recipient families as a remarkable gift and a viable donor option. Our preliminary findings can be used to inform strategy development regarding future delivery of care.

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Health-related quality of life in long-term survivors of paediatric liver transplantation

Cited by 19 publications

References 29 publications

Health‐related quality of life after pediatric liver transplantation: A systematic review

Health‐related quality of life after pediatric liver transplantation: A systematic review

Patient‐reported outcome measures within pediatric solid organ transplantation: A systematic review

The experiences of parents and caregiver(s) whose child received an organ from a living anonymous liver donor

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