Health‐related quality of life after combined liver and kidney transplantation in children

Schmaeschke, Kaja; Lezius, Susanne; Grabhorn, Enke; Kemper, Markus J.; Brinkert, Florian

doi:10.1111/petr.12902

Cited by 7 publications

(5 citation statements)

References 40 publications

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“…One included study, identified in the expanded search, reported on a combined sample of renal transplant and end‐stage renal disease patients . The article was retained as a majority of patients were transplant recipients, and the objective was to evaluate the psychometric properties of two instruments (PedsQL ™ Generic Core Scales and PedsQL ™ End Stage Renal Disease Module) identified in other articles which reported on transplant samples.…”

Section: Resultsmentioning

confidence: 99%

“…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 .…”

Section: Discussionmentioning

confidence: 99%

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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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Section: Resultsmentioning

confidence: 99%

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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“…Health-related quality of life was only examined systematically in a single study [ 26 ], using the PedsQL™ instrument. However, this study of children after combined liver and kidney transplantation did not report results for the ARPKD subgroup (10 of 23 patients) separately.…”

Section: Resultsmentioning

confidence: 99%

Systematic review on outcomes used in clinical research on autosomal recessive polycystic kidney disease—are patient-centered outcomes our blind spot?

2021

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Background Autosomal recessive polycystic kidney disease (ARPKD) is a rare severe hepatorenal disease. Survivors of pulmonary hypoplasia and patients with milder presentations often achieve long-term survival but frequently require kidney and/or liver transplantation. Objective To examine the use of clinical, surrogate and patient-centered outcomes in studies on ARPKD with special attention to core outcomes of the Standardized Outcomes in NephroloGy project for children with chronic kidney disease (SONG-Kids). Data sources and study eligibility criteria A systematic MEDLINE literature search identified 367 ARPKD studies published since 1990; however, of these 134 were excluded because they did not report any clinical outcomes (e.g. only histopathological, genetic, protein structure or radiological markers), 19 studies because they only included prenatal patients and 138 because they were case reports with ≤ 3 patients. Study appraisal Seventy-six eligible studies were examined for study type, size, intervention, and reported outcomes by organ system and type, including all SONG-kids tier 1–3 outcomes. Participants There were 3231 patient-reports of children and adults with ARPKD. Results The overwhelming majority of studies reported clinical and surrogate outcomes (75/76 (98%) and 73/76 (96%)), but only 11/76 (14%) examined patient-centered outcomes and only 2/76 (3%) used validated instruments to capture them. Of the SONG-Kids core outcomes, kidney function was reported almost universally (70/76 (92%), infection and survival in three quarters (57/76 (75%), 55/76 (72%)) and measures of life participation (including neurological impairment) only rarely and inconsistently (16/76 (21%)). Limitations Thirty studies (39%) were of low quality as they were either narrative case reports (n = 14, 18%) and/or patients with ARPKD were an indistinguishable subgroup (n = 18, 24%). Only 28 trials compared interventions, but none were randomized. Conclusions and implications Studies that reported clinical outcomes in ARPKD usually covered the core outcome domains of kidney function, infections, and survival, but measures of life participation and patient-centered outcomes are distinctly lacking and require more attention in future trials. Graphical abstract

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“…Longer disease duration and older age in children with CKD were associated with better HRQOL in physical, social, and emotional domains, suggesting that time to adapt may improve HRQOL [9]. Further, levels of HRQOL after a kidney transplant has been mixed, with evidence of an increase in HRQOL across domains through the first year post-transplant [8], as well as findings of lower HRQOL relative to control groups [10].…”

Section: Health-related Quality Of Life Among Pediatric Kidney Transp...mentioning

confidence: 99%

“…Studies of HRQOL in mixed pediatric organ transplant samples (e.g., heart and liver) yield similarly inconsistent findings. Many found that transplant recipients reported lower HRQOL overall [10,11] and in specific domains (e.g., "physical health") [12], while others indicated levels of psychological, social, and emotional HRQOL [13] comparable to healthy peers. Interestingly, parents perceived children's HRQOL to be poorer than transplant recipients self-reported [14].…”

Section: Health-related Quality Of Life Among Pediatric Kidney Transp...mentioning

confidence: 99%

Family Environment, Social Support, and Health‐Related Quality of Life in Adolescents Following Kidney Transplant

Roberts,

Zelikovsky

2024

Pediatric Transplantation

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BackgroundKidney transplantation is the treatment of choice for pediatric end‐stage renal disease. Transplant recipients often have better neurocognitive, academic, and health‐related outcomes. While there is some evidence that health‐related quality of life (HRQOL) improves following kidney transplant, other studies have found adolescent transplant recipients report lower overall HRQOL than healthy peers. Current research has focused on individual‐level factors affecting adjustment to organ transplant, warranting examination of HRQOL from a systems perspective. Family environment and social support contribute to a system of proximal relationships that are crucial in adolescents' development, making them important factors to study in relation to HRQOL post‐transplant.MethodsThe current study utilized archival data of adolescent renal transplant patients who completed surveys about their family environment, social support, and HRQOL during routine transplant clinic visits.ResultsFamily cohesion, as well as social support from parents, classmates, and people in school, were positively correlated with HRQOL. Social support from people in school uniquely predicted variance in HRQOL, beyond the contribution of overall family environment after controlling for demographic factors. Relative to comparable adolescent samples, transplant recipients reported more optimal overall family environment, greater social support from teachers, and lower social support from close friends.ConclusionPsychosocial interventions for adolescent kidney transplant recipients may be enhanced by collaborating with school professionals and further bolstering strengths in the family environment. Kidney transplant recipients may benefit from long‐term intervention, as decreased HRQOL appears to persist years post‐transplant.

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Health‐related quality of life after combined liver and kidney transplantation in children

Cited by 7 publications

References 40 publications

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

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

Systematic review on outcomes used in clinical research on autosomal recessive polycystic kidney disease—are patient-centered outcomes our blind spot?

Family Environment, Social Support, and Health‐Related Quality of Life in Adolescents Following Kidney Transplant

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