Health‐related quality of life in adult and pediatric survivors

Mitchell, Sandra A.; Wiener, Lori; Hoag, Jenny; Fry, Abigail; Bevans, Margaret

doi:10.1002/9781119612780.ch36

Cited by 5 publications

(4 citation statements)

References 353 publications

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“…Chronic GVHD can involve almost every organ system although it most commonly affects the skin, eyes, mouth, liver, intestines, lungs, and the musculoskeletal system ( Haroun et al, 2023 ). Children living with cGVHD often face many years of a disabling and painful chronic illness compounded by the side effects of prolonged immunosuppression, particularly long-term corticosteroids, needed to treat cGVHD manifestations ( Mitchell et al, 2021 ).…”

Section: Introductionmentioning

confidence: 99%

Development and psychometric testing of a pediatric chronic graft-versus-host disease symptom scale: protocol for a two-phase, mixed methods study

Mitchell,

Hunter,

Fry

et al. 2024

Front. Psychol.

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BackgroundChronic graft-versus-host disease (cGVHD) is a debilitating late complication of hematopoietic stem cell transplantation. It is often accompanied by extensive symptom burden. No validated cGVHD patient-reported outcome (PRO) measure exists to evaluate cGVHD symptom bother in children and adolescents younger than 18 years. This paper presents the study protocol for a multi-center, two-phase protocol to develop a psychometrically valid pediatric cGVHD Symptom Scale (PCSS) and a companion caregiver-proxy measure to capture the symptom burden experienced by children with cGVHD. In the first phase of the study, our aim is to evaluate the comprehension, clarity and ease of response of the PCSS through cognitive interviewing and to iteratively refine the measure to optimize content validity. In the second phase of the study, we will quantitatively examine the measurement properties of the PCSS in children and their caregiver-proxies.Methods and analysisEligible participants are children/adolescents ages 5–17 with cGVHD who are receiving systemic immunosuppressive treatment or have recently tapered to discontinuation. In the first phase, we are enrolling 60 child and caregiver-proxy dyads in three child age strata (5–7, 8–12, and 13–17 years old). Semi-scripted cognitive debriefing interviews are conducted to assess comprehension, clarity, and ease of response of each PCSS item with the child alone, and then jointly with the caregiver-proxy to explore discordant ratings. In phase two, an age-stratified cohort of 120 child-caregiver dyads will be enrolled to evaluate test–retest reliability, construct validity, and responsiveness. Anchors for known-groups validity include the PedsQL module and clinical variables, including cGVHD clinician-rated severity scores. In participants ages 13–17, we will also compare responses on the PCSS with those from the Lee cGVHD Symptom Scale, to gauge the youngest age at which adolescent respondents can comprehend this adult measure.DiscussionThis study will yield a well-validated, counterpart measure to the Lee cGVHD Symptom Scale for use in children with cGVHD and their caregiver-proxies. This new patient-reported outcome measure can be integrated into clinical trials and care delivery for pediatric transplant survivors to improve the precision and accuracy with which their cGVHD symptom experience is captured.Clinical trial registrationwww.ClinicalTrials.gov, NCT04044365.

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Section: Introductionmentioning

confidence: 99%

Development and psychometric testing of a pediatric chronic graft-versus-host disease symptom scale: protocol for a two-phase, mixed methods study

Mitchell,

Hunter,

Fry

et al. 2024

Front. Psychol.

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“… 2 Hence, patients undergoing HSCT may endure significant psychological distress throughout the transplant trajectory. 3 , 4 Psychological distress in the HSCT population is multifaceted and characterized by numerous symptoms, including depression, anxiety, insomnia, fatigue, delirium, and post-traumatic stress symptoms, each associated with worse health-related outcomes, including diminished quality of life (QOL), 3 , 4 functioning, and increased mortality. 5 – 8 …”

Section: Introductionmentioning

confidence: 99%

Psychosocial Assessment Practices for Hematopoietic Stem Cell Transplantation: A National Survey Study

Wiener¹,

Sannes

Randall

et al. 2023

Preprint

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Psychosocial health predicts and contributes to medical outcomes for patients undergoing hematopoietic stem cell transplantation (HSCT). Yet, there are no standards for psychosocial assessments or support for both patients and caregivers across the care continuum. To examine the current state of psychosocial care, clinicians were sent a survey of their psychosocial assessment practices for patients and caregivers undergoing HSCT via the Listservs of professional organizations. Descriptive statistics and bivariate analyses were performed to summarize the findings. While 96% of participants reported routine pre-HSCT psychosocial assessment of patients, only 10.6% routinely used a validated transplant risk-assessment measure. Just 27% routinely performed follow-up psychosocial assessments. In contrast, only 47% of participants routinely assessed the psychosocial needs of family caregivers pre-HSCT, and 13% routinely performed follow-up assessments for caregivers. Most (90%) reported social workers were the primary providers of assessments. While patient-report measures were used for evaluation, the majority of assessments were clinical interviews. No significant differences were found between programs that treated adult and pediatric patients versus those only treating adult patients. Our findings highlight the lack of standard psychosocial practices for patients and family caregivers undergoing HSCT and we offer recommendations to fill this gap.

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“…QoL has been conceptualized in a number of different ways in the literature, including references to the ability to lead a normal life, a socially useful life (e.g., through social and vocational roles), achieve one's life goals, and to experience happiness and satisfaction with life 4 . The main concept of HRQoL is the individual self‐perception of the meaning and interpretation of each patient's situation, by a dynamic multidimensional evaluation via patient self‐report 4,5 .…”

Section: Introductionmentioning

confidence: 99%

“…Significative burden regarding quality of life are observed in post‐transplantation allo‐HSCT patients, leading to negative impact in terms of Health‐Related Quality Of Life (HRQoL), especially related to limitations in physical, social, neurocognitive, and vocational functioning, non‐adherence, psychological impairment, as well as the impact on important roles and relationships 4,5 . An important goal of allo‐HSCT post‐transplantation care is not only survival but also maintenance of patient Quality of Life (QoL) 5 …”

Section: Introductionmentioning

confidence: 99%

Impact of allogeneic stem cell transplantation in childhood and adolescence on quality of adulthood life: A case–control study

Silva

Orlandini

Paz

et al. 2022

Pediatric Transplantation

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Background Allogeneic hematopoietic stem cell transplantation (allo‐HSCT) is associated with late complications that can impair the quality of life (QoL) of patients for years after transplant. The purpose of the present study was to determine the difference in the QoL of adults that underwent allo‐HSCT in childhood and adolescence compared with not transplanted adults. Methods In this prospective case–control cross‐sectional study, we included patients aged ≥18 years that received an allo‐HSCT during childhood or adolescence and subsequently survived at least 2 years after transplantation. The control group consisted of blood donors matched for age and sex. QoL assessment was performed using the Short Form‐36 (SF‐36) Health Survey, Portuguese version 2. Results Thirty‐four transplanted patients and controls were included. 58.8% were male, and the median age at transplant was 13.5 years (range, 4–17 years). The median follow‐up was 11.5 years (range, 2.0–23.0 years). The most common late effect was skeletally followed by endocrine complications. Patients with these late complications had the worst QOL in the following dimensions: physical functioning, role physical, bodily pain, general health, and mental health. When compared to the control group, patients had a lower score in two dimensions: physical functioning and role physical. Conclusions Although skeletal and endocrine complications of transplant patients in childhood have an impact on physical functioning, most parameters of QoL of these patients in adulthood are similar to healthy individuals of the same age and gender. Early detection and long‐term monitoring of late complications can prevent impairment of the QoL.

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Health‐related quality of life in adult and pediatric survivors

Cited by 5 publications

References 353 publications

Development and psychometric testing of a pediatric chronic graft-versus-host disease symptom scale: protocol for a two-phase, mixed methods study

Development and psychometric testing of a pediatric chronic graft-versus-host disease symptom scale: protocol for a two-phase, mixed methods study

Psychosocial Assessment Practices for Hematopoietic Stem Cell Transplantation: A National Survey Study

Impact of allogeneic stem cell transplantation in childhood and adolescence on quality of adulthood life: A case–control study

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