Disagreement between mothers' and fathers' rating of health-related quality of life in children with cancer

Meryk, Andreas; Kropshofer, Gabriele; Hetzer, Benjamin; Riedl, David; Lehmann, Jens; Rumpold, Gerhard; Haid, Alexandra; Schneeberger-Carta, Verena; Salvador, Christina; Rabensteiner, Evelyn; Rothmund, Maria-Sophie; Holzner, Bernhard; Crazzolara, Roman

doi:10.1007/s11136-023-03341-0

Cited by 3 publications

(2 citation statements)

References 44 publications

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“…36,37 Also in the highincome context, Meryk et al showed that fathers' estimates of quality of life and physical functioning were more discrepant from self-reports than mothers' accounts. 38 Therefore, concepts included in the questionnaire may have been less culturally accepted, new or misunderstood by especially the fathers.…”

Section: Discussionmentioning

confidence: 99%

A caregivers' perspective on social reintegration and stigma of childhood cancer survivors in Kenya

Lemmen,

Mageto,

Njuguna

et al. 2024

Psycho-Oncology

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ObjectivesChildhood cancer survivors' social reintegration may be hampered in low and middle‐income countries. The nature and extent of social challenges and prejudices that survivors encounter in such settings are largely unknown. This study explores caregivers' perspectives on social reintegration and stigmatization of Kenyan childhood cancer survivors.MethodsCaretakers of childhood cancer survivors (<18 years) were interviewed using mixed‐methods questionnaires during home or clinic visits between 2021 and 2022. Stigma was assessed with an adjusted Social Impact Scale and risk factors were investigated.ResultsCaretakers of 54 survivors (median age 11 years) were interviewed. Families' income (93%) decreased since start of treatment. Caretakers (44%) often lost their jobs. Financial struggles (88%) were a burden that provoked conflicts within communities (31%). School fees for siblings became unaffordable (52%). Families received negative responses (26%) and were left or avoided (13%) by community members after cancer disclosure. Survivors and families were discriminated against because the child was perceived fragile, and cancer was considered fatal, contagious, or witchcraft. Survivors repeated school levels (58%) and were excluded from school activities (19%) or bullied (13%). Performance limitations of daily activities (p = 0.019), male sex (p = 0.032), solid tumors (p = 0.056) and a short time since treatment completion (p = 0.047) were associated with increased stigma. Caretakers recommended educational programs in schools and communities to raise awareness about cancer treatment and curability.ConclusionsChildhood cancer survivors and their families experienced difficulties with re‐entry and stigmatization in society. Increasing cancer and survivorship awareness in schools and communities should facilitate social reintegration and prevent stigmatization.

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Section: Discussionmentioning

confidence: 99%

A caregivers' perspective on social reintegration and stigma of childhood cancer survivors in Kenya

Lemmen,

Mageto,

Njuguna

et al. 2024

Psycho-Oncology

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“…Similarly, in this study, a lower agreement was observed for the overall HRQoL across both the measures for children without any reported health condition than those with reported health conditions. Additionally, a higher maternal than paternal involvement in childcare has been linked to the higher mother–child agreement levels evident in literature [ 17 , 55 , 56 ]. In this study, a similar trend was observed with the CHU9D, but this was not consistently reflected with the PedsQL TM .…”

Section: Discussionmentioning

confidence: 99%

Child–Parent Agreement in the Assessment of Health-Related Quality of Life Using the CHU9D and the PedsQLTM

Khanna,

Khadka,

Mpundu-Kaambwa

et al. 2023

Appl Health Econ Health Policy

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Objective This study examined the inter-rater agreement between child-self and parental proxy health-related quality of life (HRQoL) ratings (overall and domain level) using two different generic child-specific measures, the Child Health Utility 9D (CHU9D) and the Pediatric Quality of Life Inventory (PedsQL TM ), in a community-based sample of Australian children. A secondary objective was to investigate the impact of age on child–parent agreement across the dimensions of the two measures. Methods A total of 85 child–parent dyads (children aged 6–12 years) recruited from the community completed the self and proxy versions of the CHU9D and the PedsQL TM , respectively. The inter-rater agreement was estimated using Concordance Correlation Coefficients (CCC) and Gwet’s Agreement Coefficient (AC 1 ) for the overall sample and across age-groups. Results Agreement was low for overall HRQoL for both the CHU9D (CCC = 0.28) and the PedsQL TM (CCC = 0.39). Across the CHU9D dimensions, agreement was the highest for ‘sad’ (AC 1 = 0.83) and lowest for ‘tired’ (AC 1 = 0.31). The PedsQL TM demonstrated stronger agreement (AC 1 = 0.41–0.6) for the physical health dimension but weaker for the psychosocial dimensions (AC 1 < 0.4). Except for the ‘tired’ dimension, agreement was consistent across age-groups with the CHU9D, whilst the PedsQL TM showed poor agreement for most of the psychosocial health items among the older age-groups only (8–10 and 11–12 years). Conclusion This study highlights that the agreement between child and parent proxy reported HRQoL may be influenced by both the measure used and the age of the child. These findings may have implications for the economic evaluation of healthcare interventions and services in child populations when both child and proxy perspectives are considered in the assessment of child HRQoL.

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Large Improvements in Health-Related Quality of Life and Physical Fitness during Multidisciplinary Inpatient Rehabilitation for Pediatric Cancer Survivors

Riedl

Licht²,

Nickels³

et al. 2022

Cancers

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Rehabilitation is a key element in improving health-related quality of life (HRQOL) for pediatric cancer survivors. The aim of this study was to present data from a multidisciplinary inpatient rehabilitation treatment. Children took part in a four-week multidisciplinary family-oriented inpatient rehabilitation. A total of 236 children (>5–21 years) and 478 parents routinely completed electronic patient-reported outcomes (ePROs), performance-based assessments, and clinician-rated assessments before (T1) and at the end (T2) of rehabilitation. HRQOL was assessed with the PedsQL generic core and PedsQL cancer module. Data were analyzed using repeated measures analysis of variance (ANOVA). Statistically significant improvements with medium to large effect sizes were observed for most HRQOL scales (η2 = 0.09–0.31), as well as performance-based and clinician-rated assessments for physical activity and functional status (η2 > 0.28). Agreement between children’s PROs and parents’ proxy ratings was lower before (rICC = 0.72) than after (rICC = 0.86) rehabilitation. While the concordance between children and parents’ assessment of changes during rehab was low to moderate (r = 0.19–0.59), the use of the performance score led to substantially increased scores (r = 0.29–0.68). The results of this naturalistic observational study thus highlight the benefits of multidisciplinary pediatric inpatient rehabilitation for childhood cancer survivors. The use of the performance score is recommended in this field.

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Disagreement between mothers' and fathers' rating of health-related quality of life in children with cancer

Cited by 3 publications

References 44 publications

A caregivers' perspective on social reintegration and stigma of childhood cancer survivors in Kenya

A caregivers' perspective on social reintegration and stigma of childhood cancer survivors in Kenya

Child–Parent Agreement in the Assessment of Health-Related Quality of Life Using the CHU9D and the PedsQLTM

Large Improvements in Health-Related Quality of Life and Physical Fitness during Multidisciplinary Inpatient Rehabilitation for Pediatric Cancer Survivors

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