ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2020
Determinants of health-related quality of life proxy rating disagreement between caregivers of children with cancer.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 papers.
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17 citing papers in PubMed, 31 citations in OpenAlex.
- Parent Views on Parent and Child-reported Outcomes in Pediatric Advanced Cancer: A Qualitative Study.Journal of pain and symptom management · 2025Trial
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- Health-Related Quality of Life in Kindergarten Children with Developmental Language Disorder: Child-Mother Agreement.Behavioral sciences (Basel, Switzerland) · 2023Article
- Child-Parent Agreement in the Assessment of Health-Related Quality of Life Using the CHU9D and the PedsQLApplied health economics and health policy · 2023Article
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- Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs-a scoping review.BMC palliative care · 2023Article
- Disagreement between mothers' and fathers' rating of health-related quality of life in children with cancer.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2023Article
- Article
- Lack of Concordance in Symptomatic Adverse Event Reporting by Children, Clinicians, and Caregivers: Implications for Cancer Clinical Trials.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2022Article
- Health-related quality of life in Italian children and adolescents with congenital heart diseases.BMC cardiovascular disorders · 2022Article
- Profile Comparison of Patient-Reported and Proxy-Reported Symptoms in Pediatric Patients With Cancer Receiving Chemotherapy.JAMA network open · 2022Article
- Severe Fatigue Is Common Among Pediatric Patients with Primary Immunodeficiency and Is Not Related to Disease Activity.Journal of clinical immunology · 2021Article
- Development of National Cancer Database for Cost and Quality of Life (CaDCQoL) in India: a protocol.BMJ open · 2021Article
- Quality of Life and Mental Health in Mothers and Fathers Caring for Children and Adolescents with Rare Diseases Requiring Long-Term Mechanical Ventilation.International journal of environmental research and public health · 2020Article
- Review
- Comparison of child and family reports of health-related quality of life in pediatric acute lymphoblastic leukemia patients after induction therapy.BMC pediatrics · 2020Article
- Family Communication About Cancer in Korea: A Dyadic Analysis of Parent-Adolescent Conversation.Global qualitative nursing researchArticle
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Authors and funding
8 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeProxy reports of health-related quality of life (HRQoL) are commonly used in pediatric oncology. However, it is not known if caregivers' reports differ. This study therefore aims to compare paternal and maternal proxy reports, and explore determinants of couple disagreement (sociodemographic and medical characteristics, and parental QoL and distress).
methodsBoth parents completed the PedsQL generic (child's HRQoL), Short Form-12 (own QoL) and Distress Thermometer for Parents. To assess agreement in child HRQoL, intra-class correlation coefficients (ICCs) were calculated. Differences between fathers/mothers were assessed with paired t tests. Systematic disagreement patterns were visualized with Bland-Altman plots. Characteristics of parental couples with a mean proxy difference in the highest quartile (highest proxy score minus lowest proxy score) were explored with multiple logistic regression analysis.
resultsParents of 120 children with cancer (87% post-treatment, mean age 11.0 ± 5.7 years) participated. No significant differences were found between paternal and maternal proxy scores, and agreement was good on all scales (ICCs 0.65-0.83). Bland-Altman plots revealed no systematic disagreement patterns, but there was a wide range in magnitude of the differences, and differences went in both directions. Couples with a mean proxy difference (irrespective of which direction) in the highest quartile (± 20 points) were more likely to have a child in active treatment, with retinoblastoma or relapsed disease, and to diverge in their own QoL.
conclusionsIf proxy reports of only one parent are available, clinicians may reasonably assume that paternal and maternal reports are interchangeable. However, if in doubt, respondent's sex is not of major importance, but clinicians should be aware of patient's and family's characteristics.
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