Determinants of health-related quality of life proxy rating disagreement between caregivers of children with cancer.
Purpose: Proxy 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 (sociodemographi...
| Publicado en: | Quality of Life Research Vol. 29; no. 4; pp. 901 - 913 |
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| Autores principales: | , , , , , , , |
| Formato: | research Journal Article |
| Publicado: |
Springer Nature
Apr2020
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=142631890&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 142631890 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 09629343 GPQ jtl: Quality of Life Research issn: 09629343 maglogo: N pubinfo: dt: Apr2020 vid: 29 iid: 4 pid: 237 pub: Springer Nature place: New York, New York artinfo: ui: 142631890 142631890 NLM31820207 142631890 10.1007/s11136-019-02365-9 NLM31820207 142631890 ppf: 901 ppct: 12 formats: fmt: – @attributes: type: T – @attributes: type: P tig: atl: Determinants of health-related quality of life proxy rating disagreement between caregivers of children with cancer. aug: au: Rensen, Niki Steur, Lindsay M. H. Schepers, Sasja A. Merks, Johannes H. M. Moll, Annette C. Kaspers, Gertjan J. L. Van Litsenburg, Raphaële R. L. Grootenhuis, Martha A. affil: Pediatric Oncology, Emma Children's Hospital, Amsterdam UMC, Cancer Center Amsterdam, Vrije Universiteit, Amsterdam, The Netherlands sug: subj: Fathers Psychosocial Factors Neoplasms Therapy Quality of Life Psychosocial Factors Mothers Psychosocial Factors Caregivers Psychosocial Factors Child, Preschool Emotions Middle Age Human Adolescence Adult Male Chronic Disease Psychosocial Factors Child Guardianship, Legal Female Validation Studies Comparative Studies Evaluation Research Multicenter Studies Scales Child, Preschool: 2-5 years Middle Aged: 45-64 years Adolescent: 13-18 years Adult: 19-44 years Child: 6-12 years Male Female ab: Purpose: Proxy 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).Methods: Both 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.Results: Parents 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.Conclusions: If 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. pubtype: Academic Journal doctype: research Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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