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...

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Publicado en:Quality of Life Research Vol. 29; no. 4; pp. 901 - 913
Autores principales: 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.
Formato: research Journal Article
Publicado: Springer Nature Apr2020
Acceso en línea:Ver este registro en EBSCOhost
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      dt: Apr2020
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      pub: Springer Nature
      place: New York, New York
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        10.1007/s11136-019-02365-9
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        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
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