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Quality of Life Research

Erschienen in:

01.02.2013

Missing content from health-related quality of life instruments: interviews with young adult survivors of childhood cancer

verfasst von: Gwendolyn P. Quinn, I-Chan Huang, Devin Murphy, Katie Zidonik-Eddelton, Kevin R. Krull

Erschienen in: Quality of Life Research | Ausgabe 1/2013

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Abstract

Purpose

Young adult survivors of childhood cancer (YASCC) are an ever-growing cohort of survivors due to increasing advances in technology. Today, there is a shift of focus to not just ensuring survivorship but also the quality of survivorship, which can be assessed with standardized instruments. The majority of standardized health related quality of life (HRQoL) instruments, however, are non-specific to this age group and the unique late effects within YASCC populations. The purpose of this study was to investigate the relevance and accuracy of standardized HRQoL instruments used with YASCC.

Methods

In a previous study, HRQoL items from several instruments (SF-36, QLACS, QLS-CS) were examined for relevance with a population of YASCC. Participants (n = 30) from this study were recruited for a follow-up qualitative interview to expand on their perceptions of missing content from existing instruments.

Results

Respondents reported missing, relevant content among all three of the HRQoL instruments. Results identified three content areas of missing information: (1) Perceived sense of self, (2) Relationships, and (3) Parenthood.

Conclusions

Existing HRQoL instruments do not take into account the progression and interdependence of emotional development impacted by a cancer diagnosis. The themes derived from our qualitative interviews may serve as a foundation for the generation of new items in future HRQoL instruments for YASCC populations. Further testing is required to examine the prevalence, frequency, and breadth of these items in a larger sample.

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Titel: Missing content from health-related quality of life instruments: interviews with young adult survivors of childhood cancer
verfasst von: Gwendolyn P. Quinn
I-Chan Huang
Devin Murphy
Katie Zidonik-Eddelton
Kevin R. Krull
Publikationsdatum: 01.02.2013
Verlag: Springer Netherlands
Erschienen in: Quality of Life Research / Ausgabe 1/2013
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-012-0120-z

Springer Medizin

Abstract

Purpose

Methods

Results

Conclusions

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