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

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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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Abbreviations

YASCC:

Young adult survivors of childhood cancer

HRQoL:

Health-related quality of life

PTSD:

Post-traumatic stress disorder

SF-36:

Medical Outcomes Study Short Form-36

QOL-CS:

Quality of Life—Cancer Survivors

QLACS:

Quality of Life in Adult Cancer Survivors

MOS-24:

Medical Outcome Study Scale

MCSCS:

Crown Social Desirability Scale

UF:

University of Florida

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Acknowledgments

Funding for this project was provided by NIH/NICHD K23 HD057146-03 and Moffitt/UF/Shands HealthCare Consortium Joint Cancer Center Pilot Fund UF80052.

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Authors and Affiliations

  1. Health Outcomes and Behavior, H. Lee Moffitt Cancer Center and Research Institute, 12902 Magnolia Drive, MRC CANCONT, Tampa, FL, 33612, USA

    Gwendolyn P. Quinn

  2. College of Medicine, University of South Florida, Tampa, FL, USA

    Gwendolyn P. Quinn

  3. Health Outcomes and Policy, College of Medicine, University of Florida, Gainesville, FL, USA

    I-Chan Huang & Katie Zidonik-Eddelton

  4. Jonathan Jaques Children’s Cancer Center, Miller Children’s Hospital, Long Beach, CA, USA

    Devin Murphy

  5. Department of Epidemiology and Cancer Control, St. Jude Children’s Research Hospital, Memphis, TN, USA

    Kevin R. Krull

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  1. Gwendolyn P. Quinn
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  2. I-Chan Huang
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Correspondence to Gwendolyn P. Quinn.

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Quinn, G.P., Huang, IC., Murphy, D. et al. Missing content from health-related quality of life instruments: interviews with young adult survivors of childhood cancer. Qual Life Res 22, 111–118 (2013). https://doi.org/10.1007/s11136-012-0120-z

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