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Importance ratings on patient-reported outcome items for survivorship care: comparison between pediatric cancer survivors, parents, and clinicians

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Abstract

Purpose

To compare importance ratings of patient-reported outcomes (PROs) items from the viewpoints of childhood cancer survivors, parents, and clinicians for further developing short-forms to use in survivorship care.

Methods

101 cancer survivors, 101 their parents, and 36 clinicians were recruited from St. Jude Children’s Research Hospital. Participants were asked to select eight items that they deemed useful for clinical decision making from each of the four Patient-Reported Outcomes Measurement Information System Pediatric item banks. These item banks were pain interference (20 items), fatigue (23 items), psychological stress (19 items), and positive affect (37 items).

Results

Compared to survivors, clinicians rated more items across four domains that were statistically different than did parents (23 vs. 13 items). Clinicians rated five items in pain interference domain (ORs 2.33–6.01; p’s < 0.05) and three items in fatigue domain (ORs 2.22–3.80; p’s < .05) as more important but rated three items in psychological stress domain (ORs 0.14–0.42; p’s < .05) and six items in positive affect domain (ORs 0.17–0.35; p’s < .05) as less important than did survivors. In contrast, parents rated seven items in positive affect domain (ORs 0.25–0.47; p’s < .05) as less important than did survivors.

Conclusions

Survivors, parents, and clinicians viewed importance of PRO items for survivorship care differently. These perspectives should be used to assist the development of PROs tools.

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Funding

This stud is supported by the National Cancer Institute (U.S.) Grants P30 CA021765-33 (Roberts C) and U01 CA195547 (Hudson MM & Robison LL) and National Institute of Arthritis and Musculoskeletal and Skin/National Institute of Health (U.S.) Grant U19 AR069525 (Forrest CB & Huang IC).

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Authors and Affiliations

  1. Department of Epidemiology and Cancer Control MS735, St. Jude Children’s Research Hospital, 262 Danny Thomas Place, Memphis, TN, 38105, USA

    Conor M. Jones, Rachel M. Keesey, Ruth J. Eliason, Jennifer Q. Lanctot, Kirsten K. Ness, Kevin R. Krull, Melissa M. Hudson, Leslie L. Robison & I-Chan Huang

  2. Department of Oncology, St. Jude Children’s Research Hospital, Memphis, TN, USA

    Justin N. Baker & Melissa M. Hudson

  3. Children’s Hospital of Philadelphia, Philadelphia, PA, USA

    Jennifer L. Clegg & Christopher B. Forrest

  4. Department of Pediatric Medicine, St. Jude Children’s Research Hospital, Memphis, TN, USA

    Belinda N. Mandrell

  5. Department of Biostatistics, St. Jude Children’s Research Hospital, Memphis, TN, USA

    Deokumar Srivastava

Authors
  1. Conor M. Jones
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  2. Justin N. Baker
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  3. Rachel M. Keesey
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  4. Ruth J. Eliason
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  5. Jennifer Q. Lanctot
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  6. Jennifer L. Clegg
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  7. Belinda N. Mandrell
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  8. Kirsten K. Ness
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  9. Kevin R. Krull
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  10. Deokumar Srivastava
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  11. Christopher B. Forrest
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  12. Melissa M. Hudson
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  13. Leslie L. Robison
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  14. I-Chan Huang
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Corresponding author

Correspondence to I-Chan Huang.

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Conflict of interest

The authors declare no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Declaration of Helsinki and its later amendments or comparable ethical standards. St. Jude’s Children’s Research Hospital Institution Review Board approved the study protocol.

Informed consent

Written informed consent was obtained from all individual participants included in the study.

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Jones, C.M., Baker, J.N., Keesey, R.M. et al. Importance ratings on patient-reported outcome items for survivorship care: comparison between pediatric cancer survivors, parents, and clinicians. Qual Life Res 27, 1877–1884 (2018). https://doi.org/10.1007/s11136-018-1854-z

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  • DOI: https://doi.org/10.1007/s11136-018-1854-z

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