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Qual Life Res. 2018 Jul;27(7):1877-1884. doi: 10.1007/s11136-018-1854-z. Epub 2018 Apr 18.

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

Author information

1
Department of Epidemiology and Cancer Control MS735, St. Jude Children's Research Hospital, 262 Danny Thomas Place, Memphis, TN, 38105, USA.
2
Department of Oncology, St. Jude Children's Research Hospital, Memphis, TN, USA.
3
Children's Hospital of Philadelphia, Philadelphia, PA, USA.
4
Department of Pediatric Medicine, St. Jude Children's Research Hospital, Memphis, TN, USA.
5
Department of Biostatistics, St. Jude Children's Research Hospital, Memphis, TN, USA.
6
Department of Epidemiology and Cancer Control MS735, St. Jude Children's Research Hospital, 262 Danny Thomas Place, Memphis, TN, 38105, USA. i-chan.huang@stjude.org.

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.

KEYWORDS:

Cancer survivorship; Fatigue; Pain; Patient-reported outcomes measurement information system; Positive affect; Psychological stress

PMID:
29671249
PMCID:
PMC6021175
[Available on 2019-07-01]
DOI:
10.1007/s11136-018-1854-z

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