A randomised online experimental study to compare responses to brief and extended surveys of health-related quality of life and psychosocial outcomes among women with breast cancer

Kerry Ettridge, Joanna Caruso, David Roder, Ivanka Prichard, Katrine Scharling-Gamba, Kathleen Wright, Caroline Miller

Research output: Contribution to journalArticlepeer-review

Abstract

Purpose: Collecting patient-reported outcomes is important in informing the well-being of women with breast cancer. Consumer perceptions are important for successful implementation of monitoring systems, but are rarely formally assessed. We compared reactions to two different surveys (assessing psychosocial outcomes and/or Health-related Quality of Life (HrQoL) outcomes) among Australian women with breast cancer. Methods: Women (18 + years) within 5 years diagnosis of breast cancer were randomly allocated to complete one of two online surveys: (i) minimum HrQoL measures or (ii) minimum HrQoL measures plus psychosocial outcomes (body image, depression, anxiety stress, fear of cancer recurrence, decisional difficulties and unmet need). Participants completed questions regarding their perceptions of the survey, including qualitative feedback. Results: Data were available for 171 participants (n(i) = 89; n(ii) = 82), with 92% (n = 158) providing 95–100% complete data. Perceptions were comparable between survey groups, and high (80–100%) regarding time burden, ease of completion, comprehensible, appropriateness and willingness to participate again and moderately high (67–74%) regarding willingness to answer more questions and relevance. Qualitative feedback indicated gaps across both surveys, including financial/work-related issues, satisfaction with information and care, need for nuanced questions, and impact of side effects/treatment, and from the minimum set only, emotional well-being and support. Impairment in some HrQoL and psychosocial outcomes were observed among participants. Conclusions: Assessment of HrQoL and psychosocial outcomes was well received by consumers. Results alleviate concern regarding possible patient burden imposed by longer more in-depth surveys. The importance placed on assessment brevity should not outweigh the need to assess outcomes that consumers consider important.

Original languageEnglish
Number of pages17
JournalQuality of Life Research
Early online date19 Sep 2020
DOIs
Publication statusE-pub ahead of print - 19 Sep 2020

Keywords

  • Breast cancer
  • Consumer perspectives
  • Health-related quality of life (HrQoL)
  • Patient-reported outcome measures (PROMs)
  • Psychosocial

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