Ensuring patient centeredness in upper extremity lymphedema research: Identifying patient-prioritized agenda and preferences Journal Article
| Authors: | Kaur, M. N.; Cornacchi, S. D.; Klassen, A. F.; Haykal, S.; Hircock, C.; Mehrara, B. J.; Dayan, J. H.; Vasilic, D.; Pusic, A. L. |
| Article Title: | Ensuring patient centeredness in upper extremity lymphedema research: Identifying patient-prioritized agenda and preferences |
| Abstract: | Purpose: To elicit a patient-prioritized agenda and preferences for upper extremity lymphedema (LE) research. Methods: Focus group sessions (FGs) were conducted with English-speaking, adult women (18 years and older) with breast cancer-related LE (BCRL) seeking conservative or surgical care at two tertiary cancer centers in Ontario, Canada. An interview guide was used; women were asked to describe health-related quality of life (HRQL) outcomes that mattered the most to them, followed by their preferences for research study design and for providing patient-reported outcomes measure (PROM) data. Inductive content analysis was used to identify themes and subthemes. Results: A total of 16 women participated in 4 FG sessions (55 ± 9.5 years) and described the impact of LE on their appearance, physical, psychosocial, and sexual well-being. Women emphasized that psychosocial well-being was often not discussed in clinical care and that they were poorly informed of LE risk and care options. Most women said that they would not be willing to be randomized to surgical versus conservative management of LE. They also expressed a preference to complete PROM data electronically. All women emphasized the value of having an open text option alongside PROMs to expand on their concerns. Conclusion: Patient centeredness is key to generating meaningful data and ensuring ongoing engagement in clinical research. In LE, comprehensive PROMs that measure a range of HRQL concerns, especially psychosocial well-being, should be considered. Women with BCRL are reluctant to be randomized to conservative care when a surgical option is available, resulting in implications for planning trial sample size and recruitment. © 2023 British Association of Plastic, Reconstructive and Aesthetic Surgeons |
| Keywords: | breast cancer; health-related quality of life; patient-reported outcomes; study design; arm lymphedema; patient preferences |
| Journal Title: | Journal of Plastic Reconstructive and Aesthetic Surgery |
| Volume: | 83 |
| ISSN: | 1748-6815 |
| Publisher: | Elsevier Science, Inc. |
| Date Published: | 2023-08-01 |
| Start Page: | 326 |
| End Page: | 333 |
| Language: | English |
| DOI: | 10.1016/j.bjps.2023.04.036 |
| PROVIDER: | scopus |
| PUBMED: | 37302238 |
| DOI/URL: | |
| Notes: | Article -- Source: Scopus |
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