Medicine and Health Sciences Commons^™

Feasibility And Validity Of Asking Patients To Define Individual Levels Of Meaningful Change On Patient-Reported Outcomes, Salene M.W. Jones, Yuxian Du, Ari Bell-Brown, Kaylin Bolt, Joseph M. Unger

Journal of Patient-Centered Research and Reviews

Purpose: Patient-reported outcomes (PROs) are frequently used in clinical care to monitor treatment response. However, most guidelines on PRO use treat all patients the same. This study tested the feasibility and validity of a method for determining individually meaningful change in PRO measures.

Methods: Participants (n = 398) completed 12 pain and distress questions to define individually meaningful change. This mixed-methods study used both quantitative and qualitative analyses, including descriptive statistics, inferential statistics, and content analysis.

Results: Two-thirds (67%) of the sample reported at least one medical condition, including depression and back pain. Most participants (70%–90%) were able to answer …

'No Pink Ribbons': How Women's Lived Experiences With Breast Atypia Inform Decisions Involving Risk-Reducing Medications, Sarah L. Goff, Reva Kleppel, Grace Makari-Judson

Journal of Patient-Centered Research and Reviews

Purpose: Atypical hyperplasia (AH) is associated with a nearly 4-fold elevation of lifetime risk for breast cancer, and lobular carcinoma in situ (LCIS) is associated with a 7- to 8-fold risk. Women with AH/LCIS make numerous decisions in the course of treatment, including whether to take a risk-reducing medication, an option relatively few women pursue. We explored women’s decision-making processes through patient narratives in an effort to inform decision supports for AH/LCIS.

Methods: We conducted in-depth interviews with 20 English-speaking women with AH/LCIS and no subsequent diagnosis of invasive breast cancer who had enrolled in the Rays of Hope Center …