Differences in Perceived Risk at Which Clinician and Patient Stakeholders Initiate Activities to Prevent Late Effects Among Breast Cancer Survivors

Abstract

Objective: To characterize the level of probability or perceived risk that will trigger patients, physicians, nurses, or therapists to initiate clinical activities to prevent late effects, including chronic physical impairments and adverse symptoms that often occur among breast cancer (BC) survivors. Design: Cross-sectional survey querying participants regarding the level of probability or perceived risk of a patient developing a late effect, 0%-100% visual analog scale, that would cause them to initiate activities to prevent or preemptively address late effects such as lymphedema, upper quadrant pain, chemotherapy-induced peripheral neuropathy, shoulder contracture, and fatigue. Setting: A quaternary medical center and community medical and radiation oncology clinics. Participants: A purposive sample of 50 BC survivors, 10 breast clinic physicians, 10 breast surgeons, 10 radiation oncologists, 10 medical oncologists, 10 breast clinic nurses, and 10 cancer rehabilitation therapists (N=110). Interventions: Not applicable. Main Outcome Measures: Stakeholder ratings of the probability level at which they would initiate clinical activities to prevent BC-related late effects: education, screening, prevention, and therapist referral, scored on a visual analog scale 0%-100% with verbal anchors, to address lymphedema, chronic upper quadrant pain, function-limiting chemotherapy induced peripheral neuropathy, shoulder contracture, and chronic fatigue. Results: For the 5 late effects, mean probability level ranges across the stakeholder groups were ordered as follows: education (2.8-27.1), prevention (8.1-44.1), screening (11.1-50.2), and therapist referral (16.4-59.2). BC survivors had the lowest thresholds for initiating education: lymphedema 2.0, pain 3.6, neuropathy 1.4, shoulder contracture 3.3, and fatigue 3.3. Therapists, in contrast, had the lowest thresholds for initiating all prevention activities except education. When averaged across late effects, mean probability levels for initiating activities were higher among physicians with breast surgeons having the highest mean levels for all activities except therapist referral. Nonetheless, mean probability levels differed significantly between survivors and clinicians (allied health and physicians combined) for only 2 of the 4 prevention activities and in these cases by ≤12%. Conclusions: The probability level or perceived risk of a BC-related late effect at which stakeholders recommended initiating preventive activities differed across groups, with therapists generally having the lowest levels and breast surgeons the highest. However, the mean levels endorsed by survivors were congruent with or differed limitedly from clinicians and should be considered as a guide to initiating activities. Keywords: Breast cancer lymphedema, Breast neoplasms, Chronic pain, Contracture, Lymphedema, Outcome assessment (health care), Pain measurement, Peripheral nervous system diseases, Rehabilitation, Risk, Shoulder