Distress, problems, referral wish, and supportive health care use in breast cancer survivors beyond the first year after chemotherapy completion.

Purpose: We examined distress levels, problems, referral wish, and supportive health care use in a cross-sectional group of breast cancer survivors at two-time points with a 1-year time interval. Also, factors related to continuing elevated distress were explored.

Methods: Breast cancer survivors, 1-5 years after chemotherapy completion, filled in the Dutch Distress Thermometer/Problem List (DT/PL) and questions on background characteristics at study inclusion (T1). DT/PL responses and health care use were discussed during semi-structured interviews. One year later, re-assessment took place (T2). The data were analyzed by descriptive and univariate analyses. Continuing elevated distress was defined as a DT score ≥ 5 at T1 and T2.

Results: Seventy-three survivors completed all questionnaires (response = 84.6%). Eighteen (25%) experienced continuing elevated distress. Fatigue (T1 N = 48 (66%); T2 N = 41 (56%)) and lack of physical fitness (T1 N = 44 (60%); T2 N = 36 (49%)) were most often reported. Time since diagnosis, health care use, and practical, social, emotional and physical problems were significantly associated with continuing elevated distress. Between diagnosis and T1, N = 49(67%) used supportive healthcare services, mostly a psychologist and/or a physical/lymphedema therapist, and between T1 and T2, 39 (53%) did. At T1, 8 (11%) expressed a referral wish and at T2, 11 (16%) did.

Conclusions: Screening and management of distress, problems, and referral wish are important, even years after chemotherapy completion as a substantial proportion of breast cancer survivors continue to report elevated distress and problems. Special attention should be paid to survivors reporting physical problems, especially fatigue and lack of physical fitness, since these problems are most strongly related to continuing elevated distress.