Informing Psychosocial Oncology Care Delivery for Young Women with Breast Cancer and Their Partners: A Cross-Sectional Examination of Unmet Service Needs in the First Year Post-Diagnosis

Background and Purpose: Young women represent 25% of newly diagnosed breast cancer cases annually and approximately 250,000 young adult survivors were diagnosed under the age of 40 in the U.S. Young women report greater psychological and physical morbidity than older women and healthy peers, including significant impairment in quality of life. Partners may play a protective role in preserving quality of life by providing practical and emotional support. However, young couples are vulnerable to substantial cancer-related stress due to physical and emotional trauma related to diagnosis and treatment, impaired body image and sexual functioning, competing role demands in growing families, the effects of cancer on close relationships, and sustained financial distress. Further, psychosocial oncology support programs are not frequently attuned to the needs of young adult patients given the relative rate of diagnosis for this age-group. Programs may focus exclusively on the needs of the patient, excluding family and social networks that support coping. This marks a critical gap in psychosocial care delivery of young adult breast cancer patients and their partners. This study adds to a nascent evidence base by assessing unmet service needs reported by young women and their partners in the year following a cancer diagnosis.

Methods: This study used a cross-sectional survey design. A sample of 83 patients aged 18-45 and 40 intimate partners completed a service use questionnaire as part of a larger stress and dyadic coping study. Researchers partnered with oncology social work practitioners to adapt a service needs survey to the psychosocial issues and needs reported by young women served by the department. The resulting 25 items assessed felt needs and service utilization across three domains: informational resources, emotional needs, and practical support services. Participants used a 4-point Likert scale to indicate whether each item constituted an area of need and whether they had used services to address that need. “Unmet needs” existed if a respondent endorsed a need but the corresponding services were not accessed. Descriptive statistics and cross-tabulations using SPSS Software were used to summarize the proportion of patients and partners indicating unmet needs and to examine differences by sociodemographic, clinical, and relational variables.

Results: Approximately 60% of patients and 40%-77% of partners presented one or more unmet need across the three domains. For both, unmet supportive needs included access to age-appropriate program content (46%; 45.6%), counseling related to sexuality (46.4%; 47.3%) and family relations (37.2%; 35.7%). Women reported unmet needs services related to work/school accommodations (47.4%) and financial concerns (46.6%), while men reported financial concerns, health insurance, and caregiving demands were practical priorities (46.7%; 40%; 38.5%). Informational needs regarding cancer recurrence, symptom management, and treatment decision-making, although elevated, were generally met by the institution.

Conclusions and Implications: Substantial proportions of unmet service needs exist for young women with breast cancer and their partners. Challenges were exacerbated by the lack of developmentally targeted psychosocial programs pertaining to supportive and practical needs. Clinician-researchers make effective teams, and should examine the feasibility of designing, implementing and scaling such programs into standard care.