The experience of patients with early-stage testicular cancer during the transition from active treatment to follow-up surveillance

Purpose: To gain a better understanding of the experiences of patients with early-stage testicular cancer during the transition from active cancer treatment to follow-up care.

Materials and methods: Cross-sectional multimethod study (questionnaires, focus groups, and telephone interviews) to describe experiences of patients with testicular cancer transitioning to survivorship. Questionnaire package included standardized measures of survivorship knowledge, feeling of preparedness, health-related distress, and perspectives on care coordination. Standard descriptive statistics and Mann-Whitney tests to examine associations between all outcomes based on demographic and clinical variables were performed. Qualitative results (focus groups and interviews) were analyzed with qualitative content analysis.

Results: Based on quantitative data (n = 90) and qualitative analyses (n = 13), participants had relatively high survivorship knowledge, most testicular cancer survivors were not provided with any formal transition planning or documentation, and a substantial minority felt unprepared to cope with the aftereffects of testicular cancer and the posttreatment survivorship phase. Younger men had lower survivorship knowledge, feelings of preparedness, and continuity of care scores and were less likely to report having received any self-management tools and education or information of patient resources. Participants reported that they did not know what to expect physically or emotionally after treatment ended and many continued to be frustrated and worried about their health problems. They expressed the need for reliable and personalized resources on what to expect after treatment and more formal transition care planning.

Conclusions: Patients with testicular cancer continue to struggle in their transition to posttreatment survivorship. Quality of care must emphasize a shift from a purely disease-focused approach to a wellness-centered approach that provides coordinated, patient-centered, and comprehensive care to optimize quality of life for these survivors.