The value of the marginalia as an adjunct to structured questionnaires: Experiences of men after prostate cancer surgery

In both research and clinical settings, men who survive prostate cancer emphasize the need for more open communication about the challenges they face. They explain that symptomatic dysfunction associated with treatment is grounded in complex social situations and relationships. Yet, structured quality of life questionnaires preclude expressions of the elaborate accounts they often evoke. We explore this in the case of prostate cancer. Seventy-one patients who had undergone radical prostatectomy at a mid-Atlantic University Medical Center, a Veterans Affairs medical center affiliated with the same university, or were US members of an international prostate cancer support group completed a survey protocol including assessments of urinary morbidity, psychosocial adjustment to illness (PAIS), and health status (SF-36). At the conclusion, a single open-ended item was offered; 48 offered an extended response. The open-ended item was recorded and analyzed qualitatively. Data were summarized according to four main themes: (1) quality of patient-physician communication; (2) change in sexual identity; (3) fear of cancer; and (4) the humiliation of urinary incontinence. Future research on outcomes of treatment and clinical inquiry must focus on methods that systematically capture patients' experiences.