You Need to Know More to Understand My Scoring on the Survey : Free-Text Comments as Part of a PROM-Survey of Men with Prostate Cancer

Abstract

Prostate cancer and its treatment have long-term implications for men's lives. We aimed to describe the content, extent, and frequency of written comments to the open-ended question, "Further comments?" in the patient-reported outcome measures questionnaire. During the study period, 897 men participated; 372 wrote 747 free-text comments in the questionnaire. These comments were analysed using qualitative content analysis and were grouped into four categories: 1) prostate cancer's influence on health; 2) clarifications of answers to the survey; 3) descriptions of well-being despite the cancer; and 4) experiences of care and the need for contact with health care. The distribution of the comments shifted over time. The open-ended question not only allowed the participants to explain their other responses and describe important aspects of their lives during and after treatment, something not normally covered by a questionnaire, but it also indicated their experiences of health care services along the patients' PC-trajectory. This further raises the issue of including an open-ended item in a forced-choice survey into the ethical realm to ensure that proper care is taken of participants’ answers and thoughts.