What Questions Do Families of Patients With Early-Stage Prostate Cancer Want Answered?

Abstract
The study was designed to determine the questions that family members of recently diagnosed early-stage prostate cancer patients want addressed and to compare their information priorities with the patient’s priorities. Surveys were distributed to families of 38 patients who had also been surveyed. Respondents judged the importance of each of 93 questions (essential/desired/no opinion/avoid). Twenty-two (58%) family members responded. Most respondents rated most questions as essential (mean: 51 of 93 questions); however, overall, agreement on question ratings was poor (mean agreement: 42.5%, kappa: 0.19). Agreement between a patient and his family member was only slightly better (mean: 56.4%). A core set of 29 questions was identified that most (> 67%) respondents agreed were essential. Although a core set of important questions could be identified, that core would not cover most family members’ essential information needs. The information priorities of the patient often differ from those of his family.