Development of a question prompt list for Indian cancer patients receiving radiation therapy treatment and their primary family caregivers.

Abstract

We aimed to develop two question prompt lists (QPLs), one for Indian cancer patients undergoing radiation therapy and the second for their primary family caregivers. The study comprised three phases: (1) qualitative interviews with patients (n=65) and PFCs (n=39) to identify their information needs, queries and concerns regarding RT; (2) development of draft QPLs using conventional content analysis and translation into Hindi and Marathi using European Organisation Research and Treatment of Cancer guidelines; and, (3) A readability analysis, and acceptability study with patients (n=22), PFCs (n=26) and Radiation Oncology (RO) staff (n=20) exploring barriers to QPL implementation. Analysis in Phase I identified questions patients and PFCs asked or wanted to ask their physician. A list of 125 and 136 questions were generated for patients and PFCs, respectively. After five iterations, the draft QPLs were finalised, translated, and back-translated from English into Hindi and Marathi (Phase II). In Phase III, most patients and PFCs reported the QPLs were easy to read, they did not find it difficult to ask the questions, and the questions were not emotionally upsetting. Conversely, RO staff reported concerns that patients may find it difficult to discuss the questions with their physician. The study highlights the need to empower patients and PFCs to ask questions and for staff to feel comfortable answering them. Implementing physician-endorsed QPLs could achieve these aims.