Background: Question prompt lists (QPL) improve doctor-patient communication and increase patient understanding of their cancer and its treatment in western settings. No QPLs have been developed for use in cancer care in India.
Aim: To develop a QPL for Indian cancer patients and their primary family carers (PFCs) undergoing radiation therapy (RT).
Methods: Participants undergoing RT at one hospital in Mumbai, India were recruited. The study comprised 3 phases: (1) interviewing patient-PFCs (n=95) to understand their information needs, queries and concerns regarding RT; (2) developing and translating QPL into Hindi and Marathi; and (3) evaluating the difficulty to ask the doctor, readability and acceptability of the QPL from patients (n=22), PFCs (n=26), and medical staff (n=20). A list of 125 questions was generated in phase 2 and analysed using content analysis.
Results: In phase 1, emergent themes included: (i) questions asked to doctors (e.g., short-term and long-term side-effects, treatment success rate, financial aspect); and (ii) the questions not asked to the doctor but they wish to know about (e.g., diet, exercise, treatment effect on daily routine). Based on these themes, a list of 125 questions was collated, translated and back-translated to ensure accuracy. After several iterations, the draft QPL was finalised (phase 2). In phase 3, most participants reported the need for a QPL. However, patients (n=9) and PFCs (n=8) revealed it would be challenging for them to discuss specific topics (e.g., prognosis, supportive care needs) with their doctors. Medical staff reported difficulty discussing prognosis-related questions due to communication gaps between patient-PFCs.
Conclusion: This study generated a QPL for Indian cancer patients and their PFCs. Participants reported a need for the QPL and recognized its benefits. However, patient-PFCs felt unprepared to use the QPL in consultations. Thus, suggesting a need for a doctor-led QPL for Indian cancer patients and PFCs.