Information needs assessment and development of information booklet for patients with cancer receiving chemotherapy: A cross-sectional analysis

Abstract

Background: Patients with cancer require a wide variety of information during their illness. Identifying their need for information and providing education are vital responsibilities of nurses and physicians. Objectives: We aimed to assess the information needs of patients with cancer receiving chemotherapy. We then aimed to develop and validate an information booklet, based on the needs assessment. Materials and Methods: This study was conducted among patients with cancer visiting the day care center for chemotherapy at the Shirdi Saibaba Cancer Hospital and Research Center, Kasturba Medical College, a tertiary cancer center in Manipal, India. The information needs of the patients were assessed through a questionnaire. The chemotherapy information module developed was then given to five subject experts for validation. Results: Between Dec 2018 and Feb 2019, we enrolled 245 patients in the study. Of these, 108 (44.1%) expressed a desperate need for information, 136 (55.5%) had a preferred need for information, and 1 (0.4%) did not require any information. The information considered as the absolute need to know by over half (52.7%) the participants was regarding the disease (severity, recurrence, malignancy, and effect on the body), followed by the side-effects of chemotherapy and their management (49%) and psychological support (45.3%). Conclusion: Patients with cancer have the desire to be well informed about their disease, treatment, and side-effects. Education sessions can be planned to improve the chemotherapy-related knowledge of patients with cancer. Regular appraisal of the need for information among patients with cancer is critical, considering the changing needs of the health-care seekers. (Clinical Trials Registry-India number CTRI/2018/11/016378).