Abstract

PurposeProviding appropriate information to patients about their illness helps them to cope with the diagnosis. Shared decision making is a key concept in managing patients with cancer. There are no data available about the desire for information and preference for participation in treatment decisions among Indian patients with cancer. The objective of this study was to estimate the proportion of patients who have information needs and to study the patient preference for participation in treatment decisions and the factors associated with them.MethodsA cross-sectional survey was conducted among patients with cancer older than 18 years. They were interviewed with a questionnaire after signing an informed consent. The association of sex, educational level, residence, diagnosis (type of cancer), Eastern Cooperative Oncology Group performance status, and treatment status with information needs and decision-making preference was analyzed using χ2 testResultsApproximately 81% of patients said that they had an absolute need to know if the illness was cancer, and > 70% of patients either had an absolute need to know or would like to know about the prognosis, treatment options, and adverse effects. Regarding the decision-making preferences, 97% wanted their treating physicians to make the decision regarding their treatment, and 66% preferred to share decision making with their family.ConclusionThe majority of the patients with cancer expressed a need for knowing whether they had cancer. When it comes to treatment decisions, most of them preferred a passive role, and the majority wanted to involve their families in the decision-making process. We recommend that the treating physician should elicit the patient’s preference in participating in treatment decisions and their preference about involving their family in making treatment decisions

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