Desire for Information and Preference for Participation in Treatment Decisions in Patients With Cancer Presenting to the Department of General Surgery in a Tertiary Care Hospital in India

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

Knowledge and Attitude of Newly Diagnosed Breast Cancer Patients and Their Accompanying Attendants About Multimodality Treatment for Breast Cancer

“…Gilani et al and Kraetschmer et al in their studies found that patients and accompanying attendants prefer an active role when the trust levels are less with the treating surgeons [12][13]. Sankar et al found that Indian patients and their accompanying attendants are used to a paternalistic approach when the trust levels are higher with their treating surgeon [7]. This may be the reason why the majority of this study's patients played a passive role in MMT.…”

“…In this study, similar results were seen with regards to the preference for the active role while there was an abrupt contrast in the number of patients preferring a collaborative or passive role. The majority of Indian patients prefer a passive role in their treatment due to a lower level of education and their preference to give importance to their health than their personal appearance [7,11]. Gilani et al and Kraetschmer et al in their studies found that patients and accompanying attendants prefer an active role when the trust levels are less with the treating surgeons [12][13].…”

“…A collaborative role with the accompanying attendants has been shown to be associated with improved outcomes in breast cancer patients. Sankar et al found that involving accompanying attendants increased patient satisfaction in their treatment pathway [7]. Few studies found that an active role controlled by family members was more common among Asians [7,13].…”

“…Patients and their accompanying attendants were interviewed with a standardized questionnaire after obtaining informed consent. The questionnaire used was validated in the Indian set up [7].…”

The Effect of Using the Question Prompt List on Shared Decision Making, Self-Efficacy in Decision Making, and Preferences for Participation Among Women with Breast Cancer: A Study Protocol

“…Patients with cancer need to be aware of their potential treatment options at all stages of their illness trajectory. Based on the findings in previous studies, patients may face challenges in making personal decisions about treatment during a highly stressful time (29). However, time is an important factor in cancer treatment, given the potential for disease advancement.…”