Patients’ And Family Members’ Decision Making And Information Disclosure Preferences: A Single-center Survey In China

Background:With fast development of the society, patients and family caregivers begin to learn more medical knowledge from the Internet and TV, so they hope and are asked to participate in treatment decision now more than ever. However, how actively patients want to participate in making decisions remains controversial, especially in cancer field. Over the past 40 years, there has been a shift from patients preferring a ‘paternalistic attitude’ role from their physicians to a more active and decisive role for themselves.The disclosure of diagnosis to the cancer patient or the family member has always been a very hot topic for a lot of years. Over the past few years, attitudes toward the cancer patient’s information disclosure have changed dramatically around the world. Many researchers have found that cancer patients wanted to know the true information of their diseases. From the view of medical ethics and laws, a large majority of physicians believed that they should tell the diagnosis to cancer patients. However, in order to protect the patients from despair and hopelessness, family members usually chose to hide the true information. According to Chinese culture, family caregiver’ preference is the most important in cancer information disclosure. So the doctors usually tell the real information to family members first, then the family members decide whether or not to disclose real diagnostic and prognostic information to cancer patients.The research about decision making and information disclosure preference have been carried out in many developed counties, such as America, Canada, and Germany. However, similar researches have been rarely reported in China. In order to provide high-quality medical care and improve patients’ satisfaction, understanding patients’ preferences for decision making and information disclosure is critical.Objectives:1、The first objective was to examine the feasibility of using questionnaires, and further identify modifications needed in design of a larger study.2 、 The second objective was to describe the decision making and information disclosure preferences of the patients and their family members. Meanwhile, we want to identify whether the preferences are related to various factors.Methods:1、A total of 33 pairs of patients with advanced gastrointestinal cancers and their family members were asked to complete questionnaires after they have made treatment decisions and signed the informed consent. Analyses were performed using the Statistical Package for Social Sciences(SPSS) statistic software(Version 13.0). We discussed our data with the foreign experts to examine the feasibility of using the original questionnaires, and further identify modifications needed in Chinese population. Then, we modified the original questionnaires in order to carry out this study in China.2、Two hundreds patients with advanced cancer(local recurrence or distant metastasis) and their family members were surveyed using the modified questionnaires, after the treatment decision had been made. We put all data in the Excel. Then, we used the SPSS(Version 13.0) to analyze our data.Results:1, Among the 33 pairs of participants, 63.6%(21/33) patients and 60.1%(20/33) family members had an educational level that was middle school and below. There were 60.1%(20/33) patients and 72.7%(24/33) family members who completed the questions in a wrong way due to misunderstanding. There were 33.3%(11/33) patients and 24.2%(8/33) family caregivers had difficulty in understanding some of the options on the original questionnaires. In addition, approximately 50%(33/66) of participants found it was difficult to express their options in 0-10 score numbers.2、Among the 200 pairs of participants, the patients’ mean age was 56.5 years, 28.5% were female. The mean Karnofsky Performance Scale score was 80. The family members’ mean age was 47.2 years, 58.5% were female.3、Patients’ preferences for decision making were 30.5%(61/200) for passive, 67.5%(135/200) for shared, 2%(4/200) for active; While the family members’ preferences were 36.5%(73/200) for passive, 61%(122/200) for shared, and 2.5%(5/200) for active decision making.4、In univariate analysis, the religion(p=0.016) and the medical expense by patient(p=0.001) were correlated with patient’s decision making preference. Age(p=0.021), the payment by patient(p<0.001) and the payment by insurance(p<0.038) had a significant influence on the family member’s decision making preference.5、In multivariate logistic regression, increased portion of payment by the patient was positively correlated with a lower preference for patient’s passive decision making(OR=0.048, 95%CI 0.009-0.253) and family member’s passive decision making(OR=0.056, 95%CI 0.012-0.256). And patient’s religion was associated with a higher preference for patients’ passive decision making(OR=3.452, 95% CI 1.304-9.138).6、All patients and family members wanted to receive information about the diagnosis and the chances of being cured, but 50% family members desired to hide the true information.Conclusions:1、Because Chinese patients had lower education level, they can’t understood the original questionnaires well that were widely used in the developed countries. Therefore, it was necessary to modify and simplify the original questionnaires so that we can do this study in China.2、Chinese advanced cancer patients and family members preferred to make shared decisions. The least preferred option was to make active decision.3、Patient-responsible financial burden correlated with patients’ and family members’ desire for active decision making. Patient’s religion was also associated with a higher preference for patients’ passive decision making.4、Despite all patients and family members wanted to receive information about the diagnosis and the chances of being cured, only half of family members would like to tell the true information.