The Status And Associated Factors Of Primary Liver Cancer Patients Involved In Treatment Decision Making Procedures

Objective1. To investigate the current situation and attitudes of Primary Liver Cancer(PLC) patients for participating in treatment decision making and related factors.2. To explore perspective and influencing factors of PLC patients and their families concerning patients’ participation in treatment decision.3. To get the current situation and related factors of PLC patients’ participation in treatment decision making from doctors’ perspectives.4. To explore perspective and influencing factors of doctors concerning PLC patients’ participation in treatment decision.Methods1. A convenient sampling method of 556 PLC inpatients in one of Class Ⅲ specialized hospitals in Shanghai were carried out from February to September, 2014. The survey instrument included general information, KPS scale, and questionnaire of PLC patients’ participation in treatment decision Chinesized by Ma Lili. Statistical package of SPSS(17.0) was used, containing statistical description, Kappa test, Chi-square test and Logistic regression analysis. We would understand the current situation and attitudes of PLC patients for participation in treatment decision making and related factors.2. A qualitative phenomenological research was performed and a purposive sampling method of 8 PLC patients with 10 relatives in one of Class Ⅲ specialized hospitals in Shanghai from February to September, 2014 was carried out. By semi-structured interview, we explored perspective and influence factors of PLC patients and their families concerning patients’ participation in treatment decision making by coding and refining theme.3. We translated the 9 item shared decision making questionnaire physician version created into Chinese. A convenient sample of 106 doctors in one of Class Ⅲ specialized hepatobiliary hospitals in Shanghai was carried out.The doctors were selected from different departments of treating primary liver cancer, such as surgical department, intervention therapy department, micro-invasive therapy department and biotherapy department. SPSS(17.0) was used, containing statistical description, ANOVO analysis, Spearman relation analysis. We would get current situation and related factors of PLC patients’ participation in treatment decision making from doctors’ prspectives.4. A qualitative phenomenological research was performed and a purposive sample of 11 doctors in one of Class Ⅲ specialized hospitals in Shanghai was carried out. By semi-structured interview, we explored perspective and influence factors of doctors concerning PLC patients’ participation in treatment decision making by coding and refining theme.Results1. The results of the questionnaire for 556 PLC patients are as follows:(1) Among 556 Primary Liver Cancer patients, there are 384 cases with positive attitudes on participating in treatment decision-making, accounting for 69.1%; and 172 cases with a negative attitude, accounted for 30.9%. The mean score of attitudes was(1.37±0.41). However, there are 121 cases in actively participation in treatment decision-making, accounted for only 21.8%; passive participation of 435 cases, accounted for 78.2%. The actual level of total score was(1.82 ±0.41).(2) Actual extent and attitudes were consistent with the Kappa index of 0.186. The consistence existed in 11 items except item 10 “I have shared decisions with physician”, but the Kappa index was lower than 0.4. The maximum Kappa index was 0.379, which was Item “Physician has made decisions”.(3) We found that truth telling(OR=0.379), respondents’ characteristics(OR=1.644), as well as patients’ satisfaction with medical staff(OR=0.532) were associated with PLC patients’ actual participation in decision-making. The extent of patients’ participation increased as satisfaction with medical staff. The extent of participation for patients who knew the diagnosis was higher than those who had not been told about it. The extent of participation for patients who were extroverted was higher than those who were introverted.(4) The treatment methods were significantly related factor for patients’ attitudes about involvement in treatment decision making. Patients in bio-therapy department and interventional therapy department had more active attitudes than patients in surgery department.2. The results of the interview of 8 PLC patients and 10 for 556 PLC patients are as follows:(1) We got four themes from interview with patients: patients’ attitudes about participation in treatment decision making, advantages of participation, ralated factors and promotion measures.(2) We got four themes from interview with the family members: patients’ actual participation in treatment decision making, related factors, family members’ mental burden and promotion measures.3. We got some results by investigating 106 doctors:(1) The mean score of the 106 doctors was(62.62±23.74). 38.7% doctors greatly agreed with item 3 “I told my patient that there are different options for treating his/her medical condition” and item 4 “I precisely explained the advantages and disadvantages of the treatment options to my patient”. Only 8.5% doctors completely agreed with item 8 “My patient and I selected a treatment option together”.(2) Doctors’ general information such as age, gender, department, years of working, education background, and professional title had no significantly effect on PLC patients’ participation in treatment decision making. The percent of patients who knew the diagnosis of doctors’ view had positive correlation with patients’ participation in treatment decision making. The percent of patients who involved in treatment decision making of doctors’ perspectives had positive correlation with patients’ actual extent of participation.4. We got some results by interviewing 11 doctors:We got five themes by interview with doctors: patients’ actual participation in treatment decision making, doctors’ attitudes about participation in treatment decision making, advantages of participation, ralated factors and promotion measures.Conclusions1. PLC patients had active attitudes about involvement in treatment decision making, however the majority of patients had not been greatly involved. Promoting PLC patients participating in treatment decision making is in a cruicial situation. The promotion should be through pilot stage, evaluation and solving existing problems. In the pilot stage, we need multidisciplinary cooperation among the medical staffs. Patients who know their diagnosis, have outgoing personality, with high satisfaction on medical service should be considered firstly.2. Relatives often have many negative emotions, such as distressed, fear, confusion, injustice, etc. Medical staff should make psychological assessment of liver cancer patients’ families; give appropriate psychological intervention to effectively alleviate the anxiety and depression of family members and to promote the patient’s physical and mental health.3. This study shows Chinese version of shared decision making questionnaire physician version with good reliability and validity. The patients and doctors are consistent in perspectives for PLC patients’ participation in treatment decision making in China.4. Medical staffs should help relatives changing the wrong view, and set up the correct cognition based on accurate assessment and respect for family members’ choice. They should also give PLC patients the appropriate psychological interventions in early stage. The national policy, the public media and healthcare system should work together to create a harmonious and safe medical environment. We hope to promote the liver cancer patients’ participation in treatment decision making in the future.