SDM is important because it ensures that patients’ values, preferences, beliefs and their contextual factors guide all clinical decisions in an evidence-based context . The results of this study indicated that actual participation and perceived importance of SDM on treatment and care among lung cancer patients was low. Furthermore, the actual participation of lung cancer patients in SDM on treatment and care was lower than their perceived importance. This suggested that although participants perceived that participation in SDM on treatment and care was important, their actual participation was not high.
The results of this study suggested that patients with higher education actually participated to a greater extent and perceived importance of SDM on treatment and care . Patients with low education level had difficulty in understanding the complexities of medical science or even communicating with healthcare professionals, making it difficult for them to make the best choices. Patients with a high level of education were more likely to receive disease-related information. Studies demonstrated that lung cancer patients would be very interested in the treatment and care process if they had access to sufficient information (19,25-26).
Although Chinese existing health insurance policy has wide coverage, not all anticancer drugs mainly used by cancer patients are included in the healthcare system. It is still a heavy burden especially for low-income cancer patients in rural China . We speculated that this group of patients develop thoughts of abandoning treatment due to the high cost of treatment and care, and had difficulty actively participating in SDM. However, it does not preclude the possibility that some of these patients may be more active in discussing cost-efficient treatment options with clinicians and have a higher level of SDM. Therefore, the impact of income level on lung cancer patients' participation in SDM needs to be further explored.
Divorced and widowed patients considered it was important to participate in SDM on treatment and care. Some studies had shown that family involvement in SDM for cancer patients was associated with a better understanding of cancer-related information . In the absence of family support, divorced and widowed patients would engage in the three-talk model on their own and make informed decisions with clinicians. In this context, medical staff should provide adequate decision support to patients, and information about patient's concerns (treatment modalities, side effects, prognosis).
Men and younger patients were actually more participate in SDM on treatment. Male patients generally took on more responsibility in the family and could analyze treatment more rationally. Younger patients are more receptive to the disease and more knowledgeable about relevant information than the elderly. As a result, male and younger patients more actively participated in SDM on treatment.
We also found that patients who were extroverted and had more children actually had higher levels of SDM involvement in care. We speculated that extroverted patients were willing to participate in care decision and chose more appropriate care for themselves. Patients with more children had stronger family support systems. For complex methods of care, the children of this group of patients would help them understand, which would help increase the patient's motivation to participate in care decisions.
Patients diagnosed with cancer less than 3 months may be in a fear psychological stage . They fear and refuse to acknowledge that they have been confirmed to have lung cancer. Lung cancer patients diagnosed within 3–6 months underwent chemotherapy and experienced intolerable adverse effects that make them resist treatment and care options. As a result, patients at this stage have a low level of actual participation of SDM on their treatment and perceive SDM as unimportant in treatment and care. Lung cancer patients with a course of more than 6 months may be in the adaptation period, accept their own diagnostic facts, actively participate in the treatment and care of SDM and discuss more useful programs.
TNM stage is an important determinant of survival in lung cancer patients . For patients with stage III lung cancer, the five-year survival rate is much lower than for stages I and II, and most patients receive chemotherapy and radiotherapy with enduring adverse reactions . Therefore, we speculated that patients with stage III lung cancer were not better off after receiving treatment and did not consider decision on treatment approach to be important. We found that stage IV patients considered SDM on care to be more important. The five-year survival rate for patients with stage IV lung cancer pathology was estimated to be 13%, compared to 2% for clinical stage IV patients . Patients with stage IV lung cancer present with symptoms such as cough, dyspnea, hemoptysis and chest pain. For these reasons, we speculate that patients prefer care methods that promote a better quality of life rather than pursuing a longer survival rate. Therefore, they focus more on the care approach.
Healthcare professionals can use patient decision aids to help patients understand the treatment process and encourage them to express their wishes. The patient decision aids website, established by the Ottawa Hospital Research Association, is a platform that provides decision support . We can directly download and use the patient decision aids list for lung cancer screening patients on this platform. A patient decision aid for treatment selection for lung cancer patients had been developed in the Netherlands (http://www.keuzehulp-longkanker.nl/). Patients can comprehensively consider the pros and cons of surgery and targeted radiotherapy based on the information on this website and decide together with their clinician.
Decision coaching is another form of patient decision aids, which is developed in accordance with IPADS . Rahn et al. (2018) conducted a preliminary randomized controlled study in which a decision aid implemented by a nurse-led decision coach facilitated patient participation in SDM . Also, there was evidence that decision coaching could avoid decision-making entanglement and improve the quality of communication with patients and facilitate their learning .
The MAGIC program, proposed by the British Health Foundation, has developed option grids to help patients engage with SDM . Currently, treatment option grids are used in a wide range of diseases, such as breast cancer, knee joint arthritis, prostate cancer [36-38]. Study confirmed that the application of option grids in lung cancer screening could lead to better SDM experience and advanced knowledge of lung cancer screening . With advances in medicine and the popularity of SDM, it is imperative to encourage lung cancer patients to participate in SDM. Healthcare professionals can use patient decision aids to help patients choose decisions that match their values, preferences, and personal goals.
In the Chinese cultural context and healthcare system, clinicians lack sufficient time to explain the pros and cons of different treatments to patients. As close partners of clinicians, nurses have more contact with patients than clinicians and are more likely to provide health education and understand patients’ wishes regarding treatment and care options. Transitional care is critical for chronic diseases such as cancer, and community health workers are the primary providers of transition care services in the community. Within certain limits of authority, we can train oncology nurse specialists in SDM to join medical staff-patient-family and hospital-home-communities to provide SDM for patients. We should use SDM to maximize patient autonomy and use patient decision aids to help them make decisions.
However, this study has the following limitations. First, this study was conducted in only one comprehensive medical center with limited sample selection. Second, shared decision-making involved not only patients but also their family members. In this study, we didn’t collect the opinions from family members. Third, it is best to analyze the study results through questionnaires and interviews. Therefore, we will conduct interviews with lung cancer patients to obtain more detailed information and include patients' family members in future studies. The results of this study could inform the development of the intervention and will include additional factors as well as future family involvement.