This is the first study to investigate the need for palliative care in Chinese patients with advanced cancer and examine the association between quality of life and individual characteristics of palliative care needs. Unsurprisingly, palliative home care needs are multifaceted and complex. Patients reported higher palliative home care needs when they had a poorer quality of life and vice versa. Additionally, multivariable analyses indicated a significant association between palliative home care needs and role functioning, emotional functioning, and financial difficulties. Identifying and understanding patients’ palliative home care needs and the influencing factors can provide health care providers with a theoretical basis for managing and treating patients with cancer at home. This is also a critical step toward determining palliative home care interventions.
Physical functioning is a crucial domain for a patient’s quality of life, and symptom control is an essential goal of palliative home care. Our findings indicate that the KPS score, physical functioning, and symptoms of nausea/vomiting, pain, and sleep disturbance were negatively correlated with palliative home care needs. In the current study, 64% of patients experienced fatigue, which was the most distressing and frequent symptom. Fatigue negatively affects daily functioning and health-related quality of life [17]. Previous studies have reported that fatigue is a significant risk factor for falling [18, 19]. This study reported that 42.7% of patients hoped to obtain more home safety knowledge (fall prevention, falling out of bed, etc.), which suggests that health care providers should pay attention to strengthening the assessment of fatigue symptoms and health education for fall prevention. Several patients described pain as the most universal symptom of discomfort, and they were afraid of opioid use because of fear of addiction and side effects [14]. This study reported that 57% of the patients hoped to obtain more information about pain medications. This indicates that health care providers should help patients manage pain and provide knowledge about opioids.
Patients have frequently reported the need for home health care services. Among the highest-ranked items were insufficient information (e.g., about the disease and its treatment, aids and agencies that can provide help, and alternative healing methods), diet instruction, and health education on pain medications. These items indicate that patients need to obtain more illness-related and daily care-related information. Unmet home care information needs resulted in negative experiences for patients and caregivers [20]. Conversely, sufficient information was associated with satisfaction, patient outcomes, and preference for palliative home care services. Given the importance of meeting patient information needs in palliative home care services, further research is needed to explore the effectiveness of various solutions to meet these needs.
Multivariable analysis indicated that financial difficulties were positively related to higher palliative home care needs. Cancer healthcare expenditure has increased significantly worldwide [21]. Financial problems were highly reported in this study. Medical expenses caused by illness and the inability to maintain regular work decreased the family income. Owing to economic and social development limitations, the number of anticancer drugs that can be included in China’s current medical insurance catalog is limited [22]. Commercial health insurance is not comprehensive and cannot effectively supplement medical insurance [22]. Financial status plays a vital role in patients’ quality of life. Most families experience unmanageable financial burdens. This finding suggests that basic medical insurance coverage and the reimbursement ratio should be improved in China.
In models adjusted for demographic factors, we found an association between the overall quality of life and palliative home care needs. Physical symptoms such as fatigue, appetite loss, pain, and insomnia are common among patients at home and further challenge palliative home care management. Role functioning and emotional functioning were found to be associated with decreased quality of life, and higher palliative home care needs in patients with cancer. The diagnosis and side effects of anticancer treatment usually affect physical and mental health, resulting in role and emotional functioning disadvantages [23]. Diminished role functioning may lead to disease burden and disengagement, limiting social and physical activities [24]. Decreased emotional functioning can also develop along with anxiety, depression, and/or somatization, which may affect treatment tolerance and disease progression. Our results reinforce the need to consider patients’ perspectives on health care providers’ discussions of palliative home care interventions according to their needs and preferences.
This study provides a comprehensive understanding of the palliative home care needs and quality of life of patients with advanced cancer in China. This study has several limitations. First, the sample size was relatively small, and this population may not be representative of other provinces in China. Although we found a trend toward an association among the KPS, quality of life, and palliative home care needs, this study had a cross-sectional design; thus, causality cannot be fully confirmed. Longitudinal studies are required to examine these causal relationships. In addition, with the progression of the disease and the decline in quality of life, patients’ needs for palliative home care may change dynamically. Future longitudinal studies should consider changes in palliative home care needs throughout the illness rather than just focusing on a specific treatment period.
The current study can be the basis for further research and provide evidence to health care teams for tailored palliative home care interventions or service development. Palliative home care services should thoroughly evaluate the physical, psychological, and financial aspects to ensure the best possible quality of life for patients. Understanding the predictors of the need for palliative home care can assist health care teams in meeting the complex needs of patients. Evaluating and identifying these needs may contribute to implementing effective palliative home care services and interventions to improve patient and caregiver outcomes. Health care providers and policymakers should consider and address these factors to provide higher levels of care.