This study, initiated and implemented by the Committee of Neoplastic Supportive-care of Chinese Anti-Cancer Association, aimed to examine the awareness and practice of supportive cancer care throughout China. It also aimed to find defects in practice and the unmet needs of patients and provide the basis for improved clinical guidance and research in the primary care practices of China. A rationale for conducting the study was that, compared with developed regions worldwide, supportive cancer care in the Asia-Pacific region faces more challenges and is felt to fall short of meeting patient needs. 3, 6-9 A step towards changing the status quo was to assess the supportive care of Chinese cancer patients. This was accomplished by distributing and analyzing the responses to questionnaires given to cancer caregivers and patients or family members throughout China.
The questionnaires were jointly designed by clinical oncologists and statisticians and were divided into a medical caregiver version and a patient/family member version. The accumulated data represented 34 provincial administrative regions of the country, with 12,686 medical staff and 11,172 patients (or their families) participating. The geographic distribution of the respondents suggested that some level of supportive care was available to cancer patients throughout the nation, including the least populated, non-urban areas. Moreover, the sample size of both the medical staff and patients was large, thus reducing the chance for selective, regional biases.
An important and probably reassuring finding of the survey was that more than two-thirds of health care providers felt that their organizations placed much or moderate emphasis on supportive care. On the other hand, only about one-fourth of caregivers felt they knew much about oncology supportive care, and nearly 10% admitted to having had little or knowledge of this kind of care. These figures may indicate that more education or training of caregivers in supportive care is needed in China -- even in tertiary hospitals, as over 80% of the surveyed caregivers were working in tertiary hospitals.
In this study, both medical care personnel and the patients or family proxies suggested that about one-third of the patients were ignorant of their illness. The awareness rate of adolescents (< 20 years old) and elderly patients (> 60 years old) was lower than that of middle-aged patients. Perhaps teenagers and the elderly are in a relatively weak position in the family, and the family tends to protect them from a knowledge of their illnesses. The awareness rate of patients with low educational backgrounds (primary school and below) and high educational backgrounds (master’s degree and above) were lower than those with medium educational backgrounds. Unexpectedly, though, the knowledge rate of people with the highest educational backgrounds (master's degree or above) was lower than that of people with medium educational backgrounds; this finding is unexplained and could simply be the result of a relatively small sample.
The rate of patient awareness of cancer illness and the severity of cancer diagnoses in China and other Asian countries is lower than in Western countries, no doubt because of cultural differences. Eastern countries are deeply influenced by Confucianism in their moral traditions, with emphasis on morality and obligation, and the rights of families and collectives to make decisions for patients. Whether an increase in patient awareness of their cancer diagnosis should be an objective of supportive care in China is a question beyond the scope of this investigation but is worth investigation.
The survey also revealed a modestly but significantly higher rate of MDT consultation for supportive care in tertiary care hospitals than in non-tertiary care hospitals in China (about 20% vs. 15%). This difference suggests that tertiary hospitals have a more comprehensive and better-equipped model of supportive cancer care than do primary hospitals, which have a simpler model, with the attending physician developing all treatment plans. Irrespective of the differences, only a minority of hospitals, either tertiary or non-tertiary hospitals have MDT supportive cancer care. Whether the MDT model of care is superior to other models and should be implemented more often in China are questions that deserve inquiry.13
Pain is one of the most common and feared cancer symptoms. In this survey, nearly one-half of patients experienced cancer pain, and pain was one of the top 10 concerns of these patients regarding their disease. On the other hand, pain treatment ranked fifth among the most frequently administered medical care measures among caregivers, which might imply inadequate monitoring of cancer pain; however, many other factors might account for the difference. Although about one-half of patients tolerated pain without medication, about one-third reported that pain affected their rest and daily activities. Thus, there appears to be room for improvement in the management of cancer patient pain in hospitalized patients. Nonetheless, around 75% of caregivers indicated that they follow the World Health Organization guidelines for pain management. A higher proportion of patients in tertiary hospitals received on-demand therapy than did patients in non-tertiary hospitals. This difference is unexplained, but might reflect a greater flexibility of tertiary hospitals to adjust pain medication protocols to a patient’s needs (perhaps through a higher level of staffing). Overall, though, the effectiveness of pain management was reported similar in tertiary and non-tertiary hospitals.
Nutritional support is a major requirement for many cancer patients, who often experience nausea, vomiting, and anorexia, and have increased catabolism. In this survey, caregivers reported a nearly 100% rate of involvement in patient nutrition, either throughout the entire course or during part of the course, and over 60% reported screening to identify patients at high risk of malnutrition. On the other hand, patients reported that caregivers were less involved in their nutritional needs; about 40% reported no guidance or guidance only when they proposed it. This difference is unexplained but might indicate patient ignorance in how involved a caregiver is in supplying their nutritional needs. About 45% of patients eventually received supplemental nutritional support, with about half of them needed parenteral, nasal tube, or gastric/jejunostomy fistula nutritional support.
Physical rehabilitation guidance has played a role in supportive care during and after cancer treatment. 14, 15 Knols et al. 14 found that the experimental group had significantly improved function, mental health status, and nausea during breast cancer therapy. Cramp et al. 15 reported that completing exercise plans significantly improved cancer-related fatigue. Some 11 recommended that tumor survivors follow the exercise guidelines issued by the International Multidisciplinary Roundtable, which include graded levels of exercise. In our study, about 80% of patients received guidance on physical activity, but about 70% performed only low-intensity exercises, which did not meet the standard exercise guidelines.
As expected, a high percentage of the cancer patients in this survey experienced emotional challenges. About 50%-70% noted various degrees of anxiety, depression, and despair. Most mental stress came from feeling a lack of control over their disease and the economic burden of treatments. Psychological counseling was reported to be available for about 75% of patients, with no difference in availability between tertiary and non-tertiary hospitals; thus, about 25% of patients felt the medical staff did not provide psychological guidance. About 95% of physicians considered a patient's financial situation in the development of treatment plans, but there was no indication of assistance for patients with a financial hardship.
In this survey, the percentage of patients who expressed interest in using TCM or seeking religious counseling was substantially higher than the percentage of health care providers who said they would support these desires. This disparity might highlight a need for the providers to be more sensitive to patient spiritual and emotional needs. Patient interest in using TCMs is likely evidence that traditional treatments occupy an important position in the emotions of Chinese cancer patients, and they are not just a "placebo."16
We were interested in how the patients’ concerns corresponded with the therapeutic measures that caregivers administered. We found that patients were more concerned with subjective issues such as nausea, changes in appearance, economic burdens, and sexual dysfunction, whereas health care workers were more concerned with conditions that had objective indicators, such as blood toxicity, hepatic and renal toxicity, and adverse effects of therapies. At the least, these findings indicate the need for caregivers to be vigilant about patients’ perceived needs as well as the “medical” issues.
We acknowledge that this study has limitations: 1) The medical care version and the patient version of the questionnaire were designed and distributed one after the other, rather than concurrently. 2) The topics of the questionnaires were not completely matched. 3) Many issues in the vast field of supportive cancer care could not be addressed because of manpower and budget restrictions. Questionnaires in future studies should better match caregivers’ perceptions of care given and patients’ perceived needs to more accurately determine whether needs are met and, if not, where corrections are needed. The questionnaires could also evaluate, in more detail, the possible differences among levels of hospitals in providing supportive care.
Despite its limitations, this large-scale study has substantially increased knowledge of supportive cancer care in China. It compared the perceived needs of patients with the care administered by health care personnel. The study revealed that a certain level of care is available broadly throughout the nation while also revealing areas in which care might be more thoroughly evaluated or even improved. Some of these areas are 1) greater effort in education and training of oncology-patient caregivers in supportive care; 2) more comprehensive assessment of supportive care in non-tertiary care hospitals, including the possible advantages of the MDT model of care; 3) methods for improving patients’ pain control, including the use of on-demand vs. structured delivery of pain medications; 4) greater attention to patient subjective needs, including physical exercise, psychological guidance, financial burdens, and spiritual and religious support. Joint efforts of professionals, patients/families, and institutional structures will be needed to address these needs.