Akemi Yamagishi

Symptom Prevalence and Longitudinal Follow-Up in Cancer Outpatients Receiving Chemotherapy

Palliative care for cancer patients receiving chemotherapy in the outpatient setting is important. The aims of this study were 1) to identify symptom prevalence and intensity in cancer patients receiving chemotherapy and 2) to describe longitudinal follow-up data obtained from repeated assessment using the distress thermometer (DT). Questionnaires were distributed to consecutive cancer outpatients newly starting chemotherapy at the first appointment and at every hospital visit. The questionnaire included the severity of 11 symptoms (M. D. Anderson Symptom Inventory [MDASI], Japanese version), the DT, and the need for help in four psychosocial areas (decision-making, economic problems, nutrition, and daily activities). In total, 4000 questionnaires were returned by 462 patients. The frequently identified problems were oral problems (21%), insomnia (19%), psychological distress (defined as a DT score of 6 or more; 15%), help with information and decision-making (14%), severe fatigue (8.2%), and severe appetite loss (6.3%). Cluster analysis identified four symptom clusters: 1) fatigue and somnolence; 2) pain, dyspnea, and numbness; 3) nausea, appetite loss, and constipation; and 4) psychological distress. Of 165 patients with a DT of score 6 or more, 115 patients (70%) demonstrated a DT score below 6 at a median of 17 days follow-up. In the remaining 50 patients who had a DT score of 6 or more at follow-up, 34 patients (68%) had one or more physical symptoms rated at 7 or more on an 11-point numeric rating scale. Compared with patients with a DT score below 6 at follow-up, patients with a DT score of 6 or more at follow-up had higher levels of all physical symptoms. Frequent symptoms experienced by cancer outpatients receiving chemotherapy may be categorized as: 1) psychosocial issues (insomnia, psychological distress, decision-making support); 2) nutrition-gastrointestinal issues (oral problems, appetite loss, nausea); 3) fatigue; and 4) pain, dyspnea, and numbness. Developing a systematic intervention program targeting these four areas is urgently required. The DT score may be highly influenced by coexisting physical symptoms, and future studies to develop an appropriate system to identify patients with psychiatric comorbidity are necessary.

Effects of a programme of interventions on regional comprehensive palliative care for patients with cancer: a mixed-methods study

BACKGROUND Improvement of palliative care is an important public health issue, but knowledge about how to deliver palliative care throughout a region remains inadequate. We used surveys and in-depth interviews to assess changes in the quality of palliative care after regional interventions and to gain insights for improvement of palliative care at a regional level. METHODS In this mixed-methods study, a comprehensive programme of interventions for regional palliative care for patients with cancer was implemented from April 1, 2008, to March 31, 2011 in Tsuruoka, Kashiwa, Hamamatsu, and Nagasaki in Japan. Interventions included education, specialist support, and networking. We surveyed patients, bereaved family members, physicians, and nurses before and after the interventions were introduced. We also did qualitative interviews with health-care professionals after the interventions were introduced. Primary endpoints were numbers of home deaths, coverage of specialist services, and patient-reported and family-reported qualities of care. This trial is registered with UMIN Clinical Trial Registry, Japan (UMIN000001274). FINDINGS 859 patients, 1110 bereaved family members, 911 physicians, and 2378 nurses provided analysable preintervention surveys; 857 patients, 1137 bereaved family members, 706 physicians, and 2236 nurses provided analysable postintervention surveys. Proportions of home deaths increased significantly, from 348 of 5147 (6.76%) before the intervention programme to 581 of 5546 (10.48%) after the intervention programme (p<0.0001). Furthermore, 194 of 221 (87.78%) family members of patients who died at home answered that these patients had wanted to die at home. The ratio of patients who received palliative care services to all patients who died of cancer increased significantly (from 0.31 to 0.50; p<0.0001). The patient-reported (effect size 0.14; adjusted p=0.0027) and family-reported (0.23; p<0.0001) qualities of care were significantly better after interventions than before interventions. Physician-reported and nurse-reported difficulties decreased significantly after the introduction of the interventions. Qualitative interviews showed improved communication and cooperation between health-care professionals because of greater opportunities for interactions at various levels. INTERPRETATION A regional programme of interventions could improve the quality of palliative care. Improvement of communication between health-care professionals is key to improvement of services. FUNDING Third Term Comprehensive Control Research for Cancer Health and Labor Sciences Research Grants of the Ministry of Health, Labour and Welfare of Japan.

Preferred place of care and place of death of the general public and cancer patients in Japan

Dying at a favorite place is one of the important determinants for terminally ill cancer patients. The primary aim was to clarify (1) differences in preferred place of care and place of death among the general public across four areas across Japan and (2) preferred place of care and place of death among community-representative cancer patients. A cross-sectional mail survey was conducted on 8,000 randomly selected general population. We examined preferred place of care and place of death using two vignettes and obtained a total of 3,984 (50%) responses. For the pain scenario, approximately 50% of the general public throughout four areas chose home as their preferred place of care; and for the dependent-without-pain scenario, about 40% chose home as preferred place of care. In cancer patients, for both scenarios, approximately 40% chose home as the preferred place of care, and they were significantly less likely to choose home. The most preferred combination of place of care and place of death was home hospice for both groups. Although there were statistically significant differences in preferred place of care and place of death among the four regions, the absolute difference was less than 8%. Independent determinants of choosing home as place of care included concern about family burden and being unable to adequately respond to sudden changes out of working hours. In conclusion, establishing more accessible home and hospice service is strongly required through arranging regional resources to reduce family burden, alleviating patient-perceived burdens, and improving 24-h support at home.

Effectiveness of communication skills training of nurses on the quality of life and satisfaction with healthcare professionals among newly diagnosed cancer patients: a preliminary study

Introduction: The importance of effective communication skills to sustain the cancer patient quality of life (QOL) and their satisfaction with healthcare professionals is well documented. This study aims to assess the effectiveness of communication skills training (CST) of nurses for patient QOL and their satisfaction with healthcare professionals just after being diagnosed with cancer.

Public Awareness, Knowledge of Availability, and Readiness for Cancer Palliative Care Services: A Population-Based Survey across Four Regions in Japan

BACKGROUND This study explores the distribution of public awareness, knowledge of availability, and readiness for palliative care services, and the perceived reliability of information resources as part of a nationwide palliative care implementation intervention in Japan (Outreach Palliative Care Trial of Integrated Regional Model [OPTIM]). METHODS A cross-sectional anonymous questionnaire survey was conducted, and 3984 responses were used in the final analysis. RESULTS A total of 63.1% of respondents admitted having no knowledge about palliative care, while 0.5% of respondents were using palliative care services. Respondents who knew about palliative care services, yet did not know about their availability were 18.6% of all respondents. Respondents who had cancer-related experiences were more likely to be aware of palliative care compared to the general population and availability of palliative care services. Only awareness of palliative care was significantly associated with two typical images, while cancer-related experiences were not. CONCLUSION Findings show that the public awareness of palliative care services and their availability is insufficient, and cancer-related experiences affect awareness of cancer palliative care but not directly related to typical images for palliative care such as care for patients close to death.

Knowledge, beliefs, and concerns about opioids, palliative care, and homecare of advanced cancer patients: a nationwide survey in Japan

PurposePatients’ knowledge, beliefs, or concerns about opioids, palliative care, and homecare can be potential barriers to providing quality palliative care. The primary aim of this study was to clarify knowledge about opioids, beliefs about palliative care, and concerns about homecare in advanced cancer patients.MethodsAn anonymous questionnaire was sent to 1,619 outpatients with advanced cancer at 25 hospitals in four different regions of Japan. The respondents were asked to report their knowledge about opioids, beliefs about palliative care, and concerns about homecare, in addition to the levels of their sense of security regarding receiving cancer care in the region.ResultsA total of 925 responses were received. In total, 28% believed that opioids are addictive and/or shorten life; 52% believed that palliative care is only for terminally ill patients; 75% agreed that being taken care of at home puts a heavy burden on the family; and 61% agreed that home-visit services cannot respond to sudden changes in a patient’s condition. Levels of patients’ sense of security were significantly higher in those who agreed that “opioids can relieve most pain caused by cancer” “palliative care relieves pain and distress”, “palliative care is provided along with chemotherapy and/or radiation therapy”, and “pain can be alleviated as effectively through home-visit services as it can at the hospital”, and those who disagreed with the statements that “home-visit services cannot respond to sudden changes in a patient’s condition” and “being taken care of at home puts a burden on the family”.ConclusionsAdvanced cancer patients frequently had incorrect knowledge about opioids, a belief that palliative care is only for terminally ill patients, and concerns about homecare, especially the family burden and responses to sudden changes. Providing appropriate information about the safety of opioids, the availability of palliative care during the entire course of the disease, and realistic information about homecare is of marked importance to promote patients’ sense of security.

Changes in Quality of Care and Quality of Life of Outpatients With Advanced Cancer After a Regional Palliative Care Intervention Program

CONTEXT A recent mixed-methods study to evaluate the effects of a comprehensive regional palliative care program, the Japan Outreach Palliative Care Trial of the Integrated Model study, achieved broad positive outcomes at a regional level. This is a secondary analysis of patient outcomes. OBJECTIVES The primary aims were to explore: 1) the changes in domains of patient-reported quality of care and quality of life after interventions, and 2) the changes in quality of care and quality of life of patients with different characteristics (i.e., performance status, age, and anticancer treatment). METHODS A region-representative sample of metastatic/locally advanced cancer patients in outpatient settings participated in questionnaire surveys before and after regional intervention. Responses were obtained from 859 of 1880 and 857 of 2123 in the pre- and postintervention surveys, respectively. RESULTS All subdomain scores of the quality of care, except for help with decision making, significantly improved in the postintervention survey. The percentages of the patients who reported that improvement was necessary decreased from 13% to 5.0%. Although there were no or only a marginally significant difference in total and subdomain scores of quality of life between preintervention and postintervention surveys, the subgroups of patients with a poor performance status and those receiving no anticancer treatment achieved a significant improvement in the quality of life. CONCLUSION Although average changes in patient-reported outcomes were relatively small in the total sample of patients, the intervention seemed to provide tangible benefits for the patients with poor general conditions. A future regional intervention trial should include patient outcomes in those with a poor general condition to evaluate the net effects of the program.

Patient-perceived usefulness and practical obstacles of patient-held records for cancer patients in Japan: OPTIM study

Background: Although the use of a patient-held record (PHR) for cancer patients has been introduced in many settings, little is known about the role of the PHR in palliative care settings and use in Asian cultures. Aim: This study investigated the patient-perceived usefulness and practical obstacles of using the PHR specifically designed for palliative care patients. Design: This study adopted a qualitative design based on semi-structured interviews and content analysis. Setting/participants: Fifty cancer patients were recruited from two regions in Japan. They used the PHR for more than three months, and then were asked to participate in a face-to-face interview. Results: The content analysis revealed the following patient-perceived usefulness of the PHR: (1) increase in patient–staff communication; (2) increase in patient–family communication; (3) increase in patient–patient communication; (4) increase in understanding of medical conditions and treatments; and (5) facilitating end-of-life care discussion. The practical obstacles to using the PHR were also indicated: (1) the lack of adequate instruction about the role of the PHR; (2) undervaluing the role of the PHR and sharing information by medical professionals; (3) patients’ unwillingness to participate in decision making; (4) concerns about privacy; (5) burdensome nature of self-reporting; and (6) patients’ preference for their own ways of recording. Conclusions: The PHR can be helpful in facilitating communication, understanding medical conditions and treatments, and facilitating end-of-life care discussion; however, for wide-spread implementation, resolving the obstacles related to both patients and health-care professionals is required.

Family caregivers require mental health specialists for end‐of‐life psychosocial problems at home: a nationwide survey in Japan

Psychological distress is problematic for patients and their family caregivers in the oncological setting. The level of stress is influenced by the health status of the patient and their family members as well as the support system for home care. However, it remains unclear how best to support distressed caregivers providing end‐of‐life care at home.