Differences in perception of breast cancer treatment between patients, physicians, and nurses and unmet information needs in Japan.

PURPOSE: Discrepancies exist between healthcare provider and patient perceptions surrounding breast cancer treatment. Significant treatment changes in the last 10 years have made re-evaluation of these perceptions necessary. METHODS: Physicians and nurses involved in breast cancer treatment, and patients who had received breast cancer chemotherapy (past 5 years), were questioned using an Internet survey. Participants ranked physical concerns (treatment side effects), psychological concerns, priorities for treatment selection, and side effects to be avoided during treatment. Patients were asked about desired treatment information/information sources. Rankings were calculated using the mean value of scores. Spearman's rank correlation was used to determine the concordance of rankings among groups. RESULTS: Survey respondents included 207 patients, 185 physicians, and 150 nurses. Patients and nurses similarly ranked distressing physical concerns; physician rankings differed. Quality of life (QoL) and treatment response ranked high with physicians and patients when considering future treatment; nurses prioritized QoL. All three groups generally agreed on ranking of psychological concerns experienced during chemotherapy, explanation of treatment options, and how treatment decisions were made, although more patients thought treatment decisions should be made independently. Healthcare providers reported providing explanations of treatment side effects and information on physical/psychological support options while patients felt both were lacking. Concordance was calculated as 0.47 (patient-physician), 0.83 (patient-nurse), and 0.76 (physician-nurse). Patients desired additional information, preferring healthcare providers as the source. CONCLUSIONS: Specific areas for improvement in breast cancer patient care were identified; programs should be implemented to address unmet needs and improve treatment in these areas.

A Japanese region-wide survey of the knowledge, difficulties and self-reported palliative care practices among nurses.

OBJECTIVE: We investigated palliative care knowledge, difficulty and self-reported practice among a region-wide sample of nurses who cared for cancer patients in Japan. METHODS: A cross-sectional questionnaire survey was distributed to 9 designated cancer centers, 17 community hospitals and 73 district nurse services across 4 regions in 2008. We used the Palliative Care Knowledge Test, the Palliative Care Difficulty Scale (five-point Likert scale) and the Palliative Care Self-Reported Practices Scale (five-point Likert scale). RESULTS: In total, 2378 out of 3008 nurses (79%) responded. The knowledge, difficulty and self-reported practice scores were 51 ± 20%, 3.2 ± 0.7 and 3.7 ± 0.6, respectively. In the knowledge test, philosophy scored highest (88 ± 26%) and psychiatric problems scored lowest (37 ± 29%). In the difficulty test, alleviating symptoms scored most difficult (3.5 ± 0.8) and providing expert support scored least difficult (2.9 ± 1.3). In the self-reported practice questionnaire, pain and delirium relief were most frequently (4.0 ± 0.8) and least frequently (3.1 ± 0.9) provided, respectively. Knowledge was significantly poorer in community hospitals (P = 0.035); difficulty scores were significantly higher in community hospitals (P < 0.001) and district nurse services (P = 0.013); and self-reported practice scores were significantly poorer in community hospitals (P < 0.001) but superior in district nurse services (P < 0.001) than in designated cancer centers. CONCLUSIONS: Knowledge, difficulty and self-reported practice for symptom management, particularly psychological symptoms, were insufficient, particularly in community hospitals. Education, expert support and adequate clinical experiences would help provide quality palliative care.

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.

Progressive development and enhancement of palliative care services in Japan: nationwide surveys of designated cancer care hospitals for three consecutive years.

CONTEXT: Policymaking plays an important role in national palliative care services. The Japanese Cancer Control Act was implemented in 2006. OBJECTIVES: To evaluate changes in the structure and processes of palliative care services after implementation of the Cancer Control Act. METHODS: We conducted annual nationwide surveys in designated cancer care hospitals (DCCHs, n = 349) between 2008 and 2010. The 65-item questionnaire was divided into seven domains: institutional framework, information to patient and family, practice of palliative care, activities of the palliative care teams (PCTs), members of PCTs, regional medical cooperation, and education. Increasing trends were tested using generalized estimating equation models. RESULTS: The response rates were ≥ 99%. All domains showed an increasing trend (P < 0.001). There were significant increases in full-time PCT physicians (27.4%-45.7%, P(trend) < 0.001), full-time PCT nurses (38.9%-88.0%, P(trend) < 0.001), and the median number of annual referrals to PCTs (60-80 patients, P < 0.001). Essential drugs were available in most DCCHs from baseline. Although outpatient clinics increased significantly (27.0%-58.9%, P(trend) < 0.001), community outreach programs did not (9.0%-12.6%, P = 0.05). Basic education was actively introduced for in-hospital physicians and nurses (78.2% and 91.4% in 2010), but often unavailable for regional health care providers (basic education for regional physicians and nurses: 63.9% and 71.1% in 2010). CONCLUSION: The Cancer Control Act promoted the development and enhancement of palliative care services in DCCHs. Regional medical cooperation and education are the future challenges of palliative care in Japan.

Determinants affecting quality of life: implications for pharmacist counseling for patients with breast cancer in Japan.

Although pharmacist counseling assumes an important role in the clinical setting, oncology pharmacy practitioners worldwide currently lack adequate guidance. This study aimed to identify the determinants and causal relationships that affect quality of life (QOL) in breast cancer patients before adjuvant systemic therapy for improving pharmacist counseling and guidance. This study analyzed 93 postoperative patients with breast cancer before pharmacist counseling for adjuvant systemic therapy. Patients were asked to complete questionnaires to assess QOL (the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire C30 [EORTC QLQ-C30] and its breast cancer module [EORTC QLQ-BR23]) before pharmacist counseling. We analyzed factors affecting QOL by stepwise multiple linear regression analysis and evaluated causal association using path analysis. In the multiple linear regression model using variables selected by stepwise analysis, the factors affecting global health status (GHS)/QOL included fatigue, emotional functioning, systemic therapy side effects, future perspectives, and appetite loss. In the path analysis model, GHS/QOL were strongly influenced by fatigue directly; and emotional functioning, directly and indirectly via other factors. Our results indicated that fatigue and emotional functioning are strong factors affecting QOL. These factors may be able to predict poor QOL before initiating adjuvant systemic therapy. Thus, our findings suggest that these factors may be potentially useful for pharmacist counseling at the beginning of adjuvant systemic therapy.

The palliative care self-reported practices scale and the palliative care difficulties scale: reliability and validity of two scales evaluating self-reported practices and difficulties experienced in palliative care by health professionals.

BACKGROUND: The development of palliative care educational programs is ongoing in Japan. To assess the effectiveness of educational programs for general nurses, it is necessary to develop scales for evaluating them. AIMS: The aims of this study were to develop two scales to measure the effectiveness of palliative care educational programs and confirm the validity and reliability of the scales. METHODS: A questionnaire survey was validated with a group of 940 nurses at two facilities. The response rate was 85% (n = 797). This study used psychometric methods such as factor analysis and intra-class correlation coefficients. MAIN RESULTS: We selected 18 items in 6 domains, including "dying-phase care," "patient- and family-centered care," "pain," "delirium," "dyspnea," and "communication" for the Palliative Care Self-reported Practices Scale (PCPS). For this scale, the intra-class correlation was 0.64 to 0.74 in each domain. For the Palliative Care Difficulties Scale (PDCS), we selected 15 items in 5 domains, including "communication in multidisciplinary teams," "communication with the patient and family," "expert support," "alleviation of symptoms," and "community coordination." For the PCDS, the intraclass correlation was 0.61 to 0.69 in each domain. CONCLUSIONS: The validity and reliability of these scales were established. Therefore, the clarification of actual practices used and difficulties experienced will be possible using these scales.

Multiple evaluation of a hospital-based palliative care consultation team in a university hospital: activities, patient outcome, and referring staff's view.

OBJECTIVE: Although the number of hospital-based palliative care consultation teams (PCCTs) is rapidly increasing in Japan, there is limited information available concerning the activities and usefulness of PCCT in the country. The aim of this study is to clarify the activities, patient outcome, and referring staff's view of an established PCCT in Japan. METHOD: This was a prospective study to follow patients referred to a PCCT for 28 days over a 1-year period. Patients were assessed by the Support Team Assessment Schedule-Japanese version (STAS-J) and EORTC QLQ C-30 at the time of referral and on days 7, 14, and 28. A staff survey was implemented using a questionnaire after each observation period. RESULTS: Of 180 patients referred, 53 patients were eligible for the study. Although the median of the number of the reasons for referral was 1, the PCCT provided several kinds of support: pain management, 94%; emotional support for the patient, 49%; and emotional support for the family, 36%. On day 7 after referral, of the items of STAS-J and the EORTC QLQ C-30 subscales, only insomnia improved significant whereas "other physical symptoms" and constipation were significantly exacerbated. In the staff survey, of the 98 respondents, more than 90% considered the effect of the PCCT as "excellent" or "good" and were satisfied with the support provided. SIGNIFICANCE OF RESULTS: This study showed that the PCCT performed comprehensive assessments on referred patients and provided extra support. No patient's QOL 1 week after referral was improved with the exception of insomnia. Referring staff highly evaluated the activities of the PCCT. In the evaluation of PCCTs, further research about the variation of clinical activities of PCCTs, their applicability, and benefit is needed.

Chemotherapy with low-dose capecitabine as palliative treatment in a patient with metastatic breast cancer: a case report.

Chemotherapeutic agents are rarely used for symptom management in patients under palliative care setting. This is because chemotherapeutic agents not only have limited efficacy in palliative treatment but are also known to exert severe adverse effects. We describe our experience with a patient with metastatic breast cancer who was successfully treated with low-dose capecitabine, without the development of any severe toxicities and with significant improvement in activities of daily living (ADL) and quality of life (QOL).The patient, a 43-year-old female, had breast cancer with liver, bone, and cutaneous metastases. She visited our clinic after a year-long hiatus during which she underwent alternative therapy. She presented with ulcerated lesions on the anterior chest and dyspnea due to malignant pleural effusion. After treatment for the latter, we administered capecitabine (600 mg/day) in accordance with the wishes of the patient and her attendants. The ulcerated lesions on the anterior chest, dyspnea, ADL and QOL improved significantly, without the development of any serious adverse effects. The findings of this case indicate that chemotherapy in the form of low-dose capecitabine monotherapy may be considered in patients under palliative care setting.

[The function as oncology clinical nurse specialist in the local cooperation and continuous medical care].

It appears that cancer care has been shifting on a large scale because of the Cancer Control Program Organic Act. In the wave of cancer care reform, an active part of a Oncology Clinical Nurse Specialist is indispensable in order to raise a quality of Cancer nursing. There have been 79 Oncology Clinical Nurse Specialist working in the Japanese hospitals. The Oncology Clinical Nurse Specialist' roles are of "practice", "consultation", "coordination", "ethical coordination", "education", and "study". They work and cooperate with the general staff at hospitals, and that they strive for a medical (nursing) care reform on the hospital scene. Regarding activities of Oncology Clinical Nurse Specialist with palliative care team and consulting support center that are expanding in Basic Plan to Promote the Cancer Control Program, they have been moving forward through cases in the local cooperation and continuous medical (nursing) care.