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Palliative care is provided according to patient needs. Healthcare providers can use the Phase of Illness to assess patient needs and improve palliative care. However, patients' phase changes after the palliative care team's intervention remain unknown. This study clarified the Phase of Illness of patients referred to palliative care teams at hospitals and the changes in their phase after the intervention. Our study was a secondary analysis of a multicenter survey involving patient-reported outcomes. This study was conducted between February and August 2021 at eight facilities with palliative care teams. The participants were patients for whom the palliative care team received a new request for intervention during the patient enrollment period. Out of the 310 patients, 68 (21.9%) were in the stable phase, 141 (45.5%) in the unstable phase, 87 (28.1%) in the deteriorating phase, and 14 (4.5%) in the terminal phase at the time of referral. The total score for symptom distress at the time of referral was the highest in the deteriorating phase (65.7), followed by the unstable (54.1), terminal (47.5), and stable phases (40.5). Furthermore, 20.4% of patients in the unstable phase at the time of referral moved to the stable phase after one week of the intervention. This study identified the distribution and changes in the Phase of Illness of patients referred to palliative care teams. Assessments for the Phase of Illness must be standardized in palliative care teams to set benchmarks. [ABSTRACT FROM AUTHOR]

Purpose: Cancer of unknown primary site (CUP) is an aggressive disease with poor prognosis. As research on the experiences of CUP patients and their families is scarce, this study aimed to compare the family caregiver-perceived burden of CUP with that of common cancers (lung, colon, and stomach cancers). The association between family caregiver-perceived burden and CUP patients' quality of life (QOL) at end-of-life and family depression, respectively, was also explored.Methods: This was a pre-planned secondary analysis of nationwide cross-sectional survey data from the bereaved family caregivers of patients with cancer who died at 286 institutions. The major measurements were the eight-item family caregiver-perceived Burden scale (comprising specialist access, uncertainty, and prolonged diagnosis), Good Death Inventory, and Patient Health Questionnaire 9.Results: Of 27,591 survey responses, we analyzed 97 and 717 responses from family caregivers of patients with CUP and common cancer, respectively. The families of CUP patients scored significantly higher on all three burden subscales than those of common cancer patients (effect sizes: specialist access subscale, 0.3; uncertainty subscale, 0.66; and prolonged diagnosis subscale, 0.69; adjusted P < 0.01). Greater family burden was significantly associated with lower patient QOL and higher family depression. Burden was significantly associated with being a spouse, second opinion consultation, and diagnosis period of > 1 month.Conclusion: The family caregivers of CUP patients experience poor specialist access, greater uncertainty, and a prolonged diagnosis. They should be cared for from the initial stages to establish access to specialists, obtain an early diagnosis, and reduce uncertainty. [ABSTRACT FROM AUTHOR]

Objective: There are no instruments evaluating the processes and outcomes of dying care right before and after death. Therefore, we developed and examined the validity and reliability of 2 scales for evaluating dying care processes and outcomes before and after death. Methods: A cross-sectional, anonymous questionnaire was administered to bereaved family members of patients with cancer who had died in 5 facilities. We evaluated the Dying Care Process Scale for Bereaved Family Members (DPS-B) and the Dying Care Outcome Scale for Bereaved Family Members (DOS-B) with 345 bereaved family members. Results: A factor analysis revealed that DPS-B and DOS-B each consisted of 4 subscales. For the DPS-B, they were "symptom management," "respect for the patient's dignity before and after death," "explanation to the family," and "family care." For the DOS-B, they were "peaceful dying process for the patient," "being respected as a person before and after death," "good relationship between the patient and family," and "peaceful dying process for the family." Both DPS-B and DOS-B had sufficient convergent and discriminative validity, sufficient internal consistency (DPS-B: α = 0.91 and subscales' αs = 0.78-0.91; DOS-B: α = 0.91 and subscales' αs = 0.78-0.94), and sufficient test–retest reliability (DPS-B: intraclass correlation coefficient [ICC] of total score = 0.79 and subscales = 0.55-0.79; DOS-B: ICC of total score = 0.88 and subscales = 0.70-0.88). Significance of Results: Both DPS-B and DOS-B are valid and reliable scales for evaluating the dying care processes and outcomes before and after death from the bereaved family members' perspectives. [ABSTRACT FROM AUTHOR]

Purpose: The purpose of this study was to develop a Japanese version of hand-foot syndrome (HFS)-specific quality of life (QOL) questionnaire (HFS-14) to evaluate and monitor the QOL of patients with a possibility of HFS. Methods: The original English version of HFS-14 was translated and slightly modified into Japanese, and the Japanese HFS-14 was administered to 187 patients receiving chemotherapy with high risk of developing HFS as outpatients in four institutions in Japan. Factor validity, internal consistency, correlation with the Skindex-16 and Dermatology Life Quality Index (DLQI) scores, known group validity, and test-retest reliability were analyzed for 105 patients who developed HFS. Next, we compared HFS-14 with DLQI and Skindex-16. Results: Factor analysis confirmed the factor structure (one putative scale) of the Japanese HFS-14. Cronbach's alpha was over 0.90. The Japanese HFS-14 score was correlated with the Skindex-16 and DLQI score. Intra-class correlation coefficients were over 0.80. Patients with severe HFS reported significantly poorer HFS-14 score than those with mild HFS. The Skindex-16 and DLQI scores were also significantly different in patients with different Common Terminology Criteria for Adverse Events (CTCAE) grades, but with smaller effect sizes than those for the HFS-14 score. Conclusions: The Japanese HFS-14 provides a valid and reliable score for monitoring and evaluating HFS. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Background: The aim of this study was to compare the symptom burden and achievement of good death of elderly cancer patients with that of younger patients. Methods: Secondary analysis of three large databases was performed: (1) 7449 cancer outpatients receiving chemotherapy, (2) 1716 outpatients with metastatic cancer, and (3) 1751 terminally ill cancer patients who died in hospitals or at home. Outcome measures used included the M.D. Anderson Symptom Inventory, Brief Pain Inventory, and Good Death Inventory. Results: In cancer outpatients receiving chemotherapy, older patients reported significantly higher levels of dyspnea and fatigue (lung cancer), emotional distress (breast cancer), and unmet needs regarding information and help with decision making (stomach cancer); however, the intensity of nausea was significantly lower across the four primary tumor sites, and intensity of pain was significantly lower in lung cancer. In outpatients with metastatic cancer, older patients reported lower levels of 'maintaining hope and pleasure,' 'a good relationship with the family,' and 'independence,' while there was no significant difference in the pain intensity. In terminally ill cancer patients, proxy family members reported significantly lower levels of 'independence,' while they reported significantly lower levels of pain, physical discomfort, and psychological discomfort. Conclusions: Older cancer patients need at least the same levels of palliative care; while they experienced generally lower levels of nausea and pain, some older patients experienced higher levels of dyspnea, fatigue, emotional distress, need for information, help with decision making, loss of hope and pleasure, and independence. [ABSTRACT FROM AUTHOR]

Background: The aim of this study was to develop a tool to measure the family's difficulties in caring for cancer patients at the end of life at home: Family's Difficulty Scale in end-of-life home care (FDS). Methods: The draft of the FDS was derived from a pilot interview survey and literature reviews. The questionnaires were sent to 395 bereaved family caregivers whose family members were patients with terminal cancer receiving home service. Results: We obtained 306 responses (response rate, 81%). Factor analysis resulted in 29 items and 8 factors: Burden of Care, Concerns about Home Care Doctor, Balance of Work and Care, Patient's Pain and Condition, Concerns about Visiting Nurse, Concerns about Home Care Service, Relationship between Family Caregivers and their Families, and Funeral Preparations. The cumulative rate of contribution was 71.8%. Cronbach coefficient α for the FDS was 0.73-0.75; the intraclass correlation coefficient in the test-retest examination was 0.75-0.85. Evidence for construct validity was confirmed by convergent and divergent validity. Concurrent validity was confirmed by significant correlations between identified factors and concurrent measures. Conclusion: The validity and reliability of this new instrument were confirmed. This scale should help home care providers to assess and focus on family difficulties and provide individualized care for the family who cares for a patient with terminal cancer at home. [ABSTRACT FROM AUTHOR]

Abstract: The aim of this study was to develop a measure for evaluating good death from the bereaved family member''s perspective, and to examine the validity and reliability of the assessment. A cross-sectional anonymous questionnaire was administered to bereaved family members of cancer patients who had died in a regional cancer center from September 2004 to February 2006. We measured the Good Death Inventory (GDI), Care Evaluation Scale, and an overall care satisfaction scale. A retest was conducted one month after sending the questionnaire. Of the 344 questionnaires sent to bereaved family members, 189 responses were analyzed (57%). A factor analysis of the responses to the GDI identified 10 core domains: “environmental comfort,” “life completion,” “dying in a favorite place,” “maintaining hope and pleasure,” “independence,” “physical and psychological comfort,” “good relationship with medical staff,” “not being a burden to others,” “good relationship with family,” and “being respected as an individual.” Eight optional domains also were identified: “religious and spiritual comfort,” “receiving enough treatment,” “control over the future,” “feeling that one''s life is worth living,” “unawareness of death,” “pride and beauty,” “natural death,” and “preparation for death.” The GDI had sufficient concurrent validity with the Care Evaluation Scale and overall care satisfaction, sufficient internal consistency (alpha=0.74–0.95), and acceptable test–retest reliability (ICC=0.38–0.72). Finally, we developed a short version of the GDI. The GDI is a valid scale to measure end-of-life care comprehensive outcomes from the bereaved family member''s perspective in Japan. [Copyright &y& Elsevier]

Abstract: Context: Anorexia is one of the most common symptoms in terminally ill cancer patients and causes considerable distress for both patients and their families. Objectives: The primary aims of the present study were to clarify the level of the family-perceived emotional distress and necessity for improvement in professional practice when a relative becomes unable to take nourishment orally and explore the determinants of these outcomes. The ultimate aim was to develop an effective care strategy for family members of terminally ill cancer patients who become unable to take nourishment orally. Methods: A cross-sectional anonymous nationwide survey was conducted involving 662 bereaved family members of cancer patients who had been admitted to 95 palliative care units throughout Japan. Results: A total of 452 bereaved family members returned the questionnaires (effective response rate, 68%). Overall, 80% of family members experienced the situation where a terminally ill relative became unable to take nourishment orally. The reported level of family-perceived emotional distress was very distressing (38%) and distressing (33%). Responses to the family-perceived necessity for improvement in professional practice they received were much improvement needed (4%), considerable improvement needed (10%), and some improvement needed (46%). The independent determinants of a high level of family perceived emotional distress were a sense of helplessness and guilt, and belief that dehydration causes profound distress for dying patients. Independent determinants of a high level of family-perceived necessity for improvement in professional practice were a sense of helplessness and guilt, experience that health care providers did not pay enough attention to family members'' concerns, and insufficient relief of the patient''s symptoms. Conclusion: A considerable number of family members experienced high levels of emotional distress when a terminally ill cancer patient became unable to take nourishment orally, and many perceived a necessity for improvement in professional practice they received. A recommended care strategy includes the following four major domains: 1) relieving the family members'' sense of helplessness and guilt, 2) providing up-to-date information about hydration and nutrition at the end of life, 3) understanding family members'' concerns and providing emotional support, and 4) relieving the patient''s symptoms. Further research is needed to evaluate the effects of this care strategy on family members'' outcomes, including clinical studies to obtain more accurate understanding of the symptomatic effects of hydration and nutrition in terminally ill cancer patients. [Copyright &y& Elsevier]