Reliability and validity of the Japanese version of the Parenting Concerns Questionnaire.

OBJECTIVE: Cancer patients with children are increasing; however, few studies have quantitatively assessed the parenting concerns of cancer patients with children. The Parenting Concerns Questionnaire was developed in the USA in 2012 and is the only instrument to measure the parenting concerns of cancer patients with children. This study aimed to develop a Japanese version of the Parenting Concerns Questionnaire and evaluate its reliability and validity. METHODS: An Internet survey was conducted among cancer patients registered with 'Cancer Parents', an Internet community site for cancer patients, who have children aged <18 years, and 174 responses were recorded. Two weeks later, a retest was conducted, and responses were obtained from 87 patients. RESULTS: Based on confirmatory factor analysis of the factor structure proposed by the authors of the original version, factors 'I. The impact of my illness on the child's daily life (five items)', 'II. The impact of my illness on the child's feelings (five items)' and 'III. Concerns about my parenting partner (five items)' were consistent with the original version. Cronbach's alpha coefficients for all items and by factors were 0.86, 0.79, 0.86 and 0.86. The Parenting Concerns Questionnaire total scores correlated with Hospital Anxiety and Depression Scale (r = 0.52), the Functional Assessment of Cancer Therapy General (r = -0.56), Family Assessment Device-General Functioning (r = 0.51) and Multidimensional Scale of Perceived Social Support (r = -0.47). The intraclass correlation coefficients for all items and by factors were 0.81, 0.71, 0.77 and 0.85. CONCLUSIONS: The Japanese version of the Parenting Concerns Questionnaire has satisfactory reliability and validity.

Differences in discharge letter content: oncologists' vs. home care physicians' needs.

PURPOSE: To compare the details, oncologists include in discharge letters with what home care physicians need. Although discharge letters are important to share patients' information for home palliative care, few studies have compared the details, especially patients' emotions, regarding what oncologists include in discharge letters and home care physicians' needs. METHODS: This cross-sectional study was conducted by sending anonymous, self-administered questionnaires to 500 certified oncologists (OCs) and 500 directors of home care supporting clinics (HCs) in Japan between March and May 2023. The survey considered 20 potential items found in discharge letters, and compared rates of OCs including these items and HCs needs. RESULTS: Of 310 valid responses, 186 were from OCs (average age: 47.7; 29 females) and 124 from HCs (average age: 55.4; 9 females). Major items with lower inclusion rates for OCs included patients' emotions regarding medical conditions (58.4% in OCs vs. 92.6% in HCs, p < 0.001), families' emotions regarding medical conditions (60.0 vs. 92.6%, respectively, p < 0.001), patients' perceptions regarding medical conditions (84.9 vs. 94.3%, respectively, p = 0.011), families' perceptions regarding medical conditions (84.3 vs. 95.1%, respectively, p = 0.004), and potential late-onset treatment-related adverse events (79.3 vs. 92.6%, respectively, p = 0.002). Conversely, OCs included patients' activities of daily living more frequently (96.2 vs. 90.2%, respectively, p = 0.031). CONCLUSION: Transitioning to home-based palliative care may necessitate accurate information and consideration of patients' and families' perceptions and emotions regarding medical conditions in discharge letters for continuous provision of high-quality care.

Cancer Pain Management in Patients Receiving Inpatient Specialized Palliative Care Services.

CONTEXT: Cancer pain is a common complication that is frequently undertreated in patients with cancer. OBJECTIVES: This study is aimed at assessing the time needed to achieve cancer pain management goals through specialized palliative care (SPC). METHODS: This was a multicenter, prospective, longitudinal study of inpatients with cancer pain who received SPC. Patients were continuously followed up until they considered cancer pain management successful, and we estimated this duration using the Kaplan-Meier method. We investigated the effectiveness of pain management using multiple patient-reported outcomes (PROs) and quantitative measures, including pain intensity change in the Brief Pain Inventory. A paired-sample t-test was used to compare the pain intensity at the beginning and end of the observation period. RESULTS: Cancer pain management based on the PROs was achieved in 87.9% (385/438) of all cases. In 94.5% (364/385) of these cases, cancer pain management was achieved within 1 week, and the median time to pain management was 3 days (95% confidence interval [CI], 2-3). The mean worst pain intensity in the last 24 h at the start and end of observation were 6.9 ± 2.2 and 4.0 ± 2.3, respectively, with a difference of -2.9 (95% CI, -3.2 to -2.6; p < 0.01). Overall, 81.6% of the patients reported satisfaction with cancer pain management, and 62 adverse events occurred. CONCLUSION: SPC achieved cancer pain management over a short period with a high level of patient satisfaction resulting in significant pain reduction and few documented adverse events.

Prevalence of opioid-induced adverse events across opioids commonly used for analgesic treatment in Japan: a multicenter prospective longitudinal study.

PURPOSE: Although opioids have been shown to be effective for cancer pain, opioid-induced adverse events (AEs) are common. To date, little is known about the differences in risks of AEs by opioid type. This study was performed to compare the prevalence of AEs across opioids commonly used for analgesic treatment in Japan. METHODS: This study was conducted as a preplanned secondary analysis of a multicenter prospective longitudinal study of inpatients with cancer pain who received specialized palliative care for cancer pain relief. We assessed daily AEs until termination of follow-up. We rated the severity of AEs based on the Common Terminology Criteria for Adverse Events version 5.0. We computed adjusted odds ratios for each AE (constipation, nausea and vomiting, delirium, and drowsiness) with the following variables: opioid, age, sex, renal dysfunction, and primary cancer site. RESULTS: In total, 465 patients were analyzed. Based on the descriptive analysis, the top four most commonly used opioids were included in the analysis: oxycodone, hydromorphone, fentanyl, and tramadol. With respect to the prevalence of AEs among all analyzed patients, delirium (n = 25, 6.3%) was the most frequent, followed by drowsiness (n = 21, 5.3%), nausea and vomiting (n = 19, 4.8%), and constipation (n = 28, 4.6%). The multivariate logistic analysis showed that no single opioid was identified as a statistically significant independent predictor of any AE. CONCLUSION: There was no significant difference in the prevalence of AEs among oxycodone, fentanyl, hydromorphone, and tramadol, which are commonly used for analgesic treatment in Japan.

Parenting experiences of cancer patients with minor children and their conversations about the possibility of death: a cross-sectional web-based survey for an online cancer community.

PURPOSE: Many cancer patients with minor children experience difficulty talking about their illness with their children. This study aimed to investigate the parenting experiences of cancer patients with minor children and their conversations about the possibility of death. METHODS: A cross-sectional web-based survey was conducted between April and May 2019. Cancer patients with at least one child aged < 18 years were recruited from an online peer support group called "Cancer Parents." The participants were asked to complete a questionnaire about their experiences of talking about their illnesses with their children. The participants were classified into those who disclosed their cancer to their children ("disclosing group"), and those who did not disclose ("non-disclosing group"). The association between whether they talked with their children about their cancer, and whether it included conversations about the possibility of death, was examined. RESULTS: A total of 370 parents participated (with 80.8% female parents, with a median age of 43.0 years). The disclosing group (n = 274, 74.1%) wanted to know what their child felt, more than the non-disclosing group did (p < 0.001). Members of the non-disclosing group had a greater tendency than those in the disclosing group to report that they did not want their children to see their suffering (p = 0.002) and did not know how to explain their disease status (p < 0.002). Some members of both the disclosing (42.1%) and non-disclosing (6.5%) groups told their children about the possibility of death. CONCLUSION: This study showed that 74.1% of the patients with minor children disclosed their cancer to their children. The parents' feelings when thinking about interacting with their children differed significantly between the disclosing and non-disclosing groups. It is important for healthcare professionals treating patients with cancer to provide appropriate multidisciplinary support for discussing their diagnosis and prognosis with their children.

A Japanese Nationwide Survey of Nutritional Counseling for Cancer Patients and Risk Factors of Burnout among Registered Dietitians.

Purpose: Registered dietitians have played a key role in the nutritional management of cancer patients; however, no study has investigated the prevalence of burnout and associated factors among this population. The aim of this study was to investigate the following: (1) experiences, approaches, and perspectives during nutritional counseling, (2) the prevalence of burnout, and (3) burnout-associated factors among registered dietitians. Methods: A nationwide survey with self-administered questionnaires was conducted for 1070 registered dietitians belonging to all 390 designated cancer hospitals in Japan. Nutrition counseling, the prevalence of burnout, and burnout-associated factors were analyzed. Results: A total of 631 responses were analyzed. Half of the respondents recommended a consultation about treatment of symptoms or listened to their patients' distress and anxiety of death. Respondents with a severe level of burnout for emotional exhaustion, depersonalization, and personal accomplishment (PA) were 21.1%, 2.8%, and 71.9%, respectively. Burnout was associated with fewer years of clinical experience, more overtime hours, higher score of Patient Health Questionnaire-9, higher score of K-6, not so positive attitude about caring for dying patients, the approach of listening to the patients and family distress and anxiety about death, the uneasiness interacting with patients and families without an effective proposal, the difficulty of allocating staff without increasing medical costs, and the absence of feeling of a good contribution to patients and families. Conclusions: The prevalence of burnout on PA was quite high. Registered dietitians who engaged in nutritional counseling for cancer patients and families might benefit from education to help protect against burnout.

Palliative care physicians' recognition of patients after immune checkpoint inhibitors and immune-related adverse events.

PURPOSE: This study investigated the experience of palliative care physicians (PCPs) and their knowledge and recognition of immune checkpoint inhibitors (ICIs) and immune-related adverse events (irAEs) in clinical practice as well as the need to provide palliative care services for patients after ICI treatments. METHODS: A cross-sectional survey with self-administered questionnaires was conducted between February and April 2020. A total of 759 questionnaires were sent to PCPs in Japan. The changes in the PCPs' knowledge and recognition of ICIs and irAEs due to the increased experiences of treating patients after ICI treatments were analyzed. RESULTS: Four hundred ninety-two responses (64.8%) were analyzed. Only 15.0% of respondents had no experience of patients after ICI treatments, while 53.9% had experience of more than six patients. On the other hand, 40% of respondents had no experience of patients with suspected irAEs, while only 13.4% had experience of more than six patients. Respondents with more experience of patients after ICI treatments or those with suspected irAEs had extensive knowledge of ICIs and irAEs, were more confident in treating these patients, and tended to consider irAEs as therapeutic indications. The majority of respondents required guidelines and efficient consultation systems with oncologists. CONCLUSION: This study demonstrated that PCPs with experience had extensive knowledge and confidence of ICIs and irAEs and tended to recognize irAEs as therapeutic indications. The establishment of a more intimate relationship between PCPs and oncologists is important for providing better treatment for these patients.

Effects of parenteral nutrition and hydration on survival in advanced cancer patients with malignant bowel obstruction: secondary analysis of a multicenter prospective cohort study.

PURPOSE: The benefits of parenteral nutrition and hydration (PNH) in patients with advanced cancer remain unknown. Therefore, we conducted a prospective multicenter cohort study to assess the effects of PNH on survival in patients with malignant bowel obstruction (MBO). METHODS: The present study was a secondary analysis. Data on primary nutritional administration routes during the first week of admission to palliative care units, i.e., parenteral nutrition and parenteral hydration, were obtained. Data on the averaged calorie sufficiency rate/total calorie intake (75% ≤ or 750 kcal/day ≤ , 50-75% or 500-750 kcal/day, 25-50% or 250-500 kcal/day, and < 25% or < 250 kcal/day) were also obtained. Participants with MBO were included and divided into two groups: PNH-high (25% ≤ or 250 kcal/day ≤) and PNH-low (< 25% or < 250 kcal/day). We performed time-to-event analyses using the Kaplan-Meier method, log-rank test, and univariate and multivariate Cox regression analyses. RESULTS: Patients were divided into the PNH-high (n = 68) and PNH-low (n = 76) groups. A significant difference was observed in survival rates between the two groups (log-rank P < 0.001). Median survival times were 35.5 (95% CI 27-44) and 17.5 (95% CI 13-21) days, respectively. In the multivariate-adjusted model, a significantly lower risk of mortality was observed in Cox's proportional hazard model in the PNH-high group (HR 0.55 (95% CI 0.36-0.83), P = 0.005) than in the PNH-low group. CONCLUSION: The present results indicated the beneficial effects of PNH for prolonging survival in advanced cancer patients with MBO in palliative care units.

Differences among institutions in the prevalence of and indications for urinary catheterization of advanced cancer patients at palliative care units: A multicenter prospective cohort study (EASED).

BACKGROUND: Studies on the appropriate use of urinary catheters for cancer patients at the end of life are limited. AIM: To clarify the differences among institutions in the prevalence of and indications for urinary catheterization of advanced cancer patients at palliative care units. DESIGN: Pre-planned secondary analysis of a multicenter, prospective cohort study; East-Asian collaborative cross-cultural Study to Elucidate the Dying process (EASED). SETTING/PARTICIPANTS: This study enrolled consecutive advanced cancer patients admitted to palliative care units between January and December 2017. The final study group comprised 1212 patients from 21 institutions throughout Japan. RESULTS: Out of the 1212 patients, 380 (31.4%; 95% confidence interval, 28.7%-34.0%) underwent urinary catheterization during their palliative care unit stay, and the prevalence of urinary catheterization in patients who died at palliative care units by institution ranged from 0.0% to 55.4%. When the 21 participating institutions were equally divided into three groups according to the institutional prevalence of catheterization, patients with difficulty in moving safely, exhaustion on movement, and restlessness or agitation were more likely to be catheterized in institutions with a high prevalence of catheterization than in those with a low or moderate prevalence (p < 0.008, p = 0.008, and p < 0.008, respectively). CONCLUSION: This study revealed that the institutional prevalence of urinary catheterization in advanced cancer patients at palliative care units widely varied. Further studies are needed to establish the appropriate use of urinary catheters, especially in patients with difficulty in moving safely, exhaustion on movement, and restlessness or agitation.

Association Between Loneliness and the Frequency of Using Online Peer Support Groups Among Cancer Patients With Minor Children: A Cross-Sectional Web-Based Study.

CONTEXT: Cancer patients with minor children are increasing; however, they do not receive sufficient support. OBJECTIVE: This study aimed to investigate the association between loneliness and the frequency of using online peer support groups among cancer patients with minor children. METHODS: A cross-sectional web-based survey was conducted from April to May 2019. Cancer patients with minor children were recruited from an online peer support group called "Cancer Parents." Individuals diagnosed with cancer and whose youngest children were younger than 18 years were enrolled. Materials included: the UCLA Loneliness Scale version 3 (UCLA-LS), K6 scale, abbreviated Lubben Social Network Scale, and the sociodemographic/clinical characteristics questionnaire. Multivariate logistics regression analysis was performed to determine the factors associated with the high loneliness group (defined as those above the median score on the UCLA-LS). RESULTS: A total of 334 patients participated (79.9% female; mean age 43.1 years, standard deviation 5.8). The most common primary cancer type was breast (34.1%). The median score of the UCLA-LS was 45 (interquartile range 37-53). The multivariate logistics regression analysis revealed that the high loneliness group was significantly associated with the frequent use of online peer support group less than once a week (odds ratio [OR] = 0.47; 95% CI = 0.26-0.85; P = 0.012), with a smaller social network (OR = 0.78; 95% CI = 0.73-0.83; P < 0.001), and higher psychological distress (OR = 1.16; 95% CI = 1.09-1.23; P < 0.001). CONCLUSIONS: Frequent use of online peer support groups was associated with less loneliness among cancer patients with minor children.

Physician Decision-Making Patterns and Family Presence: Cross-Sectional Online Survey Study in Japan.

BACKGROUND: Due to a low birth rate and an aging population, Japan faces an increase in the number of elderly people without children living in single households. These elderly without a spouse and/or children encounter a lack of caregivers because most sources of care for the elderly in Japan are not provided by private agencies but by family members. However, family caregivers not only help with daily living but are also key participants in treatment decision making. The effect of family absence on treatment decision making has not been elucidated, although more elderly people will not have family members to make surrogate decisions on their behalf. OBJECTIVE: The aim is to understand the influence of family absence on treatment decision making by physicians through a cross-sectional online survey with three hypothetical vignettes of patients. METHODS: We conducted a cross-sectional online survey among Japanese physicians using three hypothetical vignettes. The first vignette was about a 65-year-old man with alcoholic liver cirrhosis and the second was about a 78-year-old woman with dementia, both of whom developed pneumonia with consciousness disturbance. The third vignette was about a 70-year-old woman with necrosis of her lower limb. Participants were randomly assigned to either of the two versions of the questionnaires-with family or without family-but methods were identical otherwise. Participants chose yes or no responses to questions about whether they would perform the presented medical procedures. RESULTS: Among 1112 physicians, 454 (40.8%) completed the survey; there were no significant differences in the baseline characteristics between groups. Significantly fewer physicians had a willingness to perform dialysis (odds ratio [OR] 0.55, 95% CI 0.34-0.80; P=.002) and artificial ventilation (OR 0.51, 95% CI 0.35-0.75; P<.001) for a patient from vignette 1 without family. In vignette 2, fewer physicians were willing to perform artificial ventilation (OR 0.59, 95% CI 0.39-0.90; P=.02). In vignette 3, significantly fewer physicians showed willingness to perform wound treatment (OR 0.51, 95% CI 0.31-0.84; P=.007), surgery (OR 0.35, 95% CI 0.22-0.57; P<.001), blood transfusion (OR 0.45, 95% CI 0.31-0.66; P<.001), vasopressor (OR 0.49, 95% CI 0.34-0.72; P<.001), dialysis (OR 0.38, 95% CI 0.24-0.59; P<.001), artificial ventilation (OR 0.25, 95% CI 0.15-0.40; P<.001), and chest compression (OR 0.29, 95% CI 0.18-0.47; P<.001) for a patient without family. CONCLUSIONS: Elderly patients may have treatments withheld because of the absence of family, highlighting the potential importance of advance care planning in the era of an aging society with a declining birth rate.

The importance of family caregiving to achieving palliative care at home: a case report of end-of-life breast cancer in an area struck by the 2011 Fukushima nuclear crisis: A case report.

RATIONALE: The primary setting of palliative care has shifted from inpatient care to patients' residences. Family caregiving is essential for patients with life-limiting illnesses to receive palliative care at home, however little information is available regarding potential interventions to achieve palliative homecare for those without sufficient support from family members in various settings, including disasters. PATIENT CONCERNS: In March 2011, Fukushima, Japan experienced an earthquake, tsunami and nuclear disaster. In August 2015, a 59-year-old Japanese female presented to our hospital, located 23 km north of Fukushima Daiichi Nuclear Power Plant, with a right breast ulcer. DIAGNOSES: The patient was diagnosed with stage IV breast cancer. INTERVENTIONS: The patient's general condition gradually worsened despite a one-year course of chemotherapy, and she became bedridden after a fall in October 2016. Although the patient wished to receive palliative homecare, this appeared challenging to achieve because she resided alone in a temporary housing shelter. Although she originally lived with her family in Odaka District, Fukushima, she relocated outside of the city following evacuation orders after the disaster. The evacuation orders for Odaka District were still in effect when she returned to the city alone in 2014. We contacted her sister who moved apart from her during the evacuation, and explained the necessity of family caregiving to enable her palliative homecare. OUTCOMES: The sister decided to move back to their original residence in Odaka District and live with the patient again. The patient successfully spent her end-of-life period and died at home. LESSONS: Health care providers and community health workers may need to take a pro-active approach to communicating with family members to draw informal support to enable patients' end-of-life management according to their values and preferences. This is a lesson which may be applicable to broader healthcare settings beyond cancer, or disaster contexts, considering that population ageing and social isolation may continue to advance worldwide.