The Impact of Pain Education Interventions for Cancer Survivors and Caregivers: A Systematic Review with Meta-Analysis.

INTRODUCTION: Cancer-related pain is a global health-related problem associated with functional impairment, anxiety, depression, and reduced quality of life. The use of educational interventions for patients and their caregivers has been proposed as a promising tool for overcoming pain in cancer. The aim of this study was to summarize by means of a standardized methodological systematic revision the actual pain education intervention used in cancer patients and their caregivers and to analyze its effects on pain. METHODS: A search was conducted through PubMed, Web of Science, Scopus and Cinhal from their inception to September 2022. Randomized controlled trials which included pain education interventions were identified. Two reviewers performed independent data extraction and methodologic quality assessments of these studies. RESULTS: A total of seven studies was included in the study. The meta-analysis showed that pain education interventions have a significant effect on the worst pain; however, there was no effect on average pain. CONCLUSIONS: Pain education interventions addressed to patients and their caregivers could have positive effects on cancer-related pain. It is recommended that a minimum of three sessions of about one hour's duration be held once a week. Further research needs to be carried out and analyzed on the effects over the long term. Pain education interventions show positive results in improving pain in cancer patients regardless of etiology or extent of the cancer. Studies with better methodological quality should be carried out to address specific components related to education interventions.

The mediation role of hope in the relationship of resilience with depression, anxiety, and stress in caregivers of children and adolescents with cancer.

This study aimed to determine the mediation role of hope in the relationship of resilience with depression, anxiety, and stress in caregivers of children and adolescents with cancer. This cross-sectional study was conducted on 200 caregivers of children and adolescents with cancer. Adult Hope Scale, Connor-Davidson Resilience Scale, and Depression, Anxiety and Stress (DAS) scales were used for data collection. The mediator and moderator model was tested using the SPSS macro PROCESS (Model 4, and 5). The mediator model (model 4) indicated that DAS significantly correlated with resilience (ß = - 0.54, t-value = - 5.01, p < 0.001), and hope (ß = - 0.84, t-value = - 3.45, p = 0.0007). Hope mediated the relationship between resilience and DAS among caregivers of children and adolescents with cancer (Effect = - 0.18, SE = 0.06, 95% CI - 0.33 to - 0.06). The mediator and moderator model (model 5) showed that female caregivers had a stronger correlation between resilience and DAS when compared to their male counterparts (ß = - 0.56, t-value = - 3.90, p-value = 0.0001); also, hope mediated the relationship between resilience and DAS among caregivers of children and adolescents with cancer (Effect = - 0.20, SE = 0.08, 95% CI - 0.37 to - 0.04). In conclusion, hope was a mediator, and female caregivers were a moderator in the relationship of resilience with depression, anxiety, and stress, and its promotion might be effective among caregivers of children and adolescents with cancer. It seems that resilience, female caregivers, and hope may provide good protection against depression, anxiety, and stress in caregivers of cancer patients.

LPS-induced whole-blood cytokine production and depressive symptoms in dementia spousal caregivers: The moderating effect of childhood trauma.

Dementia spousal caregivers are at risk for adverse mental and physical health outcomes. Caregiver burden, anticipatory grief, and proinflammatory cytokine production may contribute to depressive symptoms among caregivers. People who report childhood trauma are more likely to have exaggerated stress responses that may also contribute to depressive symptoms in adulthood. This study aimed to test whether the relationship between whole-blood cytokine production and depressive symptoms is strongest in caregivers who report high levels of childhood trauma. METHODS: A sample of 103 dementia spousal caregivers provided self-report data on demographics, health information, caregiver burden, anticipatory grief, and depressive symptoms. We also determined lipopolysaccharide-induced whole-blood cytokine production as the primary measure of immune cell reactivity. We measured interleukin-1ß (IL-1ß), interleukin-6 (IL-6), tumor necrosis factor-α (TNF-α), and interleukin-10 (IL-10) and converted z-scores of each cytokine into a composite panel. We regressed depressive symptoms on proinflammatory cytokine production, caregiver burden, and anticipatory grief, adjusting for demographic and health-related covariates. RESULTS: Whole-blood cytokine production and childhood trauma were associated with depressive symptoms. Childhood trauma moderated the relationship between whole-blood cytokine production and depressive symptoms. Whole-blood cytokine production was only associated with depressive symptoms at mean and high levels of childhood trauma, but not at low levels of childhood trauma. The main effects of burden and anticipatory grief on depressive symptoms were strongest for caregivers reporting high levels of childhood trauma. DISCUSSION: Childhood trauma has lasting impacts on psychosocial experiences later in life and has effects that may confer susceptibility to inflammation-related depression. Our findings contribute to ongoing efforts to identify risk factors for adverse mental health in dementia spousal caregivers.

Investigation and Correlation Analysis of Self-Care Ability and Fatigue Among Primary Caregivers of Postoperative Patients With Liver Cancer in China.

BACKGROUND: In the postoperative period, patients mainly rely on caregivers, who experience their own physical and mental fatigue. Caregiver fatigue may affect patient outcomes. OBJECTIVES: This study explored the fatigue status and influencing factors of primary caregivers of patients after liver cancer surgery. METHODS: A baseline information questionnaire, the Fatigue Scale-14, and the Barthel Index were used to investigate the self-care ability and fatigue status of 191 primary caregivers of patients with hepatic carcinoma who had had surgery. FINDINGS: The postoperative hospitalization time and self-care level of patients, whether the primary caregiver had health insurance, subjective feelings of fatigue, the perception that health was affected, and the patients' desired level of postoperative care were correlated with the occurrence of primary caregiver fatigue.

Caregiver burden and risk of epithelial ovarian cancer in the Nurses' Health Studies.

Psychosocial stress may increase ovarian cancer risk and accelerate disease progression. We examined the association between caregiver burden, a common stressor, and risk of epithelial ovarian cancer. We prospectively followed 67,724 women in the Nurses' Health Study (NHS; 1992-2012) and 70,720 women in the NHSII (2001-2009) who answered questions on informal caregiving (i.e., caregiving outside of work). Women who reported no informal caregiving were considered non-caregivers while, among women who provided care outside of work, caregiver burden was categorized by time spent caregiving and perceived stress from caregiving. For the 34% of women who provided informal care for ≥15 hours per week, 42% described caregiving as moderately to extremely stressful. Pooled multivariate analyses indicated no difference in ovarian cancer risk for women providing ≥15 hours of care per week compared to non-caregivers (hazard ratio (HR)=0.96; 95% confidence interval (CI): 0.79-1.18), and no association was evident for women who reported moderate or extreme stress from caregiving compared to non-caregivers (HR=0.96; 95% CI: 0.75-1.22). Together with prior work evaluating job strain and ovarian cancer risk, our findings suggest that, when evaluating a stressor's role in cancer risk, it is critical to consider how the stressor contributes to the overall experience of distress.

Relating caregiver experiences to personalized "push" content in mobile applications among caregivers of pediatric patients with oncology conditions.

OBJECTIVE: With the evolution of data algorithms and personalized push systems in mobile applications, patients who have searched for disease-related information may repeatedly receive similar content on app homepages or through notifications. This study aims to assess the influence of health-related content delivered through mobile applications on the anxiety and depression levels of caregivers of pediatric oncology patients. METHODS: A survey consisting of 16 questions was conducted among 91 caregivers of pediatric oncology patients at the Children's Hospital affiliated with Chongqing Medical University. The questionnaire was designed by oncologists and the Hospital Anxiety and Depression Scale was used to assess the caregivers' psychological states. RESULTS: The study found that 31.5% of caregivers exhibited borderline anxiety symptoms, while 20.2% displayed borderline depression symptoms. Caregivers who noticed changes in homepage recommendations reported higher levels of anxiety (p = .004) and depression (p = .034). Additionally, 50.6% occasionally felt anxious or uneasy due to personalized notifications and 19.1% frequently felt this way. Moreover, 53.9% of the caregivers reported a negative impact on their emotions or daily life. SIGNIFICANCE: Personalized push notifications related to disease information in mobile applications can impose a significant psychological burden on patients and their caregivers. Mobile application developers and healthcare providers must strengthen their support in the digital health domain to enhance the emotional well-being of cancer patients and their caregivers.

Experiences and preferences of truth-telling in families of children with cancer: A phenomenological study.

Objective: The delivery of bad news is an unpleasant but necessary medical procedure. However, few studies have addressed the experiences and preferences of the families of school-aged children with cancer when they are informed of the children's condition. This study aimed to explore families of school-age children with cancer for their preferences and experiences of truth-telling. Methods: This descriptive phenomenological qualitative research was conducted using focus group interviews and semistructured interview guidelines were adopted for in-depth interviews. Fifteen families participated in the study. The data were analyzed using Colaizzi's analysis. Data were collected from August 2019 to May 2020. Results: The study identified two major themes: "caught in a dilemma" and "kind and comprehensive team support." The first major theme focused on families' experiences with cancer truth-telling. Three sub-themes emerged: (1) cultural aspects of cancer disclosure, (2) decision-making regarding informing pediatric patients about their illness, and (3) content of disclosure after weighing the pros and cons. The second major theme, which revealed families' preferences for delivering bad news, was classified into three sub-themes: (1) have integrity, (2) be realistic, and (3) be supportive. Conclusions: This study underscores the dilemma encountered by the families of children with cancer after disclosure and their inclination toward receiving comprehensive information and continuous support. Health care personnel must improve their truth-telling ability in order to better address the needs of such families and to provide continuous support throughout the truth-telling process.

An intervention module for caregivers of children with acute lymphoblastic leukemia (ALL).

INTRODUCTION: Childhood cancer caregivers report psychological distress and unmet psychosocial needs, affecting outcomes for their children. An experimental study was carried out to measure the effectiveness of an intervention in addressing traumatic stress, depression and anxiety. METHODS: Caregivers (n = 59) of children with ALL were allocated to both groups (intervention, n = 29; TAU control, n = 30) via the SNOSE method. The intervention is a physical copy of a 2-week psychosocial self-help guidebook. Scores on the PCL-5, BDI and BAI were recorded at baseline, post-intervention and 1-month follow-up. RESULTS: There was a statistically significant difference in traumatic stress symptoms post intervention (F(1, 57) = 5.760, p = .020, np2 = 0.093) in favor of the intervention group. No statistical significance was found for its effect at one-month follow-up, overall depression and anxiety. CONCLUSION: A psychosocial module developed for caregivers of children with ALL was found to be effective in reducing symptoms of traumatic stress and potentially depression. However, the maintenance of its effectiveness and the effectiveness on anxiety requires further study.

More competent informal caregivers reduce advanced cancer patients' unplanned healthcare use and costs.

BACKGROUND: Patients with metastatic cancer experience high healthcare use and costs, most of which are unplanned. We aimed to assess whether patients with more competent informal caregivers have lower unplanned healthcare use and costs. METHODS: This study used data from a prospective cohort of patients with solid metastatic cancer. Patients and their informal family caregivers were surveyed every 3 months until patients' death. Patients' unplanned healthcare use/costs were examined through hospital records. Caregivers responded to the 4-item Caregiver Competence Scale. First, in a deceased subsample of patients and their caregivers, we used patients' last 2 years of data (226 dyads) to assess the association between caregivers' competency (independent variable) and patients' unplanned healthcare use/costs (outcomes). Next, in a prospective sample of patient-caregiver dyads (up to 15 surveys), we assessed whether patients' functional well-being and psychological distress moderated the association between caregivers' competency and unplanned healthcare use/costs (311 dyads). RESULTS: In the deceased subsample, during last 2 years of patients' life, caregivers' higher competency lowered the odds of patients' unplanned healthcare use [OR (CI) = 0.86 (0.75, 0.98), p = 0.03], and was associated with a significant reduction in unplanned healthcare costs [Coeff (CI) = -0.19 (-0.36, -0.01), p = 0.03]. In the prospective sample, patients' functional well-being and psychological distress moderated the association between caregivers' competency and patients' unplanned healthcare use/costs. CONCLUSION: With deterioration in patients' condition and an increase in caregiving demands, improving caregivers' competency can reduce patients' unplanned healthcare use and costs. This should be further tested in future trials.

Resilience and related factors in caregivers of adult cancer patients: a systematic review.

Background: This systematic review aimed to investigate resilience and its related factors in caregivers of adult patients with cancer. Materials and methods: A systematic search of online electronic databases including Scopus, PubMed, Web of Science, Iranmedex, and Scientific Information Database (SID) was performed using keywords extracted from Medical Subject Headings such as "Psychological Resilience", "Caregiver", and "Cancer" from the earliest to 6 June 2023. The quality of the studies included in this review was evaluated using the appraisal tool for cross-sectional studies (AXIS tool). Results: A total of 2735 caregivers of cancer patients participated in 15 studies. The majority of the studies found that caregivers of cancer patients had high levels of resilience. Factors related to the resilience of cancer patients' caregivers included caregivers' social support, caregivers' quality of life, patients' resilience, caregivers' family function, patients' performance, caregivers' age, caregivers' health status, caregivers' self-esteem, caregivers post-traumatic growth, caregivers religious, caregivers hope, caregivers positive affect, patients age, patients social support, patients resilience support, patients quality of life, caregivers' anxiety, caregivers' depression, caregivers' burden, caregivers level of education, caregivers financial problem, caregivers memory, caregivers negative affect, caregivers post-traumatic stress disorder, maternal distress, and patients post-traumatic stress disorder. Conclusion: Therefore, healthcare administrators and policymakers can enhance the resilience of caregivers and the quality of care they provide by instituting ongoing training initiatives focused on evaluating mental well-being and implementing coping strategies for managing stress and depression.

Exploring the Role of Caregivers in Day Surgery for Patients Undergoing Plastic and Reconstructive Surgery: A Comprehensive Patient and Caregiver Survey Approach.

This study investigates the interplay between plastic and reconstructive surgery patients and their respective caregivers in the Day Surgery Unit of Policlinico Umberto I, Rome, Italy. Utilizing a dual survey approach, we explored the role in patient safety and the challenges faced by caregivers during the perioperative period. This study, conducted at Policlinico Umberto I, covers all surgical procedures from October to December 2023, encompassing skin cancer removal, fat grafting, scar revisions, hand surgeries, and eyelid surgeries. Patient demographics reflect varying age distributions: 18-39 (4.9%), 40-59 (31.7%), 60-75 (34.1%), and over 76 years (29.3%).

People affected by cancer and their carers from gender and sexually diverse communities: their experiences and the role of smartphone applications.

BACKGROUND: People living with cancer, or carers who are from lesbian, gay, bisexual, transgender, queer, intersex or asexual (LGBTQIA+) communities experience unique information and support needs. Accessible technology-based resources providing tailored support are required to promote wellbeing, however this is a growing area of research requiring further investigation. The purpose of this study was to explore the experiences of healthcare services among people living with cancer, and their carers, who belong to sexual or gender diverse communities (LGBTQIA+), and identify how smartphone applications (apps) could support people from LGBTQIA + communities. METHODS: This was a qualitative descriptive study where people living with cancer or carers from LGBTQIA + communities participated in phone interviews. Participants were recruited across Australia via social media advertisements, LGBTQIA + medical practices, and cancer advocacy groups. Participants were asked questions about their experiences, and were provided with screenshots of an existing app and asked to provide feedback on content and inclusiveness. Transcripts were coded and codes grouped together to form similar and concepts. Inductive and deductive analyses were used to create themes. RESULTS: 13 patients (mean age 56 (SD:13)), and three carers (mean age 64 (SD:19)) completed phone interviews. The majority of participants identified their gender as female (patients n = 9, carers 3), and their sexuality as gay or lesbian (patients n = 10, carers n = 3). Four themes were created: (1) navigating disclosure in healthcare, described emotional challenges surrounding disclosure; (2) the power of positive experiences with clinicians, described positive interactions and gaps in care from clinicians; (3) impact of gender and sexuality on informal support, outlined support received from informal network and gaps in support, and; (4) opportunities to increase inclusivity in smartphone apps, generated ideas on how apps can be tailored to meet needs identified. CONCLUSION: Disclosure of gender or sexuality, and interactions with clinicians had the potential to impact participants' experience of cancer care. Gaps in informal networks pointed at how to better support LGBTQIA + communities, and identified opportunities for inclusion in an app that will be tailored and trialled for this community. Future work should focus on addressing systems-level processes in acknowledging and supporting priority groups affected by cancer.

Quality of Life in Patients and Their Spouses and Cohabitating Partners in the Year Following a Cancer Biopsy (the Couples Cope Study): Protocol for a Prospective Observational Study.

BACKGROUND: Receiving a diagnosis of cancer is a profound and often very stressful experience. Few studies have prospectively recruited patients prior to receiving a new diagnosis of cancer and included spouses or partners. OBJECTIVE: The aim of the Couples Cope Study is to understand the impact of undergoing a diagnostic biopsy and receiving a new cancer diagnosis on quality of life (QoL) in both patients and their spouses or partners, as well as on the quality of their relationship. This protocol paper describes the study design and assesses the feasibility of recruitment and retention. METHODS: Study staff reviewed the schedules of collaborating physicians using specific encounter codes to identify patients scheduled for breast or prostate biopsies. Potential participants were prescreened via the electronic health record and sent a recruitment letter at least 2 to 3 weeks prior to their biopsy procedure. Patients subsequently underwent a phone screening to determine eligibility. Patients who enrolled provided study staff with contact information for their spouses or partners. All consent forms were completed online. Surveys were completed online prior to receiving the biopsy results (baseline), and at 1, 3, 6, and 9 months after the biopsy. Study staff engaged in ongoing, personalized contact with participants and sent assessment completion reminders via phone and email. RESULTS: A total of 2294 patients undergoing a breast or prostate biopsy were identified and 69% (n=1582) were eligible for phone screening following electronic health record prescreening. Of the 431 patients who underwent phone screening, 75% (n=321) were eligible to participate. Of the eligible patients, 72% (n=231) enrolled and 82% (n=190) of enrolled patients had an accompanying partner or spouse who also enrolled. A total of 77% (34/44) of patients who received a cancer diagnosis and 72% (26/36) of their spouses or partners were retained through 9 months, while 80% (53/66) of patients who received a benign diagnosis and 68% (42/62) of their partners were retained. CONCLUSIONS: Prospective recruitment of patients undergoing diagnostic biopsy and their partners is feasible and requires both strategic collaboration with providers and concerted prescreening and recruitment efforts by study staff. Importantly, this study was able to conduct all study activities online without disrupting clinical workflow and without requiring patients and their spouses or partners to come into the laboratory. Consideration should be given to the ratio of biopsies to cancer diagnoses, which can vary significantly by cancer type. Prospective studies are needed and can inform our ability to provide effective support earlier to couples facing a possible cancer diagnosis. Future studies should examine other tumor types that have received less attention in QoL studies, include behavioral and neurobiological assessments beyond self-report measures, and follow couples beyond 9 months in order to examine long-term effects on QoL. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52361.

Loneliness, psychological distress, and the moderating effect of positive aspects of caregiving among cancer caregivers.

PURPOSE: Family caregivers of patients with cancer often experience both loneliness and symptoms of psychological distress, such as anxiety and depression. The purpose of this study was to evaluate the associations between loneliness and anxiety and loneliness and depression among family caregivers of patients with cancer and to investigate whether positive aspects of caregiving can have a moderating effect on these relationships. METHODS: We conducted a cross-sectional exploratory study using baseline data from an ongoing multisite clinical trial. Multiple linear regression models were used to analyze the relationships between loneliness and psychological distress symptoms and the moderating effect of positive aspects of caregiving. Psychological distress outcomes were measured using PROMIS Short Forms (8a) for Anxiety and Depression. RESULTS: We identified a significant association between loneliness and symptoms of both anxiety and depression. Positive aspects of caregiving did not significantly moderate the relationship between loneliness and depression or loneliness and anxiety. CONCLUSION: The results of this study shed new light on the relationship between loneliness and symptoms of psychological distress experienced by family caregivers of cancer patients, providing a better understanding of the impact that recognition of positive aspects of caregiving has on the association between loneliness and psychological distress symptoms. Our findings emphasize the importance of targeting family caregiver loneliness in order to reduce psychological distress among family caregivers of cancer patients.

The development of an archive of patient-reported outcome measures (PROMs) in oncology: The Italian PRO4All project.

BACKGROUND: Choosing the most adequate measure of patient-reported outcomes (PROs) for a specific medical condition is not straightforward. This study aimed to develop a comprehensive archive of patient-reported outcome measures (PROMs), observer-reported outcome measures (ObsROMs) and caregiver-reported outcome measures (CROMs) in oncology and identify their main characteristics and target outcome domains. MATERIALS AND METHODS: As part of the Italian PRO4All Project, we retrieved questionnaires through an extensive search of online databases. We developed a data extraction form to collect information on cancer type, questionnaire variant(s), recall period, and scoring system. We performed a content analysis of the questionnaires to assign each item a specific outcome domain according to a predefined 38-item taxonomy. RESULTS: A total of 386 PROMs (n = 356), ObsROMs (n = 13) and CROMs (n = 17) were identified and described; of these, 358 were also analyzed in their content. 47.3 % of the instruments were cancer type-specific, 45.1 % were generic for cancer and 7.9 % were developed for the general population but also recommended in oncology. The great majority (92.2 %) were patient-reported. In 50.3 % the recall period was "last week". The mean number of items per questionnaire was 22.0 (range: 1-130). 7794 items were assigned an outcome domain, the most frequent being emotional functioning/wellbeing (22 %), physical functioning (15.7 %), general outcomes (10.1 %) and delivery of care (8.9 %). CONCLUSIONS: There are a variety of patient and caregiver-reported measures in oncology. This archive can guide researchers and practitioners in selecting the most suitable measures and fostering a patient-centered approach in clinical trials, clinical practice, and regulatory activities.

Association of Patient Reported Outcomes With Caregiver Burden in Older Patients With Advanced Heart Failure: Insights From the SUSTAIN-IT Study.

BACKGROUND: Caregivers of patients with advanced heart failure may experience burden in providing care, but whether changes in patient health status are associated with caregiver burden is unknown. METHODS: This observational study included older patients (60-80 years old) receiving advanced surgical heart failure therapies and their caregivers at 13 US sites. Patient health status was assessed using the 12-item Kansas City Cardiomyopathy Questionnaire (range, 0-100; higher scores are better). Caregiver burden was assessed using the Oberst Caregiving Burden Scale, which measures time on task (OCBS-time) and task difficulty (OCBS-difficulty; range, 1-5; lower scores are better). Measurements occurred before surgery and 12 months after in 3 advanced heart failure cohorts: patients receiving long-term left ventricular assist device support; heart transplantation with pretransplant left ventricular assist device support; and heart transplantation without pretransplant left ventricular assist device support. Multivariable linear regression was used to identify predictors of change in OCBS-time and OCBS-difficulty at 12 months. RESULTS: Of 162 caregivers, the mean age was 61.0±9.4 years, 139 (86%) were female, and 140 (86%) were the patient's spouse. At 12 months, 99 (61.1%) caregivers experienced improved OCBS-time, and 61 (37.7%) experienced improved OCBS-difficulty (versus no change or worse OCBS). A 10-point higher baseline 12-item Kansas City Cardiomyopathy Questionnaire predicted lower 12-month OCBS-time (ß=-0.09 [95% CI, -0.14 to -0.03]; P<0.001) and OCBS-difficulty (ß=-0.08 [95% CI, -0.12 to -0.05]; P<0.001). Each 10-point improvement in the 12-item Kansas City Cardiomyopathy Questionnaire predicted lower 12-month OCBS-time (ß=-0.07 [95% CI, -0.12 to -0.03]; P=0.002) and OCBS-difficulty (ß=-0.09 [95% CI, -0.12 to -0.06]; P<0.001). CONCLUSIONS: Among survivors at 12 months, baseline and change in patient health status were associated with subsequent caregiver time on task and task difficulty in dyads receiving advanced heart failure surgical therapies, highlighting the potential for serial 12-item Kansas City Cardiomyopathy Questionnaire assessments to identify caregivers at risk of increased burden. REGISTRATION: URL: https://www.clinicaltrials.gov; unique identifier: NCT02568930.

'It was never about me': A qualitative inquiry into the experiences of psychological support and perceived support needs of family caregivers of people with high-grade glioma.

BACKGROUND: Family caregivers of people with high-grade glioma often report high rates of psychological distress, which has been attributed to the unique aspects of the disease and onerous care demands. Clinical practice guidelines advocate for caregiver support from diagnosis through to end-of-life and bereavement. Yet, research has identified that caregivers' support needs are often overlooked. AIM: To explore caregivers' experiences of psychological support and perceptions of what constitutes optimal psychological support for caregivers in the context of high-grade glioma. DESIGN: Qualitative study involving semi-structured interviews with data analysed using reflexive thematic analysis. SETTING/PARTICIPANTS: Eighteen current (n = 11) and bereaved (n = 7) family caregivers (73% female, aged 33-69 years) of adults with high-grade glioma participated. Interviews explored caregivers' perceptions of psychological support. RESULTS: Two major themes were generated. The first theme, 'It was never about me', reflected caregivers prioritise for people with high-grade glioma to be well supported despite experiencing their own unmet psychological support needs. The second theme, 'Continuous, coordinated and personalised support', highlighted the importance of timely and tailored interventions addressing caregivers' practical, educational and emotional support needs throughout the illness journey. CONCLUSIONS: Caregivers commonly prioritise the support needs of people with high-grade gliomas; yet, have their own distinct needs that vary throughout the illness. Primary care providers have a potential role in facilitating timely access to palliative care, practical support and brain tumour-specific psychological support to meet caregivers' diverse needs across the care continuum in the context of high-grade glioma.

Treatment Cost and Psychological Impact of Burkitt Lymphoma on Ghanaian Families and Caregivers.

OBJECTIVE: Before June 2022, the treatment cost of Burkitt lymphoma (BL) in Ghana was mainly borne by the child's family or caregiver. We determined the treatment cost of BL in children and its psychological impact on parents and caregivers. METHOD: This prospective observational study assessed the direct medical and nonmedical costs (US dollars [USD]) incurred during the treatment of a child with BL for 6 consecutive months using a cost diary. Productivity losses and the psychological impact on parents and caregivers were assessed using a self-administered questionnaire and the Caregiver Quality of Life Index-Cancer (CQOLC). RESULTS: Of the 25 participants, 7 abandoned the treatment of their children, and 4 withdrew because the children passed away. The median (Q1, Q3) cost for treating BL per child for caregivers/parents (N = 12) was USD 947.42 (USD 763.03, USD 1953.05). Direct medical costs formed 71% (USD 11 458.97) of total treatment costs. Working hours of parents before the child's cancer diagnosis decreased from a median (Q1, Q3) of 44.00 (20.00, 66.00) hours to 1.50 (0, 20.00) hours after the diagnosis. The mean (SD) CQOLC score was 107.92 (15.89), with higher scores in men (111.00 [17.26]), married participants (111.26 [17.29]), Higher National Diploma certificate holders (113.00 [1.41]), and participants earning a monthly income more than USD 84.60. CONCLUSION: Treatment costs reduced the overall household income of 5 families. Parents and caregivers experienced reduced work hours and loss of employment. CQOLC scores were higher in married participants, those with a higher educational background, and those with higher income.

Patient-caregiver dyad concordance of transition readiness assessment for adolescent with cancer: A network analysis.

AIMS: The concordance of adolescents with cancer and caregivers was examined, and the core elements of transition readiness were identified. METHODS: In this cross-sectional study, 196 adolescent-caregiver dyads completed the Chinese version of Self-Management and Transition to Adulthood with Rx = Treatment Questionnaire and its parent version between March 2023 and August 2023. Intraclass correlation coefficients, paired t-tests and network analysis were used for data analysis. RESULTS: Caregivers reported slightly lower scores for transition readiness than adolescents (3.28 vs. 3.32). Healthcare engagement and provider communication were core elements in transition readiness networks. At the dyad level, agreement between adolescents' and caregivers' transition readiness ranged from poor to fair (intraclass correlation coefficients 0.103-0.486), and a significant difference in structure was found between the two networks. CONCLUSIONS: Caregivers tended to underestimate adolescents' transition readiness. Attaining better concordance between adolescents and family caregivers is critical to aligning roles and responsibilities in the transition process. IMPLICATIONS FOR PAEDIATRIC CANCER CARE: This study extends the evidence on the variation in adolescents' transition readiness, clarifying the complex associative relationships among the elements of transition readiness, which can be potential pathways for improving transition readiness. Second, this study is the first to assess transition readiness from a dyad's perspective. The findings highlighted the patient-caregiver incongruence in rating patients' transition readiness, suggesting that targeted dyadic interventions should be developed and implemented to improve patient-caregiver transition readiness concordance, facilitate effective communication and mutuality between patients and caregivers, and contribute to their collaboration during the transition of adolescents and optimization of outcomes. WHAT PROBLEM DID THE STUDY ADDRESS?: Increased long-term survival rates of survivors of paediatric cancer highlighted the significant need for care continuity. Transitional readiness is an important predictor of adolescent survivor's ability to adapt to a long-term survival period. Assessments of adolescents' transition readiness are limited and overlook the synergies between family caregivers and adolescents in the transition period. WHAT WERE THE MAIN FINDINGS?: The levels of agreement on rating transition readiness varied from poor to fair among adolescent-caregiver dyads, and caregivers tended to underestimate adolescents' transition readiness. The findings highlighted the patient-caregiver incongruence in rating patients' transition readiness. Targeted dyadic interventions should be developed and implemented to improve patient-caregiver's transition readiness concordance, and facilitate effective communication and mutuality between patients and caregivers. REPORTING METHOD: Study methods and results reported in adherence to the STROBE checklist. PATIENT OR PUBLIC CONTRIBUTION: No patients or members of the public were involved in the study. CONTRIBUTION TO THE WIDER GLOBAL CLINICAL COMMUNITY: The main findings introduce pathways for improving transition readiness, which can enhance healthcare transition among other medical populations.

Do advanced cancer patients and their caregivers agree on preferred place of patient's death?-a prospective cohort study of patient-caregiver dyads.

BACKGROUND: Greater patient-caregiver concordance for preferred place of death can increase the chances of patients dying at their preferred place, thus improving quality of life at end-of-life (EOL). We aimed to assess changes in and predictors of patient-caregiver concordance in preference for home death at EOL during the last 3 years of life of patients with advanced cancer. METHODS: We used data from the Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS) cohort study of patients with stage IV solid cancer. We interviewed patients and their caregivers every 4 months to assess their preference for home death (for patient), and patient (symptom burden, inpatient usage, financial difficulties) and caregiver (psychosocial distress, spiritual wellbeing, competency and perceived lack of family support) characteristics. We used data from patients' last 3 years of life. We used multivariable multinomial logistic regressions to predict dyad concordance for preference for home death. RESULTS: A total of 227 patient-caregiver dyads were analyzed. More than half of the patient-caregiver dyads observations were concordant in their preference for home death (54%). Concordance for home death declined closer to death (from 68% to 44%). Concordant dyads who preferred home death were less likely to include older patients [relative risk ratio, 0.97; P=0.03]. Dyads who preferred a non-home death (hospital, hospice, nursing home, unsure or others) were more likely to include patients with greater symptom burden (1.08; P=0.007) and with spousal caregivers (2.59; P=0.050), and less likely to include caregivers with greater psychosocial distress (0.90; P=0.003) and higher spiritual wellbeing (0.92; P=0.007). CONCLUSIONS: This study provides evidence of the dynamic changes in preference for home death among patient-caregiver dyads during last 3 years of patients' life. Understanding the EOL needs of older patients, optimizing home-based symptom control and better caregiver support are recommended to increase likelihood of dyad concordance for home death.