Past trends and future projections of palliative care needs in Chile: analysis of routinely available death registry and population data.

BACKGROUND: The number of people with palliative care needs is projected to increase globally. Chile has recently introduced legislation for universal access to palliative care services for patients with severe and terminal illnesses, including non-cancer conditions. We aimed to estimate the number of people affected by serious health-related suffering and need for palliative care in Chile to 2050. METHODS: We used data on all deaths registered in Chile between 1997-2019 and population estimates for 1997-2050. We used Poisson regression to model past trends in causes of death adjusted by age, sex and population estimates, to project the number of deaths for each cause from 2021 to 2050. We applied the Lancet Commission on Palliative Care and Pain Relief weights to these projections to identify decedents and non-decedents with palliative care needs. RESULTS: Population palliative care needs in Chile are projected to increase from 117 (95% CI 114 to 120) thousand people in 2021 to 209 (95% CI 198 to 223) thousand people in 2050, a 79% increase (IRR 1.79; 95% CI 1.78-1.80). This increase will be driven by non-cancer conditions, particularly dementia (IRR 2.9, 95% CI 2.85-2.95) and cardiovascular conditions (IRR 1.86, 95% CI 1.83-1.89). By 2050, 50% of those estimated to need palliative care will be non-decedents (not expected to die within a year). CONCLUSIONS: Chile will experience a large increase in palliative care needs, particularly for people with dementia and other non-cancer conditions. Improved availability of high-quality services, expanded clinician training and new sustainable models of care are urgently required to ensure universal access to palliative care.

Experiences and Needs of Carers of Patients With Head and Neck Cancer: A Systematic Review.

PURPOSE: The needs of head and neck cancer (HNC) carers tends to be poorly addressed as most support systems are directed towards patients. This systematic review synthesises the existing qualitative evidence from carers for adult HNC patients to explore their experiences and needs as a basis to inform the initial development of an item prompt list for HNC carers for use in routine clinical practice. METHODS: Seven electronic databases were searched from their inception until November 2022, supplemented by citation chaining and snowballing. Primary qualitative or mixed-methods studies reporting the experiences of carers for HNC patients, elicited using interviews, were included. Screening and selection, data extraction and quality assessment (Critical Appraisal Skills Programme Checklist) were independently conducted by two researchers. Data were analysed using inductive thematic synthesis and confidence evaluated using GRADE CERQual. RESULTS: Thirty studies met the inclusion criteria. Two overarching themes and nine subthemes emerged: (i) the experiences of loss associated with being a carer (loss of: role and everyday routine, certainty leading to emotional distress, security as fear of recurrence prevailed, finances, intimacy and togetherness, enjoyment from social activities); and (ii) factors promoting coping and adjustment to role of carer (information, supportive mechanisms, personal attributes). CONCLUSION: New insight into the experiences of HNC carers provides the basis for item generation of a HNC carer prompt tool. IMPLICATIONS FOR CANCER SURVIVORS: With such a range of potential unmet concerns, the development of a prompt list should help to elicit these and provide additional means to targeted support.

Supportive care needs, quality of life and social support among elderly colorectal cancer patients undergoing chemotherapy: a longitudinal study.

Objective: The purpose of this study is to examine the changes in supportive care needs, quality of life and social support during different chemotherapy cycles among elderly colorectal cancer patients. Methods: This prospective longitudinal study recruited 160 elderly colorectal cancer patients using convenience sampling at a hospital in Guangxi between August 2023 and April 2024. To assess supportive care needs, quality of life, and social support, we used a short form of the Supportive Care Needs Survey (SCNS-SF34), a Functional Assessment of Cancer Therapy-colorectal (FACT-C), and a perceived social support scale (PSSS) prior to chemotherapy, as well as after the first, third, and sixth cycles. Repeated measures analysis of variance was used to validate the changes over time in supportive care needs, quality of life, and social support. Results: 155 participants completed all questionnaire sessions across the six cycles. From pre-chemotherapy until after the sixth cycle of chemotherapy, the extent of physical and daily living requirements among all respondents fluctuated between 47.23% and 88.26%, psychological needs ranged from 60.84% to 97.67%, patient care and support needs ranged from 83.75% to 99.35%, healthcare system and information needs varied from 85.98% to 99.00%, while the level of sexual needs decreased from 1.51% to 0.65%. The mean SCNS-SF34 scores for these participants ranged between 103.81 ± 2.28 and 144.10 ± 1.08. Significant increases over time were seen for all domains of SCNS-SF34 (F=126.99, 347.41, 65.00, 72.34, 160.15, p<0.001), keeping a clear upward trend, except for sexual needs(F=0.712, p=0.546). The mean FACT-T scores dropped from 68.80 ± 1.00 to 51.24 ± 1.40, while the mean PSSS scores dropped from 55.77 ± 0.83 to 43.28 ± 1.05. The scores of FACT-T and PSSS showed statistically significant differences (F=231.21, 112.28, p<0.001), maintaining clear downward trends. Conclusion: During chemotherapy, elderly colorectal cancer patients continue to require high levels of supportive care, while their quality of life and social support gradually decline. This study offers healthcare practitioners a foundational understanding to identify and address the supportive care needs of elderly colorectal cancer patients across various chemotherapy phases, which facilitates the development of tailored strategies aimed at enhancing patients' quality of life.

Analysis of Dental Prosthetic Treatment in Patients with Cancer Aged 65 Years and Older after Expanded Health Insurance Coverage: A Retrospective Clinical Study.

Background and Objectives: With increases in cancer incidence and the number of cancer survivors, the demand for cancer management is growing. However, studies on dental prosthetic treatment for patients with cancer are rare. We aim to investigate the dental prosthetic treatment in patients with cancer aged ≥65 years after expanded health insurance coverage. Materials and Methods: This retrospective study included patients who were treated with implants and removable dentures at Ulsan University Hospital in South Korea between June 2015 and June 2023. Data on age, sex, cancer location, comorbid systemic diseases, number of remaining teeth, dental prosthetic treatment history, type of dental prosthetic treatment, and insurance coverage status were extracted from patient medical records and panoramic radiographs. The influence of multiple variables on dental prosthetic treatment was analyzed using the Chi-square and Fisher's exact tests. Results: The study included 61 patients with cancer (32 men, 29 women; average age: 70.9 years). Among them, 56 (91.8%) had insurance coverage benefits, and 34 (55.7%) received treatments such as implants, removable partial dentures, or complete dentures for the first time. Treatment types included 37 (60.7%) cases of implant prostheses and 24 (39.3%) conventional removable dentures. No statistical differences were observed in the type of dental prosthetic treatment according to sex, age, cancer location, number of systemic diseases, and dental prosthetic treatment history (p > 0.05). Patients with <10 remaining teeth received treatment with conventional removable dentures, which was statistically significant (p < 0.001). Conclusions: Of the 61 patients, 56 (91.8%) received insurance benefits, and 34 (55.7%) underwent dental prosthetic treatment for the first time. Within the limitations of this retrospective study, the expanded health insurance coverage alleviated the unmet demand for dental prosthetic treatment. As cancer prevalence continues to increase, expanding customized health insurance coverage is crucial to meet this demand.

A refined ICD-10 diagnoses-based approach for retrospective analysis of potential palliative care need and coverage in claims data of deceased.

Objectives: ICD-10-based approaches often provide the basis for retrospective estimation of potential palliative care need. Applying the ICD-10-based Murtagh et al. classification from 2014 (Murtagh classification), developed using mortality data, to administrative claims data leads to inconsistencies in estimating palliative care need. The aim of the study was to refine the classification for palliative care need estimation in deceased individuals with cancer and non-cancer diagnosis. Methods: A retrospective population-based study comparing Murtagh classification to a new ICD-10-based classification (revised by expert opinion) was conducted using outpatient and inpatient claims data, including billing codes for palliative care. Palliative care need was estimated for diagnoses groups and was contrasted with palliative care utilization rates in the last year of life. Our dataset included records of 417,405 individuals who deceased in 2016-2019. Results: Out of individuals deceased in 2019 (n = 117,436), 81.4% had at least one diagnosis from the new classification, while 97.0% had at least one diagnosis from the Murtagh classification. Classification revision thus identified fewer individuals as potentially in need of palliative care. Among individuals with cancer, 70.7% (vs. 55.7% via Murtagh classification) received palliative care. In non-cancer subgroups, the utilization rate was considerably lower, with a maximum of 36.7% (vs. 33.7% via Murtagh classification) in 2019. Similar results were observed for the other years. Conclusion: Compared to the ICD10-based Murtagh classification, the revised ICD-10-based classification enables more realistic estimations if the cause of death is unavailable and reveals higher rates of palliative care coverage and differences especially in cancer versus non-cancer diseases. German Clinical Trials Register (DRKS00024133).

Understanding the treatment experiences of adults diagnosed with early-onset colorectal cancer: A qualitative study.

OBJECTIVE: Early-onset colorectal cancer (CRC) incidence in adults aged under 50 is increasing. There is a critical lack of knowledge regarding the challenges faced by early-onset CRC patients and their experiences of treatment. The aim of this study was to explore the lived experiences of individuals receiving treatment for early-onset CRC, and the resulting impact on their lives. METHODS: Semi-structured interviews of patients with early-onset CRC in the UK (n = 21) were conducted from August 2021 to March 2022. Interviews were recorded and transcribed verbatim. Data were analysed using thematic analysis. RESULTS: Results identified four key themes: (1) early-onset CRC treatment results in sudden physical, psychological and social impacts in all aspects of life; (2) early-onset CRC patients have unique supportive care needs which are not recognised in current practice; (3) there is a need for tailored information; (4) a lack of support was identified in the areas of mental health, sexual health and fertility. CONCLUSIONS: Our study highlights numerous unique issues experienced by the early-onset CRC patient group during treatment. There is a need for change in clinical practice, along with the development of international guidelines and tailored resources for both patients and healthcare professionals, in order to improve care.

Family members' conceptions of their supportive care needs across the colorectal cancer trajectory - A phenomenographic study.

AIM: To describe the variations of family members' conceptions of their supportive care needs (SCN) across the colorectal cancer (CRC) trajectory. DESIGN: A descriptive qualitative study with a phenomenographic approach. METHOD: Individual semi-structured interviews were conducted from May 2022 to October 2022 with 23 family members of persons diagnosed with colorectal cancer. The interviews were analysed using phenomenographic analysis following the Consolidated criteria for reporting qualitative research (COREQ) checklist. RESULTS: The phenomenographic analysis resulted in five categories. Not of importance describes family members' needs as unimportant due to the good prognosis and the organization of care and in relation to the needs of others. Only satisfiable by professionals describes information possessed by the healthcare professionals as key, as well as the need for professional counselling for the family members to process their emotions. Managed by themselves describes family members preferring to manage their SCN themselves by turning to the appropriate social support and/or by using coping skills. Understood retrospectively describes SCN as only understandable when things have calmed down and as requiring one's own experience to understand. Left unmet describes SCN as unnoticed by the healthcare professionals or not brought to light by the family members, or family members not knowing where to turn for support. CONCLUSION: Supportive care should involve individualized information, proactive and repeated assessments of needs across the trajectory, as well as encouragement of family members to reflect on their needs and to accept support when needed. IMPACT: There is a gap in the literature regarding family members' SCN across the CRC trajectory which this study addresses. Findings show five categories of family members' conceptions of their SCN. Those findings could serve as a basis for the development of clinical colorectal supportive care across the cancer trajectory. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Findings show that to offer family members of persons diagnosed with colorectal cancer support only at the time of diagnosis is insufficient. Instead, the healthcare team is recommended to proactively and repeatedly try to identify those in need and the characteristics of their needs. In addition, it is important to offer individualized information and strive to encourage family members to reflect on their situation and to not suppress their own needs if emerging. REPORTING METHOD: Reporting adheres to the consolidated criteria for reporting qualitative research (COREQ) checklist. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution.

[Factors associated with the care needs of the older adults based on different disability levels].

OBJECTIVE: To identify the factors associated with the care needs of the older adults aged 65-105 by age groups, and to compare these factors across different age groups. METHODS: A total of 12 244 older adults from the Chinese longitudinal healthy longevity survey (CLHLS) conducted in 2018 were included in the analyses. The participants were categorized into three age groups: young-old (aged 65-79), middle-old (aged 80-89), and oldest-old (aged 90-105). The level of disability was measured by the disability index (DI) in four dimensions, reflecting their care needs. Potential factors associated with care needs were selected based on the health ecological model (HEM), including perspectives of personal characteristics, behavioral characteristics, interpersonal network, living and working conditions, and policy environment. Multifactor analysis was performed using multinomial Logistic regression. RESULTS: Among China ' s 12 244 older adults, 43.4% had medium or high care needs. Factors for higher care needs of older adults included higher age, higher number of chronic diseases, no exercise habit, excessive sleep duration (≥9 h/d), depressive tendency, living with children or spouse, and uneducated (all P < 0.05). In addition, the young-old group who were past smokers (OR=2.009, 95% CI: 1.019-3.959), were past drinkers (OR=2.213, 95% CI: 1.141-4.291), and reported self-perceived poverty (OR=2.051, 95% CI: 1.189-3.540), had higher level of care needs. The middle-old group who were female (OR=1.373, 95% CI: 1.038-1.817), never drank alcohol (OR=1.551, 95% CI: 1.059-2.269), and were lack of medical insurance (OR=1.598, 95% CI: 1.053-2.426), and had higher level of care needs. The oldest-old group who were female (medium care needs vs. low care needs: OR=1.412, 95% CI: 1.062-1.878; high care needs vs. low care needs: OR=1.506, 95% CI: 1.137-1.993), reported self-perceived poverty (OR=2.064, 95% CI: 1.282-3.323), and were lack of medical insurance (OR=1.621, 95% CI: 1.148-2.291), and had higher level of care needs. CONCLUSION: The identical factors associated with care needs across different age groups include age, chronic disease, exercise, sleep, depression, living arrangement, and education. Smoking, alcohol consumption, and economic status are specific factors among the young-old group of the older adults, while gender and medical insurance are specific factors among the middle-old and the oldest-old group of the older adults. We recommend conducting prospective cohort studies and intervention studies among specific age groups on the above factors to provide reliable evidence for policy formulation.

Supportive care needs of adolescents and young adults 5 years after cancer: a qualitative study.

Introduction: Adolescent and young adult (AYA) survivors who have been treated for cancer during childhood and adolescence are at great risk of the physical, psychological, and social consequences of cancer and its associated treatments. However, compliance with long-term follow-up is low. One possible explanation is that follow-up care fails to meet the expectations of AYA survivors. This study explored the specific supportive care needs of AYA survivors of childhood and adolescent cancer five years post-diagnosis. Methods: Semi-structured interviews were conducted with 15 AYA aged 15 to 25 years old. Thematic analyses were conducted to establish categories of supportive care needs and classify them as being met or unmet. Results: Participants reported between 2 and 20 specific needs (M = 11), including needs concerning fertility issues and reassurance regarding relapse (each mentioned by 67% of AYA), followed by the need for locomotor care, follow-up coordination and multidisciplinary care (60% of AYA for each). Participants also reported needs regarding social relationships, administration and finance, and academic and professional domains. Most (69%) of these needs were reportedly unmet, including need of information about cancer repercussions and follow-up, support in managing fatigue and sleep problems, psychological assistance, and support from peers. Discussion: The supportive care needs are still considerable and varied in AYA survivors of childhood and adolescent cancer 5 years post-diagnosis and are largely unmet. As unmet supportive care needs highlight the gap between available care in follow-up and the real needs of AYA survivors, a better understanding of their supportive care needs and unmet needs, thanks to systematic needs assessment, would enable long-term follow-up care to be adapted, thereby improving compliance and quality of life.

From decision to reflection: understanding the experiences and unmet care needs of patients treated with immunotherapy for melanoma in the adjuvant or metastatic setting.

BACKGROUND: Despite increased use of immune checkpoint inhibitors (ICIs) in patients with advanced melanoma, little is known about patient experiences during this treatment. This study aimed to gain an in-depth understanding of experiences and unmet care needs of patients treated in the adjuvant or metastatic setting for advanced melanoma regarding their ICI treatment trajectory. METHODS: Interviews and focus groups were conducted among 35 patients treated with ICIs in the adjuvant setting for completely resected stage III (n = 14), or in the metastatic setting for irresectable stage IV (n = 21) melanoma. A thorough thematic content analysis was conducted. RESULTS: Three main themes were identified. When (1) dealing with uncertainty in the decision-making process, adjuvant patients explored the pros and cons, whereas metastatic patients considered immunotherapy their only viable option. Both groups expressed the need for additional guidance. In (2) navigating the immunotherapy course, both perceived the trajectory as intense, experienced a major impact on their and their (close) relatives' lives, and felt the need to (re)gain control. When (3) looking back on the immunotherapy experience, metastatic patients generally felt relieved, while among adjuvant patients, feelings of doubt regarding their choice for ICIs were also reported. CONCLUSIONS: ICI treatment is perceived as intensive for both patient groups, facing both comparable and distinct challenges throughout the treatment trajectory, underscoring the need for stage-specific, individualised guidance. Options regarding flexible follow-ups, low-threshold contact and psychosocial support throughout the treatment trajectory should be explored.

Supportive care needs and anxious-depressive symptoms in cancer patients: An interaction effect between emotional competence and the COVID-19 pandemic?

The main objective was to assess the link between emotional competence (EC) and adjustment outcomes such as supportive care needs (SCN) and anxious-depressive symptoms in cancer patients starting chemotherapy. The second objective was to assess the interaction effect between EC and the COVID-19 pandemic (i.e. patients included before or during the pandemic) on these outcomes. At the beginning of care, 255 patients with digestive or hematological cancer, recruited before the pandemic began (n = 156, 61.2%) or during the pandemic (n = 99, 38.8%), completed the Short Profile of Emotional Competence, the Hospital Anxiety and Depression Scale, and the Supportive Care Needs Survey Short Form. Partial correlations and multiple regressions were used. Intrapersonal EC showed negative significant correlations with psychological unmet SCN (r = -.32, p < .001), anxiety (r = -.37, p < .001), and depression (r = -.46, p < .001). Interpersonal EC showed only significant interaction effects (p < .05): it was only associated with fewer unmet physical and daily SCN (p < .002) and fewer depressive symptoms (p < .004) during pandemic. Results show significant associations between intrapersonal EC and better adjustment of cancer patients from the early stage of care. Interpersonal EC seems to be a significant resource to deal with illness only in difficult contexts such as the COVID-19 pandemic.

Emotional Distress, Cognitive Complaints, and Care Needs among Advanced Cancer Survivors Treated with Immune Checkpoint Blockade: A Mixed-Method Study.

BACKGROUND: There is a need for a better understanding of survivorship-related issues in advanced cancer survivors treated with immune checkpoint blockade (ICB). The purpose of this study was to identify survivorship-related issues, with a focus on psychological distress, cognitive complaints, physical sequelae, impact on family dynamics, and care needs in unresectable, advanced cancer survivors treated with ICB. METHODS: Semi-structured interviews and patient-reported outcome measures (PROMs) were conducted in survivors followed up at the University Hospital Brussels. We performed content analysis on the semi-structured interviews and analyzed the PROMs descriptively. RESULTS: 70 cancer survivors (71.4%) consented to participate between July 2022 and November 2023. Clinical fear of cancer recurrence (FCR) was present in 54.3% of the cancer survivors, and 18.6% had elevated cognitive complaints. We identified triggers related to clinically important psychological distress, such as immune-related adverse events, the progression/recurrence of disease, difficulties in adjusting to life after treatment, and co-existing life stressors, alongside persistent physical issues and unmet psychological and nutritional care needs. CONCLUSION: Our results indicate the existence of persistent psychological, physical, and cognitive issues, and support the need for routine screening for FCR. The identified triggers related to severe psychological distress can aid clinicians in timely referring the patient, thereby enhancing survivorship care.

Evolution of Complexity of Palliative Care Needs and Patient Profiles According to the PALCOM Scale (Part Two): Pooled Analysis of the Cohorts for the Development and Validation of the PALCOM Scale in Advanced Cancer Patients.

INTRODUCTION: Identifying the complexity of palliative care needs is a key aspect of referral to specialized multidisciplinary early palliative care (EPC) teams. The PALCOM scale is an instrument consisting of five multidimensional assessment domains developed in 2018 and validated in 2023 to identify the level of complexity in patients with advanced cancer. (1) Objectives: The main objective of this study was to determine the degree of instability (likelihood of level change or death), health resource consumption and the survival of patients according to the level of palliative complexity assigned at the baseline visit during a 6-month follow-up. (2) Method: An observational, prospective, multicenter study was conducted using pooled data from the development and validation cohort of the PALCOM scale. The main outcome variables were as follows: (a) instability ratio (IR), defined as the probability of level change or death; (b) emergency department visits; (c) days of hospitalization; (d) hospital death; (e) survival. All the variables were analyzed monthly according to the level of complexity assigned at the baseline visit. (3) Results: A total of 607 patients with advanced cancer were enrolled. According to the PALCOM scale, 20% of patients were classified as low complexity, 50% as medium and 30% as high complexity. The overall IR was 45% in the low complexity group, 68% in the medium complexity group and 78% in the high complexity group (p < 0.001). No significant differences in mean monthly emergency department visits (0.2 visits/ patient/month) were observed between the different levels of complexity. The mean number of days spent in hospital per month was 1.5 in the low complexity group, 1.8 in the medium complexity group and 3.2 in the high complexity group (p < 0.001). The likelihood of in-hospital death was significantly higher in the high complexity group (29%) compared to the medium (16%) and low (8%) complexity groups (p < 0.001). Six-month survival was significantly lower in the high complexity group (24%) compared to the medium (37%) and low (57%) complexity groups (p < 0.001). CONCLUSION: According to the PALCOM scale, more complex cases are associated with greater instability and use of hospital resources and lower survival. The data also confirm that the PALCOM scale is a consistent and useful tool for describing complexity profiles, targeting referrals to the EPC and managing the intensity of shared care.

A couple-based unmet supportive care needs intervention for colorectal cancer couples: A preliminary feasibility study.

PURPOSE: To support colorectal cancer couples cope with cancer, we developed a couple-based unmet supportive care needs intervention program guided by the Supportive Care Needs Framework and examined the feasibility, acceptability, and initial effects of the unmet supportive care needs program. METHODS: The design of a pre-and post-intervention study was conducted among Chinese colorectal cancer couples. The intervention was delivered in five sessions through in-person and telephone interventions combined. To measure program feasibility through recruitment and retention rates, and to test program acceptability through quantitative and qualitative post-intervention program assessments. The complete data (N = 20 pairs) were used to calculate effect sizes to assess the initial intervention effect. RESULTS: There was evidence of the feasibility of the intervention program in terms of recruitment (66.7%) and retention (83.3%) rates. Participants' satisfaction with the program also attested to its acceptability. The intervention (Cohen's = 0.15-0.56) had a small-moderate effect size in improving unmet supportive care needs and most cancer-adapted outcomes for colorectal cancer couples, validating the initial effect of the program. CONCLUSIONS: The unmet supportive care needs program is feasible, acceptable, and preliminarily effective in supporting Chinese colorectal cancer couples to improve unmet supportive care needs and cancer adaptability, as provided by this study.

Patient and caregiver shared experiences of pulmonary fibrosis (PF): A systematic literature review.

Pulmonary Fibrosis (PF) describes a group of lung diseases characterised by progressive scarring (fibrosis). Symptoms worsen over time and include breathlessness, tiredness, and cough, giving rise to psychological distress. Significant morbidity accompanies PF, so ensuring patients' care needs are well defined and provided for, represents an important treatment strategy. The purpose of this systematic review was to synthesise what is currently known about the psychosocial morbidity, illness experience and needs of people with pulmonary fibrosis and their informal caregivers. Eight databases (MEDLINE, EMBASE, PUBMED, Cochrane database of Systematic reviews (CDSR), Web of Science Social Sciences Citation Index, PsycINFO, PsycARTICLES and CINAHL) were used to identify studies exploring the supportive needs of adults with PF and/or their caregivers. Methodological quality was assessed using the Mixed Methods Appraisal Tool. 53 studies were included, the majority using qualitative methodology (79 %, 42/53), 6 as part of mixed methodological studies. Supportive care needs were mapped to eight domains using an a priori framework analysis. Findings highlight a lack of psychological support throughout the course of the illness, misconceptions about and barriers to, the provision of palliative care despite its potential positive impacts. Patients and caregivers express a desire for greater disease specific education and information provision throughout the illness. Trials of complex interventions are needed to address the unique set of challenges for patients and carers living with PF.

"It changes everything": Understanding how people experience the impact of living with a lower-grade glioma.

Background: Quantitative studies show people living with a lower-grade glioma (LGG) often report low health-related quality of life. However, it is unclear how this impact is experienced; resulting supportive care needs are also poorly understood. We explored how people experience the impact of living long-term with an LGG, to help identify potential supportive care needs. Methods: We conducted semi-structured interviews with a diverse group of people with LGG (n = 28) across the United Kingdom, who had completed primary treatment (male n = 16, female n = 12, mean age 54.6 years, mean time since diagnosis 8.7 years). Interviews were transcribed and inductive thematic analysis was conducted. Results: Four themes relating to the impact experiences of people with LGG were generated: "Emotional response to the diagnosis," "Living with the 'What ifs'," "Changing relationships," and "Faltering independence." These reflect participants' experiences with symptoms (eg, fatigue, seizures) and impairments (eg, motor dysfunction, cognitive deficits), and how these, in turn, drive impacts on daily living (including on work, relationships, social activities, and transport). Participants spoke about their experiences with profound emotion throughout. Conclusions: People with LGG can experience wide-ranging everyday impacts and may have extensive supportive care needs. This study highlights how this impact is experienced and what it means to people with LGG. Best practice suggestions for conducting comprehensive needs assessments tailored to those with LGG, and the development of personalized plans to meet those needs, would be a critical step to ensure that people with LGG are best supported in living with their condition.

Distinct experiences and care needs of advanced cancer patients with good ECOG performance status: a qualitative phenomenological study.

BACKGROUND: Advanced cancer patients with good Eastern Cooperative Oncology Group (ECOG) performance status (score 0-1) are underrepresented in current qualitative reports compared with their dying counterparts. AIM: To explore the experiences and care needs of advanced cancer patients with good ECOG. DESIGN: A qualitative phenomenological approach using semi-structured interview was employed. Data was analyzed using the Colaizzi's method. SETTING/PARTICIPANTS: Purposive sample of terminal solid cancer patients on palliative care aged 18-70 years with a 0-1 ECOG score were recruited from a tertiary general hospital. RESULTS: Sixteen participants were interviewed. Seven themes were generated from the transcripts, including experiencing no or mild symptoms; independence in self-care, decision-making, and financial capacity; prioritization of cancer growth suppression over symptom management; financial concerns; hope for prognosis and life; reluctance to discuss death and after-death arrangements; and use of complementary and alternative medicine (CAM) and religious coping. CONCLUSIONS: Advanced cancer patients with good ECOG have distinct experiences and care needs from their dying counterparts. They tend to experience no or mild symptoms, demonstrate a strong sense of independence, and prioritize cancer suppression over symptom management. Financial concerns were common and impact their care-related decision-making. Though being hopeful for their prognosis and life, many are reluctant to discuss death and after-death arrangements. Many Chinese patients use herbal medicine as a CAM modality but need improved awareness of and accessibility to treatment options. Healthcare professionals and policy-makers should recognize their unique experiences and needs when tailoring care strategies and policies.

Unmet supportive care needs among cancer patients: exploring cancer entity-specific needs and associated factors.

PURPOSE: Recognizing unmet care needs among cancer patients is crucial for improving a person-centered and tailored approach to survivorship care. This study aimed to explore the prevalence of unmet supportive care needs, pinpointing entity-specific areas of burden, and to identify factors associated with unmet needs within a diverse sample of cancer patients. METHODS: In this cross-sectional sub-study of a large multicenter study, 944 adult cancer patients reported supportive care needs via the well-validated SCNS. Most frequent diagnoses included breast (n = 276), prostate (n = 237), hematological (n = 90) and gynecological cancer (n = 74), which were analyzed for entity-specific care needs. RESULTS: Across most cancer entities, health system and information, and psychological needs were most commonly reported, with fear of the cancer spreading and information regarding cancer control/diminishment ranking as the most prevalent individual concerns. Notable differences in entity-specific needs emerged for gynecological cancer patients, who exhibited more psychological (p = 0.007, OR = 2.01) and physical needs (p = 0.005, OR = 2.02), and prostate cancer patients, who showed higher sexuality needs (p < 0.001, OR = 2.95) but fewer psychological (p < 0.001, OR = 0.55), physical (p < 0.001, OR = 0.31) and patient care needs (p = 0.006, OR = 0.62). Non-distressed participants had fewer supportive care needs in each domain (all p < 0.001). Patients with functional impairments and female respondents reported increased unmet needs across most domains. CONCLUSION: The high prevalence of patients feeling inadequately informed about their disease and care aspects, particularly among those with functional impairments, reflects a key challenge in the healthcare system. Specific interventions and improvements in patient-doctor communication are essential to address cancer entity-specific care needs.

Palliative care needs of people and/or their families with serious and/or chronic health conditions in low- or middle-income country (LMIC) humanitarian settings-a systematic scoping review protocol.

BACKGROUND: Palliative care in low- or middle-income country (LMIC) humanitarian settings is a new area, experiencing a degree of increased momentum over recent years. The review contributes to this growing body of knowledge, in addition to identifying gaps for future research. The overall aim is to systematically explore the evidence on palliative care needs of patients and/or their families in LMIC humanitarian settings. METHODS: Arksey and O'Malley's (Int J Soc Res Methodol. 8:19-32, 2005) scoping review framework forms the basis of the study design, following further guidance from Levac et al. (Implement Sci 5:1-9, 2010), the Joanna Briggs Institute (JBI) Peters et al. (JBI Reviewer's Manual JBI: 406-452, 2020), and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) from Tricco et al. (Ann Intern Med 169:467-73, 2018). This incorporates a five-step approach and the population, concept, and context (PCC) framework. Using already identified key words/terms, searches for both published research and gray literature from January 2012 to October 2022 will be undertaken using databases (likely to include Cumulative Index of Nursing and Allied Health (CINAHL), MEDLINE, Embase, Global Health, Scopus, Applied Social Science Index and Abstracts (ASSIA), Web of Science, Policy Commons, JSTOR, Library Network International Monetary Fund and World Bank, Google Advanced Search, and Google Scholar) in addition to selected pre-print sites and websites. Data selection will be undertaken based on the inclusion and exclusion criteria and will be reviewed at each stage by two reviewers, with a third to resolve any differences. Extracted data will be charted in a table. Ethical approval is not required for this review. DISCUSSION: Findings will be presented in tables and diagrams/charts, followed by a narrative description. The review will run from late October 2022 to early 2023. This is the first systematic scoping review specifically exploring the palliative care needs of patients and/or their family, in LMIC humanitarian settings. The paper from the review findings will be submitted for publication in 2023.