Life Care Research Articles

Educational needs of direct care workers in long-term care facilities providing mealtime assistance to older adults with dementia

BackgroundOlder adults with dementia in long-term care facilities often encounter challenges in self-feeding owing to cognitive and physical impairments. Although direct care workers play a crucial role in facilitating mealtime activities, they lack adequate and specific training. To develop an effective educational training program for this purpose, it is essential to understand the educational needs of direct care workers providing meal assistance. Therefore, this study aimed to identify the educational needs prioritized by direct care workers in long-term care facilities, regarding providing eating assistance to older adults with dementia.MethodsAdopting a mixed-methods approach, this study combined quantitative analysis using Borich’s needs assessment and locus for focus models with qualitative insights from focus group interviews. Participants comprised 174 direct care workers and five nursing managers from various long-term care facilities in South Korea.ResultsThis study identified four main educational priorities: enhancing knowledge regarding swallowing function, understanding institutional support mechanisms, applying multisensory stimulation techniques, and addressing food forgetfulness in older adults with dementia. These findings were aligned with the qualitative data that emphasized the necessity of training in these specific areas to improve the quality of meal assistance provided to this vulnerable population.ConclusionThe findings underscore the critical need for focused educational programs that equip direct care workers with the skills and knowledge necessary to effectively assist older adults with dementia during mealtime. This study advocates the implementation of continuous education and training initiatives led by nursing management to improve the meal assistance environment for older adults with dementia, thereby enhancing their overall care and quality of life.

European Society of Intensive Care Medicine guidelines on end of life and palliative care in the intensive care unit.

The European Society of Intensive Care Medicine (ESICM) has developed evidence-based recommendations and expert opinions about end-of-life (EoL) and palliative care for critically ill adults to optimize patient-centered care, improving outcomes of relatives, and supporting intensive care unit (ICU) staff in delivering compassionate and effective EoL and palliative care. An international multi-disciplinary panel of clinical experts, a methodologist, and representatives of patients and families examined key domains, including variability across countries, decision-making, palliative-care integration, communication, family-centered care, and conflict management. Eight evidence-based recommendations (6 of low level of evidence and 2 of high level of evidence) and 19 expert opinions were presented. EoL legislation and the importance of respecting the autonomy and preferences of patients were given close attention. Differences in EoL care depending on country income and healthcare provision were considered. Structured EoL decision-making strategies are recommended to improve outcomes of patients and relatives, as well as staff satisfaction and mental health. Early integration of palliative care and the use of standardized tools for symptom assessment are suggested for patients at high risk of dying. Communication training for ICU staff and printed communication aids for families are advocated to improve outcomes and satisfaction. Methods for enhancing family-centeredness of care include structured family conferences and culturally sensitive interventions. Conflict-management protocols and strategies to prevent burnout among healthcare professionals are also considered. The work done to develop these guidelines highlights many areas requiring further research.

Caring for Hindu patients at the end-of-life: A narrative review.

This paper reviews the existing literature to identify specific challenges that may arise in the context of providing palliative and end-of-life (EOL) care for Hindu patients in the physical, psychological, and spiritual domains. We offer practical strategies where appropriate to mitigate some of these challenges. We review how the Hindu faith impacts EOL decision-making, including the role of the family in decision-making, completion of advance directives, pain management, and decisions around artificial nutrition and hydration (ANH) and cardiopulmonary resuscitation (CPR). The PubMed, MEDLINE Complete, Cochrane, and Embase databases were searched for articles using the search strings combinations of keywords such as Palliative care, Hindu, Hinduism, End of Life Care, India, Spirituality, and South Asian. Once inclusion criteria were applied, 40 manuscripts were eligible for review. Our results are organized into the following 4 sections - how Hindu religious or spiritual beliefs intersect with the physical, psychological, and spiritual domains: and decision-making at the EOL. Hindu beliefs, in particular the role of karma, were shown to impact decision-making regarding pain management, ANH and CPR, and advance directive completion. The complexity of Hindu thought leaves a significant role for interpretation and flexibility for individual factors in decision-making at the EOL.

A Study of Intergenerational Support and the Health Relationship of the Elderly Population: Evidence from CHARLS

BackgroundCurrently, the relationship of intergenerational support on health is mainly focused on physical health and mental health, and there are fewer studies on the relationship of intergenerational support on self-assessed health. Therefore, this paper discusses and analyzes the possible relationship of intergenerational support on the self-assessed health of older adults in terms of the bidirectional support of various forms of support between older parents and their adult children in terms of financial, living, and emotional support(CHARLS). MethodsThis study was conducted on participants aged 65 and over, using the CHARLS 2020 survey, involving 6359 (3069 men and 3290 women) elderly people.Health was measured in three dimensions: physical, psychological, and self-assessment; intergenerational support was measured in three dimensions: financial, life care, and spiritual comfort; and regression models analyzed the relationship between intergenerational support and the health of the elderly population. ResultsChildren's life care support ( p<0.05) had a significant positive association on physiological health, but a significant negative association on the elderly's psychological and self-assessed health, children's spiritual comfort support (p<0.05) had a positive association on the elderly's physiological health, psychological health, and self-assessed health, and children's financial support (p<0.05) was positively correlated with the elderly's psychological, and children's financial support had a positive association, but not related to physical health and self-rated health of the elderly. ConclusionsThe relationship between intergenerational support and the health of the older population is complex, with life-care support significantly contributing to physical health but negatively affecting mental health and self-assessed health; spiritual comfort support positively affecting physical, mental and self-assessed health; and financial support having a primarily positive effect on mental health. Therefore, children should fully respect and utilise the ‘autonomy’ of the elderly when providing intergenerational support to the elderly in their families. It is also important to improve intergenerational communication abilities and skills, which will help to better understand and fulfil the needs of older people, thereby promoting their physical and mental health.

The Crucial Role of Polysomnography and Capnography in Children with Duchenne Muscular Dystrophy

PurposeDuchenne muscular dystrophy (DMD) is a severe, progressive condition characterized by muscle degeneration and weakness, significantly affecting respiratory function. This study aimed to evaluate the presence of sleep-disordered breathing (SDB) in children with DMD and investigate the relationships between sleep and respiratory function using spirometry, sniff nasal inspiratory pressure (SNIP), and polysomnography (PSG) along with capnography. Research QuestionCan low SNIP be a guide for detecting respiratory muscle involvement early and determining the right time to perform early PSG and capnography in DMD? Study DesignProspective, observational, cross-sectional study. MethodsThis study included DMD patients aged < 18 years. Pulmonary function tests were conducted using spirometry and SNIP, and maximum inspiratory and expiratory pressure were measured. PSG and capnography were performed within two weeks after the pulmonary function tests, and their relationships with each other were investigated. ResultsThe study included 44 children. Obstructive sleep apnea syndrome (OSAS) was present in 70.5% of patients, while nocturnal hypoventilation was observed in 4.5%. SNIP values were significantly lower in patients with moderate-to-severe OSAS than in those without OSAS. An SNIP value below 40 cm H2O was associated with a 92.8% prevalence of OSAS. ConclusionSNIP is a valuable, noninvasive marker for the early detection of respiratory muscle involvement and SDB in patients with DMD. This study highlights the need for early and regular respiratory monitoring in children with DMD to enhance care and quality of life.

Weekly touch calls with high-risk cohort of patients with commercial Medicare Advantage to reduce avoidable hospital admissions.

282 Background: Patients who have been diagnosed with cancer have an increased risk of complications and potential hospitalization instances. Those in more advanced age groups have an additional risk, especially those of the age group of 65 and higher. Avoidable hospitalizations increase the total cost of care and decrease patient quality of life during treatment. Methods: To reduce potentially avoidable hospital admissions, patients enrolled in a commercial insurance contract were reviewed weekly for a high-risk potential. Criteria for high-risk inclusion included: Any patient &gt;75 years of age receiving treatment; Any patient receiving chemotherapy/radiation combination therapy; Any patient with the following diagnosis: Metastatic lung cancer, Metastatic pancreatic cancer, Multiple myeloma, Breast cancer, Prostate cancer with multiple HCC; Any patient receiving: Cisplatin, Adriamycin, Taxanes, Ifosfimide, Doxorubicin, or Carbo with AUC 4 or greater; Any patient that has had one visit to ER/hospital during the program During the recording period, the high-risk list of patients was reviewed weekly. Before the weekend, each patient identified was contacted by phone by a registered nurse for a weekly “touch call” to address side effects, treatment questions, complications, or concerns. Patients were reminded to contact the practice first when a non-life-threatening concern occurs. Results: The program began on April 1, 2020, with a baseline admission rate of 1.8%. At the conclusion of the program on March 31st, 2023, this cohort of patients had a 53.1% reduction in admission rates from their baseline. Additionally, the reimbursement PPPM was under target yearly, concluding at $65.64, $14.46 below the target amount of $80. The cohort consisted of a range of 36-75 patients per quarter, program total of 185 enrolled patients. Conclusions: Identifying potentially high-risk patients and conducting weekly, personalized calls before the weekend reduced the overall avoidable admission rate. Timely identification and support for high-risk patients reduces the total cost of care and potentially increases patient care quality during treatment. Period Practice Inpatient Admits per 1000 Benchmark Target Target Difference Targeted Reimbursement PPPM Actual Reimbursement PPPM Reimbursement Difference 2020 Q1 1.8% 754 378 $80 2020 Q4 -17.9% 680 233 $80 $75.56 -$4.44 2021 Q4 -31.5% 622 3 $80 $66.66 -$13.34 2022 Q4 -51.3% 602 -235 $80 $65.64 -$14.46

Urinary Continence Restoration Through an Endourethral Device: A 3-Month Pilot Study on 10 Patients.

Background: Stress urinary incontinence (SUI) is a widespread and frustrating condition that affects millions of people worldwide, with severe consequences on patients' quality of life and health care systems' costs. Currently, the most severe cases of SUI are treated using implanted (and rather invasive) extraurethral artificial sphincters. The authors propose an innovative, minimally invasive endourethral device for the treatment of SUI. Methods: Ten patients with SUI were enrolled in three Italian centers and underwent device implantation. After 10, 30, 60, and 90 days, correct device position was confirmed by ultrasonography. Improvements in continence and quality of life were evaluated through a 24-hour pad-test, an International Consultation on Incontinence Questionnarie-Short Form (ICI-Q) and a custom checklist. The device was explanted after 90 days. Results: The proposed device was successfully implanted and explanted in 8 out of 10 patients. The results of the pad-test, ICI-Q, and custom checklist demonstrated remarkable improvements in continence (median improvement: 82% with respect to the initial condition) and quality of life (mean reduction of the impact of urine losses on the quality of life: 61%). No major pain or discomfort was reported. Conclusions: The results demonstrate the efficacy of the proposed endourethral artificial sphincter in addressing SUI. The proposed device was successfully implanted and explanted in a short time (∼10 minutes) without intrinsic side effects and without triggering pain or discomfort.

Systemic anti-cancer treatment and healthcare utilization at end of life: A SEER Medicare analysis.

276 Background: Use of chemotherapy at end-of-life (EOL) is associated with adverse quality of life, higher costs, increased hospitalizations (HL), emergency department (ED), and intensive care unit (ICU) utilization and lower hospice (HP) use. While EOL chemotherapy use has declined in recent years, EOL immunotherapy use has increased. It is unknown how the trend of increased immunotherapy use at the EOL is associated with healthcare utilization. We evaluated the association between types of systemic anticancer therapy (SACT) within 30 days of death and hospitalizations, emergency department, intensive care unit, and hospice use. Methods: We identified patients in the SEER-Medicare database with a diagnosis date of 2005-2019 and death date of 2015-2020 with the following cancers: breast, colorectal, lung, prostate, bladder, cervix, kidney, leukemia, liver, lymphoma, myeloma, ovarian, pancreas, skin, and uterine. EOL SACT was defined as SACT received within 30 days of death, categorized as combination chemo-immunotherapy, immunotherapy, and chemotherapy. We analyzed associations between EOL SACT use (overall and by type), and healthcare utilization in the last 30-days of life (ED, HL, ICU, and HP) with chi-square tests and multivariable regression, controlling for sociodemographic and cancer covariates. Results: Of 499,607 beneficiaries, 37,595 (7.5%) received SACT within 30 days of death. Compared to no EOL SACT, any SACT use was associated with higher ED [75.5% vs 50.8%], HL [71.0% vs 48.7%] and ICU (35.7% vs 23.3%) and lower HP enrollment (46.1% vs 59.3%) and number of days in HP (2.4 vs 6.5 days) (all p &lt;0.001, table). After adjusting for covariates, patients with EOL SACT were more likely to have HL (odds ratio [OR], 2.43; 95% confidence interval [CI], 2.38-2.49), ED visits (OR, 2.87; 95% CI, 2.80-2.94), and ICU stay (OR, 1.66; 95% CI, 1.62-1.70), and less likely to receive HP care (OR, 0.62; 95% CI: 0.61-0.64)-compared to no SACT use; All subtypes of EOL SACT were significantly more likely to have ED, HL, and ICU use and less likely to use HP than those with No EOL SACT (p-values &lt;0.001). Conclusions: All types SACT within 30 days of death were associated increased healthcare use compared with no EOL SACT, with combination chemo-immunotherapy having the highest ED, hospitalizations and ICU use and lowest hospice enrollment and duration. Healthcare utilization. Combination Chemo-Immunotherapy(n=5,171) Immunotherapy(n = 11,397) Chemotherapy(n = 21,027) Any SACT(n = 37,595) No SACT(n = 462,012) P -value* ED Visit (%) 76.9 73.7 76.1 75.5 50.8 &lt;.001 Hospitalizations (%) 72.5 67.7 72.5 71.0 48.7 &lt;.001 ICU use (%) 40.4 32.1 36.5 35.7 23.3 &lt;.001 Hospice use (%) 38.8 50.2 45.8 46.1 59.3 &lt;.001 Number of days Hospice (Days, Mean ± standard deviation) 1.7 ± 3.0 2.7 ± 3.9 2.4 ± 3.9 2.4 ± 3.8 6.5 ± 7.8 &lt;.001 *P-values for statistical difference between each individual SACT subgroup and No SACT and Any SACT and No SACT group.

Understanding the relative impact of ethnicity and sex on patient experience in cancer care.

247 Background: Patient experience is a key indicator of healthcare quality and outcomes. Research suggests that patient ethnicity and sex have a significant impact on patient experience scores. Therefore, our hospital created a process for continuously monitoring patient experience scores stratified by patient demographic data. In 2021, this process caught what appeared to be a significant drop in some areas of patient experience for non-white female inpatients. This drop prompted an investigation that attempted to better understand the relative impact of ethnicity and sex on patient experience at our hospital. Methods: We conducted a cross-sectional study using 13,560 Press Ganey inpatient experience surveys collected from 11,435 unique patients between 2021 and 2023 at Memorial Sloan Kettering Cancer Center. This investigation analyzed the responses to “likelihood of recommending this hospital to others” using a ordinal logistic regression model including patient ethnicity, sex, language, age, expected mortality on admission, admitting department, insurance, marital status, and length of stay observed to expected ratio. Results: Asian (odds ratio [OR] 0.51, 95% confidence interval [CI] (-0.86,-0.47), p=1.98e-11), female (odds ratio [OR] 0.76, 95% confidence interval [CI] (-0.38,-0.15), p=2.76e-06), and patients admitted to emergency departments female (odds ratio [OR] 0.59, 95% confidence interval [CI] (-0.73,-0.30), p=1.65e-06) reported lower scores than white, male, and patients admitted to medicine. Differences associated with marital status, patient insurance, and patient primary language were insignificant. The largest impact on patient experience was the patient’s expected mortality (odds ratio [OR] 0.30, 95% confidence interval [CI] (-2.20,-0.19), p=1.98e-02). Patients with higher expected mortality were much more likely to give low scores. Non-white patients were also more likely to have high expected mortality when compared to their white counterparts (p = 1.90e-24). Conclusions: Our study suggests that while a patient’s expected mortality on admission has the largest impact on patient experience scores. There are also significant differences in patient experience scores based on ethnicity and sex, but they are relatively small in magnitude. The data suggests that focusing on the intersection of high expected mortality and female patients could be an effective method for improving healthcare quality and outcomes. We recommend additional exploration of end of life care and its interactions with patient experience to better understand optimal methods and times for process improvement projects.

Early palliative care and its impact on end of life care.

The impacts of early palliative care for patients with advanced cancer are well described. This has led to endorsement of early palliative care, alongside cancer treatment, by leading cancer organisations. The aim of this review is to consider how best to adopt and integrate the learning from studies of early palliative care into an effective, sustainable service that is offered as part of routine cancer care. 'Timely', 'targeted' and 'precision' approaches have been proposed to ensure that limited palliative care resources are available to those who are most likely to benefit. Triage and referral based on individual patients' needs has been shown to be both efficient and effective. Standardised referral criteria and the use of tools to assess complexity may support equitable service development. A specialist multidisciplinary approach is a common factor underpinning successful integration between palliative care and oncology but does not negate the importance patient-centred considerations such as advance care planning, which can be facilitated by non-specialist teams. The challenge is no longer whether early palliative care should be provided, but how. Evidence-based strategies about how best to implement early palliative care are needed to inform appropriate resourcing, funding, and delivery.

Palliative and End of Life Care: An Important Component of Supportive Oncology.

Palliative care, an integral component of supportive oncology, enhances the quality of life for patients living with cancer. Whilst palliative care has historically been synonymous with the provision of care at the end of life, it is increasingly playing a role earlier in a patient's cancer journey; frequently in conjunction with administration of anticancer treatment. Although early integration has been shown to improve patient outcomes, service development remains in its infancy and consideration of challenges bears relevance. Addressing issues pertaining to resource allocation in addition to adequate training of staff will aid to ensure the provision of care that aligns with the goals and priorities of patients. This review presents the role of early palliative care within the realm of supportive oncology with respect to the evidence of benefit and ethical, clinical and practical considerations. Relevant papers have been chosen for inclusion on the basis of clinical relevance, timeliness and relevance to cancer patients and clinical teams involved in their care.

Evaluation of Caru Programme: A National Programme Supporting Palliative, End of Life and Bereavement Care in Nursing Homes in Ireland

Abstract Background The aim of the interim evaluation report is to provide the Caru Programme team with information on the impact of the Programme to date and to highlight the outcomes and challenges, whilst reiterating the key aims and objectives of the Programme and the overall evaluation. Methods The evaluation utilities’ a combination of quantitative and qualitative methodologies. A pre-post design of baseline, mid-line and end-line primary data collection is used to measure the overall impact of the programme. Secondary data analysis of participant feedback, workshop evaluations and attendance was completed under the RE-AIM (Reach, Effectiveness, Adoption, Implementation, Maintenance) framework. Results The education sessions provided were highly valued, with the majority of participants indicating an increase in baseline knowledge after attending a session. There were very high levels of positive experience with 80-99% of participants strongly endorsing the activities and recommending the programme. Participants who attended the Project ECHO and the QI workshops, indicated an intention to change practice; however, at this stage of the evaluation, there is a lack of specific details on what practice or change would be introduced, or indeed, its timeline. This will be measured in the next phase of the evaluation. Conclusion Caru is an innovative continuous learning programme supporting nursing home staff in the delivery of palliative, end-of-life, and bereavement care to residents. The learning components are delivered using a range of approaches, Webinars, Project ECHO online learning, Regional Networks, Quality Improvement Workshops. The interim evaluation report outlines the outcomes from Phase I and the first year of the programme’s delivery. It provides insights into its impact, outcomes, and challenges as well as providing a basis for the next phase of the evaluation. This interim evaluation lays the groundwork for a comprehensive understanding of the Caru Programme model and impact and provides valuable insights into its effectiveness.

Preventing Emergency Department Visits: Success Of A Community Dementia Care Model

Abstract Background Advanced dementia care in the community is an extremely complex task. NICE guidelines 2021 suggested that a gap in care was evident bridging between clinic attendance and end of life care. Secondary to a required need- a new advanced dementia care model was created in 2021.This was co-developed by an ANP with a specialist interest in gerontology, an integrated care team for older persons (ICPOP) consultant and palliative care in the community. Joint governance remains to this day. My aim is to review unexpected emergency department (ED) attendances of patients accepted to this pathway. Methods Patient records were reviewed of all cases accepted for review and managed under this model of care, time frame Jan 2023- May-2024. All patients &amp;gt; 65. Outcomes of management interventions were assessed. Those found to have an ED attendance during their time engaging with this model of care had closer review of their notes to assess reason why. Results 81 patients. Of which 75% were female. Average age – 89. Of these 48% died at home and are 37% still alive. Of the 81 patients only 5 (6%) had ED attendances. Of these 5 patients - 3 had unexpected traumatic falls- 2 resulting in hip fracture and 1 in humeral fracture. 2 were admitted with worsening delirium. Conclusion The advanced dementia care model has proved very successful in preventing ED attendances prior to direct end of life care engagement. Of those who were admitted – fractures appropriately warrant admission and the remaining 2 cases, had families who were resistant to accepting overall aims of treatment. This interdisciplinary model of care saves bed days. Expanding this care model further to ensure appropriate management of complex dementia cases is maintained in the community would further reduce hospital overcrowding and grant many patient and family wishes.

An Examination of EOL Trajectories and Audit of EOL Documentation In Patients Admitted Under the Department for Older Persons Services

Abstract Background End of Life Care is a core element of care provided in acute hospitals, with 44% of Irish deaths taking place in the hospital setting. Our audit looks at the quality of documentation around end of life for older patients and looks to characterize these hospitalized patients’ terminal life stages. Methods Inclusion criteria were patients over the age of 65 who died under the care of the Department for Older Persons Services in 2023 utilizing a retrospective chart review. The Oxford Audit Assessment Tool for Care of the Dying was used to evaluate end of life documentation for patients recognized as dying in the acute hospital setting using a 1–5-point scale. The hospital courses of patients who died were characterized along one of six in-hospital courses: (1) acutely unwell, (2) end stage organ failure, (3) dwindling trajectory, (4) unexpected cardiac arrest, (5) admission with known specialist palliative care needs, and (6) combination of medical complexity and high dependency. Data points included Clinical Frailty Score and NecPal Score, as well as length of hospital stay, length of dying and specialist palliative care input. Results Greater than 90% of patients under the Department for Older Persons service had satisfactory, good or excellent documentation around end-of-life care. One-third of patients who died under the service were acutely unwell, one-fifth of the patients who died in hospital followed a dwindling trajectory, and 15% of patients were admitted with known indication and need for specialist palliative care. Approximately 10% of patients who died suffered an unexpected cardiac arrest. Conclusion Overall, documentation at end of life was quite good and specialist palliative care services were frequently involved. Older patients frequently experience a complex interplay of high dependency, medical complexity and palliative care needs at end of life, highlighting the need for skilled serious illness communication.

End Of Life Care in Nursing Home Residents Supported Through a Nursing Home Specialist Liaison Service

Abstract Background Advance Care Planning (ACP) is a crucial aspect of ensuring that nursing home residents receive care aligned with their preferences and values, especially as they approach the end of life. Supportive end of life care planning involves discussion with the person and/or their support person, symptom management and multidisciplinary collaboration. Evidence shows that even where an ACP has been recorded there can be significant barriers to enabling end of life care in the nursing home. We examined the role of a nursing home specialist liaison team in supporting implementation of ACPs towards end of life. Methods Retrospective analysis of medical and nursing care records from deceased residents referred to the liaison service in 2023 across four nursing homes in the hospital catchment was examined. Data included recording and/or reviewing of ACP at time of liaison consultation, anticipatory medication prescribing, cause and location of death. Results 41 resident reviews conducted by Registered Advanced Nurse Practitioner and/or Consultant Geriatrician. 16 (39%) of residents had an ACP in place at the time of initial review. 18 (26%) residents had anticipatory medications prescribed prior to liaison service consultation. Following consultation ACP documentation in residents increased to n=40 (97%). A further 11 (26%) residents were charted anticipatory medications at time of review as they were actively dying. Five (12%) residents required referral to specialist palliative care services for complex symptom management. All 41 residents passed away in the nursing home. Cardiac related issue was documented in 63% of reviews as cause of death. Conclusion Documentation of ACPs was low in this cohort of nursing home residents towards end of life. Input from the nursing home liaison service supported resident’s end of life care through consultation, support with ACP and anticipatory medication prescribing.

Mindfulness to enhance quality of life and support advance care planning: a pilot randomized controlled trial for adults with advanced cancer and their family caregivers

BackgroundPatients with advanced cancer and family caregivers often use avoidant coping strategies, such as delaying advance care planning discussions, which contribute to deterioration in their quality of life. Mindfulness-based interventions have shown promise in improving quality of life in this population but have rarely been applied to advance care planning. This pilot trial examined the preliminary efficacy of a group-based Mindfulness to Enhance Quality of Life and Support Advance Care Planning (MEANING) intervention for patient-caregiver dyads coping with advanced cancer. Primary outcomes were patient and caregiver quality of life or well-being, and secondary outcomes included patient advanced care planning engagement (self-efficacy and readiness) and other psychological and symptom outcomes.MethodsIn this pilot trial, dyads coping with advanced cancer were recruited from five oncology clinics in the midwestern U.S. and randomized to six weekly group sessions of a mindfulness intervention (n = 33 dyads) or usual care (n = 22 dyads). Outcomes were assessed via surveys at baseline, post-intervention, and 1 month post-intervention. All available data were included in the multilevel models assessing intervention efficacy.ResultsPatients in the MEANING condition experienced significant increases in existential well-being and self-efficacy for advance care planning across follow-ups, whereas usual care patients did not. Other group differences in outcomes were not statistically significant. These outcomes included other facets of patient well-being, caregiver quality of life, patient readiness for advance care planning, caregiver burden, and patient and caregiver depressive symptoms, anxiety, sleep disturbance, cognitive avoidance, and peaceful acceptance of cancer. However, only MEANING patients showed moderate increases in psychological well-being across follow-ups, and MEANING caregivers showed moderate increases in quality of life at 1-month follow-up. Certain psychological outcomes, such as caregiver burden at 1-month follow-up, also showed moderate improvement in the MEANING condition. Patients in both conditions reported small to moderate increases in readiness to engage in advance care planning.ConclusionsA mindfulness-based intervention showed promise in improving quality-of-life and advance care planning outcomes in patients and caregivers coping with advanced cancer and warrants further testing.Trial RegistrationClinicalTrials.gov NCT03257007. Registered 22 August 2017, https://clinicaltrials.gov/ct2/show/NCT03257007.

Lichen Sclerosus is a high-cost diagnosis, compounded by comorbid conditions

Introduction and Objective: In the past decade, there have been significant advancements in understanding the etiology, molecular mechanisms, and best treatment options for lichen sclerosus (LS). However, to date, there is a lack of published data on the costs of care, associated comorbidities, and quality of life related to the condition. Therefore, this study aims to investigate the global costs associated with the treatment of LS using a contained insurance dataset. Methods: Deidentified 12-month data from 2022 to 2023 for a northeastern private insurer of teachers and municipal workers was queried to analyze costs associated with a diagnosis of LS (ICD-10 code L90.0). Comorbidities were also queried. Descriptive statistics were utilized to describe the population’s expenditures. Johns Hopkins Adjusted Clinical Groups (ACG) risk assessment was utilized to determine future costs. Z-tests were utilized to determine the differences in rates of comorbidities, and T-tests for differences in cost. Results: The database included all 4,306 members. Average annual cost per member was $9,280, average age was 35.5 years, behavioral health prevalence was 26%, and 53% were female. Cost for members with a behavioral health condition was $18,125 (2.0-fold) and $6,219 average cost for members without (0.7-fold). LS was present in 161 (3.7%) members, with average age of 42.0, prevalence of behavioral health 37%, and 62% were female. The presence of lichen sclerosus was associated with a 3.5-fold increase in average cost per member ($32,437 annually). For those with LS and a behavioral health condition, cost was $53,539 (5.8-fold average per member) compared to $19,901 (2.1-fold average plan cost) for those with LS and no BH condition. Median cost for those with LS was $8,755 compared to $2,056 for the entire cohort which was a significant difference (P < 0.0001). Incidence of behavioral health conditions, low back pain, obesity, chronic obstructive pulmonary disease, hyperlipidemia and hypertension were increased in the LS group versus the plan population (P < 0.01). Pharmaceutical expenditure for those with LS was a median of $267.58 compared to $94.80 average for the entire cohort (P < 0.0001). Conclusions: The presence of LS in this privately insured population significantly raises costs, exacerbated by elevated rates of mental health and other comorbidities, highlighting the need for comprehensive care addressing these complexities to improve health outcomes and reduce overall expenses.

Impact of Social Vulnerability, Race, and Urbanicity on Early Nutritional Outcomes in Patients With Cleft Palate.

Patients with cleft palate experience early feeding difficulties, resulting in increased hospital utilization due to poor nutritional status. Sociodemographic factors may impact access and outcomes for cleft patients. This study investigates the association of social vulnerability, race, and urbanicity on birth encounter metrics and failure to thrive (FTT) rates for patients with cleft palate. Retrospective data from 2013 to 2023 was queried from Cosmos, a national deidentified database from Epic electronic health record. Birth metrics, the prevalence of FTT, and MyChart activation rates were compared across sociodemographic cohorts based on (1) social vulnerability index (SVI) quartiles, (2) patient race, and (3) USDA Rural-Urban Commuting Area (RUCA) codes using χ2 or Fisher exact tests. There were 92,437 patients diagnosed with cleft palate. Birth weight was lower in socially vulnerable and Black patients (SVI 75%: 101.50±1.57oz; SVI 25%: 106.40±1.85oz; Black: 95.3±2.63oz; White: 104.90±1.02oz; Other: 104.80±2.09oz), and length of stay was longer (SVI 75%: 21±2.39d; SVI 25%: 15±2.18d; Black: 22±4d). FTT related admissions increased with SVI quartile (Q25: 0.19%; Q25-50; 0.29%, Q50-75: 0.34%; Q75: 0.47%; P<0.001). An opposite trend was observed for MyChart activation rates (P<0.001). High SVI and Black patients are susceptible to unfavorable nutritional outcomes. Access disparities, such as direct-to-provider communication systems (ie, MyChart), may contribute. Awareness of social identities, geography, and community may assist in providing individualized care in early life.

“There is a life before and after cancer”: experiences of resuming life and unmet care needs in stage I and II melanoma survivors

Although the largest increase in melanoma incidence is observed for localised melanoma, little research has been done on its impact. Despite favourable prognoses and relatively short treatment trajectories, diagnosis and treatment may significantly impact life post-treatment. Therefore, the aim of this study was to gain an in-depth understanding of stage I and II melanoma survivors’ experiences resuming life after treatment and their associated survivorship care (SSC) needs. A qualitative focus group study was conducted with 18 stage I or II melanoma survivors, divided over three focus groups with 6 survivors each. Transcripts were analysed through thorough thematic content analysis, using multiple phases of coding. In resuming life, survivors experienced profound initial impacts of disease and treatment, fed by a perceived lack of knowledge and underestimation of melanoma. They faced unexpected physical and emotional effects post-surgery, experiencing mixed feelings from relief to fear and uncertainty. Survivors felt misunderstood, had to adjust their lives, and managed personal and external expectations while experiencing a positive shift in life perspective, leading to a notable difference in life before and after cancer. In terms of SSC needs, survivors stressed the need for tailored information, accessible resources, patient-centered follow-up, and supportive care addressing the total impact of disease and treatment. These findings highlight the importance of improving melanoma awareness and providing holistic SSC not only to advanced, but also to localised melanoma survivors. A tailored survivorship care plan could facilitate access to information and supportive care, helping patients resume their lives.

Determinants of physical activity commitment in adolescents and young adults with cancer: sociological protocol for a hospital-based mixed methods study (ETAPE-AJA)

IntroductionAdolescents and young adults (AYA) with cancer undergo physical transformations due to disease and treatments occurring alongside puberty and adolescence. Although physical activity is recommended for its benefits, its practice...