Advanced Illness Research Articles

FGF19 promotes nasopharyngeal carcinoma progression by inducing angiogenesis via inhibiting TRIM21-mediated ANXA2 ubiquitination

PurposeNasopharyngeal carcinoma (NPC) has characteristics of high invasion and early metastasis. Most NPC patients present with locoregionally advanced illness when first diagnosed. Therefore, it is urgent to discover NPC biomarkers. Fibroblast growth Factor 19 (FGF19) plays a role in various physiological or pathological processes, including cancer. In this research, we discovered the importance of FGF19 in NPC, and clarified its role in tumour angiogenesis.MethodsWestern blotting, immunohistochemistry and ELISA were used to investigate FGF19 expression in NPC. Then we took CCK8, colony formation, Transwell and wound healing assays to identify the influence of FGF19 on NPC malignant behaviours. The proliferative and metastatic capacity of FGF19 were evaluated in nude mice and zebrafish. The role of FGF19 in angiogenesis was investigated by tube formation and Matrigel plug angiogenesis assays. We then evaluated the variation in Annexin A2(ANXA2) levels with the treatment of FGF19. Lastly, co-immunoprecipitation and ubiquitination assays were performed to identify the mechanisms involved.ResultsFGF19 levels were elevated in tissues and serum of NPC patients and were associated with poor clinical stages. High expression of FGF19 promoted NPC malignant behaviours. In particular, FGF19 expression was correlated with microvessel density in tissues and NPC-derived FGF19 could accelerate angiogenesis in vitro and in vivo. Mechanistically, FGF19 influenced ANXA2 expression to promote angiogenesis. Moreover, tripartite motif-containing 21(TRIM21) interacted with ANXA2 and was responsible for ANXA2 ubiquitination.ConclusionFGF19 promoted NPC angiogenesis by inhibiting TRIM21-mediated ANXA2 ubiquitination. It may serve as a noninvasive biomarker for NPC and provides new insights for therapy.

Impact of Patient Subgroups on the Efficacy and Safety of Methylnaltrexone for Opioid-Induced Constipation in Patients with Advanced Illness.

We evaluated the impact of baseline patient characteristics on safety and efficacy of methylnaltrexone, a peripherally acting µ-opioid receptor antagonist, in patients with advanced illness with opioid-induced constipation (OIC). This analysis pooled data from 2 randomized, double-blind, placebo-controlled studies (study 302: NCT00402038; study 4000: NCT00672477) in patients with advanced illness, including cancer, and OIC. Patients were randomized to receive subcutaneous methylnaltrexone (study 302: 0.15 mg/kg; study 4000: 8 or 12 mg based on weight) or placebo every other day for 2 weeks. The proportions of patients achieving rescue-free laxation within 4 or 24 hours after the first dose of study drug were assessed in patient subgroups stratified by baseline age, Eastern Cooperative Oncology Group (ECOG) performance status, cancer status, laxative type, and opioid requirement. Treatment-emergent adverse events (TEAEs) were evaluated. Overall, 363 patients were included in this analysis (methylnaltrexone, 178; placebo, 185). Mean (SD) age was 66.3 (13.7) years and 48.5% were men overall. A significantly greater proportion of patients receiving methylnaltrexone versus placebo achieved rescue-free laxation within 4 hours (111/178 [62.4%] vs 31/185 [16.8%]; P<0.0001) and 24 hours (135/178 [75.8%] vs 81/185 [43.8%]; P<0.0001) of the first dose. These trends were consistent across all subgroups. Most patients experienced ≥1 TEAE in the overall population (methylnaltrexone, 82.1%; placebo, 76.2%), which remained consistent when stratified by baseline characteristics. More than half of TEAEs were gastrointestinal in nature. Abdominal pain was more common in patients receiving methylnaltrexone than placebo across baseline characteristic subgroups. Methylnaltrexone treatment was superior to placebo in achieving rescue-free laxation within 4 and 24 hours after the first dose, irrespective of patients' cancer status, baseline ECOG performance status, or baseline opioid or laxative use. The methylnaltrexone safety profile remained consistent across baseline characteristic subgroups.

Acute Kidney Injury in Neonates: A Single-Center Experience

Background: Neonatal intensive care unit infants frequently experience acute kidney damage. Estimates of the prevalence of acute kidney vary depending on the definitions used. In Iraq, studies addressing the prevalence and risk factors of acute kidney injury in this age group are scarce, none of which has implicated the KDIGO diagnostic and staging criteria. Objectives: To describe the prevalence, demographics, risk factors, etiology, and staging of acute kidney injury using KDIGO criteria in the Neonatal intensive care unit and correlate these findings with patient outcomes. Methods: A retrospective study was conducted in the Neonatal Intensive Care Unit/ CWTH/ Medical City Complex/ Baghdad during the period from the 1st of August 2019 to the 15th of January 2020. All neonates diagnosed with acute kidney injury according to KDIGO –classification 2012 and admitted to the neonatal intensive care unit were included in this study. Demographics, clinical staging, and investigations were retrieved from patients' notes. Results: The prevalence of acute kidney damage was 7.2%. The mean gestational age of the patients was 36.8 ± 2.9 weeks, 58% of them were full-term, with a male-to-female ratio of 1.40:1. Stage I patients represented 35.1%, 43.2% were stage 2, and 21.6% had severe stage 3. Acute kidney injury-related mortality was 35.1%. The term female sex, high birth weight, and age younger than seven days at diagnosis predicted a bad prognosis. Vaginally delivered, stage III acute kidney injury-KDIGO, and peritoneal dialysis patients had the worst outcomes. Asphyxia was a major cause of acute kidney injury (P=0.001). High blood urea (P=0.01), low PH (P=0.009), low HCO3 (P=0.001), low WBC count (P=0.001), and low platelet count (0.001) were associated with unfavorable outcomes. Conclusions: The prevalence of acute kidney injury, according to KIDGO diagnostic and staging criteria, is 7.1%. Asphyxia, female gender, and vaginal deliveries are variables associated with poor prognosis in addition to advanced illness stage and laboratory indicators. Received: Dec. 2022 Accepted: Jun 2023 Published: Oct.2023

ANALYSIS OF COMMON SYMPTOMS USING THE EDMONTON SYMPTOM ASSESSMENT SYSTEM IN TERMINALLY ILL CANCER PATIENTS RECEIVING PALLIATIVE CARE AT A TERTIARY CARE CENTER OF NEPAL

Background: The Edmonton Symptom Assessment System (ESAS) is a reliable tool to assess the severity of Symptom over time. It evaluates nine symptoms commonly experienced by patients with cancer and other advanced illness. The aim of this study is to find the prevalent symptoms, intensity and prognostic significance of common symptoms in cancer patients. Methods: This prospective cross-sectional study enrolled 110 patients with terminal cancer receiving palliative care admitted at clinical oncology department of Bir Hospital. Patients providing informed written consent were advised to complete ESAS questionnaire within 24 hours of hospital admission. Data entry and analysis done in Microsoft Excel Version 2013. Frequency distributions, percentages, means, and standard deviations of various symptoms were analyzed. Scatter diagram was prepared to evaluate the time trend of all nine ESAS items toward death. Results: One hundred ten patients (mean age 53.76 ± 10.63 years, 70 female and 40 male) completed ESAS score questionnaire. The most common symptom experienced was poor well-being 97(88.18%), followed by tiredness 91(82.72%) and lack of appetite 88(80%). Most severe symptoms were poor well-being with a mean score of 5.27 ± 3.08, followed by tiredness (3.55 ± 2.46), pain (3.24 ± 2.61) and lack of appetite (3.15 ± 2.53) and all the symptoms tend to deteriorate towards end of life. Conclusions: Edmonton Symptom Assessment System (ESAS) can be used easily to assess common symptoms and their intensity in cancer patients which help to provide specific symptom directed treatment and care.

Understanding patient views and experiences of the IDENTIfication of PALLiative care needs (IDENTI-PALL): a qualitative interview study.

Palliative care improves quality of life for people with life-threatening illnesses. There are longstanding inequalities in access to palliative care, with many people never identified as having palliative care needs, particularly frail older people, those with non-malignant disease, and people from ethnic minority backgrounds. Little is known about the process of identification of palliative care needs from a patient perspective. To provide new understanding into patient views and experiences of the process of identification of palliative care needs, and to explore the impact of identification on health care, if any, from a patient perspective. A qualitative interview study undertaken with patients and family carers in a major UK city. Semi-structured interviews were carried out with patients (and/or family carers) identified as being on general practice palliative care registers. An inductive thematic analysis was conducted to explore the data. Eleven participants were recruited: eight patients and three family carers. The following three interrelated themes were identified: 1) misconceptions about palliative care and unshared prognostic uncertainty hinder the identification of palliative care needs; 2) a compassionate, timely approach is required for identification of palliative care needs, with or without an identification tool; and 3) identification of palliative care needs is beneficial where it leads to proactive holistic care. A compassionate approach, sharing of prognostic uncertainty, and proactive primary care are key to timely, beneficial identification of palliative care needs. Future policy should ensure that identification is an adaptable, personalised process to meet the individual needs of people with advanced serious illnesses.

Using volunteers to improve access to community rehabilitation in palliative care: the St Christopher's Living Well at Home Team.

UK hospices often provide outpatient rehabilitation services for people with advanced progressive illness. However, some people are unable to travel, leading to inequity in rehabilitation access. The Living Well at Home Team (LWAHT) at St Christopher's Hospice aimed to evaluate whether using volunteers to support rehabilitation in peoples' homes improved the reach of rehabilitation for people living in underserved localities and if it supported people to optimise their functional independence. This service improvement project evaluated hospice rehabilitation uptake during the implementation of volunteer-supported community rehabilitation. Following assessment by an LWAHT therapist, eligible people were matched with a trained volunteer who supported four to eight rehabilitation sessions in the person's home. The evaluation assessed uptake of the rehabilitation sessions. Mobility, wellbeing, and goal attainment outcomes were assessed by the Life-Space Assessment (LSA), General Health Questionnaire (GHQ), and Goal Attainment Scale (GAS), respectively. In the first year, 183 patients were referred to the LWAHT; 123 were assessed and 96 received rehabilitation including 56 who were matched with a volunteer. Following volunteer support, patients reported significant improvements in mobility [LSA median 20 (IQR, 3.5-27.8)], general health [GHQ -2 (-5.25 to 0)], and achievement of goals [GAS T-score +8 (0-18.4)]. It was feasible to support community rehabilitation using hospice volunteers for people with advanced progressive illness. The LWAHT service also increased the uptake of hospice centre-based rehabilitation. Further work should test efficacy and identify patients requiring additional professional input. This is the first known study reporting on the use of trained rehabilitation volunteers to extend the reach of hospice rehabilitation services. People with limited access to the hospice, because of geographical location or personal circumstances, valued and benefited from tailored rehabilitation supported by the volunteers in their own homes.

Integrating evidence-based communication principles into routinecancer care.

The global incidence of cancer and available cancer-directed therapy options is increasing rapidly, presenting patients and clinicians with more complex treatment decisions than ever before. Despite the dissemination of evidence-based communication training tools and programs, clinicians cite barriers to employing effective communication in cancer care (e.g., discomfort of sharing serious news, concern about resource constraints to meet stated needs). We present two composite cases with significant communication challenges to guide clinicians through an application of evidence-based approaches to achieve quality communication. Composite cases, communication skills blueprint, and visual conceptualization. High-stakes circumstances in each case are described, including end-of-life planning, advanced pediatric illness, strong emotions, and health inequities. Three overarching communication approaches are discussed: (1) content selection and delivery; (2) rapport development; and (3) empathic connection. The key takeaways following each case provide succinct summaries of challenges encountered and approaches used. A communication blueprint from the Memorial Sloan Kettering Cancer Center Communication Skills Training Program and Research Laboratory has been adapted and is comprised of strategies, skills, process tasks, andsample talking points. A visually concise tool - the Communication Blueprint Traffic Circle - illustrates these concepts and demonstrates the iterative, holistic, and agile considerations inherent to effective communication. Evidence-based communication is foundational to person-centeredness, associated with improved clinician and patient/caregiver outcomes, and can be integrated throughout routineoncology care. When used by clinicians, evidence-based communication can improve patient and caregiver experiences and assist in ensuring goal-concordant cancer care delivery.

Comparison of home-based palliative care delivered by community health workers versus usual care: research protocol for a pilot randomized controlled trial

BackgroundResearch studies demonstrate that palliative care can improve patient outcomes such as quality of life, symptom burden and patient satisfaction with care (Gomes B, et al. Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013(6):CD00776) (World Health Organization. Palliative Care. Published 2020.). While 76% of patients who need palliative care live in limited-resource countries, access to high quality palliative services in these countries is minimal (Worldwide Hospice and Palliative Care Association and World Health Organization. Global Atlas of Palliative Care (2nd ed). 2020.). In 2014 the Worldwide Hospice Palliative Care Alliance, with strong endorsement by the WHO, released the Palliative Care Toolkit to provide a training and implementation toolkit for empowering community members to deliver palliative care in resource poor settings (Worldwide Hospice and Palliative Care Association and World Health Organization. Global Atlas of Palliative Care at the End of Life. Geneva, Switzerland 2014.). They encouraged researchers and public health practitioners to conduct rigorous evaluation of the toolkit in diverse settings and contexts. To address this need, we will conduct a pilot randomized controlled trial (RCT) to examine implementation and explore potential effect of an intervention based upon the Palliative Care Toolkit, as adapted and used by community health workers (CHWs) working with a cancer center in Kolkata, India to deliver home-based palliative care for rural patients.MethodsUtilizing a randomized controlled trial design, intervention patients (n = 45) receive home-based palliative services (Pal-Care) delivered by community health workers (CHWs), with comparison against a control group of patients (n = 45) who receive usual cancer-center-based palliative services. Primary outcome measures include evaluation of CHW training outcomes, roles and responsibilities of the CHWS and how they assist patients, trial recruitment, stakeholder perceptions of the intervention, and fidelity to study protocol. Secondary outcomes measure patient self-report of health-related quality of life, symptom burden, palliative needs and patient care experience, outcomes The RE-AIM framework guides our evaluation plan to measure the reach, effectiveness, adoption, implementation and maintenance of the Pal-Care intervention (Gaglio B, et al. The RE-AIM framework: a systematic review of use over time. Am J Public Health. 2013;103(6):e38?46.). Data will be analyzed in SAS. All measures will be evaluated overall and by patient age, gender and cancer type and by CHW caseload.DiscussionPal-Care is a RCT funded by the NCI to explore utilization of CHWs to deliver a home-based palliative care intervention built upon the WHO Palliative Care toolkit (PCT), as compared to a usual care control group. The long-term goal of this research is to develop an effective and sustainable model for delivering home-based palliative care for cancer patients in underserved areas.Trial registration (TRN)ClinicalTrials.gov ID# NCT04972630.

Effective communication in palliative care from the perspectives of patients and relatives: A systematic review.

In palliative care, effective communication is essential to adequately meet the needs and preferences of patients and their relatives. Effective communication includes exchanging information, facilitates shared decision-making, and promotes an empathic care relationship. We explored the perspectives of patients with an advanced illness and their relatives on effective communication with health-care professionals. A systematic review was conducted. We searched Embase, Medline, Web of Science, CINAHL, and Cochrane for original empirical studies published between January 1, 2015 and March 4, 2021. In total, 56 articles on 53 unique studies were included. We found 7 themes that from the perspectives of patients and relatives contribute to effective communication: (1) open and honest information. However, this open and honest communication can also trigger anxiety, stress, and existential disruption. Patients and relatives also indicated that they preferred (2) health-care professionals aligning to the patient's and relative's process of uptake and coping with information; (3) empathy; (4) clear and understandable language; (5) leaving room for positive coping strategies, (6) committed health-care professionals taking responsibility; and (7) recognition of relatives in their role as caregiver. Most studies in this review concerned communication with physicians in a hospital setting. Most patients and relatives appreciate health-care professionals to not only pay attention to strictly medical issues but also to who they are as a person and the process they are going through. More research is needed on effective communication by nurses, in nonhospital settings and on communication by health-care professionals specialized in palliative care.

Is It Time to Reassess the Role of Radiotherapy Treatment in Ovarian Cancer?

With a 5-year survival rate of fewer than 50%, epithelial ovarian carcinoma is the most fatal of the gynecologic cancers. Each year, an estimated 22,000 women are diagnosed with the condition, with 14,000 dying as a result, in the United States. Over the last decade, the advent of molecular and genetic data has enhanced our understanding of the heterogeneity of ovarian cancer. More than 80% of women diagnosed with advanced illness have an initial full response to rigorous therapy at diagnosis, including surgery and platinum-based chemotherapy. Unfortunately, these responses are infrequently lasting, and the majority of women with ovarian cancer suffer recurrent disease, which is often incurable, despite the possibility of future response and months of survival. And what therapeutic weapons do we have to counter it? For many years, radiation therapy for ovarian tumors was disregarded as an effective treatment option due to its toxicity and lack of survival benefits. Chemotherapy is widely used following surgery, and it has nearly completely supplanted radiation therapy. Even with the use of more modern and efficient chemotherapy regimens, ovarian cancer failures still happen. After receiving first-line ovarian cancer chemotherapy, over 70% of patients show evidence of recurrence in the abdomen or pelvis. It is necessary to reinterpret the function of radiation therapy in light of recent technological developments, the sophistication of radiation procedures, and the molecular and biological understanding of various histological subtypes. This review article focuses on the literature on the use of radiation in ovarian tumors as well as its rationale and current indications.

Use of Sequential Organ Failure Assessment Among Intensive Care Unit Patients with Septic Shock

Purpose: Sepsis is a significant cause of mortality in modern intensive care units (ICUs). At Sharp Grossmont Hospital (SGH), sepsis cases increased the patient mortality rate in comparison to other Sharp facilities. Currently, no tools are utilized to identify septic patients at SGH. The study aimed to find out the impact of early consultation of advanced illness management (AIM) and goals of care conversations (GOCC) on reducing the length of stay (LOS) among septic shock patients.&#x0D; Methodology: Descriptive data were attained based on Electronic Medical Records (EMR) of 39 septic shock patients form which ICU nurses utilize to calculate Sequential Organ Failure Assessment (SOFA) on admission and daily for 2 days. &#x0D; Findings: The education increased the ICU staff’s awareness of the high occurrence of septic shock among ICU patients. After the deployment of SOFA scores among 39 patients of septic shock, the average LOS was 3 days, compared to more than 5 days before implementing SOFA scores. Post-implementation, 33 % of patients received early AIM or GOCC intervention, with 84% of them receiving intervention from the first day of admission. These percentages are compared to pre-implementation, when early AIM or GOCC intervention was provided to 36.4 % of patients, with 41.3 % of them receiving AIM or GOCC from the first day of admission.&#x0D; Recommendations: In this study, the leader of change must be aware of standardized Arterial Blood Gas (ABG) orders for SOFA scores and measure the compliance of ICU nurses in documenting SOFA scores. Moreover, raise awareness among healthcare professionals about the high occurrence of septic shock mortality among ICU patients.

Teaching Palliative Care to Emergency Medicine Residents Using Gamified Deliberate Practice-Based Simulation: Palliative Gaming Simulation Study.

Emergency departments (EDs) care for many patients nearing the end of life with advanced serious illnesses. Simulation training offers an opportunity to teach physicians the interpersonal skills required to manage end-of-life care. We hypothesized a gaming simulation of an imminently dying patient using the LIVE. DIE. REPEAT (LDR) format, would be perceived as an effective method to teach end-of-life communication and palliative care management skills. This was a gaming simulation replicating the experience of caring for a dying patient with advanced serious illness in the ED. The scenario involved a patient with pancreatic cancer presenting with sepsis and respiratory distress, with a previously established goal of comfort care. The gaming simulation game was divided into 4 stages, and at each level, learners were tasked with completing 1 critical action. The gaming simulation was designed using the LDR serious game scheme in which learners are allowed infinite opportunities to progress through defined stages depicting a single patient scenario. If learners successfully complete the predetermined critical actions of each stage, the game is paused, and there is a debriefing to reinforce knowledge or skills before progressing to the next stage of the gaming simulation. Conversely, if learners do not achieve the critical actions, the game is over, and learners undergo debriefing before repeating the failed stage with an immediate transition into the next. We used the Simulation Effectiveness Tool-Modified survey to evaluate perceived effectiveness in teaching end-of-life management. Eighty percent (16/20) of residents completed the Simulation Effectiveness Tool-Modified survey, and nearly 100% (20/20) either strongly or somewhat agreed that the gaming simulation improved their skills and confidence at the end of life in the following dimensions: (1) better prepared to respond to changes in condition, (2) more confident in assessment skills, (3) teaching patients, (4) reporting to the health care team, (5) empowered to make clinical decisions, and (6) able to prioritize care and interventions. All residents felt the debriefing contributed to learning and provided opportunities to self-reflect. All strongly or somewhat agree that they felt better prepared to respond to changes in the patient's condition, had a better understanding of pathophysiology, were more confident on their assessment skills, and had a better understanding of the medications and therapies after the gaming simulation. A total of 88% (14/16) of them feel more empowered to make clinical decisions. After completing the gaming simulation, 88% (14/16) of residents strongly agreed that they would feel more confident communicating with a patient and prioritizing care interventions in this context. This palliative gaming simulation using the LDR format was perceived by resident physicians to improve confidence in end-of-life communication and palliative care management.

Surgical Intervention for the Treatment of Multiple Glioblastomas A Retrospective observational study

Background: This trial tested surgery therapy for numerous glioblastomas. A multi-centre study enlisted 32 multiple GBM cases. The outcomes were overall survival, progression-free survival, time to return, and quality of life. Biopsy, debulking, and excision were performed. Overall survival was 13.5 months, and progression-free survival was 8.5 months. Postoperative quality of life improved considerably. Multiple glioblastomas can be treated safely and effectively with surgery. Objective: This study aims to evaluate the outcomes of glioblastoma patients' surgical resections. Study design: A Retrospective observational study. Place and duration of study: department of Neurosurgery, LRH Peshawar from Between 05-January 2015 and 05-January 2018 Methods: the research was carried out at MTI LRH Peshawar Hospital. To find 30 patients with progressing GB, records for everyone who had a glioblastoma biopsy or had it removed between January 2015 and January 2018 were identified and evaluated retrospectively. The median survival and 90% CI were derived by the Kaplan-Meier method. The multivariate analysis was conducted for age, Karnofsky score, amount of resection, tumour size, and tumour multifocality of survival following the advancement of the disease using the Cox Proportional Risks model. Results: Patients with advanced illnesses underwent the first known resection. Patients who had not yet had resections had median survival after progression of 10.6 months for them and 4.0 months for them. In multivariable analysis, surgical intervention and KPS 0.70 (HR 0.411) were associated with improved survival after GBM progression. The median overall survival was 13.5 months, with a 90% CI of 8.2 to 18.8 months. The median progression-free survival was 8.5 months, with a 90% CI of 5.3 to 11.7 months. Quality of life scores improved significantly postoperatively. Conclusions: Operative intervention for progressing Glioblastoma effectively treats the symptoms in the current maximum non-operative treatment, but the survival of the patients is restricted. More research is needed to determine ifsurgical surgery can lengthen post-progressive endurance in people with progressive GB. Keywords: Surgical Intervention, Treatment, Multiple Glioblastomas

Implementing and assessing the acceptability of a portable, readily accessible, and actionable end of life planning tool for patients with advanced serious illness or frailty in southern New Zealand.

The Clinical Order Articulating Scope of Treatment (COAST) form was designed as a single-page medical order documenting and communicating the resuscitation status and scope of appropriate medical treatment for adult patients believed to be in their final year of life. Prior to introducing COAST, each health provider or agency in the Southland region of New Zealand had its own forms and processes; the COAST pilot attempted to consolidate and streamline these varied processes into one actionable medical order that is valid throughout the region. This three-phase initiative involved piloting use of the COAST form in Southland between May 2019 and January 2020. Surveys were given to patients at the time of COAST form completion and distributed electronically to health professionals at the end of each phase to assess attitudes towards COAST form use and obtain feedback. The hypothesis was that COAST would be acceptable to patients, families, and health providers. The response rates for patient and health professional COAST experience surveys were low (24% and 27% respectively) but the feedback was positive, with the majority of respondents expressing that the COAST form improved patient care. Implementation of the COAST form has been widely accepted by patients, families, and health professionals alike.

Palliative care needs and preferences of older adults with advanced or serious chronic illnesses and their families in rural communities of Indiana, USA.

To explore the palliative care needs and preferences of older adults with advanced or serious chronic illnesses and their families. Also, to propose strategies to promote supportive palliative care in the rural communities of Indiana, USA. We conducted qualitative interviews to gather rural caregivers' experiences of palliative care. Recruitment was done in collaboration with community partners using social media, flyers, emails, invitations, and word-of-mouth. A purposive sample of family caregivers was obtained. All the interviews were conducted online. The average interview was 30-45 minutes. Data were analyzed using a thematic analysis approach. Our findings showed 6 major themes that indicated several palliative care needs and preferences of older patients and their families in rural communities that include: (1) difficulties in pain and symptom burden; (2) perceived discrimination and lack of trust; (3) longer distances to care facilities; (4) difficult conversations; (5) caregiving burden; and (6) use of telehealth in a rural palliative care context. Rural family caregivers experience several social inequities and disparities causing a lack of access to and low utilization of palliative care. All these disparities cause several challenges for patients and their families trying to manage serious illnesses and die in place with peace and comfort. Inadequate access and lack of resources cause pain and distress for both patients and their families. Provider education and trainings, initiating early palliative care models, integrating behavioral health in palliative care, and using culturally congruent care delivery approaches in support of community partners can improve palliative care services in rural communities.

Physical Restraints in Advanced Illness #462

Physical Restraints in Advanced Illness #462

A Smart System for Remote Monitoring of Patients in Palliative Care (HumanITcare Platform): Mixed Methods Study.

Due to the complexities of advanced illnesses and their treatments, it can be difficult for patients in palliative care to maintain their quality of life. Telemedicine interventions in chronic disease management engage patients in their care, provide continuous follow-up by their health care providers, identify symptoms earlier, and allow a quick response to illness-related decline. We aimed to detail and reflect on the design of an app and evaluate its feasibility to monitor the clinical situation of patients with advanced illnesses. This study used a mixed methods design using qualitative methods to inform app development and design and quantitative methods for data collection and analysis of patient evaluations. Palliative care units in 2 Spanish university hospitals (Nuestra Señora de la Candelaria in Santa Cruz de Tenerife and University Hospital Complex of Ferrol in A Coruña) carried out a literature review, designed the study protocol, and obtained approval from the Ethics Committee from June to December 2020. In addition, focus group meetings were held, and the design and technical development of the app were elaborated on and subsequently presented in the participating palliative care units. From January to March 2021, the app was made public on the App Store and Play Store, and a pilot study with patients was carried out in April to September 2021. Six focus group meetings were held that included doctors, nurses, app developers, technology consultants, and sponsors. In addition, the technology consultants presented their results 3 times in the participating palliative care units to obtain feedback. After the app's final design, it was possible to publish it on the usual servers and begin its evaluation in patients (n=60, median age 72 years). Sixty percent (n=36) of the participants were women and 40% (n=24) were men. The most prevalent advanced pathology was cancer (n=46, 76%), followed by other diseases (n=7, 12%) and amyotrophic lateral sclerosis (n=5, 8%). Seventy percent (n=42) of the patients were already in follow-up prior to the start of the study, while 30% (n=18) were included at the start of their follow-up. The information in the app was collected and entered by relatives or caregivers in 60% (n=36) of the cases. The median follow-up was 52 (IQR 14-104) days. In all, 69% (n=41) had a follow-up >30 days (10 were deceased and 9 were missing data). The use of the different sections of the app ranged from 37% (n=22) for the glycemic record to 90% (n=54) for the constipation scale). Patients and caregivers were delighted with its ease of use and usefulness. Incorporating an intelligent remote patient monitoring system in clinical practice for patients in palliative care can improve access to health services and provide more information to professionals.

The relationship between hope, medical expenditure and survival among advanced cancer patients.

Among those with advanced illness, higher levels of hope may offer physiological benefits. Yet, greater levels of hope may also encourage aggressive treatments. Therefore, higher levels of hope may lead to greater healthcare utilization, higher expenditure, and longer survival. We test these hypotheses among patients with advanced cancer. A secondary data analysis from a cross-sectional survey of 195 advanced cancer patients with high mortality risk linked to subsequent healthcare utilization (outpatient, day surgeries, non-emergency admissions), health expenditures, and death records. The survey collected data on hope, measured generally by the Herth Hope Index (HHI) and more narrowly by two questions on illness-related hope. Generalized linear regression and Cox models were used to test our hypotheses. 142 (78%) survey participants died during the period of analysis, with close to half (46%) doing so within a year of the survey. Contrary to expectation, HHI scores did not have a significant association with healthcare utilization, expenditure or survival. Yet, illness-related hope, defined as those who expected to live at least 2 years, as opposed to the likely prognosis of 1 year or less as determined by the primary treating oncologist, had 6.6 more planned hospital encounters (95% CI 0.90 to 12.30) in the 12-months following the survey and 41% lower mortality risk (hazard ratio: 0.59, 95% CI 0.36 to 0.99) compared to those who were less optimistic. Secondary analysis among decedents showed that patients who believed that the primary intent of their treatment is curative, had higher total expenditure (S$30,712; 95% CI S$3,143 to S$58,282) in the last 12 months of life than those who did not have this belief. We find no evidence of a relationship between a general measure of hope and healthcare utilization, expenditure, or survival among advanced cancer patients. However, greater illness-related hope is positively associated with these outcomes.

Massage Therapy for Hospitalized Patients Receiving Palliative Care: A Randomized Clinical Trial.

Massage therapy is increasingly used in palliative settings to improve quality of life and symptom burden; however, the optimal massage "dosage" remains unclear. To compare three massage dosing strategies among inpatients receiving palliative care consultation. At an urban academic hospital, we conducted a three-armed randomized trial examining three different doses of therapist-applied massage to test change in overall quality of life and symptoms among hospitalized adult patients receiving palliative care consultation for any indication (Arm I: 10-min massage daily x 3 days; Arm II: 20-min massage daily x 3 days; Arm III: single 20-min massage). Primary outcome measure was single-item McGill Quality of Life question. Secondary outcomes measured pain/symptoms, rating of peacefulness, and satisfaction with intervention. Data were collected at baseline, pre- and post-treatment, and 1-day post-last treatment (follow-up). Repeated measure analysis of variance and paired t-test were used to determine significant differences. N=387 patients were 55.7 (±15.49) years old, mostly women (61.2%) and African-American (65.6%). All three arms demonstrated within-group improvement at follow-up for McGill quality of life (all p<0.05). No significant between-group differences were found. Finally, repeated measure analyses demonstrated time to predict immediate improvement in distress (p≤0.003) and pain (p≤0.02) for all study arms; however, only improvement in distress sustained at follow-up measurement in arms with three consecutive daily massages of 10 or 20 minutes. Massage therapy in complex patients with advanced illness was beneficial beyond dosage. Findings support session length (10 or 20 minutes) was predictive of short-term improvements while treatment frequency (once or three consecutive days) predicted sustained improvement at follow-up.

A roadmap for early psychosocial support in palliative care for people impacted by ALS-reducing suffering, building resiliency, and setting the stage for delivering timely transdiagnostic psychosocial care.

This commentary describes the current state of psychosocial care for people with amyotrophic lateral sclerosis and their caregivers. We provide recommendations for developing a roadmap for future research based on existing literature and our group's clinical and research experience to inform next steps to expand evidence-based psychosocial care for people with amyotrophic lateral sclerosis and their caregivers, with potential implications for a range of advanced illnesses.