Significant Caregiver Burden Research Articles

Cost-Effectiveness of Teduglutide for Pediatric Patients with Short Bowel Syndrome in Japan, Including Caregiver Burden.

Short bowel syndrome (SBS) is associated with a significant mental and physical burden for patients and caregivers. Standard of care (SOC) for SBS includes parenteral support (PS) to optimize intestinal function. Teduglutide, a recombinant human glucagon-like peptide2 analogue, reduces the need for PS in patients with SBS. In this study, we assessed the cost-effectiveness of teduglutide in pediatric patients with SBS from multiple perspectives, considering the caregiver's burden. A Markov model was used to evaluate cost (Japanese yen, JPY) and effectiveness (quality-adjusted life years, QALYs) of teduglutide compared with SOC for pediatric patients with SBS in Japan. We conducted a base-case analysis and selected sensitivity and scenario analyses from three perspectives: (1) the public healthcare payer, (2) the public healthcare and long-term care payer, and (3) society. In the base-case analysis, the incremental cost-effectiveness ratio (ICER) was 9,533,412 JPY per QALY from the public healthcare payer perspective, 6,335,980 JPY per QALY from the public healthcare and long-term care payer perspective, and 3,510,371 JPY per QALY from the societal perspective. The probability that cost-effectiveness of teduglutide is favorable from a societal perspective was 59.3%. In all scenario analyses, consistent with the base-case analysis, ICERs for teduglutide compared with SOC were different depending on whether caregiver utility and productivity loss were considered. Incorporating the caregiver's burden in the cost-effectiveness analysis of teduglutide for pediatric patients with SBS provided a more comprehensive assessment of the value of teduglutide for patients, their families, and society. This approach enhances our understanding of the overall value of a treatment, especially for diseases with significant caregiver burden.

Support Needs of Family Caregivers of Older Patients With Cancer in Iran:A Qualitative Study

Objectives Family members have a significant role in caregiving for older patients with cancer. These caregivers are exposed to a significant caregiving burden. Therefore, it is necessary to support them. In this regard, it is important to know their needs. The present study aimed to explore the support needs of family caregivers of older patients with cancer in Iran. Methods & Materials This descriptive qualitative study was conducted during 2020–2022. Thirty-one participants including family caregivers of older patients with cancer, family members of family caregivers, and healthcare providers were purposefully recruited from healthcare centers in Tehran, Iran. Data were collected through semi-structured interviews until data saturation. Data analysis was performed using Graneheim and Lundman’s content analysis method. Lincoln and Guba’s criteria were used to evaluate the trustworthiness of the data. Results The analysis led to the identification of six main themes, including the need for informational support, the need for physical support, the need to get rid of psychological insecurity, the need for improve spirituality, the need for practical support and the need for the help of a care team. Conclusion Considering the multiple support needs of family caregivers of older patients with cancer in Iran, policymakers, healthcare planners, and healthcare providers should design and implement various interventions based on these needs by using a caregiver-centered approach to support these caregivers.

“Our life literally got turned upside down”: Mothers' experiences of theCOVID‐19 pandemic

AbstractObjectiveThe purpose of this study is to describe how the COVID‐19 pandemic influenced the lives of families with preschool‐age children, both broadly and with respect to familial roles, relationships, and routines.BackgroundThe COVID‐19 pandemic placed a significant caregiving burden on families with young children, but the voices and experiences of these families have not been well documented in the scientific literature. Preschool‐age children undergo rapid brain development during the early childhood period, and thus these children may be especially vulnerable to the effects of pandemic‐related stress.MethodWe conducted a qualitative descriptive study with caregivers of preschool‐age children. A semi‐structured interview was used to elicit information about the COVID‐19 pandemic's influence on family functioning, routines, and relationships. We used inductive thematic analysis to code the data and identify themes and subthemes.ResultsThirty‐five women participated in the study. Women described both positive and negative influences of the pandemic on family life. Themes included: 1) disrupted routines and the parent juggling act, 2) rattled relationships and close connections, 3) the pile‐up of pandemic related stressors, and 4) coping strategies and “coming out on the other side.”Conclusions & ImplicationsA deeper understanding of the effects of the COVID‐19 pandemic on family life provides critical insight necessary to inform targeted intervention efforts and improve long‐term outcomes for families with young children.

Long-term predictors of developmental outcome and disease burden in SCN1A-positive Dravet syndrome.

Dravet syndrome is a severe infantile onset developmental and epileptic encephalopathy associated with mutations in the sodium channel alpha 1 subunit gene SCN1A. Prospective data on long-term developmental and clinical outcomes are limited; this study seeks to evaluate the clinical course of Dravet syndrome over a 10-year period and identify predictors of developmental outcome. SCN1A mutation-positive Dravet syndrome patients were prospectively followed up in the UK from 2010 to 2020. Caregivers completed structured questionnaires on clinical features and disease burden; the Epilepsy & Learning Disability Quality of Life Questionnaire, the Adaptive Behavioural Assessment System-3 and the Sleep Disturbance Scale for Children. Sixty-eight of 113 caregivers (60%) returned posted questionnaires. Developmental outcome worsened at follow-up (4.45 [SD 0.65], profound cognitive impairment) compared to baseline (2.9 [SD 1.1], moderate cognitive impairment, P < 0.001), whereas epilepsy severity appeared less severe at 10-year follow-up (P = 0.042). Comorbidities were more apparent at 10-year outcome including an increase in autistic features (77% [48/62] versus 30% [17/57], χ2 = 19.9, P < 0.001), behavioural problems (81% [46/57] versus 38% [23/60], χ2 = 14.1, P < 0.001) and motor/mobility problems (80% [51/64] versus 41% [24/59], χ2 = 16.9, P < 0.001). Subgroup analysis demonstrated a more significant rise in comorbidities in younger compared to older patients. Predictors of worse long-term developmental outcome included poorer baseline language ability (P < 0.001), more severe baseline epilepsy severity (P = 0.003) and a worse SCN1A genetic score (P = 0.027). Sudden unexpected death in epilepsy had not been discussed with a medical professional in 35% (24/68) of participants. Over 90% of caregivers reported a negative impact on their own health and career opportunities. Our study identifies important predictors and potential biomarkers of developmental outcome in Dravet syndrome and emphasizes the significant caregiver burden of illness. The negative impact of epilepsy severity at baseline on long-term developmental outcomes highlights the importance of implementing early and focused therapies whilst the potential impact of newer anti-seizure medications requires further study.

ADRD: A REVIEW OF THE PATIENT-CENTERED OUTCOMES RESEARCH INSTITUTE’S (PCORI) RESEARCH PORTFOLIO AND PRIORITIES

Abstract Given the aging of the U.S. population, the number of individuals living with Alzheimer’s Disease and Related Dementias (ADRD) is projected to reach 13 million by 2050. There is an urgent need for research efforts to advance prevention, diagnosis, and treatment strategies for ADRD. Furthermore, caregivers of individuals with ADRD often face distinct challenges and experience significant caregiving burden that has an impact on their well-being. To address unmet needs of individuals with ADRD and their caregivers, PCORI has invested nearly $85 million in patient-centered comparative clinical effectiveness research (CER) focused on ADRD and has initiated several stakeholder convenings to identify future research priorities. PCORI’s ADRD portfolio of 15 CER studies includes interventions focused on caregiving, polypharmacy, telehealth, care models, and palliative care. Additionally, PCORI has funded engagement awards, dissemination &amp; implementation initiatives, and research infrastructure projects to help facilitate the conduct and awareness of research on persons living with ADRD and their caregivers. To support continued research in this area, PCORI plans to re-issue a $50 million funding initiative on Healthy Aging with a special area of emphasis on interventions for caregivers of older adults living with ADRD. By systematically synthesizing PCORI’s portfolio and themes from stakeholder convenings in ADRD, we can identify the strengths of current investments and understand evidence gaps to guide PCORI’s future investments. This will enable us to holistically address future real-world, decisional dilemmas most important to patients, caregivers, and other stakeholders.

Safety profile of pimavanserin therapy in elderly patients with neurodegenerative disease‐related neuropsychiatric symptoms: a Phase 3b study

AbstractBackgroundPatients with neurodegenerative diseases including Parkinson’s disease often experience neuropsychiatric symptoms, including hallucinations and delusions, apathy, and agitation.1,2 These symptoms can greatly impair daily function and lead to reduced quality of life and significant caregiver burden. These patients are generally elderly and often frail. Treatment options are limited, representing a substantial unmet need. Pimavanserin, a 5‐HT2A receptor inverse agonist/antagonist, is FDA‐approved to treat hallucinations and delusions associated with Parkinson’s disease psychosis.3 MethodThis Phase 3b, multicenter, randomized, double‐blind, placebo‐controlled, parallel‐group study evaluated the safety of pimavanserin (34 mg) versus placebo in frail adults and elderly patients with neuropsychiatric symptoms related to neurodegenerative disease. The primary endpoint was safety and tolerability as measured by treatment‐emergent adverse events. Secondary safety endpoints included change from baseline in motor (Extrapyramidal Symptom Rating Scale‐Abbreviated [ESRS‐A]) and cognitive function (Mini‐Mental State Examination [MMSE]) at Week 8. Suicidality was assessed using the Columbia‐Suicide Severity Rating Scale (C‐SSRS) or Global Clinician Assessment of Suicidality (GCAS). Exploratory efficacy endpoints included Clinical Global Impression‐Severity (CGI‐S) and ‐Improvement (CGI‐I), 5‐level version of EQ‐5D (EQ‐5D‐5L), and Sleep Disorders Inventory (SDI).ResultOverall, incidence of TEAEs were similar between pimavanserin (n = 392) and placebo (n = 392); 29.8% reported ≥1 TEAE (pimavanserin: 30.4%; placebo: 29.3%) and 1.8% reported serious TEAEs (pimavanserin: 2.0%; placebo: 1.5%) (Table 1). TEAEs leading to discontinuation or study termination were reported in 2.6% and 2.3% of patients on pimavanserin and placebo, respectively. The most frequently reported TEAEs included urinary tract infection (pimavanserin: 6.4%; placebo: 4.1%) and headache (pimavanserin: 2.0%; placebo: 3.8%). Mortality due to TEAEs was similar between groups (0.5% each). Pimavanserin did not impact motor‐ or cognition‐related function (ESRS‐A and MMSE, respectively); an improvement was seen in CGI‐I (MMRM LSM [SE]: ‐0.2 [0.07], p = 0.0140] and sleep function (SDI) at Week 8 (MMRM LSM [SE]: ‐0.3 [0.06], p&lt;0.0001] compared to placebo (Figures 1, 2); no differences were observed across other measures.ConclusionPimavanserin was well tolerated in patients with neuropsychiatric symptoms related to neurodegenerative disease, consistent with the known safety profile of pimavanserin, informing its use in Parkinson’s disease psychosis. Pimavanserin was not associated with cognitive decline or motor dysfunction.

Understanding the burden of mental and physical health disorders on families: findings from the Saudi National Mental Health Survey

ObjectiveTo assess prevalence and correlation of factors of family burden associated with mental and physical disorders in the general population of Saudi Arabia.Setting and participantsA secondary analysis of data from...

Tracheostomy in Severe Bronchopulmonary Dysplasia-How to Decide in the Absence of Evidence.

Infants with the most severe forms of bronchopulmonary dysplasia (BPD) may require long-term invasive positive pressure ventilation for survival, therefore necessitating tracheostomy. Although life-saving, tracheostomy has also been associated with high mortality, postoperative complications, high readmission rates, neurodevelopmental impairment, and significant caregiver burden, making it a highly complex and challenging decision. However, for some infants tracheostomy may be necessary for survival and the only way to facilitate a timely and safe transition home. The specific indications for tracheostomy and the timing of the procedure in infants with severe BPD are currently unknown. Hence, centers and clinicians display broad variations in practice with regard to tracheostomy, which presents barriers to designing evidence-generating studies and establishing a consensus approach. As the incidence of severe BPD continues to rise, the question remains, how do we decide on tracheostomy to provide optimal outcomes for these patients?

Caregiver Burden and Its Relationship to Health-Related Quality of Life in Craniopharyngioma Survivors.

Craniopharyngioma (CP) is a rare brain tumor associated with severe comorbidities that reduce survivor health-related quality of life (HRQOL). However, CP impact on caregivers is unknown. To measure caregiver burden and examine its relationship to survivor HRQOL and other determinants in CP. Eighty-two participants who self-identified as caregivers of CP survivors responded to an online survey including caregiver-reported Pediatric Quality of Life Inventory (PedsQL), and the Zarit Burden Interview (ZBI). Caregivers reported an average of 13 out of 29 health conditions in survivors following tumor treatment, including excess weight, hypopituitarism, fatigue, mood, cognition, social issues, temperature dysregulation, visual impairment, and sleep problems. Strikingly, 70% of survivors who experienced obesity also experienced hyperphagia. ZBI scores were moderate with a median of 37. PedsQL total scores were poor with a median of 46.2. ZBI scores were independent of caregiver level of education and care duration. Both scores were independent of income, survivor age, gender, age at diagnosis, or tumor recurrence. In contrast, both scores depended on the number (P < .001) and the type of survivor health problems, with significantly worse scores for caregivers or survivors with symptoms of hypothalamic dysfunction (P < .001) including hyperphagia but not obesity. PedsQL total scores significantly predicted ZBI scores (P < .001). Survivor poly-symptomatology predicted and incurred significant caregiver burden. Our study separated hyperphagia and obesity and identified hyperphagia and other hypothalamic dysfunction symptoms as understudied issues. Altogether, these findings draw particular attention to the unmet needs of CP survivors and their caregivers.

Real-World Health Care Services Utilization Associated With the Management of Patients With Relapsed and Refractory Multiple Myeloma in Spain: The CharisMMa Study

BackgroundMost patients with multiple myeloma (MM) relapse or become refractory, resulting in high health care costs. However, real-world data regarding the utilization of health care services among the relapsed/refractory MM (RRMM) population are scarce. MethodsObservational, cross-sectional, multicenter study of the utilization of health care services by RRMM patients who had relapsed within the previous 6 months in Spain in a real-world setting. Data were collected from the clinical records and during a single structured interview and included sociodemographic and clinical characteristics at last relapse, the treatment and health care services nature, and were presented using descriptive statistics. ResultsThe 276 patients enrolled (53.3% males), with a mean [SD] age of 67.4 [10.5] years, had experienced their most recent relapse a median (IQR) of 1.61 (0.74, 3.14) months before entering the study. Patients lived a median (IQR) of 9.0 (3.0, 30.0) km away from the hospital and visited the hospital a median (IQR) of 3.0 (2.0, 5.0) times/month to receive treatment for their most recent relapse. They spent a median (IQR) of 15.84 (5.0, 42.0) euros/month on transportation. Since their most recent relapse, most patients had been admitted to a hospital unit (n = 155, 56.2%), had required ≥1 diagnostic tests (n = 227, 82.2%), and had consulted the hematologist (n = 270, 97.8%) a mean (SD) of 5.5 (5.4) times. In half of the visits, patients were accompanied by an actively working caregiver (n = 112, 54.4%). ConclusionsRRMM treatments are associated with a high utilization of health care services and pose a significant burden for patients and caregivers. Trial registration numberNCT03188536

The influence of social alienation on maintenance hemodialysis patients' coping styles: chain mediating effects of family resilience and caregiver burden.

Research on the possible impact of social alienation, family resilience, and caregiver burden on the coping styles of Chinese patients on maintenance hemodialysis (MHD) is scarce. We explore the influence of social alienation, family resilience, and caregiver burden on the coping styles of MHD patients, both directly and indirectly. We invited 173 MHD patients and their primary caregivers for a cross-sectional study; the study using convenience sampling method at the hemodialysis center of the First People's Hospital of Foshan. The Chinese version of the generalized social of alienation scale, the Chinese version of the simplified coping style questionnaire, and a sociodemographic questionnaire were completed by the MHD patients, while their primary caregivers had filled out the Chinese family resilience assessment scale, the Chinese version of the Zarit caregiver burden interview, and provided socio-demographic information. SPSS macro program PROCESS v3.3 Model 6 were used for analyses of chain-mediated effects. In the mediating effects model, the direct influence of social alienation upon coping styles was significant (95% CI -0.050, -0.014), and social alienation indirectly impacted coping style by family resilience in a significant way (95% CI -0.012, -0.001) or caregiver burden (95% CI -0.013, -0.001). In addition, social alienation significantly impacted coping style by both family resilience and caregiver burden (95% CI -0.008, -0.001). Social alienation can exert both a direct and indirect influence on coping styles through the mediating factors of family resilience and caregiver burden. Clinicians can take interventions to strengthen family resilience and reduce caregiver burden, which may be useful in improving socially isolated behaviors and coping skills in MHD patients.

Tyrosine Kinase Inhibitors and their role in treating neovascular age-related macular degeneration and diabetic macular oedema.

The advent of intravitreal anti-VEGF injections has revolutionised the treatment of both neovascular age-related macular degeneration (nAMD or wet AMD) and diabetic macular oedema (DMO). Despite their efficacy, anti-VEGF injections precipitate significant treatment burden for patients, caregivers and healthcare systems due to the high frequency of injections required to sustain treatment benefit. Therefore, there remains an unmet need for lower-burden therapies. Tyrosine kinase inhibitors (TKI) are a novel class of drugs that may have considerable potential in addressing this issue. This review will summarise and discuss the results of various pilot studies and clinical trials exploring the role of TKIs in treatment of nAMD and DMO, highlighting promising candidates and possible challenges in developments.

SA36 Economic Burden of Esophageal Cancer: A Systematic Review of Global Evidence

Esophageal cancer (EC) is the sixth most common cause of cancer-related mortality, contributing to significant economic burden for patients and caregivers. Cost of illness studies, which are useful tools for policymakers, vary in the burden reported due to methodological differences. This study aims to systematically summarize available evidence on the economic burden of EC and describes the methods and data sources utilized.

Burden and Psychological Distress in Caregivers of Persons with Addictions

Addiction is a complex psychosocial problem that has significant psychosocial effects on family members. The aim of this study is to gain insight into the burden and psychological distress suffered by caregivers of drug abusers. Ninety-nine caregivers of hard drug addicts participated in this study. The test group consisted of 50 participants and the control group had 49 participants. The participants filled out the General Demographic Questionnaire; Caregiving and the Experience of Subjective and Objective Burden; SCL-90-R; and WHOQOL-BREF. Caregivers of addicts who were preparing to join the community exhibited a significantly higher objective burden, subjective burden, subjective stress burden and greater psychological distress in comparison to caregivers of addicts in the community, and their quality of life was poorer (p &lt; 0.001). The following showed to be risk factors for psychological distress: families with a greater number of children, marital, employment and economic status and duration of addiction. The protective factors were better quality of life, long-term marriage and higher education level of caregivers. Caring for addicts who are living with their families is a significant responsibility and burden for caregivers.

Assessment of caregiver burden prior to implantation of left ventricular assist device: A national survey

Guidelines recommend incorporation of caregiver burden assessment and list significant caregiver burden as a relative contraindication when considering left-ventricular assist device (LVAD) implantation. To assess national practices regarding caregiver burden assessment, in 2019 we administered a 47-item survey to LVAD clinicians using 4 convenience samples. Responses were obtained from 191 registered nurses, 109 advance practice providers, 71 physicians, 59 social workers, and 40 others representing 132 LVAD programs; 125 of 173 total United States programs were included in the final analysis. While most programs (83.2%) assessed caregiver burden, assessment was most frequently conducted informally during social work evaluation (83.2%), with only 8.8% incorporating validated measures of caregiver burden. Larger programs were more likely to use a validated assessment measure (OR 6.68 [1.33-33.52]). Future research should focus on how programs can standardize caregiver burden assessment and how the level of burden may impact patient and caregiver outcomes.

Caregiver burden and COVID-19: How epilepsy caregivers experienced the pandemic

IntroductionCaregivers of adults with epilepsy face unique challenges, yet most studies focus on the impact of epilepsy on those living with the condition, rather than the impact on caregivers. Our objective was to evaluate whether caregivers’ pandemic-related changes and experiences – namely those related to their health, healthcare access, and well-being – were associated with their caregiving burden. MethodsCaregivers of adults with epilepsy (n = 261) were recruited through Qualtrics Panels to participate in an online survey examining health, well-being, COVID-19 experiences, and caregiver burden from October-December, 2020. The burden was measured using the Zarit 12-item measure; the clinically significant burden was defined as a score greater than 16. Adjustments were made to account for burden scores related to exposures of interest. Chi-square tests, t-tests, and generalized linear regression models were used to compare cross-sectional associations between COVID-19 experiences and burden. ResultsOver half (57.9%) of caregivers had clinically significant caregiver burden. Most reported increased anxiety (65%), stress (64%), and sense of social isolation (58%) during the pandemic. Many caregivers reported that their sense of control over their life (44%) and their use of healthcare changed (88%) due to COVID-19. In adjusted models, caregivers who reported increased anger, increased anxiety, decreased sense of control, or changes in healthcare utilization during COVID-19 had about twice the odds of having clinically significant caregiver burden compared to caregivers who did not report changes. DiscussionChanges experienced by caregivers of adults with epilepsy during the pandemic were strongly associated with clinically significant levels of caregiver burden. These findings demonstrate the link between mass-level events, such as a pandemic, the burden caregivers of adults with epilepsy may carry, and subsequent psychological outcomes. ConclusionCaregivers of adults with epilepsy may need support to reduce the negative impact of COVID-19-related experiences and should be connected to healthcare and resources that can help alleviate their burden.

Predictors of caregiver burden in caregivers of individuals with traumatic or non-traumatic brain injury: A scoping review.

Caregivers of individuals with traumatic (TBI) or non-traumatic (nTBI) brain injuries are at risk of significant caregiver burden. Consequently, it is crucial to examine predictors of caregiver burden to enable early identification and intervention. To examine predictors of caregiver burden in caregivers of individuals with TBI/nTBI. A scoping review was conducted in the bibliographic databases PubMed, EMBASE (Ovid) and APA PsycInfo (EBSCO). Search terms included: 'acquired brain injur*', 'traumatic brain injur*', 'brain injur*', 'non-traumatic brain injur*', or 'stroke*' combined with 'burden', 'caregiver burden', 'perceived burden', or 'caregiver strain'. The search was limited to articles written in English and published in academic journals between 2000 and March 2022. EndNote was used to manage the references and identify duplicates. Twenty-four studies were included. Care recipient-related predictors of caregiver burden included more severe injuries, functional disabilities (including decreased physical and neuropsychological functioning), and worse mental health. Caregiver-related predictors included more time spent caregiving, worse mental health, and unmet needs. For several predictor variables, evidence was mixed or vague. The results highlight which caregivers are at risk of caregiver burden and point to several areas of potential intervention to prevent caregiver burden. Future research should explore the relationship between characteristics of the caregiver and caregiver burden, including coping style, problem-solving techniques, and personality, as these have been sparsely investigated and are potentially modifiable through intervention. Further research is needed to elucidate if burden can be prevented by interventions targeting caregivers at risk. Addressing these gaps may clarify the link between caregiver burden and predictor variables and assist in development of interventions that may prevent burden.

Orthotic Helmet Therapy for Deformational Plagiocephaly: Stratifying Outcomes by Insurance.

Deformational Plagiocephaly (DP) is commonly treated with cranial orthosis, or helmet therapy. A large, national study on the impact of insurance status on helmet outcomes is lacking. We assessed treatment outcomes for helmet therapy based on insurance status. This was a retrospective data analysis of patients referred to Cranial Technologies, Inc for helmet therapy between 2014-2020 across 21 states. There were a total of 211,417 patients referred for helmeting, of whom 141,513 received helmet therapy. Multivariate regression was used to assess the relationship of insurance status with post-treatment residual flattening, measured by cephalic index (CI) and cranial vault asymmetry index (CVAI), and treating provider rating of success. Patients with Medicaid were more likely to complete treatment with residual flattening measured by CI and CVAI when compared to patients with private insurance (OR: 1.58, CI: 1.51-1.65, p < 0.001 and OR: 1.21, CI: 1.15-1.28, p < 0.001, respectively). Providers of patients with Medicaid were more likely to give a low rating of success following treatment (OR: 3.25, CI: 2.70-3.92, p < 0.001). Our study investigating the impact of insurance status on helmet therapy across 21 states found that patients with Medicaid were more likely to experience residual flattening and have lower provider-rated outcomes compared to those with commercial insurance. Given significant caregiver burden posed by helmet therapy, which requires frequent visits and consistent helmet use, caregivers of patients with Medicaid may require greater support to reduce outcome disparities observed here.

Does Transitioning to a Brace Improve HRQoL After Casting for Early Onset Scoliosis?

Serial casting is favored for the initial treatment of early onset scoliosis (EOS), but there is concern about significant morbidity and caregiver burden. Studies have examined the utility of bracing as an alternative to casting, but little is known about differences in health-related quality of life (HRQoL) between treatments. We hypothesized that patients with a diagnosis of idiopathic EOS experience an improvement in HRQoL when transitioning from serial casting to bracing as measured by the 24-Item Early Onset Scoliosis Questionnaire (EOSQ). Subjects with idiopathic EOS were retrospectively identified from a multicenter database. EOSQ scores were compared before treatment, after index casting, after transition out of cast to brace, and at the most recent follow-up. Available major curve magnitudes were also compared during these time points. Data were compared using repeated-measures ANOVA with post hoc Bonferroni correction. Sixty-six subjects met the inclusion criteria. Thirty-seven (56%) subjects were male and the average age at the time of index treatment was 1.9 (0.37-6.4) years. The average follow-up was 3.2 (0.90-6.8) years. In 57 subjects, the major curve magnitude improved from a mean of 33 (CI 28-37) degrees before treatment initiation to 27 (CI 23-30) degrees after casting and to 24 (CI 20-29) degrees at the most recent follow-up. The HRQoL subdomain showed a significant decrease in HRQoL during casting treatment 75.7 (CI 72.9-78.5) from pre-index treatment 84.9 (CI 81.4-88.5), during brace treatment 84.8 (CI 81.8-88.0) and at most recent follow-up 87.0 (CI 83.6-90.3) ( P <0.001). The parental impact subdomain improved from the beginning to the end of treatment (77.7 to 87.7, P =0.001) (n=64). Satisfaction improved from casting to bracing (73.4 to 86.7, P <0.001) (n=63) and to the most recent follow-up (73.4 to 87.9, P <0.001). Patients treated with casting for EOS experience reversible declines in HRQoL. After patients transition from casting to bracing, EOSQ scores recover to pretreatment baseline levels and are maintained at follow-up. This information must be balanced with the effectiveness of treatment for EOS with either method and customized for each patient. Level III-retrospective comparative study.

DEMENTIA CARE COORDINATION FOR CAREGIVERS OF VETERANS DIAGNOSED WITH DEMENTIA: AN INNOVATIVE VA INITIATIVE

Abstract There are expected to be 335,425 Veterans with dementia by 2033. Dementia has a significant impact on families, especially caregivers. Caregivers often report high levels of stress and burden, which can cause them to develop physical and mental illness, impacting the care they provide to family members with dementia. In 2021, under a Veterans Health Administration (VHA) directive, the Bronx VA Geriatric Research, Education and Clinical Center developed a Dementia Care Coordination program, funded by the VHA Office of Rural Health sponsored Geriatric Scholars Program. Led by a Dementia Care Coordinator (DCC), who is also a clinical social worker, the program identified caregivers of Veterans with dementia who reported experiencing stress and burnout while caring for Veterans with dementia. The DCC provided support via telephone and VVC and also shared resources focused on stress reduction, relaxation techniques, and coping with grief. During 2021, 23 caregivers of diverse racial and ethnic backgrounds were enrolled in the program and 17 were found to have significant caregiver burden. Over 100 support calls were made on the topics of stress reduction, problem solving and community resources. Common problems reported by caregivers included sundowning, sleep problems, grief, and increased social isolation due to the COVID-19 pandemic. Caregivers showed a willingness to participate in the program, indicating that the information, resources and support provided by the DCC helped reduce their stress levels and allowed them to provide ongoing care. Recent program developments, findings from an IRB approved survey of participants, and expansion plans will be reported.