High Burden Of Care Research Articles

Pattern of Neonatal Admissions and Care Outcomes in Special Care Newborn Unit of Cox’s Bazar District Hospital, Bangladesh

Background: Neonatal morbidity and mortality contribute significantly to under‑five morbidity and mortality. A substantial reduction in neonatal mortality is therefore necessary to achieve the Sustainable Development Goals targets.
 Aims: Assessed the pattern of neonatal admission and care outcomes.
 Place and Duration of Study: Special Care Newborn Unit of Cox’s Bazar District hospital, Bangladesh conducted in September 2022.
 Methodology: Hospital-based retrospective study. Data extracted from the admission register and the records of 3982 newborns admitted between August 2021 and July 2022. Bivariate analysis using the Chi-square test, was performed to determine factors associated with neonatal mortality and p value was set at significant level of 5%.
 Results: 3982 neonates were admitted, 2426 (61%) were male and 1556 (39%) were female with1071 (27%) from the hospital and 2911(73%) from outside the hospital. Birth asphyxia was the commonest morbidity,49% followed by Low Birth Weight/prematurity (18%) and neonatal sepsis 17%. 3,225 (81.4%) of the neonates admitted survived while 538 (13.5%) died and 203(5.1%) were discharged against medical advice. There was significant association between birth weight, morbidity pattern and mortality p<0.05) with most deaths associated with prematurity/LBW. There was significant association between neonatal mortality and the place of delivery, death among outborn was 16% compared with 7% among inborn (p<0.05) but no significant association between neonatal mortality and gender.
 Conclusion: There was a high burden of neonatal care at the hospital and majority of causes of neonatal morbidity and mortality were preventable. There is need for holistic approach to pregnancy, delivery and newborn care to reduce neonatal morbidity and mortality in the district.

Caregiving for Foreign-Born Older Adults With Dementia.

This study examines how nativity, dementia classification, and age of migration (AOM) of older foreign-born (FB) adults are associated with caregiver psychological well-being and care burden. We used linked data from Round 1 and Round 5 of the National Health and Aging Trends Study and Round 5 of the National Study of Caregiving for a sample of nondementia caregivers (n = 941), dementia caregivers (n = 533), and matched care recipients. Ordinary least squares regression models were estimated, adjusting for caregiver characteristics. Relative to nondementia caregivers, dementia caregivers were more likely to provide care for an older FB adult (8.69% vs. 26.70%), reported more assistance with caregiving activities, worse quality of relationship with care recipients, and higher care burden than nondementia caregivers. In adjusted models, interactions of nativity status × dementia and AOM × dementia revealed that overall, caregivers of older FB adults with dementia who migrated in late life (50+) reported lower psychological well-being than those caring for older FB older adults who migrated at (20-49 years) and (0-19 years). Moderating effects of AOM on the link between dementia caregiving and care burden were not observed. Age of migration of older FB adults with probable dementia may have unique effects on the caregiver's psychological well-being. Our results underscore the importance of considering sociocultural factors of FB adults beyond nativity and the need for research to develop culturally appropriate interventions to enhance psychological well-being and reduce the care burden among dementia caregivers.

Benchmarking Paediatric Sickle Cell Care in Australia

Background: Sickle cell disease (SCD) is a severe, multisystem vasculopathy, associated with significant reduction in life expectancy, and high burden of care for patients/families and clinicians. Haematologists in Australia have observed an increase in numbers of children presenting for care with SCD in recent years that disproportionately affects migrant families with socio-economic challenge. Models of care for these patients in Australia are still evolving and there is a need for service benchmarking to define consensus best practice for service delivery. Key issues include access to affordable Hydroxyurea (HU) paediatric formulations, red cell exchange (RCE), antenatal/newborn screening policy and consideration of expanding indications for curative therapies (bone marrow transplantation). Aim: To survey aspects of health care service delivery for paediatric SCD at six specialist centres in Australia. Method: Lead clinicians at the six centres were surveyed to determine: basic demographics, availability of current treatment modalities, transfusion practices, service integration, care pathways and access to support services and transition services. Current challenges to optimal health care delivery were identified. Results: A total of 293 cases were identified. Variations in care included: inequity of funding for HU formulation, access to RCE as recommended transfusion method, screening protocols for stroke prevention, disease specific pain management pathways. Identified challenges to optimal care delivery were consistent across the centres, with common themes identified: difficulty accessing adequate support services (social work, mental health) and care co-ordinationinability to provide comprehensive care such as educational resources/neuropsychology testing (as is best practice in international centres)financial restrictions (variations in funding for paediatric formulations where HU is the only disease modifying therapy DMT available in Australia, liquid Hydroxyurea mixture is a special access product often requiring patient co-payment despite PBS coverage of capsules)limited networks of clinicians to provide multi-disciplinary care modelslack of designated transition pathways for young adults in some locations. Conclusion - This survey has identified key challenges in access to RCE, affordable HU formulations for children, as well as allied health support/care co-ordination for this disadvantaged population. We recommend the need for the development of consensus recommendations for standards of care for sickle cell services in Australia. These standards will provide a useful benchmark for advocacy and interactions with policymakers. Figure 1View largeDownload PPTFigure 1View largeDownload PPT Close modal

The Status of Facility Based Emergency Care in Public Hospitals of Ethiopia Using WHO Assessment Tool.

The availability of emergency care contributes to half of the total mortality burden in a low and middle income countries. The significant proportion of emergency departments in LMICs are understaffed and poorly equipped. The purpose of this study is to examine the status of emergency units and to describe the facilitators and barriers to the provision of facility-based emergency care at selected Ethiopian public hospitals. A mixed-methods explanatory design was used. Ten hospitals were purposively selected due to their high number of patients and referral service. A WHO facility assessment tool was used to quantitatively assess the facilities, and an in-depth interview with hospital and emergency room leadership was conducted. The quantitative results were descriptively analyzed, and the qualitative data was thematically analyzed. This survey included a total of ten hospitals. Three of the facilities were general hospitals, and seven were tertiary level hospitals. They all were equipped with an emergency room. All of the studied hospitals serve a population of over one million people. In terms of infrastructure, only 3/10 (30%) have adequate water supply, and alf (5/10) have telephone access in their ED. The qualitative resultshowedthat the most common barriers to emergency care delivery were prolonged patient stays in the emergency room, inadequate equipment, and a shortage of trained professionals. The status of emergency care in Ethiopia is still developing, and hospital care as a whole should improve to alleviate the high burden of care in emergency rooms and reduce morbidity and mortality.

Self-efficacy v kontextu zátěže neformálních pečovatelů

Self-efficacy in the context of the care burden of informal caregivers The aim was to search for and analyze published research dealing with self-efficacy and care burden in informal caregivers and to assess whether there is a relationship between self-efficacy and care burden. The source of the obtained data was licensed and freely available electronic databases. Based on the set criteria, 13 foreign studies published in the period 2010–2020 were included in the detailed analysis and subsequent processing. The results of the found studies have shown that lower self-efficacy is associated with a higher care burden, increased stress, and a higher incidence of depressive syndrome in informal caregivers. On the other hand, high self-efficacy is related to the well-being of caregivers and the quality of life of patients. Self-efficacy appears to be an important phenomenon in influencing the care burden and therefore it is necessary to support caregivers to increase their self-efficacy. Appropriately chosen training and education can increase self-efficacy in various areas of care. Cílem bylo vyhledat a analyzovat publikované výzkumy zabývající se self-efficacy a pečovatelskou zátěží u neformálních pečovatelů a posoudit, zda existuje vztah mezi self-efficacy a pečovatelskou zátěží. Zdrojem získaných dat byly licencované a volně dostupné elektronické databáze. Na základě stanovených kritérií bylo do podrobné analýzy a následného zpracování zařazeno 13 zahraničních studií publikovaných v období 2010–2020. Výsledky vyhledaných studií poukazují, že nižší self-efficacy souvisí s vyšší pečovatelskou zátěží, se zvýšeným stresem a s vyšším výskytem depresivního syndromu u neformálního pečovatele. Vysoké self-efficacy naopak souvisí s pocitem pohody pečovatele a zlepšením kvality života pacienta. Self-efficacy se jeví jako významný fenomén v rámci ovlivňování pečovatelské zátěže, a proto je nutné podporovat pečovatele ve zvyšování jejich self-efficacy. Zvýšit self-efficacy v různých oblastech péče mohou vhodně zvolená školení a edukace.

Quality of life in patients and caregivers after aneurysmal subarachnoid hemorrhage: a Flemish population study.

Background and aimsAneurysmal subarachnoid hemorrhages (aSAH) have high mortality and morbidity. However, the impact on Quality of Life (QoL) of patients remains poorly documented, and data on primary caregiver burden is even scarcer. MethodsThis is a single center, cross-sectional study performed at the Antwerp University Hospital, Belgium. We included aSAH patients during follow-up at the outpatient clinic and assessed the QoL, by using the Stroke Specific Quality of Life scale (SSQoL). Caregiver burden was evaluated by the Caregiver Strain Index (CSI). The aSAH severity and functional outcome (at 90 days) were assessed, respectively, by mFisher score and modified Ranking Scale (mRS). Statistical analysis was performed using SPSS version 27. ResultsIn total, 22 aSAH patients were included, on average 15.5 (range 4–45) months after the aSAH. The SSQoL score was 3.7 ± 0.7, with a mean psychosocial domain score of 3.2 ± 0.8 and physical domain of 4.2 ± 0.8. Psychosocial factors, especially decreased energy levels and cognitive impairment, had a negative impact on the QoL (p = 0.02 en p = 0.05). No association was found between QoL and mFisher, nor between QoL and mRS. Fifteen primary caregivers completed the CSI. Only 3 (20%) of them reported a high care burden (CSI > 6), although changes in daily life and personal plans were reported, respectively, by 73% (n = 11) and 67% (n = 10) of caregivers. We only found a correlation between the mFisher score and CSI (p = 0.01).ConclusionOur results emphasize that there is an important psychosocial impact on the QoL of patients after aSAH, and their primary caregivers. More research is warranted.Supplementary InformationThe online version contains supplementary material available at 10.1007/s13760-022-02085-x.

Burden of care among primary caregivers’ of spinal cord injury patients attending a tertiary care center in Eastern Nepal

BackgroundNepal is a resource-constrained country where primary caregivers of spinal cord injury (SCI) patients face increasing physical, social, emotional, and economic burdens. This study aimed to assess the level of primary caregiver burden and the association between caregiver burden and sociodemographic factors of SCI patients and their caregivers.MethodsThe burden of caregivers was evaluated in 71 primary caregivers through face-to-face interviews using the Zarit Burden Interview Scale (ZBI-22). Based on the total ZBI-22 score, caregiver burden was classified as little or no, mild to moderate, moderate to severe, and severe.ResultsThe mean caregiver burden score was 46.28 ± 12.05. Moderate to severe burden was more common (63.4%), followed by severe (18.3%), mild to moderate (11.3%), and little or no burden (7.0%). Caregivers were more worried about “what the future holds for patients (3.07 ± 1.22) and what should do more for patients (3.04 ± 1.01)”. Several sociodemographic factors, such as marital status (P = 0.009), activities of daily living (P = 0.038), monthly family income (P = 0.023), and time spent caring for patients (P = 0.028), were statistically significantly associated with the burden on primary caregivers.ConclusionsOur results showed that primary caregivers experienced a high burden of care, primarily related to fear and uncertainty about the patient’s future, patient’s dependency, caregiver exhaustion and finances. Several sociodemographic factors of patients and their caregivers were associated with the burden of the primary caregivers.

Perceived burden, psychological distress, and quality of life among family caregivers of individuals with schizophrenia

AbstractThis study assessed the burden, psychological distress and quality of life (QoL) of Malaysian family caregivers of outpatients with schizophrenia. Of the caregivers (N = 200), 49.5% reported a high burden of care. Higher psychological distress and burden correlated with lower QoL. Older, divorced/widowed, and lower educational level caregivers indicated lower physical QoL. Unemployed caregivers indicated lower mental QoL. There is a need to routinely assess these family caregivers for psychological distress and to provide psychoeducation and counseling.

Predictors of Decision Regret among Caregivers of Older Canadians Receiving Home Care: A Cross-Sectional Online Survey.

Background. In Canada, caregivers of older adults receiving home care face difficult decisions that may lead to decision regret. We assessed difficult decisions and decision regret among caregivers of older adults receiving home care services and factors associated with decision regret. Methods. From March 13 to 30, 2020, at the outbreak of the COVID-19 pandemic, we conducted an online survey with caregivers of older adults receiving home care in the 10 Canadian provinces. We distributed a self-administered questionnaire through Canada’s largest and most representative private online panel. We identified types of difficult health-related decisions faced in the past year and their frequency and evaluated decision regret using the Decision Regret Scale (DRS), scored from 0 to 100. We performed descriptive statistics as well as bivariable and multivariable linear regression to identify factors predicting decision regret. Results. Among 932 participants, the mean age was 42.2 y (SD = 15.6 y), and 58.4% were male. The most frequently reported difficult decisions were regarding housing and safety (75.1%). The mean DRS score was 28.8/100 (SD = 8.6). Factors associated with less decision regret included higher caregiver age, involvement of other family members in the decision-making process, wanting to receive information about the options, and considering organizations interested in the decision topic and health care professionals as trustworthy sources of information (all P < 0.001). Factors associated with more decision regret included mismatch between the caregiver’s preferred option and the decision made, the involvement of spouses in the decision-making process, higher decisional conflict, and higher burden of care (all P < 0.001). Discussion. Decisions about housing and safety were the difficult decisions most frequently encountered by caregivers of older adults in this survey. Our results will inform future decision support interventions.HighlightsThis is one of the first studies to assess decision regret among caregivers of older adults receiving home and community care services and to identify their most frequent difficult decisions.Difficult decisions were most frequently about housing and safety. Most caregivers of older adults in all 10 provinces of Canada experienced decision regret.Factors associated with less decision regret included higher caregiver age, the involvement of other family members in the decision-making process, wanting to receive information about the options, considering organizations interested in the decision topic, and health care professionals as trustworthy sources of information. Factors associated with more decision regret included mismatch between the caregiver’s preferred option and the decision made, the involvement of spouses in the decision-making process, higher decisional conflict, and higher burden of care.

The effect of motor and functional independence of disabled children on musculoskeletal disorders in pediatric caregivers: A cross-sectional study

Background/Aim: There are conflicting results regarding the effect of motor and functional independence levels of disabled children on the burden of care. In addition, this burden, as well as musculoskeletal problems of pediatric caregivers, has not been examined in detail. The aim of this study is to examine the effects of motor and functional levels of the disabled child.&#x0D; Methods: The study was planned as a single-blind, multicenter, cross-sectional study. Children between ages 1-12 with physical disabilities from various problems, and 65 caregivers over the age of 18 who cared for them for at least 6 months, were included. Caregivers were divided into two groups, as per the BAKAS Caregiver Impact Scale score as high care burden (n = 33) or low care burden (n = 32). The motor level of the disabled child was determined by the Gross Motor Function Classification System, and the functional level of the Pediatric Functional Independence Measurement. The Nordic Musculoskeletal Questionnaire was used to evaluate musculoskeletal problems in caregivers.&#x0D; Results: There was no significant difference between the Gross Motor Function Classification System levels of children in groups (P &gt; 0.05). The Pediatric Functional Independence Measurement scores of children in the high care burden group were significantly lower than those in the low care burden group (P &lt; 0.05). According to a comparison of pain in parts of the body for 12 months, using the Nordic Musculoskeletal Questionnaire, the percentage of pain in the neck, shoulder, back, elbow, hand, hip, and foot regions of caregivers was significantly higher in the group with a high care burden (P &lt; 0.05). There was no significant difference between percent of low back and knee pain in the last 12 months (P &gt; 0.05). A weak positive correlation was found between the BAKAS Caregiver Impact scores and the Pediatric Functional Independence Measurement of children with disabilities (r = 0.26; P = 0.03).&#x0D; Conclusion: The lower functional level of the disabled child may cause an increase in caregiver burden of both the caregivers and musculoskeletal disorders.

Long-term Follow-up of Bilateral Cleft Lip and Palate: Incidence of Speech-Correcting Surgeries and Fistula Formation.

While bilateral cleft lip and palate (BCLP) constitutes a clinical challenge for the whole cleft team, the ideal surgical protocol remains obscure. This study presents the long-term burden of care in terms of secondary surgeries, defined as fistula repair and speech-correcting surgeries (SCS), in a single center. Outcomes of two surgical protocols utilized over the years were also compared. A retrospective single-center analysis of 81 non-syndromic children with complete BCLP born between 1990 and 2010. Two surgical protocols comprising single-stage and two-stage (delayed hard palate closure) procedures were compared. Outcome was analyzed at the time of alveolar bone grafting (ABG) and post-ABG. Altogether 54 children (66.7%) had underwent secondary surgery by the time of bilateral ABG. At this point, 38.3% (n = 31) of patients had received SCS and 49.4% (n = 40) had undergone fistula repair. The corresponding incidences at the end of follow-up were 46.9% (n = 38) and 53.1% (n = 43). No significant difference emerged in SCS incidence between the 2 protocols; however, prior to ABG the single-stage protocol had a significantly lower need for fistula repair. Regarding the location of fistulas, some differences were observed, with the single-stage procedure more associated with anterior fistulas. BCLP has a high surgical burden of care in terms of secondary surgeries, defined as SCS and fistula repair. In our experience, the single-stage protocol, particularly the two-flap technique, offers better results in the management of BCLP than the two-stage approach with a short delay in hard palate closure.

Care burden and associated factors in caregivers of children with cancer

BackgroundEvidence suggests that many parents who care for their children with cancer are affected by the care burden due to the chronic nature of the disease. The aim of this study was to determine the burden of care level and its related factors in the caregivers of children with cancer.MethodA total of 270 caregivers of children with cancer were included in this cross-sectional study by convenience sampling method. Data collection tools were a personal information form and the Novak & Guest’s Caregiver Burden Inventory. Data were analyzed by descriptive and inferential statistics (chi-square and univariate linear regression model).ResultsThe mean ages of caregivers and patients were 35.7 ± 7.0 and 3.1 ± 1.6 years, respectively. The mean care burden was 68.4 ± 1.5 out of 120. About 50 and 36% of caregivers had moderate and severe care burden, respectively.ConclusionCaregivers had moderate to high care burden. A number of factors associated with care burden were identified. Health authorities need to take family-centered measures to reduce the burden of caregivers.

Geriatric surgical service interventions in older emergency general surgery patients: Preliminary results.

Older adults comprise an increasing proportion of emergency general surgery (EGS) admissions and face high morbidity and mortality. We created a geriatric surgical service with geriatric and palliative expertise to mitigate risks of hospitalization most hazardous to older patients. We sought to identify geriatric surgical service interventions most relevant to EGS patients. We prospectively identified patients ≥75 years admitted to the EGS service at an urban tertiary care hospital from January 2020-March 2021 who screened positive for frailty (FRAIL score ≥3 [scale 0-5, higher being worse]) or with cognitive impairment. A pilot geriatric surgical service, led by a dually-board certified geriatric and palliative care specialist, conducted a comprehensive geriatric assessment and modified Rockwood Frailty Index calculation for each eligible patient. Patient, hospital admission, and geriatric consultation characteristics were collected via chart review. Fifty consecutive patients (median age 82 years [IQR 78-90], 56% female) received geriatric consultation (median time 3 days [IQR 1-6] from admission). The most common admission diagnosis was bowel obstruction (32%). Sixty-four percent of patients underwent ≥1 surgical procedure. Using the Frailty Index, 64% were moderately or severely frail. Interventions most frequently performed by the geriatric team included delirium prevention and management (66%), consideration of swallowing function (52%), individualized pain management (50%), and facilitation of serious illness conversations (58%). Geriatric service involvement addresses a high burden of both geriatric and palliative care needs in older EGS patients. Geriatric recommendations may direct interventions for surgical education in fundamental geriatric and palliative care knowledge to maximize geriatric resources for the most high-risk patients.

Financial burden for families of children with type 1 diabetes: a cross-sectional survey from North India.

IntroductionType 1 diabetes (T1D) incurs substantial out-of-pocket expenses (OOPE) on insulin and diabetes-related supplies. The information on OOPE is scarce from low- and middle-income countries. We aimed to estimate annual OOPE for children with T1D attending our diabetes clinic located in North India.MethodsAn online survey was conducted among parents of 380 children with T1D (mean age: 10.3 ± 4.6 years). Modified BG Prasad scale was used to estimate the socioeconomic status (SES).ResultsThe mean duration of T1D was 3.6 ± 2.6 years; 54.9% of children were boys. The median HbA1c (IQR) was 7.9% (5–15%). 51.9% belonged to lower or lower-middle SES. Mean annual spending on glucose monitoring, insulin administration, and laboratory investigations were Indian Rupee (INR) 21,576, INR 28,965, and INR 5069, respectively (total INR 55,185, IQR: 26,575–105,027). The cost of a single visit to the doctor was approximately INR 2889. Thirty children required hospitalization during the last year, which costs INR 27,495 on average. 30.3% had more than 50% of their total family income spent on diabetes care, with a significant negative correlation with their SES (r = – 0.738, p = 0.00). Only 11.6% were receiving financial support from any agency. 36.6% of families had to borrow money; the OOPE exceeded income from all sources in 8.2% of families.ConclusionsThere is a high financial burden of T1D care for North Indian children, almost on the verge of losing sustainability. Further studies are warranted to furnish larger OOPE data to guide policy decisions aimed at reducing direct costs to patients.

Burden of care and quality of life in caregivers of children and adolescents with autism spectrum disorder.

Autism spectrum disorder is a neurodevelopmental disorder which is increasing across the globe. The disorder in children not only creates burden of care in caregivers but also leads to impaired quality of life of families. To study the burden of care and quality of life in caregivers of children and adolescents with ASD. Cross sectional study conducted in Child and Adolescent psychiatry outpatient services at a government centre in north India between September 2014 to August 2015. The sample consisted of 40 caregivers of children with Autism. Mean age of the caregiver's were 34.72±6.32 years. Burden of care and quality of life were measured by Burden Assessment Schedule (BAS) and World Health Organization Quality of Life Instrument, Short Form (WHOQOL-BREF) questionnaire respectively. Mean burden of care on BAS was 71.73±8.62 indicating quite a high degree of burden on the caregivers of ASD. Significantly higher burden was reported by caregivers belonging to low income families and caregivers of children in age group 6-12 years. A positive correlation was observed between severity of autism and burden of care in caregivers. The study also found that as the severity of symptom increases the QoL in caregiver worsens. Caregivers of children with ASD suffer from high burden of care and impaired QoL.

The Burden of Care and Its Predictors in Severe Mental Illness: a Follow-up One Year after Hospital Discharge

Individuals with severe mental illness usually require informal care, which is frequently underestimated. There is much data on medical costs and outcomes of psychiatric care but less research on informal caregiving and its role in measuring recovery. This paper presents the results of an observational, crosssectional study that follows up on individuals with schizophrenia and affective disorders and their caregivers in an outpatient setting one year after hospital discharge. The burden of informal care is evaluated with the Burden Assessment Scale (BAS) as a primary outcome measure and hours spent in care and financial aspects of informal caregiving. One hundred and five individuals with mental illness (50 with schizophrenia and 55 with affective disorder) and 105 carers are followed up one year after hospital discharge. The time spent in informal care has decreased (p &lt; .001) with 1.4 hours per day for both diagnostic groups and is 4.4 hours per day for schizophrenia and 2.5 hours per day for affective disorders (p = .005). The monthly financial support is 203 Euro and 192 Euro, respectively (p = .373). The mean BAS score has decreased by 8.1 points for schizophrenia and 8.6 points for affective disorders (p = .412). While showing a statistically significant decrease in outpatient setting compared to inpatient setting, the burden of care at follow-up is still substantial. Statistically significant predictors of a high burden of care (measured by total BAS score) are patient’s severity of illness (p = .019), history of threats (p = .004), time spent in informal care (p &lt; .001), the stigma of mental illness (p &lt; .001), and younger caregiver (p = .030)

Caregiver Burden in Caregivers of Children With Special Health Care Needs and Association With Chronic Pain.

Chronic noncancer pain (CNCP) affects millions of individuals in the United States but evidence of its prevalence among caregivers of children with special health care needs is sparse. We sought to estimate the prevalence of CNCP and its association with caregiver burden, in a nationally representative sample. Retrospective cross-sectional study using pooled Medical Expenditure Panel Survey data for 2010-2015. Within interviewed households, family groups consisting of at least 1 parent and 1 child (0-17 y) were identified. CNCP was identified by one or more International Classification of Diseases, Ninth Revision (ICD-9)-CM codes utilizing previously published approaches. Level of caregiver burden was defined using a validated screener questionnaire identifying children with high burden of care (ie, special health care needs), for example, high or low burden. We estimated prevalence of CNCP as a function of caregiver burden, as well as the association of risk factors with CNCP, including parent sociodemographic features, clinical diagnoses, and family level characteristics. We identified 46,525 caregivers of whom 3.6% reported experiencing high caregiving burden. The prevalence of CNCP was 25.5% and 14.0% among parents with high compared with low caregiving burden, respectively. Odds of CNCP were higher among parents with high compared to those with lower caregiver burden (odds ratio=1.29, 95% confidence interval=1.06-1.55). Being obese, experiencing disability, and having a mental health diagnosis were associated with higher odds of CNCP. Chronic pain is more common among caregivers with high caregiver burden. Our findings highlight the need to further explore the nature and impact of risk factors on caregiver health and disability.

ADAMTS13 Autoantibodies and Burden of Care in Immune Thrombotic Thrombocytopenic purpura: New Evidence and Future Implications.

The introduction Caplacizumab in the management of Immune thrombotic thrombocytopenic purpura (iTTP) has raised different questions, considering its cost-efficacy and the optimal immunosuppressive treatment (IST) to associate. A retrospective multicenter collection of 42 first iTTP cases was conducted to identify variables associated with a higher burden of care and necessity of an implemented IST with early Rituximab (RTX) rescue. A significant correlation resulted between ADAMTS13 inhibitors (ADAMTS13inh) at diagnosis with total plasma exchange (PEXtot) and PEX needed to achieve clinical response (PEXtoCR, r = 0.46; r = 0.48), along with age (r = - 0.31; r = -0.35), platelet count (r = -0.30; r = -0.30), LDH (r = 0.44; r = 0.41) and total bilirubin (r = 0.54; r = 0.35). ADAMTS13inh also correlated with number of days of hospitalization (DoH, r = 0.44). A significant difference was observed in terms of median ADAMTS13inh titer at diagnosis in patient treated with RTX rescue and those responding to only steroid treatment. Thus, ADAMTS13inh titer resulted a marker of iTTP burden of care, associated with higher number of PEXtot, PEXtoCR, DoH and higher probability of needing RTX rescue to achieve clinical response and could be a useful tool for management of new iTTP cases and an interesting variable to optimize iTTP cases stratification in future Caplacizumab cost-efficacy analysis.

The Moderation Role of Neuroticism for Anxiety among Burdened Dementia Caregivers: A Study on Care Giver-Recipient Dyads

ABSTRACT Caregiving burden proves to be a risk factor of anxiety disorders and anxiety affection. The current study investigates how an endogenous personality dimension – neuroticism – moderates the association between caregiving burden and anxiety affection. Between 2015 and 2017, the study deployed a cross-sectional survey of 674 (response rate = 89%) older adults who were hospitalized for dementia at two hospitals. From all primary caregivers of these patients, 661 agreed to participate in the survey which yielded 661 matched dyads as the final sample. Caregiving burden, neuroticism, and anxiety affection were each measured by established assessment instruments. We employed multivariate OLS regression to test the moderator and regressor effects. We found that care burden is a significant risk factor of higher levels of anxiety affection (β = .17, p < .001), and accounts for 4.6% of the variance in anxiety. Neurotic personality is also significantly associated with a greater level of anxiety (β = .26, p < .001). Neurotic personality moderates the association between anxiety and care burden (β = .24, p < .001). Our findings suggest that social and healthcare workers should assess caregiver personality and burden as well as provide support, resources, and coping strategies to those with neurotic personality traits or high care burden in an effort to reduce anxiety among caregivers.

Predictors of Sleep Among Spousal Care Dyads Living With Chronic Conditions

Systematic screening improves delirium detection among hospitalized older adults. This poster describes the development and pilot testing of an iOS-based app that incorporates the Ultra-Brief Confusion Assessment Method (UB-CAM), a two-step, delirium detection protocol that combines the UB-2 (2-item screener) and 3D-CAM. Previous work tested a RedCAP-based UB-CAM app in 527 patients with 399 physicians, nurses, and certified nursing assistants (CNAs) showing it can be successfully completed by all three disciplines in 97% of eligible patients in 80 seconds on average with over 85% accuracy relative to a gold standard. To improve accessibility to the clinical setting, our research team now collaborated with a computer scientist to develop and refine an iOS-based UB-CAM app for the iPhone and iPad through iterative “laboratory” testing. The app was piloted by non-clinician, research testers in hospitalized older adults (age x̄ =83, SD= 8.0) with dementia (Clinical Dementia Rating Scale x̄ =1.1, SD= .30); 64% were assessed to be delirium positive. The app demonstrated preliminary efficiency (90 seconds on average), high acceptability (100% satisfaction of users), and reliability (100% inter-rater). This project underscores the need for close collaboration between researchers, clinicians, and computer scientists with iterative testing of bedside-facing apps prior to testing with patients. Next steps include testing effectiveness in a pragmatic trial with clinician users (physicians, nurses, CNAs), integrating the UB-CAM app into the routine hospital care of all older patients. Having rapid, accurate bedside delirium detection has the potential to transform care.