Caregiver Quality Research Articles

Mortality across the Alzheimer’s disease clinical stages: An analysis using the U.S. National Alzheimer’s Coordinating Center Uniform Data Set

AbstractBackgroundUnderstanding mortality risk across the Alzheimer’s disease (AD) clinical stages is essential for resource planning and estimating the value of disease modifying therapies (DMTs), which may slow progression. Such studies are lacking.MethodThe study used the Uniform Data Set of the National Alzheimer’s Coordinating Center (NACC) from September 1, 2005 to March 1, 2021 to assess mortality risk across the AD clinical stages. It included 12,414 participants aged ≥ 50 years, who contributed to the following stages: cognitively unimpaired (CU n = 11,458), incident prodromal AD (n = 937), and AD dementia (n = 745). AD etiology and stage were established based on clinical evaluation and cognitive, behavioral, and functional scores. Study centers report mortality for actively followed participants. Participants contributed observation time until all‐cause death, disease progression, discontinuation, loss to follow‐up, data cutoff or the last visit before a longer than 36‐month gap in visits or recorded scores.Hazard ratios for each AD stage versus CU were estimated using Cox proportional hazards models. Least absolute shrinkage and selection operator facilitated final predictor selection.ResultParticipants’ mean age (SD) at study entry was 71.0 years (SD 9.2) (34.9% males). Participants with incident mild, moderate, and severe AD had increased mortality risk relative to CU after controlling for age, sex, education, apolipoprotein E ε4 genotype status, BMI, and residence type. Relative all‐cause mortality risk by AD stage decreased with increasing age; the HRs (95% CI) for mortality at 65 years of age were 6.7 (2.7‐16.9), 14.8 (8.8‐24.8), and 30.1 (16.7‐56.8) for mild, moderate and severe AD respectively; at 80 years of age, the corresponding HR (95% CI) were 2.4 (1.7‐3.3), 3.1 (2.4‐3.9), and 6.6 (4.8‐9.1). Male sex (HR = 1.75, 95% CI 1.52‐2.04) and residing in an institution (vs. private residence; HR = 3.11, 95% CI 2.28‐4.25) significantly increased relative all‐cause mortality risk.ConclusionRelative all‐cause mortality risk increases with AD severity, and more so at younger ages. Despite data limitations, findings are significant as efforts to delay disease, for instance with DMTs, could not only improve patient and caregiver quality of life and reduce costs, but also extend the lives of patients with AD.NIA/NIH Grant U24 AG072122 funds the NACC database.

Paid Family Caregiving for Children With Medical Complexity.

We evaluated Colorado's paid family caregiver certified nursing assistant (CNA) program by assessing stakeholders' perceptions of the model's strengths and potential areas for improvement. A professional bilingual research assistant conducted key informant interviews of English- and Spanish-speaking certified nursing assistant (CNA) family caregivers (FCs), primary care providers, and pediatric home health administrators of children with medical complexity in the family caregiver CNA program. Interview questions focused on the program's benefits, drawbacks, and implications for the child and caregiver's quality of life. Transcripts were coded and analyzed, and themes summarizing program benefits and disadvantages were identified. Semistructured interviews were completed by phone with 25 FCs, 10 home health administrators, and 10 primary care providers between September 2020 and June 2021. Overall, the program was highly valued and uniformly recommended for prospective families. Perceived benefits included: (1) fulfilling the desire to be a good parent, (2) providing stable and high-quality home health care, (3) benefitting the child's health and wellbeing, and (4) enhancing family financial stability. Perceived drawbacks included: (1) FCs experiencing mental and physical health burdens, (2) difficult access for some community members, (3) extraneous training requirements, and (4) low program visibility. Given the perceived benefits of the family CNA program, the model may be considered for future dissemination to other communities. However, additional research and program improvements are needed to help make this a more equitable and sustainable home health care model for children with medical complexity.

The correlation between caregiver burden with depression and quality of life among informal caregivers of hemodialysis and thalassemia patients during the COVID-19 pandemic: a cross-sectional study

BackgroundLifelong provision of care to chronically ill patients increase the risk of physical and mental diseases in informal caregivers and adversely affects their quality of life. The present study examined the correlation between caregiver burden, depression, and quality of life among the informal caregivers of thalassemia and hemodialysis patients during the COVID-19 pandemic in southeastern Iran.MethodsThis cross-sectional correlational study used convenience sampling to select 200 informal caregivers involved in providing direct care for patients undergoing hemodialysis (n = 70) and patients with thalassemia (130) for at least 6 months. A demographic questionnaire, Beck’s Depression Inventory (BDI), the Quality-Of-Life Questionnaire (SF-36), and the Zarit Burden Interview were used to collect data in 2021. The data were analyzed with SPSS software (version 19) using frequency, percentage, independent samples t-test, ANOVA, and multivariate regression analysis.ResultsMost of the informal caregivers of the thalassemia and hemodialysis patients (58% and 43%) reported moderate levels of caregiver burden. There were significant correlations between the caregiver burden and depression (P < 0.0001) and between the caregiver burden and the quality of life (P < 0.009). The level of depression in informal caregivers of patients undergoing hemodialysis was higher than that of the informal caregivers of patients with thalassemia, but the quality of life in the informal caregivers of the patient’s undergoing hemodialysis was higher than that of the informal caregivers of the patients with thalassemia.ConclusionConsidering the significant correlations between caregiver burden, depression, and quality of life in this study, healthcare providers are recommended to develop educational and supportive interventions to meet informal caregivers’ needs, mitigate their emotional distress, fears, and concerns, and prevent caregiver burden in times of greater uncertainty.

Leisure, Employment, Community Participation, and Quality of Life in Primary Caregivers of Autistic Children: A Qualitative Study

PurposeIn prioritising the needs of their autistic children, parents often modify their own participation across leisure, social, and workforce activities. Few studies have examined the impact these modifications have on caregiver quality of life (QoL). The aim in the current study was to examine how parenting their autistic child/ren impacts parent’s participation and QoL.MethodsTwenty primary caregivers (29–48 years, all female) of autistic children (7–11 years) were interviewed online about their participation in leisure, community, and employment activities including the impact of COVID-19.ResultsFive themes with underlying subthemes were identified using reflexive thematic analysis. The themes were: (1) Reflecting on the important things in life, (2) Getting access to everything needed, (3) Barriers to participation in meaningful activities, (4) Facilitators of participation in meaningful activities, and (5) Participation through the COVID-19 pandemic.ConclusionThe findings highlight the importance of regular participation in meaningful activities for parents of autistic children and the support needed by them, particularly single parents, to achieve balance between meeting caring responsibilities and their own participation needs.

Secure attachment predicts lower societal cost amongst severely antisocial adolescents

BackgroundSocial and economic costs associated with antisocial behaviour are well-established, but little is known about the potential costs savings/benefits of secure attachment in this high-risk group. We aimed to provide the first test of attachment quality as a distinct predictor of economic costs.Methods111 adolescents (10–17 years of age, M = 15.0, SD = 1.6; 71% male) referred to young offender services due to high levels of antisocial behaviour were included. Costs were measured by detailed service-use interview, and attachment security to mother and father elicited through the Child Attachment Interview. The level of antisocial behaviour and callous-unemotional traits were assessed. Cost predictors were calculated using generalised linear models.ResultsMean 12-months service costs were £5,368 (sd 5,769) per adolescent, with justice system and educational service costs being the main components. After adjusting for covariates, economic costs were predicted by attachment quality to fathers, with a difference of £2,655 per year between those with secure (£3,338) versus insecure attachment (£5,993); significant cost effects were not found for attachment quality to mothers. Higher levels of callous-unemotional traits, lower verbal IQ, higher levels of antisocial behaviour, and older age were also significant cost predictors.ConclusionsSecure attachment to fathers is a predictor of reduced public cost in adolescents with severe antisocial behaviour. This novel finding for severely antisocial youth extends previous findings in less antisocial children and underscores the public health and policy benefits of good caregiving quality and the value of population-level dissemination of evidence-based interventions that improve caregiving quality.

Quality of Life and Emotional Health of Stroke Survivors and Caregiver After Stroke Camp (P11-5.031)

<h3>Objective:</h3> To assess the impact of stroke camp on stroke survivors and caregiver emotional health and quality of life. <h3>Background:</h3> Stroke survivors and caregivers, “stroke unit”, face untold hurdles. Physical disability can limit quality-of-life leading to depression. Following acute care and rehabilitative epoch, “stroke units” have little opportunity for shared experiences with other similar units. Stroke camps were developed to share solutions for problems encountered by “stroke units” and to develop support networks. Stroke camp’s effect on stroke survivors and caregiver is incomplete. <h3>Design/Methods:</h3> Stroke survivors and their caregivers registered for stroke camp completed a Beck’s Depression Inventory within the month prior to and the month following camp. An SSQOL (stroke patients) or SF-36 questionnaire (caregivers) were also completed. “Stroke units” not participating in camp were used as controls. <h3>Results:</h3> 28 participants were enlisted; 7 stroke survivors attending camp along with their 7 caregivers and 7 “stroke units” declining camp. Completion rate was suboptimal especially in “stroke units” not attending. The camp did not have a statistically significant effect on BDI or QOL for survivors although higher QOL and lower BDI scores were seen. Caregivers’ emotional health fared best with reduction in BDI approaching significance (p= 0.07). Demographic analyses revealed that stroke survivors with higher education had a significantly higher quality of life than those with lower levels (p&lt; 0.05). Gender and race had no effect on outcomes. <h3>Conclusions:</h3> Stroke units face multiple hurdles that can profoundly affect quality-of-life and emotional health. Stroke camps developed to improve these within “stroke units” insignificantly improved the emotional health and QOL of stroke survivors and even more so their caregivers. This pilot study’s design should be applied to a larger sample size powered to conclude with a high certainty whether stroke camps assist “stroke units” willing to participate with QOL and emotional well-being. <b>Disclosure:</b> Dr. Zaheer has nothing to disclose. Mr. Langston has nothing to disclose. Prof. Fowler has nothing to disclose. Dr. Hanna has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for MCG part of Hearst Health Network. Dr. Hanna has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for Attorney General State of Ohio.

Correlates of Fluctuations in Moderate-Advanced Dementia with Lewy Bodies (P13-6.007)

<h3>Objective:</h3> To assess correlates of fluctuations in moderate-advanced dementia with Lewy bodies [DLB]. <h3>Background:</h3> Cognitive fluctuations (spontaneous episodic deficits in attention, arousal, cognition, and behavior) are a core DLB feature, but remain poorly understood. <h3>Design/Methods:</h3> The PACE-DLB study collected measures of Lewy body disease, demographics, and patient and caregiver experiences from moderate-advanced DLB individual-caregiver dyads. Fluctuations were assessed via the Mayo Fluctuations Scale (MFS, range 0–4) and Clinician Assessment of Fluctuation (CAF, range 0–16). Concordance was assessed using Spearman correlation for raw scores and Cohen’s Kappa for assessing scores above/below the cut-off. Nonparametric methods including Spearman correlation, two-sample Wilcoxon test, and odds ratios assessed factors associated with fluctuations. The FDR method corrected raw scores for multiple testing. <h3>Results:</h3> Patients (n=137) identified as white non-Hispanic (94.9%) and male (79.6%); mean age 75.0 (SD 8.0), disease duration 3.0 years (SD 2.4). Caregivers were typically wives (72.3%) and daughters (13.1%). On the MFS, 116 participants (84.7%) had fluctuations (score ≥3) (mean 3.3, SD 0.8) versus 116 (84.7%) on the CAF (score &gt;0) (correlation: 0.2, p&lt;0.001; fluctuations absent/present: 0.3, p=0.002). The mean CAF score was 8.8 (SD 6.6). Variables associated with a positive MFS included higher sleepiness scores (p=0.02), lower QoL-AD scores (p=0.02), and parkinsonism (p=0.02). No variables associated with a positive CAF. Higher MFS scores associated with higher sleepiness scores (p&lt;0.001), lower QoL-AD, and more autonomic symptoms (p=0.03). Higher CAF scores associated with higher Neuropsychiatric Inventory severity scores (p&lt;0.0001), hallucinations (p=0.045), orthostatic hypotension (p=0.02), more comorbidities (p=0.04), and higher sleepiness scores (p=0.045). Fluctuations associated with worse patient and caregiver quality of life and higher caregiver burden and depression. <h3>Conclusions:</h3> The MFS and CAF correlated weakly. Fluctuations associated with sleepiness, autonomic symptoms, parkinsonism, and neuropsychiatric symptoms. Given the impact of fluctuations on quality of life and caregiver burden and depression, fluctuations are an important target for future pharmacologic therapies. <b>Disclosure:</b> Dr. Tholanikunnel has nothing to disclose. Mr. LaBarre has nothing to disclose. Ms. Sovich has nothing to disclose. Li Zhigang has nothing to disclose. James Galvin has nothing to disclose. Dr. Paulson has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for Exicure. The institution of Dr. Paulson has received research support from National Institutes of Health. Dr. Paulson has a non-compensated relationship as a Member, Nominating committee with American Neurological Association that is relevant to AAN interests or activities. An immediate family member of Dr. Maixner has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Law office . The institution of Dr. Manning has received research support from Department of Defense. The institution of Dr. Fields has received research support from National Institutes of Health. The institution of Dr. Fields has received research support from Patient-Centered Outcomes Research Institute. Ms. Lunde has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Mayo Clinic . Dr. Boeve has received personal compensation in the range of $10,000-$49,999 for serving as an officer or member of the Board of Directors for Rainwater Charitable Foundation. The institution of Dr. Boeve has received research support from Alector. The institution of Dr. Boeve has received research support from GE Healthcare. The institution of Dr. Boeve has received research support from Transposon. The institution of Dr. Boeve has received research support from Cognition Therapeutics. Dr. Boeve has received publishing royalties from a publication relating to health care. Ms. Forsberg has nothing to disclose. Angela Taylor has received personal compensation for serving as an employee of Lewy Body Dementia Association . The institution of Dr. Armstrong has received research support from National Institute of Aging. The institution of Dr. Armstrong has received research support from Florida Department of Health. The institution of Dr. Armstrong has received research support from Lewy Body Dementia Association. Dr. Armstrong has received research support from Parkinson Foundation. Dr. Armstrong has received personal compensation in the range of $5,000-$9,999 for serving as a DSMB member with Alzheimer’s Clinical Trials Consortium. Dr. Armstrong has received personal compensation in the range of $5,000-$9,999 for serving as a DSMB member with Alzheimer’s Disease Cooperative Study. Dr. Armstrong has a non-compensated relationship as a Member, Scientific Advisory Council with Lewy Body Dementia Association that is relevant to AAN interests or activities.

Social determinants of health influence preschool and caregiver experiences during symptoms and exacerbations of wheezing

BackgroundSocial determinants of health have been inadequately studied in preschool children with wheezing and their caregivers but may influence the care received. ObjectiveTo evaluate the symptom and exacerbation experiences of wheezing preschool children and their caregivers, stratified by risk of social vulnerability, over 1 year of longitudinal follow-up. MethodsA total of 79 caregivers and their preschool children with recurrent wheezing and at least 1 exacerbation in the previous year were stratified by a composite measure of social vulnerability into “low” (N = 19), “intermediate” (N = 27), and “high” (N = 33) risk groups. Outcome measures at the follow-up visits included child respiratory symptom scores, asthma control, caregiver-reported outcome measures of mental and social health, exacerbations, and health care utilization. The severity of exacerbations reflected by symptom scores and albuterol use and exacerbation-related caregiver quality of life were also assessed. ResultsPreschool children at high risk of social vulnerability had greater day-to-day symptom severity and more severe symptoms during acute exacerbations. High-risk caregivers were also distinguished by lower general life satisfaction at all visits and lower global and emotional quality of life during acute exacerbations which did not improve with exacerbation resolution. Rates of exacerbation or emergency department visits did not differ, but intermediate- and high-risk families were significantly less likely to seek unscheduled outpatient care. ConclusionSocial determinants of health influence wheezing outcomes in preschool children and their caregivers. These findings argue for routine assessment of social determinants of health during medical encounters and tailored interventions in high-risk families to promote health equity and improve respiratory outcomes.

The unknown impact of multiple myeloma: assessing the impact of financial well-being on quality of life of caregivers

Patients with multiple myeloma and their caregivers are financially burdened, and their quality of life is significantly affected by treatment costs and care expenses. The aim of our study is to examine the impact of financial well-being of the caregiver on the life quality of patients with multiple myeloma. The study included 113 patients with multiple myeloma and 113 caregivers in two hospitals located in Western Turkey. This study evaluated the demographic characteristics of patients and their caregivers, financial status, financial well-being, and quality of life of caregivers. Simple linear regression analyses were used to examine the impact of financial well-being on caregiver quality of life. The average age of multiple myeloma patients and caregivers is 64.00 ± 11.05 and 48.02 ± 11.4, respectively. Of patients, 50.4% and 62.8% of their caregivers were female. It is determined that 51.3% of the patients were diagnosed in 1-5 years, 85% received chemotherapy, and 80.5% had an ECOG performance status between 0 and 1. Caregivers' quality of life and financial well-being were found to be low. On one hand, while caregivers' financial well-being (β = - 1.003; t = - 3.831; p = .000) negatively affected the quality of their lives, their financial satisfaction (β = 2.507; t = 3.820; p = .000) positively affected the quality of their lives, on the other hand. Caregivers' quality of life declined as their financial well-being got worse. Decreased quality of life of caregivers may affect the quality of care they provide to patients with MM. Hence, this study recommends the following. First, nurses who care for patients with MM should always assess the financial situation of patients and caregivers. Second, patient navigators, hospital billing specialists, and social workers should provide financial guidance to multiple myeloma patients and caregivers and provide help in solving their financial problems. Finally, policies that support the financial situation of patients and caregivers should be developed.

Sleep Quality of Family Caregivers of Children With Tracheostomies or Home Ventilators: A Scoping Review.

Family caregivers of children with tracheostomies or home ventilators are more likely to experience poor sleep quality when undertaking the full responsibility of caring for fragile children. This scoping review aimed to identify the sleep quality, related factors, and their impact on the health of family caregivers of children with tracheostomies or home ventilators. The included studies (N = 16) were retrieved through PubMed, CINAHL, Cochrane Library, Embase, PsycINFO, and Web of Science. Family caregivers' sleep were low in quality, frequently disturbed, and insufficient. Their sleep quality was related to fatigue, anxiety, depression, family functioning, and health-related quality of life. The sleep disturbing factors were classified as child, caregiver, or environment-related, which were mutually interrelated. This review emphasizes the need to develop nursing interventions to both improve the sleep quality of family caregivers and the health of children with tracheostomies or home ventilators based on an in-depth understanding of the family's context.

Asthma control in children, socioeconomic inequality and health care

IntroductionSocioeconomic inequality (SEI) can adversely affect asthma control. The aim of this study was to establish the association of SEI with asthma control in children and caregiver quality of life. MethodsWe assessed socioeconomic status based on the area of residence, according to the at risk of poverty rate (ARPR). After stratifying the paediatric population of Castilla y León (Spain) in ARPR tertiles, we selected participants by stratified random sampling, and identified children with asthma aged 6–14 years from the health records of primary care centres. We collected data through questionnaires completed by parents. The primary outcomes were asthma control and caregiver quality of life. We assessed their association with SEI, health care quality measures and individual factors (such as parental educational attainment) by means of multivariate regression models. ResultThe ARPR tertile was not associated with asthma control, quality of life or health care quality. A medium or high maternal educational attainment was associated with a lower risk of making an unscheduled or urgent visit (OR = .50; 95% CI, .27–.95; P = .034) and paternal educational attainment was associated with a lower risk of uncontrolled asthma (OR = 0.51; 95% CI, .28–.94; P = .030). ConclusionIn the sample under study, SEI assessed at the local level was not associated with asthma control in children. Other factors, such as parental educational attainment, may have a protective effect.

Impact of the cough stimulation system on the care burden and life quality of caregivers of tetraplegics

Objectives To determine caregiver burden and quality of life of primary family caregivers of participants with cervical SCI before and after use of the cough stimulation system (CSS). Design Prospective assessment at four timepoints via questionnaire responses. Setting Out-patient hospital, United States. Participants 15 primary family caregivers of participants with cervical SCI completed questionnaires including a respiratory care burden index (n = 15) and a commonly employed caregiver burden inventory (n = 9), before and at the 6-month, 1-year and 2-year timepoints following use of the CSS. Results SCI participants had significant clinical improvements in terms of restoration of an effective cough and ability to manage airway secretions with use of the CSS. Restoration of expiratory muscle function with use of the CSS also resulted in less caregivers (CG) stress, greater control of their participants’ breathing problems, and improvement in quality of life. Results of the caregiver burden inventory demonstrated marked reductions in caregiver burden in development items, physical health and social relationship. Overall caregiver burden fell from 43.4 ± 13.8 pre-implant to 32.4 ± 7.9 (P = 0.06), 31.7 ± 10.5 (P = 0.05), and 26.5 ± 9.3 (P = 0.01) at the 6-month, 1-year and 2-year timepoints. Conclusion Use of the CSS by cervical SCI participants results in restoration of an effective cough with significant clinical benefits. While caregiver burden is very high in primary family caregivers, they derive marked improvement in caregiver burden and quality of life with implementation of this device. Trial registration: ClinicalTrials.gov identifier: NCT00116337. Trial registration: ClinicalTrials.gov identifier: NCT01659541.

Factors associated with caregiver burden among family caregivers of children with cerebral palsy: a systematic review

ObjectivesTo identify caregiver and children factors associated with caregiver burden on primary caregivers of children with cerebral palsy (CP).DesignSystematic reviewData sourcesSeven electronic databases, including PubMed, Cochrane Library, Scopus, PsycINFO, Web...

(148) The Effect of the ENABLE-LVAD Program on Caregiver Strain and Sleep Quality in Ventricular Assist Device Caregivers

(148) The Effect of the ENABLE-LVAD Program on Caregiver Strain and Sleep Quality in Ventricular Assist Device Caregivers

Parenting orientations in young adulthood: Predicting timing of parenthood and quality of postpartum caregiving.

Most but not all adults become parents, yet it remains unclear which characteristics indicate an orientation toward parenting. The aims of this study were to (a) distinguish profiles of individual and interpersonal resources in young adults that may orient them toward parenthood and (b) investigate whether profiles predicted timing of entering parenthood, postpartum parenting behavior, and parent-infant bonding. Participants were 1,429 young people (53% female) enrolled in an Australian 39-year longitudinal study. Predictor data for latent profile analysis were collected at 23-24 and 27-28 years. Parenthood timing was designated as "early" ≤ 25 years, "on-time" > 25 years, and "not a parent" by age 37 years. Parenting outcomes were assessed at 12 months postpartum in 684 parents of 1,144 children. Four-profile classes were identified: "connected" (n = 463, 32.4%), "constricted empathy" (n = 461, 32.3%), "insecure" (n = 343, 24%), and "disconnected" (n = 162, 11.3%). Connected young adults were characterized by close ties to family of origin and peers and by identity clarity and empathy. Connected participants were more likely than those in insecure and disconnected classes to be parents by 37 years and more likely to enter parenthood "on-time" compared to "early" parenthood in the constricted empathy class. Among those who became parents, the connected class reported the strongest bonds and warmest parenting and was least anxious or hostile in parenting their infants. Findings provide insights into preconception patterns among variables that together predict reproductive timing, postpartum bonding, and quality of parenting. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Caregiver Burden and Quality of Life Across Alzheimer's Disease Severity Stages.

The objective is to estimate the caregiver burden in terms of informal care time, health-related quality of life (HRQoL), and societal costs by disease severity (mild, moderate, or severe) and living situation (community-dwelling or institutionalized) of persons with AD (PwAD); and PwAD HRQoL. Caregivers were recruited through an online panel provider in the Netherlands. The survey used validated instruments, including iMTA Valuation of Informal Care Questionnaire, CarerQoL, and EQ-5D-5L. One hundred two caregivers participated. PwADs received, on average, 26 hours of informal care per week. Informal care costs were higher for community-dwelling PwADs compared with institutionalized PwADs (€480 and €278, respectively). On the EQ-5D-5L, caregivers scored on average 0.797, reflecting a utility decrement of 0.065 compared with an age-matched population. Proxy-rated utility scores for PwADs decreased with increasing disease severity (0.455, 0.314, and 0.212 for mild, moderate, and severe AD, respectively). Institutionalised PwADs had lower utility scores than community-dwelling PwADs (0.590 vs. 0.421). There was no difference in informal care time, societal costs, CarerQol scores, and caregiver EQ-5D-5L scores between disease severities. The burden of AD extends to caregivers in terms of HRQoL and time investment, regardless of the disease severity of the target population. These impacts should be incorporated into the evaluation of new AD interventions.

280 Estimating Latent Attitudinal and Behavioral Risk Profiles and Associations with Food Allergy-Related Quality of Life

OBJECTIVES/GOALS: Childhood food allergy (FA) is a chronic condition that can profoundly impact patient and caregiver quality of life (QoL). Risk factors for impaired FA-related QoL remain largely unknown. This study aims to estimate latent profiles of caregiver attitudes and behaviors, and examine if group membership correlates with established QoL outcomes. METHODS/STUDY POPULATION: This project is subsumed under the FORWARD study (5R01AI130348-04), a multisite longitudinal cohort study conducted at four major pediatric medical centers. Eligible participants include caregivers of children ages 12 years and under who identify as Black or White and have at least one physician-diagnosed FA. Participants complete intake surveys, annual clinical visits, and quarterly surveys administered via REDCap. As of November 2022, 413 Non-Hispanic Black and 486 Non-Hispanic White participants were enrolled. RESULTS/ANTICIPATED RESULTS: We anticipate that specific latent profiles will emerge based on caregiver-reported attitudes and behaviors. We predict these profiles will demonstrate configural, metric, and scalar invariance across key sociodemographic strata (e.g., child race/ethnicity, household income, caregiver educational attainment, and child sex). Relatedly, we anticipate that sociodemographic factors, such as race, sex, ethnicity, parental education, and income, will significantly predict group membership. Finally, we predict that latent profile membership will be associated with different levels of quality of life, as assessed by the parental food allergy-related quality of life questionnaire (FAQLQ-PF-10) and other validated measures of FA-related psychosocial burden. DISCUSSION/SIGNIFICANCE: Given the psychosocial burden associated with FA, and limited mental health resources for patients and families, it is essential to improve understanding of how caregiver attitudes influence behavior and disease management outcomes. In so doing, we will inform the development and implementation of tailored interventions for those at highest risk.

A Partial Picture, Without a Frame: Measuring Quality of Life in Cystic Fibrosis Caregivers

ABSTRACT Background Significant advances in the treatment of Cystic Fibrosis (CF) have extended life expectancy, increasing the number of CF caregivers who deliver demanding daily treatment regimens and manage uncertainty. With the impact these changes have on CF caregivers, it is critical to understand CF caregiver quality of life (QoL). Purpose To examine how QoL is measured in CF caregiver research and identify which QoL domains from the World Health Organization (WHO) framework are represented in CF caregiver QoL outcomes. Methods Literature published from 2003 to the present was searched to identify all relevant articles in online academic databases related to measurement of CF caregiver QoL. Results Findings suggest there is inconsistency within QoL measurement with CF caregivers and no existing scale accounts for all aspects of CF caregiver QoL from the WHO’s framework. Discussion The disconnect between how CF caregiver QoL is measured and how it is defined presents a challenge in utilizing information gleaned to best provide targeted and relevant services and resources to CF caregivers. Translation to Health Education Practice: A better understanding of caregiver QoL across all WHO domains will allow development of targeted programs to adequately address challenges for CF caregivers.

Comparing the effects of smartphone-based and face-to-face pulmonary rehabilitation education on caregiver burden and quality of life among the family caregivers of patients with chronic obstructive pulmonary disease: a randomized controlled field trial

BackgroundFunctional limitation among patients with chronic obstructive pulmonary disorder (COPD) and their dependence on their family caregivers (FCs) can significantly increase caregiver burden (CB) and reduce the quality of life (QOL) among FCs. Education of pulmonary rehabilitation (PR) to FCs is a strategy with potential positive effects on CB. This study was conducted to compare the effects of smartphone-based and face-to-face (FTF) PR education on CB and QOL among the FCs of patients with COPD.MethodsThis randomized controlled field trial was conducted in 2021–2022. Participants were purposefully selected from the PR unit of Khorshid comprehensive respiratory care clinic in Isfahan, Iran, and randomly allocated to a control and an intervention group. Participants in the control group received PR education in twelve 30–60-min FTF sessions held twice weekly in six consecutive weeks. Their counterparts in the intervention group received PR education for 6 weeks through an android application. The Zarit Burden Interview and the 12-item Short Form Health Survey (SF-12) were used for data collection before and immediately after the study intervention. The SPSS software (v. 24.0) was used to analyze the data through the independent-sample t, paired-sample t, chi-square, and Fisher’s exact tests.ResultsThe means of participants’ age was 47.7 ± 13.8 years in the control group and 44.1 ± 14.8 years in the intervention group. Most participants in these groups were female (82.9% vs. 71.4%). The pretest mean scores of CB and QOL were respectively 50.77 ± 10.64 and 27.82 ± 3.9 in the control group and 49.77 ± 7.65 and 26.71 ± 3.5 in the intervention group with no significant between-group difference (P > 0.05). At the posttest, these values were respectively 51.57 ± 7.32 and 27.74 ± 3.28 in the control group and 37.31 ± 6.95 and 34.37 ± 2.8 in the intervention group, and between-group differences were significant (P < 0.05). The mean scores of CB and QOL did not significantly change in the control group (P > 0.05), but respectively decreased and increased significantly in the intervention group (P < 0.05).ConclusionsSmartphone-based PR education is effective in significantly decreasing CB and improving QOL among the FCs of patients with COPD.Trial registrationIranian Registry of Clinical Trials IRCT20161203031200N3

Effects of a remote-handling-concept–based task-oriented arm training (ReHab-TOAT) on arm-hand skill performance in chronic stroke: a study protocol for a two-armed randomized controlled trial

BackgroundImproving arm-hand skill performance is a major therapeutic target in stroke rehabilitation and needs intensive and varied training. However, guided treatment time is limited. Technology can assist in the training of patients, offering a higher intensity and more variety in content. A new task-oriented arm training approach was developed, using a ‘Remote Handling concept based’ device to provide haptic feedback during the performance of daily living activities (ReHab-TOAT). This study aims to investigate the effects of ReHab-TOAT on patients’ arm-hand function and arm-hand skill performance, quality of life of both patients in the chronic phase after stroke and their caregivers and the patients’ perception regarding the usability of the intervention.MethodsA randomized clinical trial was designed. Adult chronic stroke patients suffering from hemiparesis and arm-hand problems, with an Utrechtse Arm-hand Test score of 1–3, will be invited to participate. Participants in the experimental group receive ReHab-TOAT additional to care as usual. ReHab-TOAT contains task-oriented arm training for stroke patients in combination with haptic feedback, generated by a remote handling device. They will train for 4 weeks, 3× per week, 1.5h per day. Participants in the control group will receive no additional therapy apart from care as usual. The Fugl-Meyer Assessment (FMA), measuring participants’ motor performance of the affected arm, is used as the primary outcome measure. Secondary outcome measures are arm-hand capacity of the patient (ARAT), perceived arm-hand skill performance (MAL), actual arm-hand skill performance (accelerometry), patients’ quality of life (EuoQol-5D) and caregivers’ quality of life (CarerQoL). Participants’ perception regarding the usability of the intervention, including both the developed approach and technology used, will be evaluated by the System Usability Scale and a questionnaire on the user experience of technology. Measurements will be performed at 1, 2, 3 and 4 weeks pre-intervention (baseline); immediately post-intervention; and 3, 6 and 9 months post-intervention. Statistical analysis includes linear mixed model analysis.DiscussionThis study is designed to investigate the evidence regarding the effects of ReHab-TOAT on patients’ performance at different levels of the International Classification of Functioning, disability and health (ICF) model, i.e. a framework measuring functioning and disability in relation to a health condition, and to provide insights on a successful development and research process regarding technology-assisted training in co-creation.Trial registrationNetherlands Trial Register NL9541. Registered on June 22, 2021