Caregiver Health-related Quality Of Life Research Articles

Individual and system-level determinants of caregivers’ quality of life among inner-city preschool children with asthma

Caregivers of children with asthma can become overwhelmed by the burden of care provision. Guided by the socioecological framework, we examined individual and system-level factors associated with caregiver health-related quality of life (HRQoL) among preschool children (aged two to six years) enrolled in a multilevel home- and school-based asthma educational intervention in Baltimore, Maryland. Primary outcome was caregiver HRQoL measured at baseline and six months. Independent variables were baseline individual-level factors (caregiver’s health literacy, self-efficacy to manage asthma, and depressive symptoms) and system-level factors (barriers to asthma care measured in five subdomains—pragmatics, health knowledge and beliefs, expectations, skills, and marginalization—and neighborhood social cohesion). Multiple regression models were used to assess association between baseline individual and system-level factors and caregiver HRQoL at baseline and six-month follow-up adjusting for child’s asthma control, caregiver’s age, household income, and study arm assignment/intervention. 398 caregivers completed the baseline survey and 328 (82%) completed the six-month follow-up survey. In the adjusted multiple regression model, lower caregiver’s health literacy and higher barriers to asthma care related to pragmatics were significantly associated with lower caregiver HRQoL at baseline (b= 0.38, 95% CI, 0.15 - 0.61, p = 0.002; and b = 0.01, 95% CI, 0.004 - 0.02, p < 0.001, respectively). The results were similar at six-month follow-up. Caregiver health literacy and barriers to asthma care related to pragmatics and skills were found to be important determinants of asthma caregiver HRQoL. Addressing these factors may improve quality of life among caregivers of preschool children with asthma.

Behavioral Changes During COVID-19 Omicron Variant Infection on Children with Autism Spectrum Disorder in China.

The objective of this study was to investigate the behavioral changes in the core features and challenging behaviors of children with Autism Spectrum Disorder (ASD) during the COVID-19 Omicron wave (from December 2022 to January 2023) in China. A total of 515 caregivers of children with ASD completed an online survey. This survey was designed to assess the sociodemographic characteristics of the children and their caregivers, the clinical features of COVID-19, the manifestation of core ASD features and challenging behaviors, and the alterations in daily life following the COVID-19 Omicron variant wave. The children with ASD had an average age of 5.4 years, with 79.6% being male. After the Omicron wave, the proportions of participants with worsening core ASD features and challenging behaviors were 22.9% and 37.1%, respectively. Sleep disorders (20.0%), eating problems (18.6%), and inattentive symptoms (17.5%) were the most frequently reported worsening behaviors. The factors associated with the worsening of core ASD features included infection with the Omicron variant of COVID-19, reduced outdoor activity, and a lower score of caregiver health-related quality of life (HRQoL). The worsening of challenging behaviors was associated with infection with the Omicron variant of COVID-19, a lower frequency of rehabilitation training, and a lower score of HRQoL. The outbreak of the COVID-19 Omicron variant had an impact on the behaviors of autistic children. The behavior changes in core ASD features and challenging behaviors differed and were associated with COVID-19 infection and other factors.

Exploring health-related quality of life in Portuguese Informal Caregivers

Abstract Background Caregiving can be associated with several adverse health impacts, such as in terms of mental health, health services use, or health-related quality of life (HRQoL). This study assessed HRQoL levels in Portuguese Informal Caregivers, and their relationship with caregiver psychosocial characteristics (e.g., perceived general and mental health; perceived level of support) and caregiving circumstances (e.g., caregiving duration, caregiving hours). Methods A cross-sectional study was conducted through an online survey directed to informal caregivers. HRQoL was measured using the Portuguese translation of the EQ-5D-5L. This instrument yields two values for HRQoL: a health profile (EQvalue) covering five dimensions (mobility, self-care, usual activities, pain/discomfort, and anxiety/depression), and a visual analogue scale (EQvas). Bivariate analyses were performed and results with p-values below 0.05 were considered statistically significant. Results A total of 760 informal caregivers were surveyed (mean age 57 years (±9.9), 92.5% female, 41.5% at least university level, 44.4% works full or part-time). The mean total score for EQvalue (n = 733) was 0.8 (SD = 0.2). The mean total score for EQvas (n = 760) was 63.1 (SD = 21.5). The perceived general (p &amp;lt; 0.001) and mental (p &amp;lt; 0.001) health status, and the perceived access to healthcare (p &amp;lt; 0.001) were associated with EQvalue score. Also, EQvalue score was found to be directly correlated with the perceived level of support (r = 0.142; p &amp;lt; 0.001) and competence (r = 0,237; p &amp;lt; 0.001), and inversely correlated with the number of caregiving hours per day (r= -0,150; p = &amp;lt; 0,001) and the caregiving duration (r= -0,109; p = 0.008). Conclusions A significant relationship between caregiver HRQoL and several caregiver psychosocial variables was identified. Investing in and promoting the use of respite care services, as well as ensuring better access to healthcare for caregivers, appears important for improving caregivers’ HRQoL. Key messages • Improving caregivers’ access to healthcare and education or training programs (promoting a greater sense of competence) can be important in helping them maintain their quality of life. • Increasing the availability and promoting the use of respite care services by caregivers can be important in helping them maintain their quality of life.

Informal caregiver burden in dialysis care and how it relates to patients' health-related quality of life and symptoms.

Informal caregivers play a crucial role in dialysis care but may experience significant burden, potentially affecting both caregiver and patient outcomes. Research on caregiver burden and health-related quality of life (HRQoL) and the relation to patient-reported outcomes (PROs) is lacking. Therefore, we aimed to (i) describe informal caregivers' experienced burden and HRQoL and (ii) investigate how these are related to dialysis patients' HRQoL and symptoms. We conducted a cross-sectional study at dialysis initiation with 202 adult informal caregiver-dialysis patient dyads. Caregiver burden was measured with the Self-Perceived Pressure from Informal Care (SPPIC) questionnaire, HRQoL with the 12-item Short Form Health Survey (SF-12), and symptom number and burden with the Dialysis Symptom Index (DSI). Data were analysed using linear and logistic ordinal regression. Around 38% of caregivers experienced moderate to high burden. Patients' lower mental HRQoL [adjusted odds ratio (aOR)=0.95, 95% confidence interval (CI) 0.92; 0.99], higher symptom number (aOR=1.07, 95% CI 1.02; 1.12) and higher symptom burden (aOR=1.03, 95% CI 1.01; 1.04) were associated with greater odds of higher caregiver burden. Patients' lower mental HRQoL (β=0.30, 95% CI 0.15; 0.46), higher symptom number (β=-0.55, 95% CI -0.78; -0.31) and higher symptom burden (β=-0.17, 95% CI -0.25; -0.10) were also associated with a lower mental HRQoL in caregivers. We show that a third of caregivers feel moderate to high burden and that caregiver burden is associated with patients' mental HRQoL and symptoms. These findings highlight the importance of recognizing informal caregivers and the nature of their burden.

Nurse Telephone Support for Caregivers of Older Adults at Hospital Discharge

Informal caregivers who provide home-based care frequently experience stress and burden that adversely affect their health-related quality of life (HRQOL). To evaluate the efficacy of the Further Enabling Care at Home (FECH+) program for the HRQOL of caregivers of older adults discharged home from the hospital. This multicenter, parallel, 2-group randomized clinical trial, with blinded baseline and outcome measurements, was conducted at 3 hospitals in 2 states in Australia. Recruitment took place between August 2020 and July 2022, and follow-up was performed for 12 months after hospital discharge. Participants were dyads of caregivers and patients. Eligible caregivers were aged 18 years or older who provided informal home-based care at least weekly for a patient aged 70 years or older. Caregivers were enrolled when their patient was discharged from the hospital. Dyads were randomly assigned to either the intervention or control group. Data analysis followed an intention-to-treat approach. Caregivers in the intervention group received the FECH+ program, structured nurse support of 6 telephone calls over 6 months after the patient's discharge plus usual discharge care. Caregivers in the control group received usual care alone. Primary outcome was caregivers' HRQOL 6 months after discharge, which was measured using the Assessment of Quality of Life 8-Dimension (AQOL-8D). Secondary outcomes were caregivers' HRQOL 12 months after discharge as well as preparedness to care (measured using the Preparedness for Caregiving Scale), self-efficacy (measured using the Caregiver Inventory), and levels of strain and distress (measured using the Family Appraisal of Caregiving Questionnaire) at 6 and 12 months after discharge. Baseline and outcome measurements were administered by telephone at 3, 6, and 12 months after discharge. A total of 547 dyads (caregivers: 405 females [74.0%], mean [SD] age, 64.50 [12.82] years; patients: 296 females [54.1%], mean [SD] age, 83.16 [7.04] years for the intervention group and 83.45 [7.20] years for the control group) were included in the intention-to-treat analysis. There was no significant difference in caregivers' HRQOL between the 2 groups at the primary time point of 6 months (difference in AQOL-8D score, 0.01; 95% CI, -0.02 to 0.03; P = .62) after hospital discharge. In this randomized clinical trial, the FECH+ program-a nurse telephone support intervention for caregivers of older adults after hospital discharge-did not significantly improve caregivers' HRQOL at 6 months after discharge compared with usual care. Additional examination is warranted into improving caregivers' HRQOL at the time of their patient's hospital discharge. Australian New Zealand Clinical Trials Registry Identifier: ACTRN12620000060943.

Economic burden and quality of life of caregivers of patients with sickle cell disease in the United Kingdom and France: a cross-sectional study

BackgroundSickle cell disease (SCD), a genetic blood disorder that affects red blood cells and oxygen delivery to body tissues, is characterized by haemolytic anaemia, pain episodes, fatigue, and end-organ damage with acute and chronic dimensions. Caring for patients with SCD imposes a high burden on informal caregivers. This study aims to capture the impact on health-related quality of life (HRQoL) and economic burden of caregiving for patients with SCD.MethodsValidated instruments of HRQoL (EQ-5D-5L, Carer Quality of Life-7 dimensions [CarerQol-7D]) and productivity (Work Productivity and Activity Impairment Questionnaire: Specific Health Problem [WPAI: SHP]) were administered via a cross-sectional online survey to caregivers in the United Kingdom (UK) and France. Demographics, HRQoL, and economic burden data were analyzed using descriptive statistics. Economic burden was determined using country-specific minimum and average wage values. Subgroup analysis examined caregivers with and without SCD.ResultsSixty-nine caregivers were recruited (UK, 43; France, 26), 83% were female, and 22% had SCD themselves. The mean (SD) caregiver EQ-5D-5L score was 0.66 (0.28) (UK, 0.62; France, 0.73), and the mean CarerQol-7D score was 80.69 (24.40) (UK, 78.72 [25.79]; France, 83.97 [22.01]). Mental health problems were reported in 72% and 70% of caregivers measured using the EQ-5D-5L and CarerQol-7D, respectively. Financial problems were reported by 68% of caregivers, with mean annual minimum wage productivity losses of £4209 and €3485, increasing to £5391 and €9319 for average wages. Sensitivity analysis determined additional HRQoL decrements for caregivers with and without, SCD.ConclusionCaring for patients with SCD impacts the HRQoL and economic burden of caregivers. Further research to support the complex needs of SCD caregivers is required.

Caregiver Burden among Patients with Influenza or Influenza-like Illness (ILI): A Systematic Literature Review.

Influenza and influenza-like illness (ILI) pose significant clinical and economic burdens globally each year. This systematic literature review examined quantitative studies evaluating the impact of patients' influenza/ILI on their caregivers' well-being, focusing on health-related quality of life (HRQoL), work productivity, and activity impairment. A comprehensive search across six databases, including the Cochrane Database of Systematic Reviews, Embase, MEDLINE via PubMed, Ovid, PsycNet, and Web of Science, yielded 18,689 records, of which 13,156 abstracts were screened, and 662 full-text articles were reviewed from January 2007 to April 2024. Thirty-six studies [HRQoL: 2; productivity: 33; both: 1] covering 22 countries were included. Caregivers of 47,758 influenza or ILI patients across 123 study cohorts were assessed in the review. The mean workday loss among caregivers ranged from 0.5 to 10.7 days per episode, influenced by patients' influenza status (positive or negative), disease severity (mild or moderate-to-severe), age, viral type (influenza A or B), and vaccination/treatment usage. The HRQoL of caregivers, including their physical and emotional well-being, was affected by a patient's influenza or ILI, where the severity and duration of a patient's illness were associated with worse HRQoL. This review shows that the consequences of influenza or ILI significantly affect not only patients but also their caregivers.

HTA23 Caregiver Health-Related Quality of Life in National Institute for Health and Care (NICE) Appraisals: From Inception to 2023

HTA23 Caregiver Health-Related Quality of Life in National Institute for Health and Care (NICE) Appraisals: From Inception to 2023

Low resilience is associated with worse health-related quality of life in caregivers of service members and veterans with traumatic brain injury: a longitudinal study.

To examine [a] the association of caregiver health-related quality of life (HRQOL) and service member/veteran (SMV) neurobehavioral outcomes with caregiver resilience; [b] longitudinal change in resilience at the group and individual level; and [c] the magnitude of change at the individual level. Caregivers (N = 232) of SMVs with traumatic brain injury completed a resilience measure, and 18 caregiver HRQOL and SMV neurobehavioral outcome measures at a baseline evaluation and follow-up evaluation three years later. Caregivers were divided into two resilience groups at baseline and follow-up: [1] Low Resilience (≤ 45T, baseline n = 99, follow-up n = 93) and [2] High Resilience (> 45T, baseline n = 133, follow-up n = 139). At baseline and follow-up, significant effects were found between Low and High Resilience groups for the majority of outcome measures. There were no significant differences in resilience from baseline to follow-up at the group-mean level. At the individual level, caregivers were classified into four longitudinal resilience groups: [1] Persistently Low Resilience (Baseline + Follow-up = Low Resilience, n = 60), [2] Reduced Resilience (Baseline = High Resilience + Follow-up = Low Resilience, n = 33), [3] Improved Resilience (Baseline = Low Resilience + Follow-up = High Resilience, n = 39), and [4] Persistently High Resilience (Baseline + Follow-up = High Resilience, n = 100). From baseline to follow-up, approximately a third of the Reduced and Improved Resilience groups reported a meaningful change in resilience (≥ 10T). Nearly all of the Persistently High and Persistently Low Resilience groups did not report meaningful change in resilience (< 10T). Resilience was not a fixed state for all caregivers. Early intervention may stall the negative caregiving stress-health trajectory and improve caregiver resilience.

A qualitative study to explore the burden of disease in activated phosphoinositide 3-kinase delta syndrome (APDS).

Activated phosphoinositide 3-kinase delta syndrome (APDS) is an ultra-rare primary immunodeficiency, with only 256 cases reported globally. This study aimed to explore the disease burden of APDS from the perspective of individuals with APDS and their caregivers. Qualitative interviews were conducted with healthcare providers (HCPs), individuals with APDS and caregivers, to explore the symptoms and health-related quality of life (HRQoL) impact of APDS. Some individuals and caregivers also completed a narrative account exercise. All interviews were audio recorded and transcribed. Data were analysed using thematic analysis and saturation was recorded. Semi-structured qualitative interviews were conducted with healthcare providers (HCPs), individuals with APDS and caregivers. Individuals and caregivers had the option of completing a narrative account exercise. Six HCPs participated in an interview. Seven participants completed the narrative account exercise (N = 5 caregivers and N = 2 individuals with APDS) and 12 took part in an interview (N = 4 caregivers and N = 8 individuals with APDS). Themes identified from HCPs interviews included symptoms, clinical manifestations, HRQoL impacts and treatments/management of APDS. The narrative account exercise identified similar themes, but with the addition to the journey to diagnosis. These themes were explored during the individual/caregiver interviews. Reported clinical manifestations and symptoms of APDS included susceptibility to infections, lymphoproliferation, gastrointestinal (GI) disorders, fatigue, bodily pain, and breathing difficulties. HRQoL impacts of living with APDS included negative impacts to daily activities, including work, education and social and leisure activities, physical functioning, as well as emotional well-being, such as concern for the future, and interpersonal relationships. Impacts to caregiver HRQoL included negative impacts to physical health, work, emotional well-being, interpersonal relationships and family life and holidays. The management of APDS included the use of healthcare services and medications including immunoglobulin replacement therapy (IRT), rapamycin, prophylactic antibiotics, leniolisib, as well as medical procedures due to complications. APDS has a high disease burden and there is an unmet need for licensed, more targeted treatments which modify disease progression. This study was the first to describe the day-to-day experience and HRQoL impact of APDS from the perspective of individuals living with the condition, caregivers and treating physicians.

Health-related quality of life and associated factors among primary caregivers of children with cerebral palsy, in Bahir Dar and Gondar cities, Ethiopia, 2022.

Caring for a child with cerebral palsy (CP) could negatively affect the Health-Related Quality of Life (HRQOL) of the mothers who are usually the primary caregivers. To the best of our 'knowledge, there is a dearth of information on the HRQOL of primary caregivers of children with CP in Ethiopia. Therefore, this study aimed to investigate caregivers' HRQOL and factors associated with it in Gondar and Bahir Dar Cities, Northwest Ethiopia, 2022. A community-based cross-sectional study was conducted among primary caregivers of Children with CP from April 20 to June 20, 2022, in Gondar and Bahir Dar cities. Convenience sampling was used to get study participants. Data were collected by trained health extension and community-based rehabilitation workers. The collected data were coded, cleaned, entered into EPI data, and exported to Stata-16 for analysis. A generalized linear model was employed to show the relationship between dependent and independent variables. A P-value≤0.05 was considered statistically significant at a 95% confidence interval. In this study, HRQOL among primary caregivers of children with CP was 28.72(±13.38) and 23.26(±12.37) in the physical summary score (PSC) and mental summary score (MSC) respectively. Age 17-30yeas (p-value = 0.03), unable to read and write (p = 0.01), privately employed (p = 0.01) and government employed (p = 0.02), monthly income<1000 Ethiopian Birr (ETB) (p = 0.01), insufficient sleeping (p = 0.001), others relationship(p = 0.001), have three and above children (p = 0.001), others house composition (p = 0.003), have no helpers (p = 0.001) and third birth order of child (p = 0.03) were all factors associated with HRQOL in PSC. On the other hand, income<1000ETB (p = 0.05), insufficient sleeping (p = 0.001), others in relation to the child (p = 0.001), others in house composition (p = 0.03), dyskinetic CP (p = 0.01) and ataxic CP (p = 0.001) were all factors associated with HRQOL of caregivers in MSC components. The HRQOL among primary caregivers of children with CP in Bahir Dar and Gondar cities was low. Age, monthly income, educational status, sleeping status, relationship and house composition, number of living children, birth order of child, helpers, and type of CP were all significantly associated with HRQOL of primary caregivers of children with CP.

Caregiver burden and health-related quality of life: A study of informal caregivers of older adults in Ghana.

Similar to many developing countries, caregiver burden remains high in Ghana which may affect informal caregivers of older adults' health-related quality of life (HRQoL). However, no study has examined the association between caregiver burden and HRQoL among informal caregivers of older adults in Ghanato date. Understanding this association may well help to inform health and social policy measures to improve HRQoL among informal caregivers of older adults in Ghana. Situated within a conceptual model of HRQoL, the purpose of this study was to examine the relationship between caregiver burden and HRQoL among informal caregivers of older adults in Ghana. We obtained cross-sectional data from informal caregiving, health, and healthcare (N = 1853) survey conducted between July and September 2022 among caregivers (≥ 18 years) of older adults (≥ 50years)inthe Ashanti Region of Ghana. The World Health Organization Impact of Caregiving Scale was usedto measure caregiver burden. An 8-item short form Health Survey scale developed by the RAND Corporation and the Medical Outcomes Study was used to measure HRQoL. Generalized Linear Models were employed to estimate the association between caregiver burden and HRQoL. Beta values and standard errors were reported with a significance level of 0.05 or less. The mean age of the informal caregivers was 39.15years and that of the care recipients was 75.08years. In our final model, the results showed that caregiver burden was negatively associated with HRQoL (β = - .286, SE = .0123, p value = 0.001). In line with the conceptual model of HRQoL, we also found that socio-economic, cultural, demographic and healthcare factors were significantly associated with HRQoL. For instance, participants withno formal education (β = -1.204, SE=.4085, p value =0.01), those withprimary level of education (β = -2.390, SE=.5099, p value =0.001) orjunior high school education (β = -1.113, SE=.3903, p value= 0.01) hada significantly decreased HRQoLcompared to those with tertiary level of education. Participants who werebetween the ages of 18-24 (β = 2.960, SE=.6306, p value=0.001), 25-34 (β = 1.728, SE=.5794, p value=0.01) or 35-44 (β = 1.604, SE=.5764, p value= 0.01) years significantly had increased HRQoLcompared to those who were 65 years or above. Also, participants who did not utilize healthcare services in the pastyear before the survey significantly had increased HRQoLcompared to those who utilized healthcare services five or more times in the pastyear (β = 4.786, SE=. 4610, p value=0.001). Consistent with our hypothesis, this study reported asignificant negativeassociation between caregiver burden and HRQoL. Our findings partially support the conceptual model of HRQoLused in this study. We recommend that health and social policy measures to improve HRQoL among informal caregivers of older adultsshould consider caregiver burden as well as other significant socio-economic, cultural, demographic, and healthcare factors.

Does caring for patients with advanced non-small cell lung cancer affect health-related quality of life of caregivers? A multicenter, cross-sectional study

PurposePatients with advanced non-small cell lung cancer (NSCLC) mostly receive essential routine care and support from informal caregivers, who usually experience poorer health-related quality of life (HRQoL). The study aimed to evaluate the HRQoL and its predictors among informal caregivers of patients with advanced NSCLC in China.MethodsWe interviewed the adult caregiver population of patients with advanced NSCLC (stage IIIB~IV) in nine tertiary hospitals from multiple provinces in China between November 2020 and June 2021. The EQ-5D-5L instrument measured the HRQoL of caregivers, as analyzed by employing descriptive analysis, univariate analysis, Tobit regression, and multivariate logistic regression, and investigated the important influencing factors further.ResultsA valid sample of 553 caregivers was analyzed. The mean EQ-5D-5L utility score of caregivers was 0.92 (SD = 0.14). Caregivers reported the greatest problems in mental health, with 45.39% reporting slight, moderate, severe, or extreme anxiety/depression. The potential influencing factors of HRQoL in caregivers included patients' age and cancer histology, relationship with the patients, and daily caregiving hours. Compared to other caregivers, patients' spouses had the lowest HRQoL. In addition, over six hours of caregiving per day was associated with lower HRQoL in caregivers of patients with advanced NSCLC.ConclusionsThe HRQoL of caregivers for patients with advanced NSCLC was investigated for the first time in China. The informal caregivers experience decreased HRQoL, with anxiety /depression problems being reported the most. The findings of this study would provide extensive information on the HRQoL of advanced NSCLC patients' caregivers for future health-promoting self-care.

RURAL–URBAN DIFFERENCES IN INFORMAL CAREGIVER RESOURCES, CAREGIVING INTENSITY, AND HEALTH-RELATED QUALITY OF LIFE

Abstract Rural-urban health disparities are pervasive among older adults and their caregivers. Rural areas in the US have a disproportionately high population of older adults, have reduced access to services, and are more reliant on family and friends for care. Research examining rural-urban disparities for informal caregivers is limited. There is a critical need to understand how caregiving intensity, access to resources, and caregiver health-related quality of life (HRQoL) differ by rural-urban status. Study objectives were to explore rural-urban differences in caregiving resources, intensity, and HRQoL. Data were abstracted from Waves 1 and 5 of the National Study of Caregiving. Rural-urban status was based on Rural Urban Continuum Codes. Generalized linear models, accounting for complex sampling, were used to explore associations between rural-urban status and caregiver resource utilization, caregiving intensity, and HRQoL. Compared to urban caregivers, rural caregivers were significantly more likely to be female (OR 1.19, 95%CI 1.12-1.26), older (beta=1.13 years, 95%CI 0.70-1.55), have obesity (OR 1.25, 95%CI 1.17-1.32), report poor/fair health (OR 1.08, 95%CI 1.01-1.16), and higher numbers of comorbidities (beta=0.18, 95%CI 0.13-0.22). Compared to urban caregivers, rural caregivers were significantly less likely to attend support groups (OR 0.55, 95% CI 0.46-0.65), but more likely to have caregiver training (OR 1.46, 95%CI 1.33-1.62). They assisted with fewer instrumental activities of daily living (beta=0.54, 95%CI 0.44-0.65), although there was not a significant difference for activities of daily living. Findings can facilitate the translation and adaption of policies, programs, and interventions to support and address the unique needs of rural caregivers.

SELF- AND PROXY-REPORTED MET NEEDS IN PERSONS WITH DEMENTIA ARE ASSOCIATIED WITH A LOWER HEALTH-RELATED QUALITY OF LIFE

Abstract This study examined the dyadic association of self and informal caregiver proxy-reported met needs in persons living with dementia on the health-related quality of life (HRQOL). A total of 237 dementia care dyads were included from the Case Management of Persons With Dementia and Their Caregivers Study. HRQOL was assessed by the EuroQol-5D and the number of met needs by the Camberwell Assessment of Needs for the Elderly. The Actor-Partner Interdependence Model framework was used to analyze the effect of an individual’s self or proxy-reported met needs on their own HRQOL (actor effects), and an individual’s self or proxy-reported met needs on the other dyad member’s HRQOL (partner effects). The number of self-reported met needs by persons living with dementia was negatively associated with their own HRQOL (actor effect b = -0.200, p &amp;lt; 0.001), and the HRQOL of informal caregivers (partner effect b = -0.114, p = 0.001). The number of proxy-reported met needs by informal caregivers was negatively associated with their own HRQOL (actor effect b = -0.105, p &amp;lt; 0.001) but not the person living with dementia’s HRQOL (-0.025, p = 0.375). Study findings suggest that both self-reported and informal caregiver proxy-reported met needs in persons living with dementia should be considered in research and practice because they have different implications for each dyad members’ HRQOL.

Health-related quality of life in family caregivers of autistic adults.

Family members of autistic individuals often provide support for their autistic relative throughout the lifespan which can lead to massive burden themselves. Reduced health-related Quality of Life (HRQoL) in family caregivers is assumed; however, only a handful studies on the HRQoL of family caregivers providing care to adult relatives exist as opposed to autistic children. Thus, the current study aimed to (i) investigate the current state of physical and mental HRQoL of family caregivers of autistic adults compared to the general population, and (ii) examine caregiver-related (e.g., age, subjective caregiver burden) and care recipient-related variables (e.g., symptom severity, utilization of formal services) explaining variance in the caregivers' HRQoL. N = 149 family caregivers completed a nationwide online survey, including the Short-Form Health Survey (SF-8) in order to assess the HRQoL. T-tests were used to compare the HRQoL of family caregivers with the general population. Bivariate correlational and multiple linear regression analyses were conducted in order to identify predictors explaining variance in family caregivers' HRQoL. Family caregivers of autistic adults reported significantly lower physical (M = 46.71, SD = 8.72, Cohen's d = 0.42) and mental HRQoL (M = 40.15, SD = 11.28, Cohen's d = 1.35) compared to the general population. Multiple linear regression with the mental HRQoL as the outcome showed a significant model (F(11, 95) = 5.53, p < .001, adj. R2 = .32) with increased subjective burden explaining most of the variance in mental HRQoL (ß = .32, GDW = .141, p < .001). Multiple linear regression analysis with the outcome physical HRQoL did not reveal a statistically significant model (F(11,95) = 1.09, p = .38). However, bivariate analyses also showed a positive correlation with the subjective caregiver burden (r= .20, p < .05). Findings highlight the need to consider HRQoL (and caregiver burden) of family caregivers of autistic adults in several healthcare settings to monitor a potential comprised health status in early stages, with the long-term goal to improve family caregivers' HRQoL.

Family Caregivers of Children With Medical Complexity: Changes in Health-Related Quality of Life and Experiences of Care Coordination

ObjectiveExamine the longitudinal association between family experiences of care coordination (FECC) and health-related quality of life (HR-QOL) for family caregivers of children with medical complexity (CMC). MethodsA longitudinal survey of family caregivers of CMC was completed between July 2018 and June 2020. Baseline data were collected at initial contact with a regional complex care center; follow-up data were collected 12 to 16 months later. Assessed receipt of care coordination and caregiver HR-QOL via FECC questionnaire and Center for Disease Control’s HR-QOL-14 measure, respectively. Baseline and follow-up results were compared via McNemar’s and Wilcoxon signed-rank tests. Relationships between changes in FECC and changes in HR-QOL were examined using multivariable logistic regression. ResultsOf 185 eligible, 136 caregivers enrolled and completed baseline surveys (74%) and 103 (76% initial sample) follow-up surveys. Caregivers reported significant improvements in 8 of 9 FECC measures after 1 year of care within a complex care center (all P < .05). In contrast, caregiver HR-QOL (general health status, unhealthy days, symptom days) remained stable over the study period (all P > .05) except for monthly days of poor sleep (baseline vs follow-up median; 16 vs 15 [P = .05]). At both timepoints, >20% participants rated their general health status as fair-to-poor, and >50% reported frequent poor sleep and fatigue. No significant associations were observed between changes in FECC and changes in HR-QOL. ConclusionsAfter receiving 1 year of care through a complex care center, CMC family caregivers report improvement in care coordination but not in HR-QOL. Caregivers’ continued mentally unhealthy days and negative mental symptom days highlight the need for a directed intervention.

EE239 How to Consider Caregiver Health-Related Quality of Life in a Cost-Effectiveness Analysis? An Illustration with Dupilumab for the Treatment of Severe Atopic Dermatitis in Infants in France

EE239 How to Consider Caregiver Health-Related Quality of Life in a Cost-Effectiveness Analysis? An Illustration with Dupilumab for the Treatment of Severe Atopic Dermatitis in Infants in France

Impact of neurofibromatosis type 1 with plexiform neurofibromas on the health-related quality of life and work productivity of adult patients and caregivers in the UK: a cross-sectional survey

BackgroundPlexiform neurofibromas (PN) are complex, benign nerve-sheath tumours that occur in 30–50% of patients with neurofibromatosis type 1 (NF1), a rare, genetic disorder. PN are associated with substantial, heterogeneous morbidities that impact health-related quality of life (HRQoL), including affecting motor function and causing pain, though HRQoL and work productivity data are scarce. This UK cross-sectional study explored HRQoL and work productivity in adult patients with NF1 PN and caregivers of paediatric patients.MethodsAdult patients and caregivers of paediatric patients self-enrolled in an online survey (March–April 2021). Outcomes included EQ-5D-5L, PROMIS® GH and INF1-QOL (adult patients only), and EQ-5D-5L, CarerQol and WPAI (caregivers only). Utilities were estimated from EQ-5D-5L responses using the UK crosswalk value set. Linear regression models explored univariable associations between adult patient characteristics and HRQoL.ResultsMean (± standard deviation) EQ-5D utility in adult patients with NF1 PN was 0.65 (± 0.29; n = 35; age-/sex-matched norm: 0.89 [± 0.04]). Moderate–extreme pain/discomfort and anxiety/depression were reported by 14/35 (40.0%) and 18/35 (51.4%) patients, respectively. Mean PROMIS® GH physical and mental health scores were 43.6 (± 9.19) and 41.7 (± 11.5; n = 35; matched norm: 50.0 [± 10.0]). Mean INF1-QOL score was 11.03 (± 6.02; n = 33). Chronic itching, at least one symptom, at least one comorbidity, PN location at extremities (arms/legs) and pain were associated with worse HRQoL scores.Mean caregiver EQ-5D utility was 0.72 (± 0.24; n = 8; age-/sex-matched norm: 0.88 [± 0.03]). Moderate pain/discomfort and moderate–severe anxiety/depression were reported by 4/8 (50.0%) and 2/8 (25.0%) caregivers, respectively. Mean CarerQol score was 69.3 (± 13.9; n = 8). Mean WPAI regular activity productivity loss was 36.3% (± 31.6%; n = 8).ConclusionsNF1 PN worsens adult patient and caregiver HRQoL compared to the general population, notably affecting pain and discomfort, anxiety and depression and caregiver productivity.

Fighting to Breathe and Fighting for Health-Related Quality of Life: Measuring the Impact of Being Dependent on Technology for Breathing on the Child and Their Caregiver.

Medical advancement has enabled children to survive congenital airway anomalies, rare diseases and critical illnesses with medical technology including tracheostomies and long-term ventilation to support breathing. This study aimed to assess (1) the validity of the EQ-TIPS and EQ-5D-Y-3L in children dependent on technology and (2) the impact of caring for these children on the EQ-5D-5L and CarerQoL. Caregivers of children aged 1 month to 18 years completed the EQ-TIPS or EQ-5D-Y-3L, Pediatric Quality of Life Inventory (PedsQL) and Paediatric Tracheostomy Health Status Instrument(PTHSI) to reflect the child's health. In addition, caregivers self-completed the EQ-5D-5L and CarerQoL. Reports of problems on EQ dimensions were compared across age groups with the Fisher's exact test. Spearman and Pearson's correlation coefficients and Kruskal-Wallis H-test were used to explore the association between caregiver and child scores, concurrent validity, and known-group validity of the EQ-TIPS and EQ-5D-Y-3L. Responses from 144 caregivers were collected, 66 for children aged 1 month to 4 years completing EQ-TIPS and 78 for children aged 5-18 years completing EQ-5D-Y-3L. The EQ-TIPS showed a higher report of no problems for social interaction for children aged 1-12 months (p = 0.040) than the older age groups, there were however no differences in the level sum score (LSS) or EQ Visual Analogue Scale scores between the age groups. The EQ-5D-Y-3L showed a significantly less report of problems for mobility (p = 0.013) and usual activities (p = 0.006) for children aged 5-7 years compared with children aged 8-12 and children aged 13-18 years. Similarly, the 5-7 years of age group had a significantly lower EQ-5D-Y-3L LSS compared with the older groups (H = 12.08, p = 0.002). The EQ-TIPS and EQ-5D-Y-3L showed moderate-to-strong associations with the PedsQL. EQ-TIPS median LSS was able to differentiate between groups on the clinical prognosis with a better health-related quality of life (HRQoL) in those where weaning from technology is possible compared with those where weaning is not possible (H = 18.98, p = 0.011). The EQ-5D-Y-3L can discriminate between breathing technology, where those with only a tracheostomy reported better HRQoL (H = 8.92, p = 0.012), and between mild and moderate clinical severity (H = 19.42, p < 0.001). Neither the PedsQL nor the PTHSI was able to discriminate between these groups across the age range. Caregiver and child HRQoL scores showed moderate-to-strong associations. The EQ-TIPS and EQ-5D-Y-3L showed good validity in children dependent on the technology for breathing. The EQ-TIPS and EQ-5D-Y-3L LSS were all able to differentiate between children with known clinical variables and outperformed both the PedsQL and PTHSI, making them preferable for intervention research. The caregiver scores are associated with the child HRQoL scores and thus a spill-over should be accounted for in any interventions targeting this cohort. It is recommended that future studies investigate the reliability and responsiveness of these measures in children dependent on technology for breathing.