Caregiver Quality Of Life Research Articles

A Scoping Review on Coping Strategies and Quality of Life of Stroke Caregivers: Often Underestimated Variables in Stroke Recovery Process?

The purpose of the present study was to review all available work published within the last decade focusing on coping strategies in stroke caregivers and their impact on quality of Life (QoL) and psycho-emotional status. A literature search of two databases (MEDLINE, Scopus) was conducted to identify all relevant full-text English studies published between 2013–2023. Sixteen articles were traced and were finally included. Cognitive and behavioral coping strategies were beneficial for stroke caregivers’ and survivors’ QoL. The level of mutuality in the caregiver-survivor relationship was associated with the impact of depressive symptoms on caregivers’ QoL and the protective effect of mutuality on survivors’ QoL over time. The level and quality of social support were positively associated with QoL for stroke caregivers and survivors. Caregivers’ preparedness was a moderator for the impact of depression on both caregivers’ and survivors’ QoL. High levels of spirituality had a significant role in ameliorating the negative impact of depressive symptoms on the psychological and physical QoL of stroke caregivers and survivors. In conclusion, the study of coping strategies can be used as a psychological reserve in the process of stroke rehabilitation and actively contribute to improving the QoL of both caregivers and stroke survivors.

Health-related quality of life in caregivers of children with and without neurodevelopmental disorders during the COVID-19 pandemic

Background Family caregivers face health issues that affect their quality of life, especially during the COVID-19 pandemic, which challenges people’s resilience resources. Methods This cross-sectional design study investigated the health-related quality of life (HRQOL) of family caregivers of children with and without neurodevelopmental disorders (N1 = 129, N2 = 126), focusing on four domains: physical, psychological, social, and environmental. Also, we explored the differences between caregivers, considering the child’s comorbidities and disorder severity. Results Participants in group one had lower HRQOL than group two, especially in the social and psychological areas. In addition, as expected, caregivers of children with severe disorders had a more negative perception of HRQOL’s social domain than caregivers of children with mild conditions. Finally, there were differences between HRQOL depending on comorbidities in psychological, social and environmental domains. Conclusions Caregivers of children with neurodevelopmental disorders (especially if the disorder is severe and there are comorbidities) are more vulnerable than other caregivers regarding HRQOL, which conveys the message that social support policies should pay more attention to them.

Quality of life in caregivers of a child with a developmental and epileptic encephalopathy.

To explore the relationship between social care-related quality of life (SCrQoL) for caregivers of a child with a developmental and epileptic encephalopathy (DEE; such as SCN2A and Dravet syndrome) and health literacy, illness perceptions, and caregiver activation. As part of a larger pre-post pilot study of an information linker service, caregivers completed a baseline questionnaire which included demographics and measures to assess SCrQoL, health literacy, illness perceptions, and caregiver activation. We used Spearman's Rho to determine relationships between variables. Seventy-two caregivers completed the questionnaire. Total SCrQoL varied widely, ranging from an 'ideal state' to 'high needs state'. Caregivers most frequently reported high needs regarding doing activities they enjoy and looking after themselves. Total SCrQoL was correlated with cognitive (r[70] = -0.414, p < 0.000) and emotional representations of illness (r[70] = -0.503, p < 0.000), but not coherence (r = -0.075, p = 0.529). Total SCrQoL was not correlated with health literacy (r[70] = 0.125, p = 0.295) or caregiver activation (r[70] = 0.181, p = 0.127). Future research should explore whether interventions that help caregivers cognitively reframe the negative experiences of having a child with a DEE, and support them to partake in activities they enjoy, boost their SCrQoL. Caregiver social care-related quality of life (SCrQoL) varied widely, from 'ideal state' to 'high needs state'. Most common high needs were doing enjoyable activities and self-care. Caregivers with higher SCrQoL may perceive their child's illness as less threatening. SCrQoL does not appear to be related to caregiver activation in this sample.

Quality of Life Among Family Caregivers of Disabled Children in Saudi Arabia.

The physical and mental health of parents can be adversely affected by their child's disability, leading to a potential decline in their overall Quality of Life (QoL). This research aimed to determine the QoL of family caregivers and compare this based on sociodemographic factors and child characteristics. An analytical cross-sectional design was employed, and data were collected from multiple rehabilitation centers for children with special needs and learning disorders in the Kingdom of Saudi Arabia. The study sample comprised 95 family caregivers who completed a self-structured questionnaire. The questionnaire included sections on sociodemographic characteristics, child characteristics, and caregivers' QoL assessed using the RAND 36-Item Short Form Health Survey (SF-36). The collected data were analyzed using the IBM Corp. Released 2022. IBM SPSS Statistics for Windows, Version 29.0. Armonk, NY: IBM Corp, employing descriptive statistics and multivariate linear regression analysis. Our findings revealed that the overall mean QoL score among caregivers was 57, ranging from 12 to 94. There were no statistically significant differences in QoL scores based on caregivers' age, gender, occupational status, or income. However, further analysis indicated significant associations between certain factors and specific domains of QoL. Specifically, caregiver education was found to be associated with role limitations due to emotional problems, while relationships with disabled children were linked to emotional well-being. The severity of the child's disability and the presence of another child with a disability in the family were associated with the bodily pain domain. Additionally, the presence of another child with a disability had an impact on perceived change in the health domain. The QoL of family caregivers varied, highlighting the significant challenges faced by certain individuals. Factors such as education level, the relationship with the child, the severity of the disability, and the presence of multiple disabled children in the family were identified as influencing caregivers' QoL. These findings emphasize the importance of developing targeted interventions that can address emotional well-being and fatigue management while promoting a supportive society.

Sleep disorders in Lewy body dementia: Mechanisms, clinical relevance, and unanswered questions.

In Lewy body dementia (LBD), disturbances of sleep and/or arousal including insomnia, excessive daytime sleepiness, rapid eye movement (REM) sleep behavior disorder, obstructive sleep apnea, and restless leg syndrome are common. These disorders can each exert a significant negative impact on both patient and caregiver quality of life; however, their etiology is poorly understood. Little guidance is available for assessing and managing sleep disorders in LBD, and they remain under-diagnosed and under-treated. This review aims to (1) describe the specific sleep disorders which occur in LBD, considering their putative or potential mechanisms; (2) describe the history and diagnostic process for these disorders in LBD; and (3) summarize current evidence for their management in LBD and consider some of the ongoing and unanswered questions in this field and future research directions.

Palliative care and end of life care in decompensated cirrhosis.

Palliative care and end of life care in decompensated cirrhosis.

Caregiving Children with Visually Impairments: Occupational Balance and Quality of Life Perspective

Several studies have shown that caregivers of children (COC) with special needs have their occupational balance (OB) or quality of life (QOL) worsening. However, the OB and QOL of COC with visual impairment are not adequately investigated. Fifty-nine participants who were the primary COC who were diagnosed with either low vision (LV) or blindness completed the study. Occupational Balance Questionerrie Turkish version and the WHO Quality of Life Scale-Short Form Turkish version were applied. The correlation analysis was used to test the correlation between the OB and QOL scores. The Mann-Whitney U used for comparing OB and QOL scores between the COC with LV and blindness. There was a positive correlation between caregivers' OB and QOL (r=0.600; p&amp;gt;0.05). There was no statistically significant difference between OB and QOL of the two groups of caregivers (p&amp;gt;0.05). There are many issues that occupational therapists should support and investigate about this family. We think that the quality of life, balance of activity and efficient use of the time of COC with VI should be further investigated by occupational therapists.

#5556 QUALITY OF LIFE IN FAMILY CAREGIVERS OF END STAGE KIDNEY DISEASE PATIENTS: A PROSPECTIVE STUDY

Abstract Background and Aims Family caregivers of patients with end stage kidney disease (ESKD) face the challenge of demanding patients’ care, in addition to their own daily tasks, which affect their well-being and quality of life (QoL). The aim of this prospective study was to assess and describe the QoL of family caregivers of ESKD patients at the beginning of kidney replacement therapy (KRT) and one year later. Method Sixty - two ESKD patients and their caregivers were recruited. Caregivers’ QoL was assessed with the Short Form-36 questionnaire and EuroQol-5Dimension-3Level. QoL of caregivers and patients was measured twice, three months after initiation of KTR (T0) (53 patients started hemodialysis and 9 peritoneal dialysis) and after the first 12 months of KTR(T1), in order to investigate the possible changes of QoL during this crucial period. Results The mean value (Table 1) of caregivers’ physical component summary (PCS) subscale was found to change significantly during study period (T0: M = 54.21, SD = 8.06 vs T1: M = 51.58, SD = 10.46, (t(61) = 2.02, p = .048). Caregivers presented a statistically significant decrease (p &amp;lt;.05) in physical health after one year of KRT. Likewise, the EQ-5D Index and the EQ-5D visual analogue scale (VAS) showed a statistically significant decline (p = .046 and p&amp;lt;.001 respectively). Finally, correlation of means of QoL dimensions between ESKD patients and their caregivers did not yield statistical significance in the particular longitudinal study. Conclusion The results provide evidence that the overall caregivers’ QoL scores deteriorated over the one-year period of KTR. Further studies of larger sizes and with a longer duration will probably better define the QoL variations of ESKD patients’ caregivers. Both groups may be benefit from an educational program before patients initiate KTR.

Interventions to Improve Outcomes for Caregivers of Patients with Advanced Cancer: a Meta-Analysis.

Family caregivers of patients with advanced cancer often have poor quality of life (QOL) and mental health. We examined the effectiveness of interventions offering support for caregivers of patients with advanced cancer on caregiver QOL and mental health outcomes. We searched Ovid MEDLINE, EMBASE, Cochrane CENTRAL, and CINAHL databases from inception through 6/2021. Eligible studies reported on randomized controlled trials for adult caregivers of adult patients with advanced cancer. Meta-analysis was conducted for primary outcomes of QOL, physical well-being, mental well-being, anxiety, and depression, from baseline to follow-up of 1-3 months; secondary endpoints were these outcomes at 4-6 months and additional caregiver burden, self-efficacy, family functioning and bereavement outcomes. Random effects models were used to generate summary standardized mean differences (SMD). Of 12,193 references identified, 56 articles reporting on 49 trials involving 8,554 caregivers were eligible for analysis; 16 (33%) targeted caregivers, 19 (39%) patient-caregiver dyads, and 14 (29%) patients and their families. At 1-3 month follow-up, interventions had a significant effect on overall quality of life (SMD 0.24 (0.10 to 0.39), I2=52.0%), mental well-being (SMD 0.14 (0.02 to 0.25), I2=0.0%), anxiety (SMD 0.27 (0.06 to 0.49), I2=74.0%), and depression (SMD 0.34 (0.16 to 0.52), I2=64.4), compared to standard care. In narrative synthesis, interventions demonstrated improvements in caregiver self-efficacy and grief. Interventions targeting caregivers, dyads, or patients and families led to improvements in caregiver QOL and mental health. These data support the routine provision of interventions to improve well-being in caregivers of patients with advanced cancer.

Interpersonal concerns of young adult surgical oncology patients with advanced cancer diagnoses: A mixed methods study.

e24225 Background: Incidence of cancer in young adults (YA) is increasing. YA patients with advanced cancer are more likely than elderly counterparts to undergo elective or palliative surgeries. A diagnosis of advanced malignancy poses unique social and emotional burdens on YA. This study aims to understand the experiences of YA cancer patients in managing interpersonal relationships and social expectations. Methods: This mixed-methods study consisted of cross-sectional patient quality of life (QOL) surveys (Functional Assessment of Cancer Therapy: General [FACT-G]), caregiver QOL surveys (Caregiver QOL – Cancer [CQOLC]), and semi-structured qualitative interviews with patients. Participants were YA ages 18-45 years with advanced-stage cancers, recruited from surgical oncology clinic at a tertiary academic institution. Interviews were transcribed and analyzed by two independent reviewers to describe themes (italicized) on social and interpersonal impacts of patients’ cancer diagnosis. Results: Interviews and patient surveys were conducted with 18 YA patients. Median time since cancer diagnosis was 15 months, 44% of patients had metastatic disease at diagnosis, and 89% of patients had previously undergone both chemotherapy and surgery for cancer treatment. 56% of patients identified their spouse or significant other as the person they were closest to, and 28% were closest to a parent or sibling. 56% of patients had children of their own who lived in the household. Median FACT-G scores were 23/28 for social/family well-being (IQR: 18-25) and 13/28 for emotional well-being (IQR: 8-17). Caregiver surveys were completed for 12 of 18 patients, revealing that most developed a closer relationship with their loved one (67%) and felt informed about their disease (92%). Qualitative interview analysis revealed themes of: information-sharing about cancer, where patients shared concerns of withholding prognostic information to give loved ones hope; impacted relationships with friends and colleagues, as patients struggled with who to disclose their cancer diagnosis to; social/physical perceptions by others, as patients worried about changes in their physical appearance (e.g. weight loss) as a result of cancer; financial concerns as a result of treatment and its future impact on the patient’s loved ones. Conclusions: This mixed methods study highlights the interpersonal concerns of YA with advanced cancers. At a phase where identity formation, social perceptions, and personal relationships may be threatened by cancer, unique psychosocial and emotional challenges arise. Programmatic changes are needed to provide appropriate support, resources, and empathetic care to this distinct population of cancer patients.

Interventions to improve outcomes for caregivers of patients with advanced cancer: A systematic review and meta-analysis.

12026 Background: More than one in ten adults in the US are family caregivers, with cancer among the most common diagnoses of care recipients. Family caregivers of patients with advanced cancer often have poor quality of life (QOL) and mental health. We examined the effectiveness of interventions offering support for caregivers of patients with advanced cancer on caregiver QOL and mental health outcomes. Methods: We searched Ovid MEDLINE, EMBASE, Cochrane CENTRAL, and CINAHL databases from inception through 6/2021. Eligible studies reported on randomized controlled trials for adult caregivers of adult patients with advanced cancer. Meta-analysis was conducted for primary outcomes of QOL, physical well-being, mental well-being, anxiety, and depression, from baseline to follow-up of 1-3 months; secondary endpoints were these outcomes at 4-6 months and additional caregiver burden, self-efficacy, family functioning and bereavement outcomes. Random effects models were used to generate summary standardized mean differences (SMD). Meta-regression was conducted for primary outcomes that were significant for the intervention, assessing for mediation effect modification by caregiver sex and age of patient and caregiver. Type I error was 0.05. PROSPERO Registration: CRD42019136321. Results: Of 12,193 references identified, 56 articles reporting on 49 trials involving 8,554 caregivers were eligible for analysis; 16 (33%) targeted caregivers (mostly psychoeducational or problem-solving interventions), 19 (39%) patient-caregiver dyads (mostly counseling/therapy), and 14 (29%) patients and their families (mostly palliative care teams). At 1-3 month follow-up, interventions had a significant effect on overall QOL (SMD 0.24 (0.10 to 0.39), I2 = 52.0%), mental well-being (SMD 0.14 (0.02 to 0.25), I2 = 0.0%), anxiety (SMD 0.27 (0.06 to 0.49), I2 = 74.0%), and depression (SMD 0.34 (0.16 to 0.52), I2 = 64.4%), compared to standard care. At 1-3-month follow-up, a larger age difference (older patient and younger caregiver) was associated with a greater positive effect on QOL (p = 0.04) and depression (p = 0.02). In narrative synthesis, interventions demonstrated improvements in caregiver self-efficacy and grief. Conclusions: Interventions targeting caregivers, dyads, or patients and families led to improvements in caregiver QOL and mental health outcomes. These data support the routine provision of available interventions to support caregivers of patients with advanced cancer.

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.

Affecting burden and cost of care for the caregiver of dependent patients with advanced stage of cancer who had an arrangement for expected death at home.

e24000 Background: The terminal stage cancer patients suffer from disease and related therapeutic processes, lead to increasing need for caring from their caregivers. This affects the quality of life(QOL) of caregivers. Currently, there is no data on burden of caregivers who caring for cancer patients who are choose to die at their home. Objective: This study examined burden of caregivers, impact on QOL and satisfaction of caregivers for patients with terminal cancer, comparing in the group of patients who die at home versus at hospital, comparing in regular care group(RC) versus palliative care group(PC). Methods: The semi-qualitative-quantitative study enrolled caregivers of advance cancer patients who had PPS &lt; 60 at Ramathibodi Hospital from Dec 2021-Nov 2022. We assessed participants on 3-time-points (enrolment, 1, 2 months) for QOL and burden via telephone interviews, questionnaires by EQ5D5L and Zarit Burden. If the patients passed away, we interviewed caregivers in qualitative study. Analysis responses were recorded, transcribed and organized thematically analyzed. Analysis stratified on care with palliative care or not, and place of death. Results: We enrolled 108 participants, child (56%) and spouses (29%). They spent carring time average of 16.56 hr/day. 52 patients have passed away: home death(34) and hospital death(18). No significant difference in burden score and QOL between RC and PC. Burden score significantly increasing when time of death approach in both groups. However, significantly higher satisfaction score in caregivers of patients who died at home(P &lt; 0.001). In patient who died in hospital, early integrated palliative showed significantly higher satisfaction score(P = 0.046). Qualitative analysis revealed 3 primary themes, 1) caregiver burden is increasing and chronic stress condition until the death of their loves and still continue post their death 2) need more help in coping and nursing strategies, more early palliative care can relieve their distresses 3) opinion of the caregivers in group of hospital death, If they could turn back time, they would have promised to look after their lovers better in changing the pass away at their home. Conclusions: Caregivers for terminal cancer patients have a high burden. However, caregiver of patients who died at their home rather have more satisfaction. Early integrated palliative care improves satisfaction in caregiver of patients who died at hospital. [Table: see text]

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.

Epidemiology, survival, costs, and quality of life in adults with short bowel syndrome.

Short bowel syndrome (SBS) is a rare disorder with known physical, psychosocial, and economic burdens and significant morbidity and mortality. Many individuals with SBS require long-term home parenteral nutrition (HPN). The incidence and prevalence of SBS is difficult to determine because it is often based on HPN usage and may not account for those who receive intravenous fluids or achieve enteral autonomy. The most common etiologies associated with SBS are Crohn's disease and mesenteric ischemia. Intestinal anatomy and remnant bowel length are prognostic for HPN dependency, and enteral autonomy confers a survival advantage. Health economic data confirm that PN-related costs are higher for hospitalizations than at home; yet significant healthcare resource utilization is necessary for successful HPN, and patients and families report substantial financial distress that impacts quality of life (QOL). An important advancement in QOL measurement is the validation of HPN- and SBS-specific QOL questionnaires. In addition to the known factors negatively impacting QOL, such as diarrhea, pain, nocturia, fatigue, depression, and narcotic dependency, research has shown that the volume and number of PN infusions per week is associated with QOL. Although traditional QOL measurements describe how underlying disease and therapy influence life, they do not assess how symptoms and functional limitations affect the QOL of patients and caregivers. Patient-centered measures and conversation focused on psychosocial issues helps patients with SBS and HPN dependency better cope with their disease and treatment. This article presents a brief overview of SBS, including epidemiology, survival, costs, and QOL.

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.

Quality of Life in Caregivers of Patients with Brain Tumours: A Systematic Review and Thematic Analysis

Objective. (1) Examine QoL of caregivers of patients with brain tumours compared to population norms and other cancer caregiver groups, (2) appraise the content of quantitative QoL outcome measures utilised, and (3) assess to what extent QoL measures used in research align with caregivers’ priorities. Methods. Systematic literature search of studies including caregivers of brain tumour patients using self-completed assessments of QoL. Extracted data from included studies included quantitative QoL outcome data, QoL outcome measures utilised, and the included QoL domains. The impact of brain tumour patient caregiving was assessed by summarising included data comparing brain tumour caregivers to other cancer caregivers and normative population data. QoL measures utilised by the studies and their domains were extracted, coded, and analysed by themes. The rates of investigation by theme were then compared to existing data on caregiver-own preference in relation to QoL. Results. 49 studies, including 57 outcome measures, incorporating a combined 124 QoL domains. Brain tumour caregivers reported lower QoL outcomes than population norms but similar to other cancer caregiver groups. Thematic analysis of QoL domains generated 7 themes: caregiving burden and adaptation, existential and self, family and social support, finances, information needs, physical symptoms and functioning, and psychological symptoms and wellbeing. The most investigated themes were physical and psychological symptoms, the most important for caregivers themselves were family and social support. Conclusions. Caregiving for brain tumour patients is shown to negatively affect QoL, particularly mental health, burden, and social life. Existing QoL research in caregivers of brain tumour patients predominantly utilises generic QoL measures designed for use in patients and draws a medicalised view of QoL priorities. The few studies using caregiver-specific QoL measures demonstrated closer alignment to caregiver preferences such as family and social support.

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.

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.

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.