Care Quality Of Life Research Articles

The effects of a facilitator-enabled online multicomponent iSupport for dementia programme: A multicentre randomised controlled trial

BackgroundMulticomponent interventions with carers of people with dementia demonstrate positive effects on the health and quality of life for carers and care recipients. The World Health Organization's iSupport for Dementia is an evidence-based online psychoeducation programme for carers. However, the programme was mainly implemented as a self-learning tool which might have limited its positive effects on carers and care recipients. Evidence for online multicomponent interventions with carers that incorporates the iSupport programme remains unknown. ObjectivesThis study aimed to partner with health and social care organisations to evaluate the effects of a facilitator-enabled online multicomponent Chinese iSupport programme, which included psychoeducation using the iSupport programme, facilitator-enabled carer support groups and access to care services. DesignA multicentre randomised controlled trial. Settings and participantsParticipants were family carers in Australia and greater China. We recruited participants to the study from 1st November 2021 to 30th June 2022. MethodsThe intervention group received the Chinese iSupport programme delivered online. The intervention lasted for 6 months. Our primary outcome was carers' quality of life. Our secondary outcomes were carers' self-efficacy, social support, distress reactions to changed behaviours, care recipients' frequency of changed behaviours, quality of life, unplanned hospital admissions, emergency department presentations and permanent admissions to nursing homes. The outcomes were measured at baseline (T0), 6 months (T1) and 9 months (T2). We applied a multivariate mixed effect linear regression model to capture the group effect, time effect and their interaction. ResultsIn total, 266 eligible family carers agreed to participate and were randomly assigned to an intervention group (n = 131) or a usual care group (n = 135). Most carers were women with a mean age of 53 years. The intervention group showed a statistically significant higher score of mental-health-related quality of life (mean difference = 4.1, 95 % CI: 1.5, 6.8, p = 0.002), self-efficacy in controlling upsetting thoughts (mean difference = 7.1, 95 % CI: 2.2, 12.0, p = 0.005) and lower score of distress reactions to changed behaviours (mean difference = −0.1, 95 % CI: −0.3, −0.03, p = 0.012) than the usual care group at T1. ConclusionThe facilitator-enabled online multicomponent Chinese iSupport programme demonstrated positive effects for carers on mental health-related quality of life, controlling upsetting thoughts and distress reactions to changed behaviours of people with dementia. Trial registrationThis study is registered in the Australia New Zealand Clinical Trials Registry on 12th March 2021 (ACTRN12621000276853). Tweetable abstractThe facilitator-enabled online multicomponent Chinese iSupport programme improved family carers' mental health-related quality of life, control of upsetting thoughts and distress reactions to changed behaviours of people with dementia.

Approach to the Patient: New Era Emerges for Craniopharyngioma Management.

Papillary craniopharyngioma (PCP) and adamantinomatous craniopharyngioma (ACP) are distinct, slow-growing tumors of the suprasellar region. Their location, composition, and biology have historically evaded successful surgical radiation and medical therapy. Meanwhile compromise of critical structures either by tumor or treatments increase morbidity, impacting patient and carer quality of life. There has been a paradigm shift in the management of PCP, stemming from the discovery of BRAFV600E mutation in its tumorigenesis. Such a treatment breakthrough may soon be the case for ACP, changing the landscape of craniopharyngioma management. We use a case of ACP partially responding to ERK inhibitor therapy to demonstrate chronicity of disease progression and discuss modern management strategies highlighting the importance of access to tumor agnostic clinical trials, and future directions.

Quality of life and family functioning 12 months after diagnosis of childhood brain tumour: A longitudinal cohort study.

The wellbeing of a child with brain tumour is affected by several factors. We present the first investigation of quality of life and family functioning in a parent and child across the first 12 months after diagnosis, examining potential factors to guide the provision of psychosocial resources to families who most need them. Data were collected from parents/carers in Queensland, Australia, from 2020 to 2023. Child (parent/carer-proxy reported) and carer quality of life was assessed across three timepoints (repeated measures analysis of variance [ANOVA]) and by five potential co-variates (mixed between-within ANOVA). Family functioning was assessed across two timepoints (repeated-measures t-test), and by potential co-variates (repeated measures ANOVA). Univariate relationships were explored with Pearson's correlation coefficient; significant relationships were entered into multiple regression models. Ninety-six diverse families were represented. Quality of life (child, carer) and family functioning did not change across time. Children from households with lower income reported worse cognitive difficulties (p=.023) and pain and hurt (p=.013) than those from a higher income. Caregiver quality of life was poorer for those whose child had received chemotherapy and/or radiation, was aged less than 4 years at diagnosis, and had a lower household income. At 12 months, caregiver quality of life was correlated with family functioning (r=-.45, p<.001), with positive adaptation being a significant key predictor (beta=-.66, p<.005). The following factors indicate a need for increased early psychosocial support: cognitive difficulties, aged<4 years at diagnosis, receiving chemotherapy and/or radiation, and low household income.

Integrating the assessment of quality of life in care and research in pulmonary fibrosis.

Pulmonary fibrosis (PF) negatively influences health-related quality of life (HRQOL). Patients living with PF have voiced the desire for a focus on symptoms and HRQOL in both disease monitoring and treatment decisions. Currently available disease modifying treatments do little to impact HRQOL. Newer studies evaluating pharmacologic and nonpharmacologic therapies targeting symptoms and HRQOL in PF have been conducted with some promising results. There is increasing recognition of the importance of incorporating HRQOL as a higher tier endpoint in clinical trials. Disease-specific measure of HRQOL have been developed for those living with PF, and there is ongoing work to better understand the validity and reliability characteristics of these tools. In addition to research, there is recognition of the potential benefits of measuring HRQOL and symptoms in clinical practice in facilitate integrating patient perspective into care and allow for more personalized treatment approaches. There is increased momentum to discover treatments that impact HRQOL in PF. More work is desperately needed to identify better treatment targets, and to incorporate HRQOL and symptoms as higher tier endpoints in clinical trials. Further work is also needed to address the practicalities of integrating HRQOL measurement into clinical care.

Enhancing end–of–life care quality and achieving a good death for the elderly in Japan

BackgroundIn the context of an aging populations, there is an escalating need for palliative care tailored to the needs of the elderly. This study aimed to assess differences in symptoms and good death among the elderly, along with the structures and processes involved in end–of life care, and to explore the impact of age on achieving a good death. MethodsWe conducted a questionnaire survey for bereaved family members of patients with cancer, heart disease, stroke, pneumonia, and kidney failure in 2019 and 2020. The study population was categorized into the following age groups: ≤64, 65–74, 75–84, and ≥85. The outcomes included symptom intensity, achievement of a good death, and receipt of quality care. ResultsIn total, 62,576 bereaved family members agreed to participate in the survey (response rate; 54.0 %). The weighted percentages of 'severe' and 'very severe’ symptoms decreased with age. These trends were observed across age groups, even among the elderly. The strongest effect of age on achieving a good death was found for 'feeling that life is complete’ with reference to those aged ≤64 years: 65–74 years (odds ratio [OR]; 2.09, 95 % CI; 1.94 to 2.25), 75–84 years (OR; 4.86, 95 % CI; 4.52 to 5.22) and ≥85 years (OR; 12.8, 95 % CI; 11.9 to 13.8). ConclusionAge-specific differences were observed in quality of death, quality of care, and symptom intensity. It is important to provide individualized consideration for each age group rather than categorizing them broadly as the elderly when caring for them.

Burden, Depression and Quality of Life in Carers of Newly Diagnosed Advanced Cancer Patients in Egypt

ContextThe goal of palliative care (PC) is to improve the quality of life (QoL) of patients with life-limiting illnesses as well as their families. Ideally, PC is integrated early in the course of life-limiting illnesses. Less attention has been paid to the need for early PC for family caregivers (FCs) in lower-income settings. ObjectivesThis observational cross-sectional study was conducted to explore the burden experienced by FCs of newly diagnosed incurable cancer patients in Egypt and characterize its relation to depression and QoL. MethodsNinety-five adult FCs of adult patients with newly diagnosed incurable cancer completed the 22-item Zarit Burden Interview (ZBI-22), Patient Health Questionnaire (PHQ-9), and Short Form 12 (SF-12) to assess caregiving burden, depression, and QoL among FCs, respectively. ResultsThe median (IQR) ZBI-22 score was 17(11–24) and 34% of FCs had significant burden (ZBI-22 score > 20). Assistance with late loss activities of daily living and availability for longer caregiving duration were associated significantly with higher caregiving burdens (P = 0.004 and 0.047, respectively). FCs with significant burden had significantly higher PHQ-9 scores (P = 0.0003). There was a significant negative correlation between ZBI-22 scores and the bodily pain, general health, mental health, physical function, role emotional, and social function subscales/items of SF-12. ConclusionsA substantial proportion of Egyptian FCs of incurable cancer patients experience significant burden early in the course of the disease. This burden is associated with depressive symptoms and worse QoL dimensions, physical, psychological, and social. In a lower-income setting, early PC interventions for FCs of incurable cancer patients are needed.

ICare – a self-directed, interactive online program to improve health and wellbeing for people living with upper gastrointestinal or hepato-pancreato-biliary cancers, and their informal carers: the study protocol for a Phase II randomised controlled trial

BackgroundUp to 70% of people diagnosed with upper gastrointestinal (GI) tract or hepato-pancreato-biliary (HPB) cancers experience substantial reductions in quality of life (QoL), including high distress levels, pain, fatigue, sleep disturbances, weight loss and difficulty swallowing. With few advocacy groups and support systems for adults with upper GI or HPB cancers (i.e. pancreas, liver, stomach, bile duct and oesophageal) and their carers, online supportive care programs may represent an alternate cost-effective mechanism to support this patient group and carers. iCare is a self-directed, interactive, online program that provides information, resources, and psychological packages to patients and their carers from the treatment phase of their condition. The inception and development of iCare has been driven by consumers, advocacy groups, government and health professionals. The aims of this study are to determine the feasibility and acceptability of iCare, examine preliminary efficacy on health-related QoL and carer burden at 3- and 6-months post enrolment, and the potential cost-effectiveness of iCare, from health and societal perspectives, for both patients and carers.Methods and analysisA Phase II randomised controlled trial. Overall, 162 people with newly diagnosed upper GI or HPB cancers and 162 carers will be recruited via the Upper GI Cancer Registry, online advertisements, or hospital clinics. Patients and carers will be randomly allocated (1:1) to the iCare program or usual care. Participant assessments will be at enrolment, 3- and 6-months later. The primary outcomes are i) feasibility, measured by eligibility, recruitment, response and attrition rates, and ii) acceptability, measured by engagement with iCare (frequency of logins, time spent using iCare, and use of features over the intervention period). Secondary outcomes are patient changes in QoL and unmet needs, and carer burden, unmet needs and QoL. Linear mixed models will be fitted to obtain preliminary estimates of efficacy and variability for secondary outcomes. The economic analysis will include a cost-consequences analysis where all outcomes will be compared with costs.DiscussioniCare provides a potential model of supportive care to improve QoL, unmet needs and burden of disease among people living with upper GI or HPB cancers and their carers.Australian and New Zealand Clinical Trials RegistryACTRN12623001185651. This protocol reflects Version #1 26 April 2023.

Long-term impact of the COVID-19 pandemic on the quality of life of people with dementia and their family carers.

Few studies have longitudinally mapped quality of life (QoL) trajectories of newly diagnosed people with dementia and their carers, particularly during coronavirus disease-2019 (COVID-19). In a UK cohort study, 261 newly diagnosed people with dementia and 206 family carers were assessed prior to the pandemic (July 2019-March 2020), followed up after the first lockdown (July-October 2020) and then again a year and 2 years later. Latent growth curve modelling examined the level and change of QoL over the four time-points using dementia-specific QoL measures (DEMQOL and C-DEMQOL). Despite variations in individual change scores, our results suggest that generally people with dementia maintained their QoL during the pandemic and experienced some increase towards the end of the period. This contrasted with carers who reported a general deterioration in their QoL over the same period. 'Confidence in future' and 'Feeling supported' were the only carer QoL subscales to show some recovery post-pandemic. It is positive that even during a period of global disruption, decline in QoL is not inevitable following the onset of dementia. However, it is of concern that carer QoL declined during this same period even after COVID-19 restrictions had been lifted. Carers play an invaluable role in the lives of people with dementia and wider society, and our findings suggest that, post-pandemic, they may require greater support to maintain their QoL.

Psychological distress and convergence of own and proxy health-related quality of life in carers of adults with an intellectual disability.

In adults with an intellectual disability, health-related quality of life (HRQoL) is often measured by proxy report. This cross-sectional study investigated whether the mental health of proxy raters impacts the way they rate HRQoL. In this study, 110 carers of adults with an intellectual disability completed measures of psychological distress (Kessler-6) and HRQoL (EQ-5D-3L) about their own HRQoL and that of the care recipient. Differences between HRQoL scores as rated by the carer about themselves and the care recipient were calculated (convergence scores) and multiple regression models were fitted to estimate the association between proxy psychological distress and convergence scores for subjective/objective HRQoL controlling for support needs of the care recipient, carer age and gender of care recipient. There was a significant association between psychological distress and subjective HRQoL convergence scores (r=.92; P=0.03; 95%; CI: -1.76 to -0.09). There was no association between psychological distress and objective HRQoL convergence scores (r=.01; CI -0.02 to 0.001; P=0.08). The association between psychological distress and HRQoL scores was no longer present when models did not include convergence scores. Carers experiencing more psychological distress tended to rate their own and the care recipients' subjective HRQoL more similarly. Objective HRQoL measures did not show this convergence in scores with increasing carer psychological distress. Findings differed when the analysis approach was changed, suggesting the results above require replication in future studies.

Modelling Spillover Effects on Informal Carers: The Carer QALY Trap.

The provision of informal (unpaid) care can impose significant 'spillover effects' on carers, and accounting for these effects is consistent with the efficiency and equity objectives of health technology assessment (HTA). Inclusion of these effects in health economic models, particularly carer health-related quality of life (QOL), can have a substantial impact on net quality-adjusted lifeyear (QALY) gains and the relative cost effectiveness of new technologies. Typically, consideration of spillover effects improves the value of a technology, but in some circumstances, consideration of spillover effects can lead to situations whereby life-extending treatments for patients may be considered cost ineffective due to their impact on carer QOL. In this piece we revisit the classic 'QALY trap' and introduce an analogous 'carer QALY trap' which may have practical implications for economic evaluations where the inclusion of carer QOL reduces incremental QALY gains. Such results may align with a strict QALY-maximisation rule, however we consider the extent to which this principle may be at odds with the preferences of carers themselves (and possibly society more broadly), potentially leading decision makers into the carer QALY trap as a result. We subsequently reflect on potential solutions, highlighting the important (albeit limited) role that deliberation has to play in HTA.

How well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in Australia?

PurposeIdentify aspects of quality of life (QoL) important to Australian informal carers and explore how well the Adult Social Care Outcomes Toolkit for Carers, Care-related Quality of Life instrument and Carer Experience Scale capture these aspects in the Australian context.MethodsOnline questionnaires were completed by Australian informal carers. Socio-demographics, open-ended questions: positive/negative aspects of caring and QoL aspects missing from the instruments, and ranking of the instrument domains was used to explore the content of the instruments. Instruments were scored using preference-weighted value sets (reported in another paper). Content analysis was used to analyse the open-ended responses. Chi-squared test looked at differences in domain importance. Descriptive analyses summarised all other information.ResultsEight themes were identified: Behaviour-mood of the care recipient, Caring responsibilities, Finances, Health, Own life, Perception of carers, Relationship with care recipient and Support. Many aspects of carer QoL mentioned as missing in the instruments appeared covered by the domains, of which all were reported as important. The highest ranked domain was relationship with the care recipient. The influence of the care recipient specific support, behaviour/mood and health on carer QoL appear absent in all instruments.ConclusionThe content of the three instruments appears relevant in an Australian setting. The influence of care recipient’s health and well-being on carer QoL should be considered, along with spillover effects. A content and/or face validity analysis is required to confirm differences in item interpretation in Australian informal carers.

Determining the Relationship Between Seizure-Free Days and Other Predictors of Quality of Life in Patients with Dravet Syndrome and Their Carers from FFA Registration Studies.

Dravet syndrome (DS) is a rare, lifelong epileptic encephalopathy characterised by frequent and severe seizures associated with premature mortality. Typically diagnosed in infancy, patients also experience progressive behavioural, motor-function and cognitive decline. Twenty percent of patients do not reach adulthood. Quality of life (QoL) is impaired for both patients and their carers. Reducing convulsive seizure frequency, increasing convulsive seizure-free days (SFDs) and improving patient/carer QoL are primary treatment goals in DS. This study explored the relationship between SFDs and patients' and carers' QoL to inform a cost-utility analysis of fenfluramine (FFA). In FFA registration studies, patients (or their carer proxies) completed the Paediatric QoL inventory (PedsQL). These data were mapped to EuroQol-5 Dimensions Youth version (EQ-5D-Y) to provide patient utilities. Carer utilities were collected using EQ-5D-5L and mapped to EQ-5D-3L to align patient and carer QoL on the same scale. Linear mixed-effects and panel regression models were tested and Hausman tests identified the most appropriate approach for each group. On this basis, a linear mixed-effects regression model was used to examine the relationships between patient EQ-5D-Y and clinically relevant variables (age, frequency of SFDs per 28days, motor impairments and treatment dose). A linear panel regression model examined the relationship between SFDs and carer QoL. After adjustment for age and underlying comorbidities, the patient regression model showed that SFDs per 28days was a significant predictor of QoL. Each additional patient-SFD increased utility by 0.005 (p < 0.001). The carer linear panel model also showed that increasing SFDs per 28days was a significant predictor of improved QoL. Each additional SFD increased carer utility by 0.014 (p < 0.001). This regression framework highlights that SFDs are significantly correlated with both patients' and carers' QoL. Treatment with effective antiseizure medications that increase SFDs directly improves QoL for patients and their carers.

Evaluation of a comprehensive multicomponent support program for people with dementia and their carers: Study protocol for pilot trial

AbstractBackgroundA growing body of evidence demonstrates the importance of comprehensive multicomponent, person‐centred interventions, including education and support for people living with dementia and their carers following a diagnosis of dementia. However, in Australia, people with dementia and carers frequently face challenges accessing appropriate information, care and support services to support living in the community with different stages of dementia.MethodThe Sustainable Personalised Interventions for Cognition, Care, and Engagement (SPICE) program consists of evidence‐based therapeutic activities for people with dementia and carers. The project aims to recruit 24 dyads (24 people with dementia and 24 carers; four groups of six) to participate in a twelve‐week, twice per week support program using a randomised waiting‐list study design. The SPICE program intervention is delivered by allied health professionals and includes physical activity, cognitive stimulation therapy, and nutrition assessment for the person with dementia. Carers will receive support aimed to promote capacity building and self‐care, including practical strategies to manage behavioural changes. The dyad will also receive the Care of People with Dementia in their Environments (COPE) program which focuses on problem solving and goal setting in the home.ResultThe primary outcome for the intervention is quality of life of the person with dementia using the health‐related quality of life (DEMQOL) questionnaire. Secondary outcomes will assess cognition (Addenbrookes Cognitive Examination (ACE‐III)), neuropsychiatric symptoms (NPI), health and functional ability (WHODAS 2.0), physical function assessments, carer quality of life (C‐DEMQOL), and program satisfaction of the dyad. Categorical data will be summarised using frequency statistics and visualisation. Continuous and other numerical data will be visually explored and summarised using sample descriptive statistics, selected as appropriate based on apparent distributions.ConclusionThe SPICE program has the potential to promote quality of life of people with dementia and potentially delay cognitive decline while also providing a toolkit for carers to reduce carer burden. If successful, the outcomes of the study have the potential to improve post‐diagnostic care and clinical practice for people with dementia and their carers in Australia and inform services worldwide.

Validity and Reliability of the Korean Version of the Parkinson's Disease Questionnaire-Carer.

The importance of the quality of life (QOL) of carers has been increasingly recognized as it has a wide range of effects on the psychological, emotional, and social outcomes of patients with Parkinson's disease (PD). Understanding their QOL is important as it reflects their unique characteristics; however, there have been few studies on this in Korea. This study aimed to translate and validate the Korean version of the Parkinson's Disease Questionnaire-Carer (PDQ-Carer). This was a methodological study that included a translation process and a cross-sectional investigation. The Korean version of the scale was developed using back translation, semantic adjustment, and pretests. The final version was self-administered by 125 Korean family carers. Cronbach's alpha values were used to assess the internal consistency of the PDQ-Carer. Exploratory and confirmatory factor analyses were used to validate the translated scale. Exploratory factor analysis identified four factors that accounted for 64.51% of the variance. A modified model using modification indices was found to fit the data well in the confirmatory factor analysis. That factor analysis supported the structure of the original four factors with relocation of several items that reflected Korean culture. Cronbach's alpha values were 0.96 for the total scale, 0.93 for personal and social activities, 0.89 for strain, 0.85 for anxiety and depression, and 0.85 for self-care. This study verified that the Korean version of the PDQ-Carer can be used to acquire important information about the multidimensional aspects of the QOL of Korean carers for patients with PD.

PCR16 Variables Associated With Carer Quality of Life in England Using a Large, National Data Set

PCR16 Variables Associated With Carer Quality of Life in England Using a Large, National Data Set

342 THE DISCRIMINATORY VALUE OF ANP-LED CGA ON PATIENT REPORTED SYMPTOMS AND IMPACT ON CARERS: A CROSS-SECTIONAL STUDY

Abstract Background Comprehensive Geriatric Assessment (CGA) is a cornerstone in geriatric care. Objective findings from CGA may differ to patient and carer reported symptoms. This study compared patient reported symptoms with objective metrics collected during CGA and explored the relationship with carer burnout. Methods Cross-sectional study of patients attending an Advanced Nurse Practitioner (ANP)-led integrated care clinic. Patient-reported geriatric syndromes included low mood, memory concerns, incontinence, falls or dizziness. CGA metrics collected included Barthel Index, Lawton IADLs, MOCA scores, Geriatric depression scale scores, Rockwood Clinical Frailty Scale (CFS) scores and presence or absence of carer burnout. Descriptive statistics were used to compare the relationship between these variables and logistic regression explored the magnitude of association with carer burnout. Results We reviewed 99 CGAs over three months. Median age was 81 (IQR 75–86) with 62% female. Cognitive impairment was present in 96% of patients. Self-reported memory trouble was associated with lower MOCA scores (9 vs 23, p &amp;lt; 0.001) and the presence of dizziness was associated with an increased prevalence of falls (89% vs 24%, &amp;lt; 0.001). The presence of incontinence and functional dependency on IADL were both associated with carer strain and a larger magnitude of association with carer strain was seen with increasing frailty (OR 13.7, 95% CI 3.8-58.8 for moderate to severe frailty) than moderate to severe cognitive impairment (OR 8, 95% CI 3.0–24.1) Conclusion Older people reported a wide range of symptoms often subtle, some of which are unmasked during CGA. The resultant frailty syndromes often represent increasing degrees of functional impairment impacting on patient and carer quality of life. Striking the balance between patient reported symptoms and objective measurement is important to allow individualised care pathways to be developed as well as highlighting patients at risk of functional and cognitive decline.

Understanding the Role, Quality of Life and Strategies Used by Older Carers of Older People to Maintain Their Own Health and Well-Being: A National Australian Survey.

IntroductionCarers play a critical role in supporting older people with health problems to remain living at home. This study aimed to understand the role and quality of life of older carers of older people and identify strategies used to manage their own health and well-being.MethodsOlder carers (aged ≥50 years) of older people (aged ≥65 years) in Australia participated in a cross-sectional survey focused on carer roles, self-rated health, information and activities used to maintain their carer role and health, barriers to accessing health care, and assessment of quality of life (QoL) using the Dementia Quality of Life Scale for Older Family Carers. Multiple regression analysis examined relationships between variables and the QoL outcome.ResultsThe survey was completed by 189 older carers (mean age: 68 years; SD = 9.3). Most were female (83.5%), 80.2% providing care daily and 47.8% provided ≥six hours care daily. Almost half (45.1%) self-reported their health as average or below. Despite rating ensuring personal health as very important (mean importance 8/10), only 46.3% reported receiving support from their general practitioner for their carer role. The most common barrier to accessing care for themselves was “not having enough time”. Factors independently associated with poorer carer QoL were living with the care-recipient, caring for someone with depression/anxiety and poor care-recipient health. Factors independently associated with higher carer QoL were placing high importance on personal health, receiving assistance from a specialist clinic as a carer, and older age.ConclusionOlder carers of older people provide high levels of care and experience reduced quality of life. Innovative approaches that provide integrated care and support for older carers to promote their QoL are urgently needed.

The quality of life of older carers and the people they support: An international scoping review.

Older carers, aged 65 or over, may find it difficult to balance caring while maintaining their own health and quality of life (QoL). For older carers, especially, established approaches to separately identifying, assessing and addressing carers' and care-recipients' needs, may not fully consider the interwoven nature of caregiving relationships and the ways in which community-based social care services may impact the QoL of both parties. The purpose of this scoping review is to identify and synthesise what is already known about the QoL of older carers and care-recipients, considered together, which we refer to as 'dyadic QoL'; both in general, and with regard to the impact of community-based social care. We searched 16 electronic databases and grey literature in October and November 2020. A total 822 items were identified and reviewed based on the inclusion criteria: focusing on older carers and care-recipients from a dyadic perspective and their QoL or well-being, published since 2000 and in English. Fourteen papers were thematically analysed, and the findings were presented under two themes. First, the value of applying an overarching conceptual framework of 'interdependence theory' in understanding dyadic QoL, including two broad approaches: dyadic data analysis and the dynamics of caring relationships. Second, a number of papers highlighted the role of support from family, friends and neighbours and community-based social care services in promoting QoL outcomes of caring dyads. This review emphasised that considering the QoL of carers and care-recipients, together, would potentially improve the understanding of care needs, provision of care services and QoL outcomes. However, there is limited and fragmentary evidence about dyadic QoL or the impact of social care services on dyadic QoL outcomes. Future work is required to explore and evaluate the use of a dyadic approach in social care practice and research.

Measuring Quality of Life in Chronic Limb-threatening Ischemia Patients and Informal Carers: A Scoping Review.

To review quality of life (QOL) instruments for chronic limb-threatening ischemia (CLTI) patients and informal carers, and their use in QOL and cost-utility analysis (CUA) studies. CLTI is a global health problem with significant morbidity affecting patients and informal carers. QOL is increasingly measured for holistic outcomes assessment and CUA. However, measurement instruments in CLTI are poorly understood. MEDLINE, EMBASE, PsycINFO, CINAHL, COSMIN, PROQOLID, CEA registry, and NHS EED databases were searched for all English language studies up to May 2021. Features of instruments, evidence of measurement property appraisal, and trends in use were assessed. Prospective protocol registration (Open Science Framework: https://doi.org/10.17605/OSF.IO/KNG9U ). A total of 146 studies on QOL instruments (n=43), QOL outcomes (n=97), and CUA (n=9) were included. Four disease-specific QOL instruments are available for lower extremity arterial disease (intermittent claudication or CLTI). VascuQoL-25 and VascuQoL-6 have been used in CLTI. There is no CLTI-specific instrument. Of 14 generic instruments, SF-36, EQ-5D-3L, NHP, and WHOQOL-BREF were most common. Studies reporting partial measurement property appraisal favored VascuQoL-25, VascuQoL-6, and SF-36. Feasibility considerations include mode of administration and responder burden. None of 4 available carer-specific instruments have been used in CLTI. Since 1992, the number of QOL studies has increased considerably, but CUA studies are scarce. Informal carers have not been assessed. This review provides a comprehensive reference for QOL measurement in CLTI that helps end-users with instrument selection, use, and interpretation. However, a CLTI-specific instrument is needed. There is an opportunity to benefit society through future CUA studies and evaluation of QOL in informal carers.

Creating ‘Partnership in iSupport program’ to optimise family carers’ impact on dementia care: a randomised controlled trial protocol

BackgroundThe majority of people with dementia are cared for by their family members. However, family carers are often unprepared for their caring roles, receiving less education and support compared with professional carers. The consequences are their reduced mental and physical health and wellbeing, and that of care recipients. This study protocol introduces the ‘Partnership in iSupport program’ that includes five interventional components: managing transitions, managing dementia progression, psychoeducation, carer support group and feedback on services. This health services research is built on family carer and dementia care service provider partnerships. The aims of the study are to evaluate the effectiveness, cost-effectiveness and family carers’ experiences in the program.MethodsA multicentre randomised controlled trial will be conducted with family carers of people living with dementia from two tertiary hospitals and two community aged care providers across three Australian states. The estimated sample size is 185 family carers. They will be randomly assigned to either the intervention group or the usual care group. Outcomes are measurable improvements in quality of life for carers and people with dementia, caregiving self-efficacy, social support, dementia related symptoms, and health service use for carers and their care recipients. Data will be collected at three time points: baseline, 6 months and 12 months post-initiation of the intervention.DiscussionThis is the first large randomised controlled trial of a complex intervention on health and social care services with carers of people living with dementia in real-world practice across hospital and community aged care settings in three Australian states to ascertain the effectiveness, cost-effectiveness and carers’ experiences of the innovative program. We expect that this study will address gaps in supporting dementia carers in health and social care systems while generating new knowledge of the mechanisms of change in the systems. Findings will strengthen proactive health management for both people living with dementia and their carers by embedding, scaling up and sustaining the ‘Partnership in iSupport program’ in the health and social care systems.Trial registrationThe Australian New Zealand Clinical Trials Registry (ANZCTR). ACTRN12622000199718. Registered February 4th, 2022.