Caregiver Outcomes Research Articles

Developing a Help Desk Service for Enhanced Coordination in Health Informatics Projects: A Sharepoint and Power Automate Approach.

Healthcare projects necessitate effective collaboration between clinical and technical partners, particularly during pivotal phases like lab testing and piloting. However, challenges in coordination often impede seamless collaboration, leading to inefficiencies and delays. This paper presents a comprehensive approach to developing a help desk service tailored for CAREPATH projects, leveraging SharePoint services and Power Automate. The solution aims to bridge communication gaps, foster collaboration, and enhance coordination among clinical and technical partners. Through iterative development and testing, we refined the system based on stakeholder feedback, resulting in streamlined workflows and improved document management. During the lab testing phase, the help desk system demonstrated significant improvements in resolution duration, communication efficiency, and success solution rates. Stakeholder feedback highlighted enhanced collaboration and improved access to project documentation. With successful testing, the help desk is poised for implementation in subsequent phases, promising further enhancements in patient engagement, technology integration, and scalability. These findings underscore the critical role of help desks in healthcare ICT projects, offering a transformative approach to project management and stakeholder collaboration. Future directions include enhancing patient engagement, leveraging advanced technologies, and conducting longitudinal studies to evaluate long-term impact. Embracing these directions will drive positive change, delivering better outcomes for patients and caregivers in healthcare ICT projects.

The effect of long-term care insurance on women’s health outcomes in China: evidence from a disability inclusion action

BackgroundLong-term care insurance (LTCI) in China provides financial and care security for persons with disabilities and includes caregivers in the paid labour workforce. However, it is unclear how the LTCI affects health outcomes in female recipients, female caregivers, and female non-recipients and female non-caregivers.MethodsUsing the China Health and Retirement Longitudinal Study data and staggered difference-in-differences method, we evaluated the effect of LTCI on health outcomes in women with different roles, including female recipients, female caregivers, and female non-recipients and female non-caregivers, and discussed the heterogeneity of the effect on women’s health outcomes.ResultsLTCI statistically significant increased self-rated health and reduced depression in women and improved the health in women with different roles by increasing self-rated health in female recipients, reducing chronic diseases in female caregivers, and reducing depression in female non-recipients and female non-caregivers. There was a more pronounced improvement in health outcomes among women in the west and northeast and women in rural village.ConclusionsAfter the implementation of LTCI, health outcomes in female recipients, female caregivers, and female non-recipients and female non-caregivers were improved. LTCI’ improvement on women’s health outcomes was heterogeneous geographically and socially. Our findings highlight the importance of delivering differentiated health interventions for women with different roles in the implementation process of LTCI and minimizing women’s health inequalities in geography and society.

Randomized controlled trial of the parents as teacher home visiting program: Outcomes of the intervention on families at six month follow-up

Family support programs are considered central to improving the health and development of children, and home visitation remains one of the most frequently used early intervention strategies. This study utilized a randomized controlled trial (RCT) design to test the effectiveness of the Parents as Teachers (PAT) home visiting program intervention on child and caregiver outcomes, measured at six months post enrollment, with families randomized to study groups. Four PAT affiliates selected for the study are “blue ribbon” programs that meet certain quality standards. A total of 461 families (a 69 % retention rate) completed both baseline and 6-month data collection, including n = 295 for intervention and n = 166 for control. Differential attrition was 3.7 %. Baseline equivalency tests confirmed that the random assignment was effective and the groups were equivalent. Significant differences were observed between intervention and control groups, favoring the PAT intervention group, in 3 of the 4 domains assessed: child development, including Vineland-II Listening and Understanding and Talking and frequency of reading to the child; parenting practices, including improved sense of parenting efficacy and hopefulness; and family health and safety, including improved safety practices at home and reduced risk scores that capture depression and parenting stress. Estimated effect sizes for significant measures ranged from 0.12 to 0.28 and thus were in the range of what would be considered to have meaningful impact when compared with similar studies. Our findings contribute significantly to the understanding of home visitation program outcomes and adds to existing research by showing gains in child development that can be attributed to the PAT program. The RCT provides valuable evidence supporting the PAT program’s role in enhancing child development, improving parenting practices, and ensuring family health and safety. However, the lack of difference in service utilization between groups and the challenges faced during the study highlight the need for consideration of external factors, such as the impact of the COVID-19 pandemic on service availability and utilization. This study contributes to the broader understanding of early childhood interventions and their efficacy in real-world, community settings.

How effective are non-pharmacological interventions for family caregivers? A systematic review with meta-analyses

Informal caregiving is associated with mental disorders and reduced quality of life. The aim of this systematic review was to summarize the results of methodologically high-quality intervention studies on the effectiveness of non-pharmacological interventions on patient-relevant outcomes for family caregivers in Germany. We searched three large scientific literature databases for intervention studies with a control group and a low or moderate risk of bias on the effectiveness of non-pharmacological interventions for family caregivers in Germany. Among 4,376 publications reviewed, 10 intervention studies with good methodological quality were identified. These investigated multi-component interventions or cognitive behavioral therapy for family caregivers of people with dementia (8 studies), stroke (1 study) and with general care dependency (1 study). The control groups received information material as a minimal intervention or usual standard care. Meta-analyses showed a statistically significant slight reduction in depressive symptoms 3-6 months after the start of the study as a result of cognitive behavioral therapy (standardized mean difference -0.27; 95% confidence interval -0.44 - -0.10), but this no longer reached statistical significance after 9-12 months (-0.21; -0.51 - 0.09). Multi-component interventions showed no changes in depressive symptoms either after 3-6 or after 9-12 months (-0.18; -0.40 - 0.03 and -0.14; -0.47 - 0.14, respectively). In contrast, the mental component of quality of life of family caregivers improved statistically significantly in the multi-component intervention groups compared to the control groups: slightly after 3-6 months (0.28; 0.01 - 0.56) and moderately after 9-12 months (0.45; 0.09 - 0.82). The interventions had no effect on the physical component of quality of life. The reduction of depressive symptoms by behavioral therapy interventions for family caregivers appears to be only slight and not sustainable. The mental component of quality of life of people affected may be improved in the longer term by multi-component interventions. Current scientifically examined interventions for informal caregivers do not appear to have a sufficient and sustainable effect. Greater effects could possibly be achieved through more elaborate behavioral approaches, but also structural preventive measures.

Exploring the Influence of Contextual Factors and the Caregiving Process on Caregiver Burden and Quality of Life Outcomes of Heart Failure (HF) Dyads after a Hospital Discharge: A Mixed-Methods Study.

Background: This study explores heart failure (HF) dyadic contextual factors and caregiver burden during acute exacerbation hospitalization and discharge. Methods: It employed a mixed-methods approach, with HF dyads completing questionnaires and semi-structured interviews at a one-week post-discharge outpatient visit. Quantitative tools included the SF-12 Quality of Life, Zarit Burden Interview (ZBI), Bakas Caregiving Outcomes Scale (BCOS), and Self-Care of Heart Failure Index v. 6 (SCHFI). Thematic analysis was conducted on interview data to assess caregiver burden, disease trajectory, comorbidities, caregiving time, and employment status. Results: Twelve HF dyads participated, with caregivers (six female, six male) averaging 65.76 years. The ZBI indicated a low caregiver burden (median score of 15), but qualitative data revealed a higher perceived burden related to social isolation, future fears, and caregiver dependence. Male caregivers reported a lower burden than females. Positive goal congruence was noted in caregiving hours and HF management compliance. HF patients had a 10-year survival prediction of 22.75% per the Charlson Comorbidity Index, with 69% in NYHA class III and an average ejection fraction of 37.7%. Caregivers working full-time and caring for higher NYHA-class patients showed higher ZBI and BCOS scores. Conclusions: The study highlights the need for mixed methods and longitudinal research to understand HF disease trajectory and caregiver burden, emphasizing the importance of including caregivers in HF education and screening for perceived burden to improve outcomes and reduce re-hospitalizations.

Efficacy and Implementation Planning Across the Veterans Affairs Polytrauma System of Care: Protocol for the REACH Intervention for Caregivers of Veterans and Service Members With Traumatic Brain Injury.

The responsibility of care for Veterans and Service Members (V/SMs) with traumatic brain injury (TBI) often defaults to informal family caregivers. Caregiving demands considerable knowledge, skill, and support to facilitate the health and well-being of V/SMs and themselves. Persistent and common TBI caregiver issues include strain, depression, and anxiety. While evidence-based, brief interventions have been developed and implemented for family caregivers in Veteran neurodegenerative populations, few interventions have been developed, adapted, or tested to support the unique needs of caregivers of V/SMs with TBI. This study will adapt and test an evidence-based, personalized, 6-session telehealth caregiver intervention, "Resources for Enhancing All Caregivers' Health" (REACH), to meet the unique needs of caregivers of V/SMs with TBI. If successful, a community-based participatory research team will develop an implementation plan to roll out REACH TBI across the national Veterans Affairs Polytrauma System of Care. This mixed methods, crossover waitlist control clinical trial will use a Type 1 Hybrid Effectiveness-Implementation approach to adapt and then test the effects of REACH TBI on key TBI caregiver outcomes. This study was funded by the Department of Defense in September 2023. Participant enrollment and data collection will begin in 2024. If effective, REACH TBI will be the first evidence-based intervention for caregivers of V/SMs with TBI that can be scaled to implement across the Veterans Affairs Polytrauma System of Care and fill a notable gap in clinical services. PRR1-10.2196/57692.

Older Caregivers With HIV: Their Story of Caregiving.

As people with HIV live longer and healthier, it has become more likely that they will assume a caregiver role for their families and/or friends. Yet, there is a significant gap in the literature that older caregivers with HIV (OCWH) have not received attention from practitioners and researchers. To fill the gap, our qualitative study was conducted with OCWH (N = 19) to explore various themes such as adjustment to caregiving, caregiving responsibilities, HIV and other health issues, support systems, caregiving outcomes, needs assessment, cognitive health, and the impact of COVID-19. Results indicated that each OCWH faced their own unique challenges (e.g., severity of health conditions, intense caregiving responsibilities, caregiving situation, lack of social support/transportation/financial means), but they expressed positive and fulfilling caregiving outcomes. Understanding the lived experiences of OCWH is requisite to develop holistic service programs to meet their caregiving needs while supporting their HIV health and co-occurring health conditions.

Purpose in life among haemodialysis caregivers: Links with adaptive coping, caregiver burden, and psychological distress.

Research has evidenced that purpose in life helps to minimise the strains of providing informal care to a significant other, but little is known about whether this psychological resource influences the paths from stressors to the health outcomes of family caregiving and through which mechanisms it can exert this protective effect. This study aimed to explore the moderating role of purpose in life on the (mediated through adaptive coping) relationship between caregiver burden and psychological distress in haemodialysis caregivers. A cross-sectional study was conducted with a convenience sample of family caregivers (n=173; M=55.9, SD=15.6years old) of adults undergoing haemodialysis. A moderated-mediation model was computed to explore the interaction effects of purpose in life on the path between burden and distress, having adaptive coping behaviours as parallel mediators. Results showed that purpose in life had a buffering effect on the mediated (through acceptance coping) relationship between burden and distress (index of partial moderated-mediation: bsimple=-0.029, 95% bootstrap confidence interval (CI) [-0.070, -0.002]), and that this conditional effect was lowest at high levels of the moderator (at +1SD: bsimple=0.038, SE=0.026, 95% bootstrap CI [0.001, 0.098]). Use of emotional support (F(1,159)=4.395, p=0.038) and positive reframing (F(1,159)=5.648, p=0.019) also mediated this path. This study expands knowledge about the modifiable internal resources through which purpose in life can help promote psychosocial adjustment to the haemodialysis caregiving process. Mental health promotion initiatives aimed at this population need to consider combining different intervention approaches to foster purpose in life and train adaptive (and flexible) coping skills.

Understanding the home hospice experience of Puerto Rican caregivers.

Hospice use among Hispanic Medicare beneficiaries has declined in the last few years, and Hispanic caregivers have reported insufficient support around the emotional and spiritual aspects of care. Understanding the home hospice experience of Puerto Rican (PR) caregivers can yield insight into ways to improve hospice participation and quality of care for the Hispanic population. This exploratory study utilizes qualitative methods to identify PR caregivers' experience in the setting of home hospice care. Data from interviews with eight (n=8) bereaved PR caregivers of patients who received home hospice care were qualitatively analyzed. Participants were mostly well-educated (n=6/8) female caregivers caring for their parent (n=7/8) with mean age of 57 [standard deviation (SD) =13] years. Emerging domains from the study included (I) symptom management; (II) cultural and religious values; and (III) interaction with hospice providers. Caregivers found managing patients' loss of appetite, pain, anxiety, and confusion to be challenging. They identified family-centered values and religious support as culturally important, which manifested as the need for frequent communication from hospice providers and increased support and education at the end-of-life. Culturally tailored interventions that focus on managing symptoms, tailoring care to support family-centered values, integrating religious officials representative of the patient's beliefs into the hospice team, and communicating effectively with providers may reduce the burden experienced by PR caregivers in home hospice and improve outcomes for patients and caregivers. Additional research will aid in the development of evidence-based intervention and policies urging healthcare providers to offer culturally appropriate hospice care and resources to this population.

Supporting positive parenting among pregnant people in recovery from opioid use disorder: Introducing family check‐up–prenatal

Opioid use disorder (OUD) among pregnant people has increased dramatically during the opioid epidemic, affecting a significant number of families with young children. Parents with OUD commonly face significant challenges as they are often balancing the stress of caring for young children with maintaining recovery and co-occurring psychosocial challenges (e.g., mental health, low social support). Toward designing interventions to address parenting needs among parents with OUD, we conducted a mixed-methods study to understand the acceptability of receiving parenting support prenatally among pregnant people with OUD residing in the United States. Semi-structured interviews were conducted among 18 pregnant and early postpartum people recruited from a substance use treatment program specializing in the care of pregnant and parenting populations. Among all participants, a prenatal parenting program that comprehensively addresses recovery, parenting, and wellbeing was found to be widely acceptable. Regarding content most desirable within a parenting intervention, participants indicated an interest in breastfeeding, caring for newborns with in-utero opioid exposure, parent-infant bonding, infant soothing techniques, their own wellbeing/mental health, and parenting skills. We introduce a prenatal adaptation of the well-established Family Check-up parenting intervention as a novel, prenatal intervention to prevent negative outcomes for caregivers in recovery and their children.

Transitional Palliative Care for Family Caregivers: Outcomes From a Randomized Controlled Trial

ContextPatients receiving inpatient palliative care often face physical and psychological uncertainties during transitions out of the hospital. Family caregivers often take on responsibilities to ensure patient safety, quality of care, and extend palliative care principles, but often without support or training, potentially compromising their health and well-being. ObjectivesThis study tested an eight-week intervention using video visits between palliative care nurse interventionists and caregivers to assess changes in caregiver outcomes and patient quality of life. MethodsThis randomized controlled trial, conducted from 2018 to 2022, enrolled adult caregivers in rural or medically underserved areas in Minnesota, Wisconsin, and Iowa. Eligible caregivers included those caring for patients who received inpatient palliative care and transitioned out of the hospital. The intervention group received teaching, guidance, and counseling from a palliative care nurse before and for eight weeks after hospital discharge. The control group received monthly phone calls but no intervention. Caregiver outcomes included changes in depression, burden, and quality of life, and patient quality of life, as reported by the caregiver. ResultsOf those consented, 183 completed the intervention, and 184 completed the control arm; 158 participants had complete baseline and eight-week data. In unadjusted analyses, the intervention group and their care recipients showed statistically significant improvements in quality of life compared to the control group. Improvements persisted in adjusted analyses, and depression significantly improved. No differences in caregiver burden were observed. ConclusionAddressing rural caregivers’ needs during transitions in care can enhance caregiver outcomes and improve patient quality of life.

Palliative care for patients with heart failure and family caregivers in rural Appalachia: a randomized controlled trial

BackgroundHeart failure (HF) is a debilitating disease with worsening symptoms and family caregiving burden. HF affects more than 8 million Americans. West Virginia has the highest HF death rate in the U.S. and limited healthcare services. This study tested whether the family HF palliative and end-of-life care intervention (FamPALcare) improved patient and caregiver outcomes at 3- and 6-month study endpoints.MethodsThis study used a randomized controlled trial design. Patients with HF and their caregivers were randomly assigned together to the intervention (n = 21) or control (n = 18) group. The intervention included five telephone coaching sessions on the HF home, palliative, and end-of-life care. The outcome data collected at baseline and at 3 and 6 months were from the patients’ (a) HF-related health status and depression/anxiety scale scores; and from caregivers’ (b) caregiving burden and depression/anxiety scale scores; and (c) anonymous ratings on the 11-item FamPALcare helpfulness scale, completed by the intervention participants.ResultsThe mean age of the patients was 65.66 (SD = 13.72) years, and 67% were White males. The mean age of the caregivers was 62.05 (SD = 13.14) years, and 77% were White females. Compared to the controls, patients in the intervention group had significantly greater scores for HF-related health status (p < .05) and lower depression/anxiety scores at 6 months, the study endpoint. The family caregivers in the intervention group had significantly lower scores on caregiving burden (p < .05) and depression/anxiety (p < .01) at 3 months. The mean helpfulness rating was M = 4.46 out of 5 (SD = 0.49).ConclusionsThe FamPALcare intervention was found to be effective at improving patient HF-related health status and reducing caregiver burden and improving both patient and caregiver depression and anxiety scores. The FamPALcare HF intervention was found feasible and consistently delivered (fidelity). The FamPALcare intervention’s cost-effectiveness and helpfulness ratings information will be used to plan for subsequent clinical trials.Trial registrationClinicalTrials.gov NCT04153890, Registered on 4 November 2019, https://clinicaltrials.gov/ct2/show/NCT04153890.

Outcomes Among Mexican American and Non-Hispanic White Informal Stroke Caregivers.

Informal home care is prevalent among Mexican American stroke survivors, but data on the impact on caregivers are not available. The aim was to assess ethnic differences in informal stroke caregiving and caregiver outcomes at 90 days poststroke. Informal caregivers were recruited from the population-based Brain Attack Surveillance in Corpus Christi Project (2019-2023), conducted in a bi-ethnic community in Texas. Caregivers of community-dwelling stroke survivors who were not cognitively impaired and not employed by a formal caregiving agency were interviewed. Interviews included sociodemographics, dyad characteristics, Modified Caregiver Strain Index (range 0-26, higher more positive), Positive Aspects of Caregiving scale (range, 5-45, higher more), Patient Health Questionnaire-8 (range, 0-30, higher worse), and PROMIS (Patient-Reported Outcomes Measurement Information System)-10 physical (range, 16.2-67.7, higher better) and mental health (range, 21.2-67.6, higher better) summary scores. Stroke survivor data was from interviews and medical records. Propensity score methods were used to balance caregiver and patient factors among Mexican American and Non-Hispanic White caregivers by fitting a model with ethnicity of caregiver as the outcome and predictors being caregiver sociodemographics, patient-caregiver dyad characteristics, and patient sociodemographics and functional disability. Propensity scores were included as a covariate in regression models, considering the association between ethnicity and outcomes. Mexican American caregivers were younger, more likely female, and more likely a child of the stroke survivor than Non-Hispanic White caregivers. Mexican American caregiver ethnicity was associated with less caregiver strain (β, -1.87 [95% CI, -3.51 to -0.22]) and depressive symptoms (β, -2.02 [95% CI, -3.41 to -0.64]) and more favorable mental health (β, 4.90 [95% CI, 2.49-7.31]) and positive aspects of caregiving (β, 3.29 [95% CI, 1.35-5.23]) but not associated with physical health. Understanding the mechanisms behind more favorable caregiver outcomes in Mexican American people may aid in the design of culturally sensitive interventions to improve both caregiver and stroke survivor outcomes, potentially across all race and ethnic groups.

Caregiver Outcomes From a Parent-Mediated Intervention May Be Dependent on Caregiver Skills &amp; Confidence at Intervention Initiation

Abstract Date Presented 03/23/24 Individual differences in how caregivers responded to participation in a caregiver-mediated feeding intervention revealed emerging trends that suggest that caregiver outcomes may be dependent on their level of efficacy and skills at intake. Primary Author and Speaker: Hannah Laufenberg Additional Authors and Speakers: Brittany St John, Karla Ausderau

Caregiving for Patients with Atrial Fibrillation: A Systematic Review of the Scientific Literature.

Caregiving processes and outcomes have been increasingly articulated in the cardiovascular literature, particularly in heart failure and coronary artery disease, but there has been no synthesis on caregiving for a patient with atrial fibrillation (AF). This review synthesized scientific evidence that describes caregiving in the context of AF, with the aim of informing future research priorities for AF caregiving or clinical approaches that may support these caregivers. Informed by PRISMA guidelines, we conducted a mixed methods systematic review with a data-based convergence design using a thematic synthesis approach. All studies that examined factors related to caregiving for patients with AF, either as a descriptive, predictor, or outcome variable, were included. After the search, data from thirteen studies were abstracted; half of the studies (53%) were of low to moderate quality. Changes to the family unit and feelings of uncertainty are common post-AF; a subset of caregivers struggle with mental health challenges, particularly those who are unwell themselves or those who provide several hours of care to patients with more advanced symptoms or limitations. Informational support for caregivers appears to be lacking but was desired to better adapt to the changes or consequences incurred from AF. This review complements findings from previous reviews conducted in other cardiovascular disease sub-groups. As there is still limited high-quality research on caregiving in an AF context, additional research is required to adequately inform supportive programming for caregivers of patients with AF, if indicated.

Informing a Future Clinician-Led Virtual Reality Experience Through Oncology Caregivers' Pre-Treatment Preparation Experiences.

The purpose of this study was to 1) describe oncology caregivers' pre-treatment preparation experiences, 2) elicit their feedback about approaches to improve the pre-treatment preparation experience, and 3) explore the potential use of visual aids into the pre-treatment education experience that will inform future clinician-led VR experiences. Using a qualitative descriptive design and convenience sampling technique, adult oncology caregivers were recruited to complete anonymous demographic and qualitative surveys posted on social media sites (i.e. American Cancer Society, Facebook, and LinkedIn) and a university supported community research registry (i.e. Pitt + Me). Demographic data were calculated using descriptive analyses (frequency and percentage) and qualitative data were analyzed using an inductive coding approach. Participants (N=18) were mostly female (n=13, 72%), white (n=14, 78%), married (n=14, 78%), and had a college degree or higher (n=16, 89%). They categorically ranged in age from 26 years to above 65 years, with the majority (n=11, 61%) between 36-55 years of age. Caregivers described the cancer information as overwhelming and in need of additional side effect information and emotional support. To meet their unmet needs, participants suggested providing additional resources, different approaches to learning, better explanation of processes and procedures, diverse emotional support, and more interactions with the oncology team. Clinician created VR experiences designed for and informed by oncology caregivers do not exist yet. VR could provide an alternative pediogogical approach to complement standard oncology treatment preparation. These study findings begin the exploration into innovative preparation approaches that could meet oncology caregivers' unmet emotional and educational needs during a stressful period. There is a dearth of clinicians creating and testing VR experiences for patients, let alone caregivers. Oncology caregivers are the unseen 'backbone' supporting their loved one and providing an innovative modality to support them could improve outcomes. VR has the potential improve outcomes for caregivers, which may improve outcomes for patients.

Dyadic Ambivalence in Couples Managing Early-Stage Alzheimer's Disease: Linking Behavioral and Psychological Symptoms of Dementia to Life Satisfaction.

Caring for a spouse with Alzheimer's disease (AD) can elicit considerable distress but there are also positive moments. A growing body of work has examined caregivers' ambivalence in the care relationship and linked it to negative caregiver outcomes such as depression, but dyadic assessments of both parties' perspectives are missing. We examined ambivalence in both people with AD and their spousal caregivers, seeking to identify the correlates and well-being outcomes of such ambivalence in this unique context. Participants included 72 couples managing early-stage AD. People with AD and spousal caregivers independently self-reported positive and negative relationship qualities (used to indirectly calculate their ambivalence) and life satisfaction. Caregivers reported both partners' demographic characteristics and their spouses' behavioral and psychological symptoms of dementia (BPSD), focusing on memory-related behaviors and psychological symptoms. Path analyses revealed that the number and frequency of psychological symptoms in people with AD were positively associated with their own and caregivers' ambivalence. Caregivers' distress ratings of memory-related behaviors and psychological symptoms were positively associated with their ambivalence. Greater ambivalence was associated with lower life satisfaction in both spouses. BPSD directly affected both spouses' life satisfaction but there were also indirect effects via ambivalence. This study utilizes a dyadic approach to assess ambivalence in dementia care. Findings reveal the conflicting emotions that couples experience as they cope with early-stage AD, identify sources of such ambivalence, and shed light on the development of dyadic interventions that can promote positive outcomes in both partners.

Promoting serious illness conversations in primary care through telehealth among persons living with cognitive impairment.

serious illness conversations (SIC), particularly for persons living with cognitive impairment (PLCI), inconsistently happen in primary care. Pragmatic, scalable strategies are needed to promote SIC for PLCI. Pragmatic, prospective single-arm pilot study that occurred between July 1, 2021 and May 30, 2022 across seven primary care practices in North Carolina. Community-dwelling patients aged 65 and older with known or probable mild cognitive impairment or dementia (with decision-making capacity) and their care partners (if available). SIC telehealth intervention (TeleVoice) via video or telephone to assist PLCI in discussing their current goals, values, and future medical preferences, while facilitating documentation within the EHR. Main feasibility outcomes included reach/enrollment, intervention completion, and adoption rates at the clinic and provider level. Primary effectiveness outcomes included SIC documentation and quality within the EHR and usage of advance care planning billing (ACP) codes. Of the 163 eligible PLCI approached, 107 (66%) enrolled (mean age 83.7 years, 68.2% female, 16.8% Black, 22% living in a geographic area of high socioeconomic disadvantage) and 81 (76%) completed the SIC telehealth intervention; 45 care partners agreed to participate (mean age 71.5 years, 80% female). Adoption at clinic level was 50%, while 75% of providers within these clinics participated. Among PLCI that completed the intervention, SIC documentation and usage of ACP billing codes was 100% and 96%, respectively, with 96% (n = 78) having high-quality SIC documentation. No significant differences were observed between telephone and video visits. These findings provide preliminary evidence to support the feasibility of conducting SICs through telehealth to specifically meet the needs of community-dwelling PLCI. Further investigation of the sustainability of the intervention and its long-term impact on patient and caregiver outcomes is needed.

Effectiveness of Technology-Delivered Psychosocial Interventions for Family Caregivers of Patients With Dementia: A Systematic Review, Meta-Analysis and Meta-Regression.

Family caregivers living with patients with dementia (PwD) face psychological challenges due to care burden. Technology-delivered psychosocial interventions (TPIs) have played a promising role in improving health outcomes among family caregivers living with PwD. This review aims to synthesise evidence of the effectiveness of TPIs on primary (burden and depression) and secondary outcomes (self-efficacy, stress and anxiety) for family caregivers living with PwD. Random-effects meta-analyses were performed to determine effect size. Using Cochran's Q and I2 tests, statistical heterogeneity was evaluated. Sensitivity, subgroup analyses and meta-regression were employed to explain statistical heterogeneity. Twenty-eight trials comprising 4160 family caregivers from eight countries were included. Our meta-analysis revealed that TPIs resulted in slight reduction in depression, probably resulted in a slight reduction in burden and anxiety and slight increase in self-efficacy. Subgroup differences were detected in geographical regions (Western Pacific and Southeast Asia) for burden. While there were no significant subgroup differences in other factors, TPIs with preventive function and mobile applications had a more prominent larger effect size. Meta-regression analysis showed that attrition rate was a significant moderator on depression. Results are limited by the high risk of bias of included trials, which may reduce certainty of evidence. This review suggest TPIs are recommended as an adjunct treatment for alleviating burden and depressive outcomes in healthcare institutions. PROSPERO Registration Number: PROSPERO (CRD42023387962).

Is trofinetide a future treatment for Rett syndrome? A comprehensive systematic review and meta-analysis of randomized controlled trials

BackgroundRett syndrome (RTT) is a rare, life-threatening, genetic neurodevelopmental disorder. Treatment in RTT encounters many challenges. Trofinetide, a modified amino-terminal tripeptide of insulin-like growth factor 1, has demonstrated clinically promising results in RTT. In this study, trofinetide efficacy and safety in RTT are systematically reviewed and meta-analyzed.MethodsA systematic search of five electronic databases was conducted until January 2024. Review Manager 5.4 software was used for the analysis. The analysis was based on a weighted mean difference and standard error with a confidence interval (CI) of 95%, and a statistically significant P-value was considered if it was < 0.05. The study was registered on PROSPERO with registration number CRD42024499849. Quality of evidence was assessed using GRADE.ResultsThree randomized controlled trials (RCTs) with 276 patients were included in the analysis. Trofinetide improved both caregiver outcomes and clinical scales by improving the Rett Syndrome Behavior Questionnaire (RSBQ) (mean difference (MD): − 3.46 points, 95% CI: − 5.63 to − 1.27, P = 0.0002) and Clinical Global Impression Scale–Improvement (CGI-I) (MD: − 0.35, 95% CI: − 0.51 to − 0.18, P < 0.0001), respectively. However, trofinetide neither improved the Caregiver Top 3 Concerns Visual Analog Scale nor the Rett Motor Behavioral Assessment. Regarding safety, trofinetide was significantly associated with vomiting compared to placebo (odds ratio (OR): 3.17, 95% CI: 1.57 to 6.43, P = 0.001). After solving heterogeneity, results showed a statistically significant incidence of diarrhea in the trofinetide (200 mg) group compared to placebo (OR: 18.51, 95% CI: 9.30 to 36.84, P ≤ 0.00001).ConclusionsTrofinetide demonstrated statistically significant improvements in CGI-I and RSBQ in pediatrics and adult patients with Rett. Side effects are limited to vomiting and diarrhea. Although diarrhea yielded an insignificant result in our analysis, it emerged as a cause for treatment discontinuation in the participating trials, and a statistically significant risk for diarrhea emerged when excluding the study using a lower dose of the drug, hence causing heterogeneity, in the meta-analysis. Given the diverse genetic landscape of RTT, future RCTs investigating correlations between RTT genotype and phenotypic improvements by trofinetide will be beneficial. RCTs encompassing male patients with larger and longer cohorts are recommended.Graphical