Caregiver Outcomes Research Articles

Long-Term Follow-Up of Critically Ill Patients With Traumatic Brain Injury: From Intensive Care Parameters to Patient and Caregiver-Reported Outcome.

Abstract Traumatic brain injury (TBI) is associated with a high social and financial burden due to persisting (severe) disabilities. The consequences of TBI after intensive care unit (ICU) admission are generally measured with global disability screeners such as the Glasgow Outcome Scale-Extended (GOSE), which may lack precision. To improve outcome measurement after brain injury, a comprehensive clinical outcome assessment tool called the Minimal Dataset for Acquired Brain Injury (MDS-ABI) was recently developed. The MDS-ABI covers 12 life domains (demographics, injury characteristics, comorbidity, cognitive functioning, emotional functioning, energy, mobility, self-care, communication, participation, social support, and quality of life), as well as informal caregiver capacity and strain. In this cross-sectional study, we used the MDS-ABI among formerly ICU admitted patients with TBI to explore the relationship between dichotomized severity of TBI and long-term outcome. Our objectives were to: 1) summarize demographics, clinical characteristics, and long-term outcomes of patients and their informal caregivers, and 2) compare differences between long-term outcomes in patients with mild-moderate TBI and severe TBI based on Glasgow Coma Scale (GCS) scores at admission. Participants were former patients of a Dutch university hospital (total n = 52; mild-moderate TBI n = 23; severe TBI n = 29) and their informal caregivers (n = 45). Hospital records were evaluated, and the MDS-ABI was administered during a home visit. On average 3.2 years after their TBI, 62% of the patients were cognitively impaired, 62% reported elevated fatigue, and 69% experienced restrictions in ≥2 participation domains (most frequently work or education and going out). Informal caregivers generally felt competent to provide necessary care (81%), but 31% experienced a disproportionate caregiver burden. All but four patients lived at home independently, often together with their informal caregiver (81%). Although the mild-moderate TBI group and the severe TBI group had significantly different clinical trajectories, there were no persisting differences between the groups for patient or caregiver outcomes at follow-up. As a large proportion of the patients experienced long-lasting consequences beyond global disability or independent living, clinicians should implement a multi-domain outcome set such as the MDS-AB to follow up on their patients.

A - 55 Boosting Positive Emotion in Caregivers: Moderators of a Positive Psychological Intervention.

There are numerous negative health effects associated with dementia caregiving, including increased stress and depression. Positive emotion interventions could improve health and psychological outcomes for caregivers. The present study was a secondary analysis of data from the Life Enhancing Activities for Family Caregivers (LEAF) trial (R01NR014435). LEAF is an evidence-based intervention designed to increase positive emotion in caregivers. Using multiple linear regression, data from the LEAF trial (n = 170 community-dwelling caregivers) were examined to identify which caregiver characteristics moderated LEAF outcomes (positive emotion, negative emotion, positive aspects of caregiving) over time. Length of time caregiving significantly moderated the effect of positive emotion from baseline to post-intervention, such that longer-term caregivers in the LEAF intervention group experienced greater increases in positive emotion compared to longer-term caregivers in the emotion-reporting waitlist control group (B = 0.119, t = 2.1, p < 0.05). Moreover, gender moderated positive emotion, such that males in the intervention group and females in the waitlist control group experienced greater increases in positive emotion over time than males in the waitlist control group and females in the intervention group, respectively (R2 = 0.06, F[3, 139] = [2.75], p = <0.05). No other effects were found. Results suggest that length of time caregiving and gender play an important role in the extent to which dementia caregivers benefit from positive emotion interventions. This study assists in identifying caregivers for whom positive emotion interventions work best, suggests ways that the intervention should be tailored to match caregiver characteristics, and targets outcomes most impacted according to caregivers' individual differences.

Burden and anticipatory grief in caregivers of family members with Alzheimer's disease and other dementias.

This study aimed to analyze the different factors that intervene in the task of caring for relatives of people with Alzheimer's and other dementias. A first objective focused on assessing the relation between burden and anticipatory grief, considering the possibility of social support and the risk of psychopathology. A second objective aimed to examine whether caregiver burden modulates the relationships between anticipatory grief and psychopathology. A cross-sectional design was employed. The sample consists of 129 participants who care for a family member with Alzheimer's and other dementias. A protocol based on a battery of tests has been applied and a mediation analysis was carried out. The results show a positive relationship between burden and anticipatory grief. Social support could have an indirect relationship with anticipatory grief, based on its effect on the level of psychopathology and caregiver burden. Finally, a modulation model reflects that the relationship between anticipatory grief and psychopathology is strong, the latter having a greater effect as a result variable than as a risk variable. However, it seems that the relationship between grief and psychopathology is better explained directly than not through the modulating effect of the caregiver burden. The results obtained encourage us to think that an approach focused on intervening in the anticipatory grief may be an opportunity to reduce or buffer other caregiving outcomes, especially those related to the perception of caregiver burden and psychopathology.

Cultural Diversity Impacts Caregiving Experiences: A Comprehensive Exploration of Differences in Caregiver Burdens, Needs, and Outcomes.

Background Many Americans are informal caregivers providing unpaid care for their loved ones living with chronic conditions, such as dementia and heart failure. As the USpopulation continues to age and live longer with more complex chronic conditions, informal caregivers play an increasingly important role in the care of older adults with functional impairment and multiple comorbidities. Caregivers face many challenges in managing the health of themselves and their loved ones, including physical, emotional, and financial burdens, which may potentially vary by race and ethnicity. Therefore, it is critical to develop culturally tailored solutions, such as smart technology, aimed at improving the quality of life of informal caregivers and care recipients from diverse backgrounds. Methods Data were collected from a convenient sample of 69 informal caregivers in Texas who were members or volunteers for either the International Buddhist Progress Society-Dallas (IBPS Dallas) or University of Texas Medical Branch (UTMB). Caregivers answered questions about their caregiving experiences, including the type of care they provided, challenges they faced, and lessons learned. Responses were stratified by race/ethnicity (White, Hispanic, or Asian American) to assess for potential cultural differences in caregiving experiences. A chi-squared test and one-way analysis of variance (ANOVA) were conducted. Results White, Hispanic, and Asian American caregivers all reported high non-medical related needs. White, Hispanic, and Asian American care recipients all had a high degree of neurological disease and functional impairment. Whiteand Hispaniccaregivers were also more likely to offer emotional support (p=0.007) and financial support (p=0.025) than Asian American caregivers. Asian American caregiversreported greater worry about the health-related knowledge of their family members (p=0.040) than Whiteand Hispanic caregivers. Hispanic(18.8%) and Asian American caregivers(12.5%) reported the least knowledge of caregiving-related government policies than Whitecaregivers (43.2%) (p=0.025). Hispanic(18.8%) and Asian American caregivers(18.8%) also reported the least knowledge of available support programs and services for care recipients (p=0.001). Conclusions White, Hispanic, and Asian American informal caregivers vary in their types of worries, care provided, and challenges faced. Our study found that Asian American caregiversreported greater worry about the health-related knowledge of their family members than Whiteand Hispanic caregivers. Whitecaregivers were better at navigating government resources and caregiver support programs than Hispanicand Asian American caregivers. While race and ethnicity are potential factorsfor these observed differences, several other factors may have played a role, including age, gender, income, education, patient diagnosis, and disease severity. Future research should consider these factors and evaluate a larger and more diverse sample for more definitive racial and ethnic comparisons. Understanding disparities in caregiving experiences is a critical initial step to developing culturally appropriate interventions to reduce caregiving burden and promote the health and well-being of both patients and their informal caregivers from diverse backgrounds.

Patient-clinician digital health interventions for the hip fracture population: a scoping review

IntroductionOlder adults with hip fracture often require extensive post-surgery care across multiple sectors, making follow-up care even more important to ensure an ideal recovery. With the increased adoption of technology, patient-clinician digital health interventions can potentially improve post-surgery outcomes of hip fracture patients by helping them and their caregivers better understand the various aspects of their care, post-hip fracture surgery. The purpose of this study was to examine the available literature on the impact of hip fracture-specific, patient-clinician digital health interventions on patient outcomes and health care delivery processes. We also aimed to identify the barriers and enablers to the uptake and implementation of these technologies and to provide strategies for improved use of these digital health interventions.MethodsWe conducted a scoping review following the six stages of Arksey and O’Malley’s framework and following the PRISMA-ScR reporting format. Searches were conducted in five databases. In addition to hand searching for relevant studies from the references of all included studies, we also conducted a grey literature search to identify relevant primary studies. Screening of titles and abstracts as well as full texts were performed independently by two reviewers. Two reviewers also performed the data extraction of the included studies.ResultsAfter screening 3,638 records, 20 articles met the criteria and 1 article was identified through hand searching. Various patient-clinician digital health interventions were described including telehealth /telerehabilitation programs (n = 6), care transition /follow-up interventions (n = 5), online resources (n = 2), and wearable devices /sensor monitoring (n = 1). Outcomes were varied and included functional status, gait/mobility, quality of life, psychological factors, satisfaction, survival/complications, caregiver outcomes, compliance, technology-user interactions, and feedback on the use of the digital health interventions. For clinicians, a key barrier to the use of the digital health interventions was the acceptability of the technology. However, the usefulness of the digital health intervention by clinicians was seen as both a barrier and an enabler. For patients and caregivers, all the themes were seen as both a barrier and an enabler depending on the study. These themes included: 1) availability and access, 2) usability, 3) knowledge and skills, 4) acceptability, and 5) usefulness of the digital health intervention.ConclusionMany behavioural factors affect the use of patient-clinician digital health interventions. However, a specific attention should be focused on the acceptability of the technology by the clinicians to encourage uptake of the digital health interventions. The results of this scoping review can help to better understand the factors that may be targeted to increase the use of these technologies by clinicians, patients, and caregivers.

Caregiver skills training for caregivers of individuals with neurodevelopmental disorders: A systematic review and meta-analysis.

To systematically review the effectiveness of caregiver and parent skills training programs, including caregiver-mediated interventions, for caregivers of individuals with neurodevelopmental disorders. We conducted a systematic review with a random-effects meta-analysis. We searched 11 electronic databases through July 2021 and used a snowball methodology to locate relevant articles of randomized controlled trials. Effect size estimates were pooled using Hedges' g from data extracted from study reports and through author requests using random-effects meta-analyses for three child outcome categories (child development, adaptive behavior, and problem behavior) and three caregiver outcome categories (parenting skills and knowledge, psychological well-being, and interpersonal family relations). We located 44 910 records, from which 75 randomized controlled trials involving 4746 individuals with neurodevelopmental disorders and their caregivers were included. Random-effects meta-analyses showed improvements in child development (g = 0.30; 99% confidence interval [CI] = 0.07-0.53) and reduction in reported problem behaviors (g = 0.41; 99% CI = 0.24-0.59), but not a statistically significant improvement in adaptive behavior (g = 0.28; 99% CI = -0.42 to 0.98). Caregivers showed improvements in parenting skills and knowledge (g = 0.72; 99% CI = 0.53-0.90), psychological well-being (g = 0.52; 99% CI = 0.34-0.71), and interpersonal family relations (g = 0.76; 99% CI = 0.32-1.20). Caregiver skills training programs benefit both caregivers and children with neurodevelopmental disorders. Skills training programs improve child development and behavior, improve parenting skills, reduce caregiver mental health issues, and improve family functioning. Programs using culturally appropriate training material to improve the development, functioning, and participation of children within families and communities should be considered when caring for children with neurodevelopmental disorders. Caregiver skills training programs are effective interventions for both caregivers and children. Children with neurodevelopmental disorders benefit from improvements in development and reduction of problematic behaviors. Caregivers benefit from enhanced skills and psychological well-being. Improvements in interpersonal family relationships have also been documented.

Creating a culture for change: Lessons from behavioral economics and complexity science to increase serious illness conversations for patients with cancer

Patient-centered cancer care requires communication between patients and clinicians about patients’ goals, values, and preferences. Serious illness communication improves patient and caregiver outcomes, the value and quality of cancer care, and the well-being of clinicians. Despite these benefits, there are competing factors including time, capacity, bandwidth, and resistance. Health systems and oncology practices have opportunities to invest in pathways that assist patients and clinicians to engage in serious illness conversations. We discuss how applying insights from behavioral economics and complexity science may help clinicians engage in serious illness conversation and improve patient-centered cancer care.

6.73 A Randomized Controlled Trial of a Brief Virtual Group Intervention for Adolescents With Mild to Moderate Suicidal Ideation and Their Caregivers: Preliminary Caregiver Outcomes

6.73 A Randomized Controlled Trial of a Brief Virtual Group Intervention for Adolescents With Mild to Moderate Suicidal Ideation and Their Caregivers: Preliminary Caregiver Outcomes

Patient and Caregiver Outcomes After Onasemnogene Abeparvovec Treatment: Findings from the Cure SMA 2021 Membership Survey.

Onasemnogene abeparvovec (OA) is the only gene replacement therapy currently approved for spinal muscular atrophy (SMA) treatment. We sought to assess real-world patient and caregiver outcomes after OA treatment for SMA. Patients who received OA were identified from the 2021 Cure SMA Membership Survey. Those treated at 6-23months of age were matched to non-patients treated with OA on the basis of age at the time of survey and survival motor neuron2 gene copy number. Patient characteristics, motor milestones, and resource and supportive care use, as well as caregiver proxy-reported health-related quality of life (HRQOL), were described. Caregiver unmet needs and HRQOL were also assessed. Of the 614 patients in the survey, 64 received OA, and 17 were matched with 28 non-OA-treated patients. In general, a greater percentage of OA-treated patients achieved various motor milestones, including 100% sitting without support and 58.8% walking with assistance. OA-treated patients also had numerically lower rates of hospitalization and surgery. None required tracheostomy with a ventilator. The rate of using oxygen or a breathing machine for more than 16h was also lower for OA-treated patients. OA-treated patients had less frequent trouble swallowing. HRQOL was reported to be similar to non-OA-treated patients. Caregivers of OA-treated patients reported better patient mobility scores and less work impairment. The study suggests that treatment with OA is associated with greater rates of motor milestone achievements and less resource and supportive care use for patients with SMA treated at 6-23months of age in the real world. For caregivers, it may also potentially reduce unmet needs, improve HRQOL, and reduce work impairment.

Integrative Stress Reduction Program for Family Caregivers of Persons With Advanced Dementia: A Randomized-Controlled Trial.

Older adults with advanced dementia require significant care, leading to high stress levels in caregivers. The current study aimed to evaluate the effects of an Integrative Stress Reduction Program on Thai caregiver's outcomes of stress, sleep quality, and caregiver-assessed neuropsychiatric symptoms of persons with dementia. A single-blind randomized-controlled trial was conducted. A sample of family caregivers of people with dementia was recruited from memory clinics at outpatient community health centers in Thailand and randomly assigned to the experimental and control groups. Participants in the experimental group were enrolled in 5 intervention sessions over 4 weeks, while the control group received usual care. Outcome variables were collected at baseline, 4 weeks postintervention, and 8 weeks of follow-up. Compared with the control group, caregivers in the experimental group (n = 27) had significantly decreased stress (p < .01) and better sleep quality (p < .01), and caregivers reported that their family members with dementia (n = 27) had decreased neuropsychiatric symptoms (p < .01) after the intervention (week 4) and at the 8-week follow-up. The Integrative Stress Reduction Program improved outcomes for caregivers and decreased neuropsychiatric symptoms in people with dementia.

Therapeutic Lifestyle Intervention Targeting Enhanced Cardiometabolic Health and Function for Persons with Chronic Spinal Cord Injury in Caregiver/Care-Receiver Co-Treatment: A Study Protocol of a Multisite Randomized Controlled Trial.

Chronic spinal cord injury (SCI) significantly accelerates morbidity and mortality, partly due to the increased risk of cardiometabolic diseases (CMD), including neurogenic obesity, dyslipidemia, and impaired glucose metabolism. While exercise and dietary interventions have shown some transient benefits in reducing CMD risk, they often fail to improve clinically relevant disease markers and cardiovascular events. Moreover, SCI also places caregiving demands on their caregivers, who themselves experience health and functional decline. This underscores the need for more substantial interventions that incorporate appropriate physical activity, heart-healthy nutrition, and behavioral support tailored to the SCI population. This randomized clinical trial (RCT) protocol will (1) assess the health and functional effects, user acceptance, and satisfaction of a 6-month comprehensive therapeutic lifestyle intervention (TLI) adapted from the National Diabetes Prevention Program (DPP) for individuals with chronic SCI and (2) examine the impact of a complementary caregiver program on the health and function of SCI caregivers and evaluate user acceptance and satisfaction. Caregivers (linked with their partners) will be randomized to 'behavioral support' or 'control condition'. Dyadic couples comprise individuals with SCI (18-65 years, >1-year post-injury, ASIA Impairment Scale A-C, injury levels C5-L1) and non-disabled SCI caregivers (18-65 years). Both groups undergo lock-step circuit resistance training, a calorie-restricted Mediterranean-style diet, and 16 educational sessions focused on diet/exercise goals, self-monitoring, psychological and social challenges, cognitive behavioral therapy, and motivational interviewing. The outcome measures encompass the cardiometabolic risks, cardiorespiratory fitness, inflammatory stress, multidimensional function, pain, life quality, independence, self-efficacy, program acceptance, and life satisfaction for SCI participants. The caregiver outcomes include multidimensional function, pain, quality of life, independence, and perceived caregiver burden. This study evaluates the effects and durability of a structured, multi-modal intervention on health and function. The results and intervention material will be disseminated to professionals and consumers for broader implementation. ClinicalTrials.gov, ID: NCT02853149 Registered 2 August 2016.

Effects of Caregiver Sleep Disturbances on Relationship Quality With Their Care Recipient.

Sleep problems are highly prevalent and disruptive for caregivers. Although the connection between caregivers' sleep and outcomes like caregiver burden and quality of life is well established, the potential influence of caregivers' sleep on their reported relationship quality with the care recipient is not known. The current study sought to address this gap. We analyzed data from the 2017 National Health and Aging Trends Study and linked it with data from the 2017 National Study of Caregiving. Our dependent variable was caregiver-reported relationship quality, and our predictor variable of interest was caregiver sleep problems. We also included several covariates related to the caregiver and care recipient. We used a generalized linear model to examine the relationship between caregiver sleep problems and relationship quality, controlling for other potentially influential factors. Sleep problems were significantly related to relationship quality. Compared to caregivers who reported no sleep problems, those who reported at least one sleep problem (β: -0.23, 95% CI: -0.46 to -0.01) had lower relationship quality with the care recipient. Other factors that remained related to relationship quality in the generalized linear model were negative aspects of caregiving, emotional difficulties, caregiver race, relationship type, care recipient depressive symptoms, and care recipient sex. Sleep problems are influential health behaviors that are related to relationship quality for caregivers. Therefore, it is critical that sleep is more systematically assessed and addressed in caregiving populations.

Perceived income inadequacy is associated with Epstein-Barr Virus latency and mental health outcomes in informal caregivers who are also employed in the healthcare industry

Finances are a prevalent source of stress. In a sample of 799 nursing home workers measured multiple times over 18 months, we found that higher perceived income inadequacy, the perception that one's expenses exceeds one's incomes, was associated with poorer self-reported mental health indicators and Epstein-Barr Virus antibody titers (a marker of cell-mediated immune function). Perceived income inadequacy predicted outcomes over and above the role of other socioeconomic status variables (objective household income and education). Mental health variables were not related to Epstein-Barr Virus antibody titers. Additionally, we found an interaction between perceived income inadequacy and informal caregiver status on our mental health outcomes; informal caregivers with higher perceived income inadequacy had poorer mental health than non-caregivers with the same perceived income inadequacy. Our findings may add nuance to the reserve capacity model, which states that those at lower socioeconomic levels are at higher risk of adverse health outcomes partly because they have fewer resources to address demands and strain. Perceived income inadequacy may significantly predict mental and physical well-being beyond other socioeconomic status variables, especially among lower-income employees. Caregiving stress and perceived income inadequacy may have synergistic effects on mental health.

215 Including dementia simulation in caregiver education enhances knowledge, confidence, empathy and caregiving approach

Abstract Background An estimated 64,000 people currently live with dementia in Ireland, with this number expected to rise to 150,000 by 2045. For every one person with dementia, there are approximately three others providing support and care. Caregivers can often undergo a decline in physical and mental health and experience feelings of isolation and loneliness. Caregiver education and support can help to mitigate these challenges. Lecture based programmes on their own have a limited effect on understanding the lived experience of the person with dementia, whereas including simulation based empathy building elements can lead to better quality outcomes for caregivers and the person with dementia. A multi-component education programme for family caregivers incorporating dementia simulation, was devised and implemented over 7 weeks. Topics included dementia awareness, delirium, communication, non-cognitive symptoms, self-care, and accessing practical community supports. Methods A survey measuring Person-reported outcomes (PROMS) and Person-reported experience (PREMS) was conducted with 14 caregivers attending two pilot groups. Results 100% of participants felt that the group enhanced their knowledge of dementia and increased their confidence in supporting their loved one as dementia progresses and in relation to non- cognitive symptoms. 100% of the participants found that peer support was extremely beneficial. They also felt that the group was welcoming and felt comfortable sharing in the group. All participants indicated that dementia simulation helped increase understanding of what it is like to have dementia, often reframing their relationship with their loved one. Conclusion The benefits of peer supports and dementia awareness education for caregivers are well documented and this survey supports these assumptions. However, for caregivers the addition of dementia simulation scenarios and role play enhanced their understanding of the lived experience of people with dementia, building empathy and confidence in their role, decreasing stress and leading to changes in caregiving approach.

Enhanced supportive care: prospective cohort study of oncology patients and caregivers

ObjectivesA prospective cohort study to evaluate clinical effectiveness of the enhanced supportive care (ESC) service at a comprehensive cancer centre and to explore the impact of the service on patient...

Evaluation of a stroke rehabilitation training programme for community-based primary healthcare.

Family caregiver training is an integral part of stroke rehabilitation programmes and is associated with improved caregiver and stroke survivor outcomes. In the Cape Winelands District, a low-resourced rural community-based setting in South Africa, stroke survivors and family caregivers mostly rely on assistance from community health workers (CHWs), despite their lack of stroke-specific rehabilitation training. To evaluate the implementation and immediate effects of a bespoke, 16 session, 21 h stroke rehabilitation training programme for CHWs to better support family caregivers. Two cooperative inquiry groups participated in participatory action research to design and develop the programme. This article reports on the implementation of this programme. Inquiry group members directly observed the training, obtained written and verbal feedback, interviewed CHWs and observed them in the community. Consensus on their learning was achieved after reflection on their experience and observations. Learning of the cooperative inquiry groups was categorised into the effect on community-based care, the training programme's design and development, how training was delivered and implications for service delivery. Community health workers empowered caregivers and stroke survivors and enabled access to care, continuity, coordination and person-centredness. The need for experiential learning and a spiral curriculum was confirmed. Therapists needed a different set of skills to deliver training. A systems approach and effective leadership were needed to enable community health workers to use their new skills. The stroke rehabilitation training programme demonstrated potential for integration into service delivery and equipping CHWs to support family caregivers and stroke survivors. Further evaluation of the programme's effectiveness and scale-up is needed. Evidence of an intervention to train CHWs to support stroke survivors and family caregivers.

Geriatric Communication Skills Training Program for Oncology Healthcare Providers: a Secondary Analysis of Patient and Caregiver Outcomes.

Geriatric cancer patients and their caregivers have unique needs that make it difficult for their healthcare providers (HCPs) to effectively communicate with them. As ineffective communication can lead to negative health outcomes, it is important that oncology HCPs receive specialized training on communication with older adult patients and their caregivers. We conducted a small pilot study examining audio recordings of clinical encounters between HCPs and older adult cancer patients/caregivers and questionnaires completed by the patients and their caregivers before and after the HCPs participated in a geriatric communication skills training program. Eleven HCPs completed the 6-h Geriatric Comskil Training. Two clinic consultations with unique geriatric patients (n = 44) and their caregivers (n = 29) were recorded before and after training and coded for HCPs' use of communication skills. Patients and caregivers also completed surveys measuring their satisfaction with HCP communication and perceived empathy. Analysis of the audio recordings revealed that HCPs did not increase their use of communication skills after training. Although our sample was too small to detect statistical significance, measures of effect size showed trending improvements in patients' and caregivers' perceptions of HCPs' empathy and satisfaction with their communication after training. Our findings build on previous studies evaluating the feasibility and effectiveness of the Geriatric Comskil Training in real world setting and indicate that the training may have improved HCPs' communication with older adult patients and their caregivers even if their use of their observable communication skills did not change.

Patient and Family Experience With Discharge Directly Home From the Pediatric ICU.

Children are increasingly discharged directly from the PICU. Transitions have been recognized as a period of increased patient and caregiver stress and risk of adverse events. No study has evaluated patient and caregiver outcomes after direct discharge from the PICU. This study aimed to explore the family's experiences with discharge directly home (DDH) from the PICU. This exploratory mixed-methods study was conducted in the PICU of the Institution is Sainte-Justine Hospital from February to July 2021. We included families of children expected to be DDH within 12 hours. Semistructured interviews were conducted at discharge, followed by telephone interviews 7 and 28 days post-PICU discharge. We measured comfort on a 5-point Likert scale and screened for anxiety using the Generalized Anxiety Disorder-7 tool. Families of 25 patients were interviewed. Thematic analysis of the interviews revealed several themes, such as feeling stress and anxiety, feeling confident, anticipating home care, and needing support. These findings complemented the quantitative findings; the median comfort score was 4 (comfortable) (interquartile range 4-5) and 8 (interquartile range 4-12) for the Generalized Anxiety Disorder-7 on the day of discharge, with 16 reporting clinically significant anxiety. In the 28-day study period, 2 patients were readmitted and 6 had visited the emergency department. Despite feelings of anxiety, many families felt comfortable with DDH from the PICU. Increasing our understanding of the patient and family experiences of discharge from the PICU will help to better support these patients and their families during transition.

Leigh syndrome global patient registry: uniting patients and researchers worldwide

BackgroundLeigh Syndrome (LS) is a rare genetic neurometabolic disorder, that leads to the degeneration of the central nervous system and subsequently, early death. LS can be caused by over 80 mutations in mitochondrial or nuclear DNA. Patient registries are important for many reasons, such as studying the natural history of the disease, improving the quality of care, and understanding the healthcare burden. For rare diseases, patient registries are significantly important as patient numbers are small, and funding is limited. Cure Mito Foundation started a global patient registry for LS in September 2021 to identify and learn about the LS patient population, facilitate clinical trial recruitment, and unite international patients and researchers. Priorities were to allow researchers and industry partners to access data at no cost through a clear and transparent process, active patient engagement, and sharing of results back to the community.ResultsPatient registry platform, survey design, data analysis process, and patient recruitment strategies are described. Reported results include demographics, diagnostic information, symptom history, loss of milestones, disease management, healthcare utilization, quality of life, and caregiver burden for 116 participants. Results show a high disease burden, but a relatively short time to diagnosis. Despite the challenges faced by families impacted by Leigh syndrome, participants, in general, are described as having a good quality of life and caregivers are overall resilient, while also reporting a significant amount of stress.ConclusionThis registry provides a straightforward, no-cost mechanism for data sharing and contacting patients for clinical trials or research participation, which is important given the recruitment challenges for clinical trials for rare diseases. This is the first publication to present results from a global patient registry for Leigh Syndrome, with details on a variety of patient-specific and caregiver outcomes reported for the first time. Additionally, this registry is the first for any mitochondrial disease with nearly 70% of participants residing outside of the United States. Future efforts include continued publication of results and further collaboration with patients, industry partners, and researchers.

Testing the stability of a family resilience model at 2 and 5 years after traumatic brain injury or spinal cord injury: A longitudinal study.

Recent studies have tested models of resilience and caregiver adjustment in individuals with traumatic brain injury (TBI) or spinal cord injury (SCI). Few studies have examined the role of adaptive variables over time. Conduct a longitudinal study to test a model of caregiver resilience with caregiver outcomes at 2- and 5-years post-injury. Caregivers of relatives with TBI or SCI were surveyed at 2 years (Time 1) and 5 years (Time 2) post-injury. Stability of the resilience model across the 2 time-points was tested using structural equation modeling with multi-group analysis. Measures included resilience related variables (Connor-Davidson Resilience Scale, General Self-Efficacy Scale, Herth Hope Scale, Social Support Survey) and outcome variables (Caregiver Burden Scale, General Health Questionnaire-28, Medical Outcome Study Short Form -36 [SF-36] and Positive and Negative Affect Scale). In total, 100 caregivers were surveyed at both 2 and 5 years (TBI =77, SCI =23). Scores for resilience (Time 1, 75.9 SD 10.6; Time 2, 71.5 SD 12.6) and self-efficacy (Time 1, 32.51 SD 3.85; Time 2, 31.66 SD 4.28) showed significant minor declines, with other variables remaining stable. The resilience model for the pooled responses (Time 1+ Time 2) demonstrated a good fit (Goodness of Fit Index [GFI]=0.971; Incremental Fit Index [IFI]=0.986; Tucker-Lewis Index [TLI]=0.971; Comparative Fit Index [CFI]=0.985 and Root Mean Square Error of Approximation [RMSEA]=0.051). Multi-group analysis then compared Time 1 to Time 2 responses and found that a variant (compared to invariant) model best fitted the data, with social support having stronger associations with mental health and positive affect at Time 2 than Time 1. Hope reduced from Time 1 to Time 2. The model suggests that resilience-related variables can play an important role in positive caregiver adjustment over time.