Patient-caregiver Dyads Research Articles

Development of a Community-Based Communication Intervention among Latin Caregivers of Patients Coping with Cancer.

Background: Cancer affects the emotional well-being of patients and caregivers, highlighting the need for effective communication strategies. This study explores a community-based communication intervention for Latino caregiver-patient dyads coping with cancer. The acceptability of the intervention, along with its associated facilitators and barriers, are crucial considerations. Methods: Three focus group interviews involved healthcare providers, community partners, patients, and caregivers to discuss the communication needs of this population and the components of a communication intervention while identifying facilitators and barriers to the intervention. Qualitative thematic content analysis was conducted using Nvivo v12, ensuring reliability through independent analysis and consensus building. Results: Participants (89% female, average age of 53) included patients (30%), caregivers (30%), community partners (25%), and healthcare providers (15%), and they discussed the overall acceptability of adapting a communication intervention, where they emphasized benefits for caregivers and patients, primarily through support groups. Communication strategies accepted by participants include psychological support, cancer education, assertive communication skills, and methods for improved interactions with healthcare providers and extended family. Conclusions: Participants' responses align with the current literature, emphasizing problem-solving, mutual support, and communication strategies and underscoring the role of community partners. The study underlines the necessity for culturally tailored communication interventions for Latino families facing cancer.

Goals of Care Among Patients With Advanced Cancer and Their Family Caregivers in the Last Years of Life

Understanding goals of care for terminally ill patients at the end of life is crucial to ensure that patients receive care consistent with their preferences. To investigate the patterns of goals of care among patient-caregiver dyads over the last years of the patient's life and the associations of the goals of care with patient-caregiver characteristics. This prospective cohort study of 210 patient-caregiver dyads involved surveys every 3 months from July 8, 2016, until the patient's death or February 28, 2022. Data from the last 2 years of the patients' lives were analyzed. Dyads, which comprised patients with stage IV solid cancer and their caregivers, were recruited from outpatient clinics at 2 major cancer centers in Singapore. Goals of care were examined via the tradeoffs between life extension and symptom management and between life extension and cost containment. The actor-partner interdependence framework was implemented using mixed-effects linear regressions. This study included 210 dyads (patients: mean [SD] age, 62.6 [10.5] years; 108 men [51.4%]; caregivers: mean [SD] age, 49.4 [14.6] years; 132 women [62.9%]). On average, 34% of patients (264 of 780 observations; range, 23%-42%) and 29% of caregivers (225 of 780 observations; range, 20%-43%) prioritized symptom management over life extension, whereas 24% of patients (190 of 780 observations; range, 18%-32%) and 19% of caregivers (148 of 780 observations; range, 8%-26%) prioritized life extension. Between cost containment and life extension, on average, 28% of patients (220 of 777 observations; range, 22%-38%) and 17% of caregivers (137 of 780 observations; range, 10%-25%) prioritized cost containment, whereas 26% of patients (199 of 777 observations; range, 18%-34%) and 35% of caregivers (271 of 780 observations; range, 25%-45%) prioritized life extension. Goals of care did not change as patients approached death. Patients prioritized symptom management if they experienced higher symptom burden (average marginal effect [SE], 0.04 [0.01]), worse spiritual well-being (average marginal effect [SE], -0.04 [0.01]), and accurate (vs inaccurate) prognostic awareness (average marginal effect [SE], 0.40 [0.18]) and if their caregivers reported accurate prognostic awareness (average marginal effect [SE], 0.53 [0.18]), lower impact of caregiving on finances (average marginal effect [SE], -0.28 [0.08]), and poorer caregiving self-esteem (average marginal effect [SE], -0.48 [0.16]). Compared with patients, caregivers expressed lower preferences for cost containment (average marginal effect [SE], -0.63 [0.09]). Patients prioritized cost containment if they were older (average marginal effect [SE], 0.03 [0.01]), had higher symptom burden (average marginal effect [SE], 0.04 [0.01]), had poorer spiritual well-being (average marginal effect [SE], -0.04 [0.01]), and their caregivers reported poorer caregiving self-esteem (average marginal effect [SE], -0.51 [0.16]) and more family support (average marginal effect [SE], -0.30 [0.14]). In this cohort study of patient-caregiver dyads, findings suggested the importance of interventions aimed at reducing discordance in goals of care between patients and caregivers and helping them develop realistic expectations to avoid costly, futile treatments.

Experiences of young adults with cerebral palsy in pediatric care transitioning to adult care.

To increase understanding regarding the experiences and values of young adults with cerebral palsy (CP), and their caregivers, regarding pediatric rehabilitation-related care, including perceived barriers and potential facilitators to transition to adult care. This was a qualitative descriptive study that used 20 semi-structured interviews (13 caregivers and seven patient-caregiver dyads). We identified four major themes: (1) the value and security of long-term relationships; (2) feeling 'rudderless' navigating the logistics of transition; (3) differences in pediatric versus adult models of care; and (4) perceived lack of provider expertise and comfort in adult care settings. Young adults with CP who had not yet transitioned to adult rehabilitation care and their caregivers placed high value on provider relationships and expertise, advanced planning, communication, and coordination of care. Identified barriers and potential facilitators to the transition to adult rehabilitation care reflected the uncertainty that accompanies leaving an established healthcare relationship. Challenges related to the logistics of this transition, differences in models of care, and perceived lack of provider comfort and expertise in adult care settings were also noted. Our findings could be used to develop and study patient-centered and family-centered transition processes for individuals with CP to promote age-appropriate and developmentally appropriate lifespan care.

Where you begin is not necessarily where you end: the mental and physical health trajectories of cancer caregivers over time.

Cancer caregiving, a critical component in the cancer-care model, has deleterious effects on the caregiver's physical and mental health. The degree to which these negative effects are uniformly experienced by caregivers is unclear; effects may be exacerbated at the end of life when caregiving is intensified. Not all caregivers have the support of an additional involved support person (secondary caregiver). The impact of the secondary caregiver's absence on the primary caregiver's well-being is understudied. Terminal cancer patient-caregiver dyads (n = 223) were recruited from oncology clinics and followed for six months or until patient death. Longitudinal latent growth models were used to characterize the heterogeneity of caregiver physical health and depressive symptoms; characteristics associated with these trajectories are examined. Caregivers were majority female (74%), white (55%) and patient spouses (60%). Two physical health (moderate, stable; initially good, declining) and two depressive symptom (moderate, stable; high, increasing) trajectories were identified. Declining physical health was more likely among caregivers who were healthiest at baseline, had higher levels of education, lower subjective burden, fewer depressive symptoms, cared for patients with fewer functional limitations and reported fewer caregiving tasks rendered by a secondary caregiver. Those with increasing depressive symptoms were more likely to be white, patient's wife, have higher subjective caregiver burden, lower physical health, and care for a patient with greater functional limitations. Decreasing physical health was evident among caregivers who were initially healthier and reported less assistance from secondary caregivers. Increasing depression was seen in white, female spouses with higher subjective burden. Sample heterogeneity revealed hidden groups unexpectedly at risk in the primary cancer caregiver role to which the oncology care team should be alert.

Do Caregivers and Patients With Early-Onset Scoliosis Share the Same Perspective on Health-Related Quality of Life? A Comparison of 24-item Early-Onset Scoliosis Questionnaire and 22-item Scoliosis Research Society Questionnaire Scores.

The 24-item Early-Onset Scoliosis Questionnaire (EOSQ-24) is validated in patients with early onset scoliosis (EOS) aged 0 to 18 years and the 22-item Scoliosis Research Society (SRS-22) questionnaire is validated in idiopathic scoliosis patients 10 years and older. EOSQ-24 is completed by the caregiver and SRS-22 is completed by the patient. A prior study comparing patient-reported outcome measures completed by older pediatric patients and their parents showed a low level of agreement. Our purpose was to compare EOSQ-24 and SRS-22 scores completed at the same time point and at subsequent time points, in patients aged 5 to 18 years with idiopathic or congenital EOS without developmental delay. This was a multicenter retrospective study. We identified pairs of EOSQ-24 and SRS-22 completed on the same day or within 6 months. Some patients had multiple pairs of surveys over time. EOSQ-24 and SRS-22 questions were matched and domain scores for Pain, Function, Mental Health, and Satisfaction were compared. Patients with a change in treatment between surveys were excluded. Pearson correlation coefficients ( r ) were used to compare domain scores, with r ≥0.7 indicating a strong relationship. There were 228 patient-caregiver dyads who completed 411 pairs of EOSQ-24 and SRS-22 on the same day. A strong correlation was found only for the Pain domain ( r =0.77). Function, Mental Health, and Satisfaction domains had positive but not strong correlations ( r = 0.58, r = 0.50, r = 0.41, respectively). Subanalysis based on age also showed a strong correlation only for Pain. There were 76 patient-caregiver dyads who completed 134 pairs of surveys with SRS-22 completed within 6 months after an EOSQ-24. All domains demonstrated a positive but not strong correlation, with Pain showing the highest correlation ( r = 0.64). EOSQ-24 and SRS-22 had a strong correlation only for Pain when completed at the same time point. EOSQ-24 and SRS-22 completed within 6 months lacked a strong correlation for all domains. Our findings suggest that parents and children with EOS may not share the same perspective on their health. Self-reported questionnaires should be used when possible to assess health-related quality of life in older children and adolescents with EOS who are developmentally neurotypical. Level III-diagnostic.

The influence of ambient environmental factors on breakthrough cancer pain: insights from remote health home monitoring and a proposed data analytic approach

BackgroundBreakthrough cancer pain (BTCP) is primarily managed at home and can stem from physical exertion and emotional distress triggers. Beyond these triggers, the impact of ambient environment on pain occurrence and intensity has not been investigated. This study explores the impact of environmental factors on the frequency and severity of breakthrough cancer pain (BTCP) in the home context from the perspective of patients with advanced cancer and their primary family caregiver.MethodsA health monitoring system was deployed in the homes of patient and family caregiver dyads to collect self-reported pain events and contextual environmental data (light, temperature, humidity, barometric pressure, ambient noise.) Correlation analysis examined the relationship between environmental factors with: 1) individually reported pain episodes and 2) overall pain trends in a 24-hour time window. Machine learning models were developed to explore how environmental factors may predict BTCP episodes.ResultsVariability in correlation strength between environmental variables and pain reports among dyads was found. Light and noise show moderate association (r = 0.50–0.70) in 66% of total deployments. The strongest correlation for individual pain events involved barometric pressure (r = 0.90); for pain trends over 24-hours the strongest correlations involved humidity (r = 0.84) and barometric pressure (r = 0.83). Machine learning achieved 70% BTCP prediction accuracy.ConclusionOur study provides insights into the role of ambient environmental factors in BTCP and offers novel opportunities to inform personalized pain management strategies, remotely support patients and their caregivers in self-symptom management. This research provides preliminary evidence of the impact of ambient environmental factors on BTCP in the home setting. We utilized real-world data and correlation analysis to provide an understanding of the relationship between environmental factors and cancer pain which may be helpful to others engaged in similar work.

The Relationships between Caregiver Burden, Physical Frailty, Race, Behavioral and Psychological Symptoms (BPSD), and Other Associated Variables: An Exploratory Study.

Background and Objectives: For persons with dementia, the relationships between caregiver burden, physical frailty, race, behavioral and psychological symptoms (BPSD), and other associated variables are poorly understood. Only one prior study examined the relationships among these variables but did not include race, which is an important social determinant of health outcomes in the United States. To examine these interactions, we conducted a cross-sectional exploratory study based on a model by Sugimoto and colleagues. Materials and Methods: The sample comprised 85 patient-caregiver dyads (58% White) seen in four centers in diverse regions of New York State. All patients met DSM5 criteria for a major neurocognitive disorder, had a Clinical Dementia Rating sum score of ≥3, and Mini-Mental State Examination (MMSE) score of 10 to 26. Other measures included the SHARE-Frailty Instrument(FI), the Neuropsychiatric Inventory (NPI) to assess BPSD, Zarit's Caregiver Burden Interview (CBI), Lawton's Activities of Daily Living (ADL) Scale, the MMSE, the Cumulative Illness Rating Scale for Geriatrics (CIRSG), age, and gender. Results: In our sample, 59% met the criteria for prefrail/subsyndromal or frail/syndromal (SSF) on the SHARE-FI. SSF had significant direct effects on the NPI and significant indirect effects on the CBI mediated through the NPI; the NPI had significant direct effects on the CBI. Race (White) had significant direct effects on the CBI (higher) and SSF (lower) but did not have significant indirect effects on the CBI. MMSE, ADL, and CIRSG were not significantly associated with the NPI or the CBI. Conclusions: Our analysis demonstrated that frailty, race, BPSD, and caregiver burden may directly or indirectly influence one another, and therefore should be considered essential elements of dementia assessment, care, and research. These results must be viewed as provisional and should be replicated longitudinally with larger samples.

"Better at home": Mixed methods report of intricacies in pediatric febrile neutropenia management.

Many febrile neutropenia (FN) episodes are low risk (LR) for severe outcomes and can safely receive less aggressive management and early hospital discharge. Validated risk tools are recommended by the Children's Oncology Group to identify LR FN episodes. However, the complex dynamics of early hospital discharge and burdens faced by caregivers associated with the FN episode have been inadequately described. An adapted quality-of-life (QoL) survey instrument was administered by a convergent mixed methods design; qualitative and quantitative data from two sources, the medical record and the mixed methods survey instrument, were independently analyzed prior to linkage and integration. Code book was informed by conceptual framework; open coding was used. Mixed methods analysis used joint display of results to determine meta-inferences. Twenty-eight patient-caregiver dyads participated with a response rate of 87%. Of the 27 FN episodes, 51.8% (14/27) were LR and 40.7% (11/27) had an early hospital discharge. The LR and early hospital discharge groups had higher mean QoL scores comparatively. Meta-inferences are reciprocal influencers and expand the complex situation; FN negatively affects the entire family, and the benefits of hospital management were outweighed by risks and worsened symptoms, so an individualized approach to management and care at home was preferred. Early discharge of LR FN episodes positively impacts QoL, yet risk-stratified management for FN is intricately complex. Optimal FN management should prioritize the patient's overall health; shared decision-making is recommended and can improve care delivery. These results should be confirmed in a larger, more heterogeneous population.

Mobile app activity engagement by cancer patients and their caregivers informs remote monitoring

Mobile phone applications (“apps”) are potentially an effective, low-burden method to collect patient-reported outcomes outside the clinical setting. Using such apps consistently and in a timely way is critical for complete and accurate data capture, but no studies of concurrent reporting by cancer patient–caregiver dyads have been published in the peer-reviewed literature. This study assessed app engagement, defined as adherence, timing, and attrition with two smartphone applications, one for adult cancer patients and one for their informal caregivers. This was a single-arm, pilot study in which adult cancer patients undergoing IV chemotherapy or immunotherapy used the DigiBioMarC app, and their caregivers used the TOGETHERCare app, for approximately one month to report weekly on the patients’ symptoms and wellbeing. Using app timestamp metadata, we assessed user adherence, overall and by participant characteristics. Fifty patient–caregiver dyads completed the study. Within the one-month study period, both adult cancer patients and their informal caregivers were highly adherent, with app activity completion at 86% for cancer patients and 84% for caregivers. Caregivers completed 86% of symptom reports, while cancer patients completed 89% of symptom reports. Cancer patients and their caregivers completed most activities within 48 h of availability on the app. These results suggest that the DigiBioMarC and TOGETHERCare apps can be used to collect patient- and caregiver-reported outcomes data during intensive treatment. From our research, we conclude that metadata from mobile apps can be used to inform clinical teams about study participants' engagement and wellbeing outside the clinical setting.

A dyadic analysis of financial toxicity and health-related quality of life among bone marrow transplant patients and their caregivers.

Relatively few dyad-based studies have evaluated the shared psychosocial and financial toxicity (FT) experiences of hematologic patients and their caregivers, especially those undergoing bone marrow transplantations (BMTs). This study evaluated the association of FT with health-related quality of life (QOL) among BMT patient-caregiver dyads. Survey and electronic health record data were collected between April 2021 and January 2022 from BMT patients and their caregivers pre- (T1) and post-intervention (T2). Thirty-four patient-caregiver dyads completed surveys; all dyads included a patient experiencing elevated T1 FT. The effect of the total FT score (i.e., the combination of psychological response, coping behaviors, and material conditions domain scores) on physical health, mental health, anxiety, depression and distress scores was evaluated using Actor-Partner Interdependence Modeling (APIM). Patients and caregivers who reported lower total FT scores had better physical and mental health, and lower anxiety, depressive symptoms, distress (APIM actor effects). None of the partner effects were significant in the APIM models. Other model findings indicated that compared with caregivers, patients had lower reported physical health; mental health scores were higher, on average, for all participants at the T2 compared with T1; and members of dyads whose caregiver took time off work reported better physical health and lower depressive symptoms and distress than those whose caregiver did not. Our study addresses a significant gap in dyad-based cancer FT studies; the findings underscore the need for additional research to help develop tailored dyad-level FT interventions for improving health-related QOL among BMT patients.

Abstract TP73: Outcomes in Mexican American Informal Stroke Caregivers and Differences by Ethnicity

Background: Informal home care is the most prevalent type of post-acute care (PAC) in Mexican American (MA) stroke survivors, but data on the impact on caregivers is not available. The objective was to investigate strain, positive aspects of caregiving, familial obligations/support, and depression in stroke caregivers and ethnic differences in a population-based study. Methods: Data are from Brain Attack Surveillance in Corpus Christi PAC Study. Community-dwelling stroke survivors and their caregivers were recruited (n=307). Caregiver eligibility included: 1) residence in study county, 2) not cognitively impaired, 3) not providing care pre-stroke. Caregiver interviews at ~90 days included sociodemographics, dyad characteristics, Modified Caregiver Strain Index (MCSI range 0-26, higher more), PAC scale by Tarlow et al (range 5-45, higher more), familial obligations/support scales by Sabogal et al (range 1-5, higher greater), and PHQ-8 (range 0-30, higher worse). Patient data were from interviews and medical records. Propensity score (PS) methods were used to balance caregiver and patient factors among MA and non-Hispanic white (NHW) 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 disability. PS were then included as a covariate in regression models considering the association between ethnicity and outcomes. Results: MA caregivers were younger, more likely female, and more likely a child than NHWs. Median MCSI, PAC scale, PHQ-8 were 11 (IQR:6-17), 36 (IQR:30-40), and 11 (IQR:9-15) in MAs and 13.5 (IQR:9-18.3), 30 (IQR:25-36.3) and 13 (IQR:10-16) in NHWS. MA ethnicity was associated with less caregiver strain (β=-2.22, 95% CI:-4.19, -0.26) and depression (β=-2.05, 95% CI:-3.48, -0.63) and more positive aspects of caregiving (β=2.96, 95% CI:0.91, 5.01), but not associated with familial obligations/support. Conclusions: Informal stroke caregivers report moderate levels of strain and depressive symptoms, with NHW caregivers reporting higher levels. MA caregivers report greater positive aspects of caregiving suggesting a possible intervention target to improve outcomes in MAs.

Dyadic effects of stigma on quality of life in people with schizophrenia and their family caregivers: Mediating role of patients' perception of caregivers' expressed emotion.

Schizophrenia, as a stressful diagnosis, profoundly impacts the whole family, especially people with schizophrenia and their caregivers. This study tested the potential mediating role of expressed emotion in the association between mental health stigma and quality of life in caregiver-patient dyads. Using a 2-wave longitudinal design with a 6-month interval between assessments, 161 dyads of patients with schizophrenia and their family caregivers (one patient and one caregiver) completed measures of mental health stigma, expressed emotion, and quality of life. The results showed that patients' self-stigma had no significant actor or partner effect on expressed emotion or quality of life. In contrast, caregivers' stigmatizing attitudes toward patients had a significant partner effect on patients' perception of caregivers' expressed emotion and quality of life. The mediating effect of patients' perception of caregivers' expressed emotion in the association between caregivers' stigmatizing ideas toward patients and patients' quality of life was significant. By focusing on the interdependence of patients and their caregivers, this study highlights the role of caregivers' stigmatizing attitudes toward patients and patients' perception of caregivers' expressed emotion on patients' quality of life. Psychoeducation and interventions should not only aim to reduce the self-stigma of people with schizophrenia but also their caregivers' stigmatizing ideas toward patients. Family interventions targeted at reducing the EE level of caregivers and patients' perception of caregivers' EE would also benefit the adaptation and quality of life of people with schizophrenia and their caregivers.

Family-Focused Facilitated Fitness: Feasibility and Acceptability of a Couple-Based Physical Activity Intervention for Hematopoietic Cell Transplant Recipients and Their Caregiving Partners

Reductions in physical activity (PA) are common among patients following hematopoietic cell transplantation, and a risk factor for poor physical functioning. PA among spouses/cohabiting partners, who frequently serve as the patient's primary caregiver, may also be reduced due to caregiving demands and limited bandwidth for self-care. In addition, the patient-caregiver relationship can be compromised, and communication patterns disrupted. All PA interventions in the hematopoietic cell transplantation setting have focused entirely on patients, ignoring an opportunity to synergistically engage and benefit the caregiver as well. We sought to test feasibility and acceptability of a couple-based intervention entitled Family-Focused Facilitated Fitness (FFFF), designed to improve PA as assessed by daily step counts among both patients undergoing hematopoietic cell transplantation and their caregivers. Guided by interdependence and communal coping perspectives, FFFF is an 8-week, remotely-delivered intervention that provides training in communication skills and joint problem-solving to help patients and caregivers support one another in PA. Participants are also given a Fitbit to track their steps and weekly individualized step prescription based on the 75th percentile ranked value of their last 7 recorded daily step counts. A priori benchmarks for feasibility and acceptability in this single-arm pilot were as follows: 50% of eligible couples would agree to participate, 70% of couples would attend all 8 sessions, 80% of participants would provide valid Fitbit wear data 4/7 days/ week, and among sessions reviewed for treatment fidelity, 85% of treatment protocol elements would be covered. Couples were recruited prior to transplant. Among 26 couples approached and deemed eligible, 17 enrolled (65% agreement) and completed baseline assessment. Three couples later withdrew after transplantation but prior to receiving the intervention, resulting in 14 couples commencing the intervention, on average 21 days post-transplant. Four couples subsequently discontinued due to medical complications (n = 3) or caregiver schedule (n = 1). Among the 10 couples who completed the intervention, the percentage of participants meeting our benchmark of valid Fitbit wear at least 4 days per week was 85% in week 1, 90% in weeks 2 to 7, and 80% in week 8. Treatment fidelity was 95% on average across 24 sessions reviewed (3 cases). Treatment satisfaction scores were uniformly high across multiple dimensions, with all means above 4 on the 1 to 5 scale. Daily step counts among those attending all 8 intervention sessions increased from 2249 ± 302 steps/day in week 1 to 4975 ± 1377 steps/day in week 8 among patients, and from 8676 ± 3760 steps/day in week 1 to 9838 ± 3723 steps/day in week 8 among caregivers. Qualitative feedback indicated perceived mental and physical health benefits of the program. Participants also offered suggestions for adaptations to accommodate medical setbacks and constraints. All a priori feasibility benchmarks were met or exceeded. Results offer promise for utility of the program to engage and leverage patient-caregiver dyads to increase PA following transplant. An investigation using a randomized controlled design will be necessary to adequately examine change over time relative to control and its possible impact on clinical and patient-reported outcomes.

Patient-Caregiver Dyads & End-of-Life Care: Caregiver Personality Disrupts Gender-Based Norms

ContextGender and personality may individually impact end-of-life care. Men often receive more aggressive treatments than women near death, and personality – particularly openness – may be associated with increased care utilization when it diverges from traditional treatment norms. However, research has not examined the interaction of these variables in a dyadic context. ObjectivesThis study examined the dyadic effects of patient gender and caregiver personality on end-of-life care. MethodsUsing data from the VOICE randomized clinical trial, the present sample consisted of patient-caregiver dyads receiving outpatient care for advanced cancer in Sacramento and Western New York. Analyses assessed whether caregiver personality was associated with gender-based differences in patient chemotherapy or emergency department/inpatient visits in the 30 days before death. Logistic regression examined the interaction between caregivers’ Big Five personality dimensions and patient gender while accounting for patient and caregiver demographic and health characteristics. ResultsOf a total of 134 patient-caregiver dyads, 19.4% (n = 26) of patients received chemotherapy and 47.8% (n = 64) had an emergency department/inpatient visit in the 30 days before death. Results demonstrated a significant interaction between caregiver openness and patient gender on receipt of chemotherapy (odds ratio = 0.07, p = 0.006). When caregivers were less open, men were more likely to receive chemotherapy near death, whereas when caregivers were more open, women were more likely to receive chemotherapy near death. ConclusionResults suggest caregiver personality characteristics, particularly openness, might disrupt gender-based treatment norms at end-of-life. Findings demonstrate that patient and caregiver factors can interact to explain patient healthcare utilization.

Efficacy of a Hospital Discharge Transition Plan in the care competence of patients with chronic conditions and their family caregivers: a clinical trial.

to assess the efficacy of a Hospital Discharge Transition Plan in the care competence and in adherence to the therapy of dyads comprised by patients with non-communicable chronic diseases and their caregivers. a controlled and randomized clinical trial; the sample was comprised by 80dyads of patients with chronic conditions and their caregivers, randomly allocated as follows: 40 to the control group and another 40 to the intervention group. The instruments to characterize the patient-caregiver dyad, the patients' and caregivers' care competence and the patients' adherence to the treatment scale were applied. The " CUIDEMOS educational intervention" was applied to the intervention group; in turn, the control group was provided usual care with the aid of a booklet, with phone follow-up via at month1. 52.5% of the patients and 81.3% of the caregivers were women. The patients' and caregivers' mean ages were 69.5±12.6 and 47.5±13.1years old, respectively. The Hospital Discharge Transition Plan increased the scores in the "knowledge", "uniqueness", "instrumental", "enjoying", "anticipation" and "social relations" dimensions, as well as the global care competence of the patients and family caregivers; in addition to the following factors: medications, diet, stimulants control, weight control, stress management, and global adherence to the therapy by the patient. There were no statistically significant differences between the control and intervention groups. the Hospital Discharge Transition Plan increased the patients' and family caregivers' care competence after the intervention, as well as the patients' adherence to the treatment. However, there were no differences between the control and intervention groups, possibly due to the similarity of the activities.

Patient and Caregiver Depression in Jordan After a First Stroke.

Poststroke depression among patients is well-recognized, while caregiver depression is understudied. The interaction between patient and caregiver depression is also unclear. This cross-sectional and follow-up study recruited 108 patient-caregiver dyads after the first-ever stroke. Demographic and clinical data, stroke severity (NIH Stroke Scale score), functional outcome (Barthel Index), and residual disability (modified Rankin Score) were documented. Using the self-reported Patient Health Questionnaire-9, we screened patients and caregivers for depressive symptoms upon admission and after 1 month. Changes in the prevalence and severity of depression were calculated. The Pearson correlation test and logistic regression analysis were conducted to evaluate both the correlation between both groups and significant predictors of depression. In total, 89 patients and 96 caregivers responded to both screenings. Depression was reported by 13.5% and 27.0% of patients on admission and after 1 month, and 9.4% and 18.8% of caregivers, respectively. Caregiver depression on admission was significantly correlated with patient depression on admission (P=0.031). In addition, depression in caregivers after 1 month was a significant predictor of patient depression (P=0.008). Predictors of caregiver depression after 1 month were female caregivers (P=0.026), caring for a male patient (P=0.045), higher mRS scores after 1 month (P=0.013), longer admissions (P=0.017), caregiver between 17 and 35 years of age compared with 54 to 70 years of age (P=0.030), and caring for a patient with poststroke depression at 1 month poststroke (P=0.003). Both stroke survivors and their caregivers are at high risk for depression, with a potential interaction between depression in the 2 groups.

Family Caregivers' Burden, Patients' Resourcefulness, and Health-Related Quality of Life in Patients With Colorectal Cancer.

To examine how family caregivers' burden and patients' resourcefulness influence each other and health-related quality of life (HRQOL) in patients with colorectal cancer. This study was conducted in an outpatient clinic at a medical center in Taichung, Taiwan. A total of 84 patient-caregiver dyads were recruited, and 43 patients had advanced-stage cancer. Patients and their caregivers signed consent forms individually. Patients were aged 29-77 years, and caregivers were aged 22-75 years. The theory of resourceful-ness and QOL guided this study. An F test and multiple regression analyses were conducted to examine the relationships among demographic characteristics, family caregivers' burden, patients' resourcefulness, and patients' HRQOL. Higher-resourcefulness patients tended to have caregivers with higher self-esteem and fewer health impacts. Caregivers with fewer impacts to health and finances and higher self-esteem were predictive of higher resourcefulness in patients. Higher patient resourcefulness, fewer caregiver disruptions to daily schedule and impacts to finances, and higher caregiver self-esteem were predictors of patients' HRQOL. When developing and evaluating education programs about cognitive skills training for patients with cancer, nurses should take family caregivers' burden into consideration to support optimal patient outcomes and HRQOL.

Physical activity together for MS (PAT-MS): Secondary outcomes of a randomized controlled feasibility trial

BackgroundCare partners provide essential care to those with multiple sclerosis (MS). Dyadic interventions promoting health behaviours have wide-reaching benefits for individuals with MS and their care partners. However, behavioural interventions to promote physical activity in patient-caregiver dyads have yet to be explored in an MS-specific context. This study examined the secondary outcomes of the “Physical Activity Together for Multiple Sclerosis (PAT-MS)” intervention, including dyadic adjustment, caregiving tasks, caregiver quality of life, coping, and MS impact in MS dyads. MethodsA randomized controlled feasibility trial of the 12-week behavioural PAT-MS intervention. The Dyadic Adjustment Scale, Caregiving Tasks in MS Scale, Caregiver Quality of Life in MS Scale, Coping with MS Caregiving Inventory, and MS Impact Scale measured secondary outcomes of interest. Mixed-model ANOVAs were used to test changes in variables between groups (PAT-MS vs wait-list control) over time. Results20 participants, including 10 people with MS (51.4 ± 10.1 years old; median patient-determined disease steps (PDDS) score= 4, IQR= 1.25) and 10 care partners (48.5 ± 12.1 years old) were recruited and randomized. There was no statistically significant effect of the intervention on any of the secondary outcomes (p= 0.67–1.00). However, large effect sizes and condition-by-time interaction effects indicated improvement in dyadic adjustment (d= 1.03, ηp2= 0.45), the criticism-coercion coping subscale (d= -0.93, ηp2= 0.49), and caregiving tasks (d= 1.05, ηp2= 0.52), specifically within psycho-emotional (d= 1.47, ηp2= 0.38) and socio-practical (d= 1.10, ηp2 =0.37) sub-domains of caregiving tasks after the PAT-MS intervention compared to the wait-list condition. ConclusionWhile this pilot feasibility study was not powered based on the secondary outcomes herein, our findings indicate improvement in dyadic adjustment and emotional and social caregiving tasks, with reduced reliance on criticism-coercion coping in the PAT-MS group compared to controls following the intervention. Findings indicate that PAT-MS may improve dyadic psychosocial well-being of people with moderate-to-severe MS and their care partners, and this should be examined next in a fully-powered study.

ADVANCE CARE PLANNING IN PRIMARY CARE: ENGAGING ACCOMPANIED OLDER ADULTS WITH COGNITIVE IMPAIRMENT

Abstract Alzheimer’s Disease and Related Dementias (ADRD) are among the most profoundly disabling and costly of all health conditions, and persons living with dementia are at heightened risk for high utilization of burdensome and costly end-of-life care. Family caregivers are at the forefront of managing ADRD, however, they are not routinely engaged in primary care discussions about prognosis and the healthcare preferences of the people for whom they care. Advance care planning (ACP) is a longitudinal communication process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. Early initiation of ACP, communication with the primary care team, and the inclusion of associated caregivers is imperative in ADRD care due to progressive and devastating effects on decision-making capacity connected with the disease. SHARE, a multicomponent communication intervention, engaged 273 patient-family caregiver dyads in a randomized-controlled trial collecting baseline and six-month survey data related to experiences in the primary care setting. 145 patient-caregiver dyads assigned to the intervention received an offer for a facilitated advance care planning conversation. This symposium will highlight 6-month outcomes from caregiver-reported surveys. Attendees will gain a perspective on ACP considerations in a cognitively impaired population including ethical considerations and the factors influencing preparedness for medical decision making for involved family caregivers. Additional attention concerning the quality and content of ACP conversations with patient-caregiver dyads and the development of a fidelity tool for usage with audio-recorded ACP conversations will be presented.

TRANSITIONS IN MEDICATION MANAGEMENT AMONG PATIENTS WITH DEMENTIA: PATIENT-CAREGIVER PERSPECTIVES

Abstract Older adults with Alzheimer’s disease and related dementias (ADRD) have higher rates of multimorbidity and polypharmacy. Medication adherence is critical to maintain health but is difficult with complex regimens. Little is known about how older adults with varying levels of cognitive impairment self-manage medications, and how responsibilities transition to caregivers. We conducted qualitative interviews with patient-caregiver dyads exploring how they managed multidrug regimens. Patients were eligible if they had 1) mild cognitive impairment (MCI), mild ADRD or moderate ADRD, 2) ≥3 chronic conditions, 3) ≥5 medicines and 4) a caregiver. Three coders applied a priori codes to transcripts and analyses followed the framework method. We interviewed 60 participants (Patients: mean age 78 years, 63% female, 50% white, 33% Black; Caregivers: mean age 65 years, 73% female, 60% spouse, 33% child). Patients took 9 medicines on average; cognitively, 36% had MCI, 40% mild ADRD and 23% moderate ADRD. Interviews revealed a tension between preservation of patient independence with early caregiver involvement. Patients and caregivers reported a strong preference towards patient autonomy in medication management, and patients with MCI and mild ADRD managed their medications independently. Among patients with moderate ADRD, caregivers assumed all medication responsibilities except when living separately. In those scenarios, caregivers set up organizers and made reminder calls, but did not observe medication intake. Transitions in medication management followed patient-driven medication errors that resulted in adverse events. These findings have important implications; clinicians should initiate conversations with caregivers and patients about early medication assistance and work to simplify regimens.