Organizational readiness for change towards implementing a sepsis survivor hospital to home transition-in-care protocol.

Background: Organizational readiness for change, defined as the collective preparedness of organization members to enact changes, remains understudied in implementing sepsis survivor transition-in-care protocols. Effective implementation relies on collaboration between hospital and post-acute care informants, including those who are leaders and staff. Therefore, our cross-sectional study compared organizational readiness for change among hospital and post-acute care informants. Methods: We invited informants from 16 hospitals and five affiliated HHC agencies involved in implementing a sepsis survivor transition-in-care protocol to complete a pre-implementation survey, where organizational readiness for change was measured via the Organizational Readiness to Implement Change (ORIC) scale (range 12-60). We also collected their demographic and job area information. Mann-Whitney U-tests and linear regressions, adjusting for leadership status, were used to compare organizational readiness of change between hospital and post-acute care informants. Results: Eighty-four informants, 51 from hospitals and 33 from post-acute care, completed the survey. Hospital and post-acute care informants had a median ORIC score of 52 and 57 respectively. Post-acute care informants had a mean 4.39-unit higher ORIC score compared to hospital informants (p = 0.03). Conclusions: Post-acute care informants had higher organizational readiness of change than hospital informants, potentially attributed to differences in health policies, expertise, organizational structure, and priorities. These findings and potential inferences may inform sepsis survivor transition-in-care protocol implementation. Future research should confirm, expand, and examine underlying factors related to these findings with a larger and more diverse sample. Additional studies may assess the predictive validity of ORIC towards implementation success.

Caregiving in the face of empathy loss in Frontotemporal Dementia: an integrative review.

OBJECTIVES: Frontotemporal Degeneration (FTD) is a common cause of early onset dementia with symptoms often presenting before 65 years of age and adding tremendous burden on caregivers. FTD caregiving research describes patient behavioral symptoms such as apathy and disinhibition as primary sources of poor caregiver psychological health; however, little attention has been paid to other common patient behaviors, such as loss of empathy. To better understand the relationship between empathy loss and FTD caregiver outcomes, this integrative review aimed to address the question: How does the loss of empathy in a person living with FTD (PLwFTD) impact the caregiver? METHOD: Quantitative and qualitative articles were found in PubMed, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Scopus and were assessed for quality using the Crowe Critical Appraisal Tool (CCAT). Through constant comparative analysis, articles were assessed to abstract common themes in the literature. RESULTS: From 333 citations, 8 qualitative and 8 quantitative studies published between 2010 and 2022 were included. Three main themes were uncovered: 1) caregiver emotional reactions to the PLwFTD; 2) caregiver psychological distress; 3) changes in the relationship. CONCLUSION: This review emphasizes the detrimental impact of empathy loss on FTD caregivers. Understanding these underexplored consequences is critical in understanding the well-being of caregivers and promoting ways to support caregivers.

Does self-care improve coping or does coping improve self-care? A structural equation modeling study.

BACKGROUND: Support interventions often address both self-care and coping. Different approaches are used to promote self-care and coping so clarifying the intervention effect can guide clinicians and researchers to provide interventions that achieve benefit. PURPOSE: To compare two models to determine whether self-care improves coping or coping improves self-care. METHODS: We used cross-sectional data from 248 caregivers obtained at enrollment into a randomized controlled trial testing the efficacy of a support intervention. Factor scores for scales measuring caregiver demand, self-care, coping, stress appraisal, and mental health were derived from exploratory factor analysis. Structural equation models were analyzed using the factor scores as estimates of each construct. To control possible spurious effects caregiver age, gender, relationship with the patient, and income adequacy were included. RESULTS: Both models were compatible with the data, but the self-care model was stronger than the coping model. That model had a non-significant chi square and an excellent fit to the data, χ2(4, N = 248) = 2.64, p = .62. The percentage of variance explained by the self-care model was 54 % for mental health, 42 % for stress appraisal, 10 % for avoidance coping, and 6 % for active coping. In the coping model the explained variance of stress appraisal dropped to 33 %, avoidance coping dropped to 0 %, and active coping dropped to 3 %. CONCLUSIONS: The self-care model was strongest, illustrating that self-care decreases stress, promotes coping, and improves mental health. These results suggest that promoting self-care may be more effective in improving mental health than interventions aimed at improving coping.

Health Coaching Improves Outcomes of Informal Caregivers of Adults With Chronic Heart Failure: A Randomized Controlled Trial.

BACKGROUND: Caring for someone with heart failure takes an emotional and physical toll. Engaging in self-care may decrease stress and improve the health of informal caregivers. We conducted a randomized controlled trial testing the efficacy of a virtual health coaching intervention, compared with health information alone, on the self-care, stress, coping, and health status of heart failure caregivers. METHODS: We enrolled 250 caregivers providing care at least 8 hours/week, reporting poor self-care, and able to use technology. All received a tablet device programmed with websites providing vetted information on heart failure and caregiving. Half were randomized to also receive 10 synchronous support sessions virtually with a health coach over 6 months. Data on self-care, stress, coping, and health status were collected at baseline and 3 and 6 months. Linear mixed-effects models were used to assess the interaction between time and treatment group. RESULTS: The sample was majority female (85.2%), White (62.2%), spouses (59.8%), and aged 55±13.6 years. Many were employed full time (41.8%). They had been caring for the patient 8 hours/day for a median of 3.25 years. In the intention-to-treat analysis, caregivers who received the health coach intervention had statistically and clinically greater improvement across 6 months compared with the control group in the primary outcome of self-care maintenance (5.05±1.99; P=0.01) and stress (-4.50±1.00; P<0.0001). Self-care neglect declined significantly (-0.65±0.32; P=0.04), but the difference between the treatment arms disappeared when the results were adjusted for multiple comparisons. Mental health status improved statistically but not clinically (3.35±1.61; P=0.04). Active coping improved in both groups but not significantly more in the intervention group (P=0.10). Physical health status was unchanged (P=0.27). CONCLUSIONS: This virtual health coaching intervention was effective in improving self-care and stress in heart failure caregivers.

Characterization of CKD illness representation profiles using patient-level factors.

BACKGROUND: Illness perceptions are the unique perspective individuals have on their illness, based on their context and experiences, and are associated with patient outcomes including coping and adherence. The purpose of this study was to explore characteristics that may be driving membership in illness perceptions cluster groups for adults with chronic kidney disease (CKD). METHODS: This study was conducted within the multicenter longitudinal Chronic Renal Insufficiency Cohort (CRIC) Study. Cross-sectional data were collected and combined with CRIC data. Illness perceptions were measured using the Revised Illness Perception Questionnaire. Clustering analysis was conducted in R, and bivariate analysis including linear regression was performed in STATA 16. RESULTS: The sample (n = 197) had a mean age of 68, was 52% women, 53% non-White, and mean estimated glomerular filtration rate (eGFR) 56 ml/min/1.73 m2. Three cluster groups were identified, labeled as "Disengaged" (n = 20), "Well-Resourced" (n = 108), and "Distressed" (n = 69). The "Disengaged" group was characterized by low CKD knowledge, many recent hospitalization days, and the lowest perceived CKD burden. The "Well-Resourced" group was characterized by the highest levels of education, CKD knowledge, optimism, and medication adherence. The "Distressed" group was characterized by the highest levels of depression scores, comorbidity burden, CKD burden, CKD symptoms, and lowest optimism. Group membership significantly predicted the number of hospitalization days in adjusted analyses. CONCLUSIONS: Illness perceptions groups are associated with number of hospitalization days but are independent of many patient characteristics. Illness perceptions data could be used to tailor care for specific patients at risk for poor health outcomes.

Internal consistency reliability of the Revised Illness Perceptions Questionnaire: A systematic review and reliability generalization meta-analysis.

The Revised Illness Perception Questionnaire (IPQ-R) assesses patients' perspectives of their illnesses. Original psychometric testing occurred in limited populations. The purpose of this reliability generalization meta-analysis was to: (1) estimate internal consistency reliability of each IPQ-R subscale, and (2) test moderators of these estimates. Web of Science was searched in July 2022 for articles citing the original IPQ-R paper that reported IPQ-R reliability data. Cronbach's alphas (⍺) were pooled for each IPQ-R subscale using inverse variance weighting and DerSimonian and Laird estimation. Sixty-six studies met criteria. Overall pooled ⍺ estimates were acceptable: 0.71-0.87. Treatment control reliability was reduced among cardiac (⍺ = 0.68), diabetes/kidney disease (⍺ = 0.63), and mixed/other (⍺ = 0.66) samples; cyclical reliability was reduced in cancer (⍺ = 0.65) samples. Age, gender, and race were also significant moderators. Subscale reliability varied based on sample characteristics. Adapting IPQ-R subscales to account for sample variation could improve measurement of illness perception constructs.

Does cognitive impairment moderate the relationship between social isolation and anxiety? A 5-year longitudinal study of a nationally representative sample of community residing older adults.

BACKGROUND: Anxiety is common in older adults and social isolation is one of the leading factors associated with their anxiety. However, what is unknown is how the relationship between social isolation and anxiety differs by cognitive status. Therefore, this study was conducted to (1) compare the level of social isolation and anxiety in older adults who developed probable dementia and mild cognitive impairment (MCI) to those who maintained normal cognitive function over 5 years; and (2) determine if cognitive impairment moderates the relationship between changes in social isolation and changes in anxiety over 5 years. METHODS: A secondary data analysis was conducted using the National Social Life, Health, and Aging Project (NSHAP): Wave 2 (2010-2011) and Wave 3 (2015-2016). The participants were categorized into three groups: Participants who developed probable dementia over 5 years (4.3%), developed probable MCI (19.1%), or maintained normal cognitive function (76.6%). Weighted linear regression analyses with a group interaction were used to examine the moderating effect of cognitive impairment on the relationship between changes in social isolation and anxiety. RESULTS: At the 5-year follow up, there were statistically significant differences in social isolation between the three groups (p = 0.043). Regression analyses showed that increased social isolation over time was related to increased anxiety over 5 years regardless of cognitive status after controlling for covariates (p = 0.017). CONCLUSIONS: The relationship between social isolation and anxiety was a universal phenomenon regardless of cognitive status. Tailored interventions targeting both people with or without cognitive impairment are needed to lessen social isolation and anxiety.

Application of a Human Factors and Systems Engineering Approach to Explore Care Transitions of Sepsis Survivors From Hospital to Home Health Care.

STUDY AIM: This study aims to describe the transition-in-care work process for sepsis survivors going from hospitals to home health care (HHC) and identify facilitators and barriers to enable practice change and safe care transitions using a human factors and systems engineering approach. BACKGROUND: Despite high readmission risk for sepsis survivors, the transition-in-care work process from hospitals to HHC has not been described. METHODS: We analyzed semi-structured needs assessment interviews with 24 stakeholders involved in transitioning sepsis survivors from two hospitals and one affiliated HHC agency participating in the parent implementation science study, I-TRANSFER. The qualitative data analysis was guided by the Systems Engineering Initiative for Patient Safety (SEIPS) framework to describe the work process and identify work system elements. RESULTS: We identified 31 tasks characterized as decision making, patient education, communication, information, documentation, and scheduling tasks. Technological and organizational facilitators lacked in HHC compared to the hospitals. Person and organization elements in HHC had the most barriers but few facilitators. Additionally, we identified specific task barriers that could hinder sepsis information transfer from hospitals to HHC. CONCLUSION: This study explored the complex transition-in-care work processes for sepsis survivors going from hospitals to HHC. We identified barriers, facilitators, and critical areas for improvement to enable implementation and ensure safe care transitions. A key finding was the sepsis information transfer deficit, highlighting a critical issue for future study. APPLICATION: We recommend using the SEIPS framework to explore complex healthcare work processes before the implementation of evidence-based interventions.

Feasibility, usability, and acceptability of psychoeducational videoconferencing interventions for informal caregivers: A systematic review of randomized controlled trials.

Psychoeducational videoconferencing interventions bypass traditional in-person barriers to attendance and are effective in improving caregiving skills, self-care, and wellness among informal caregivers. Information on their feasibility, usability, and acceptability from the caregivers' perspective is needed to inform future designs and developments. This systematic review follows PRISMA 2020 guidelines to integrate this information. Five databases were systematically searched for relevant randomized control trials published between January 2012 and December 2022. Reference lists were cross-checked for additional studies. Relevant studies were appraised and had their data extracted. This review contains 14 randomized controlled trials. Retention rates ranged from 55.56% to 100%, and major reasons for withdrawing include deteriorating patient health, lack of interest, and technical difficulties (feasibility). Caregivers found the videoconference technology usable, although participants in one intervention experienced poor connectivity and persistent technical issues (usability). Most caregivers were satisfied with videoconferencing interventions, found their content applicable to their situation, and appreciated their structure (acceptability). Those in videoconferencing group interventions were satisfied with small caregiver group sizes (acceptability). Adding respite care to interventions and incorporating short and regular videoconferencing sessions may improve feasibility. Ensuring small group sizes in videoconferencing group interventions and using participatory design may enhance acceptability. Advocacy is needed for employees identifying as informal caregivers to receive employer support and for quality connectivity within underserved areas. This may improve the feasibility and usability of interventions, allowing caregivers to receive the support they need. In future studies, power analyses and recruiting more caregivers may better assess feasibility.

Hospitalizations, Emergency Department Visits, and Home Health Use Among Older Adults With Sensory Loss.

Objectives: This study examines healthcare resource use (hospitalizations, emergency department [ED] visits, and home health episodes) among adults 65 and older diagnosed with hearing, vision, or dual sensory loss (SL) seen in the primary care setting of an academic health system. Methods: Multivariable logistic regression models were used to examine the relationship between SL (identified using ICD-10 codes) and healthcare resource use for 45,000 primary care patients. Results: The sample included 5.5% (N = 2479) with hearing loss, 10.4% (N = 4697) with vision loss, and 1.0% with dual SL (N = 469). Hearing loss increased the likelihood of having an ED visit (OR = 1.22, CI: 1.07-1.39), and home health services (OR = 1.27, CI: 1.07-1.51) compared to older adults without any SL. Vision loss reduced the likelihood of having a hospitalization (OR = .81, CI: .73-.91). Discussion: Findings support research into the drivers of healthcare use among older adults with sensory loss.

Psychometric Analysis of the Health Self-Care Neglect Scale.

OBJECTIVES: The Health Self-Care Neglect (HSCN) scale is a measure of self-care neglect developed for use in informal caregivers, where self-care is defined as behaviors undertaken to maintain health. There was no formal psychometric analysis of the scale, so we tested a 9-item, dichotomous-response version of the HSCN scale in a sample of 250 informal caregivers of adults with chronic heart failure. METHODS: As the indicators of self-care neglect were considered formative (influencing the latent variable directly) rather than reflective (influenced by the latent variable), we used a procedure for the specification of formative measurement models. First, maximally correlated composites of indicators were identified for the latent variable, and optimal scoring weights were developed. Then, the reflective factor was tested with confirmatory factor analysis, and longitudinal invariance of the factorial structure was tested by introducing model constraints. Reliability was assessed with composite reliability model-based estimates. Concurrent validity was assessed by correlating the HSCN scale total score with the maintenance scale score of the Self-Care Inventory. RESULTS: Strict invariance, the highest level possible, was achieved. Reliability was 0.81 at baseline. Concurrent validity was demonstrated (r = -0.475, P < .0001). CONCLUSION: The results of this analysis indicate that the HSCN scale is reliable, stable, and valid as a measure of health self-care neglect when tested in a sample of caregivers. The HSCN scale measures the successful performance of self-care, whereas existing measures of self-care reflect intention. Understanding both intention and behavior is useful, so we recommend using the HSCN scale in addition to existing measures of self-care.

An integrative review of measures of transitions and care coordination for persons living with dementia and their caregivers.

Introduction: High rates of hospital visits and readmissions are common among persons living with dementia, resulting in frequent transitions in care and care coordination. This paper identifies and evaluates existing measures of transitions and care coordination for persons living with dementia and their caregivers. Methods: This integrative review builds off a prior review using a systematic search of online databases (PubMed, EBSCO, CINAHL, PsycInfo, and Scopus) to identify records and locate reports (or articles) that use measures of care transitions and care coordination. Identified measures were compared to the Alzheimer's Association's Dementia Care Practice Recommendations to evaluate strengths and weaknesses of the measure in this population, such as if measures were person- and family-centered. Results: Seventy-one reports using measures of transitions in care and care coordination for persons living with dementia and their caregivers were identified. There were multiple measures identified in some reports. Three main areas of measures were classified into: identification of the population (3 measures, 8 reports), transitional care and care coordination delivery (14 measures, 17 reports), and transitional care and care coordination outcomes (e.g., health-care use, cost, and mortality; 17 measures, 60 reports). A strength of the three main areas of measures was that a portion of the measures were person- and family-centered. Variability in the operational definitions of some measures and time intensiveness of collecting the measure (e.g., number of items, the time it takes to complete the items) were common weaknesses. Discussion: Transitions and care coordination measures are varied across studies targeted at persons living with dementia and their caregivers. Existing measures focus heavily on outcomes, specifically health-care resource use, and cost, rather than the elements of transitional care or care coordination. Future measure development focused on care transitions and service coordination is needed.

iCare4Me for FTD: A pilot randomized study to improve self-care in caregivers of persons with frontotemporal degeneration.

Introduction: A tremendous burden is placed on frontotemporal degeneration (FTD) caregivers who sacrifice their own self-care to manage the functional impairments of their loved one, contributing to high levels of stress and depression. Health coaching provides support for coping with stress while fostering self-care behaviors. We report on preliminary evidence for efficacy of a virtual health coach intervention aimed at increasing self-care. Methods: Thirty-one caregivers of persons with behavioral variant FTD (bvFTD) were assigned randomly to an intervention group, which included 10 coaching sessions over 6 months plus targeted health information or the control group receiving standard care augmented with the health information. Caregiver self-care (primary outcome), stress, depression, coping, and patient behavioral symptoms were collected at enrollment and 3 and 6 months. Change over time was evaluated between the intervention and control groups using linear mixed-effects models. Results: There was a significant group-by-time interaction for self-care monitoring (t58 = 2.37, p = 0.02 and self-care confidence (t58 = 2.32, p = 0.02) on the Self-Care Inventory, demonstrating that caregivers who received the intervention improved their self-care over time. Behavioral symptoms were reduced in bvFTD patients whose caregivers received the intervention (t54 = -2.15, p = 0.03). Discussion: This randomized controlled trial (RCT) shows promise for health coaching as a way to increase support that is urgently needed to reduce poor outcomes in FTD caregivers.

The study protocol to evaluate implementation of the transitional care model in four U.S. healthcare systems during the Covid-19 pandemic.

This study protocol describes the conceptual framework, design, and methods being employed to evaluate the implementation of the Transitional Care Model (TCM) as part of a randomized controlled trial. The trial, designed to examine the health and cost outcomes of at-risk hospitalized older adults, is being conducted in the context of the COVID-19 pandemic. This parallel study is guided by the Practical, Robust, Implementation and Sustainability Model (PRISM) and uses a fixed, mixed methods convergent parallel design to identify challenges encountered by participating hospitals and post-acute and community-based providers that impact the implementation of the TCM with fidelity, strategies implemented to address those challenges and the relationships between challenges, strategies, and rates of fidelity to TCM's core components over time. Prior to the study's launch and throughout its implementation, qualitative and quantitative data related to COVID and non-COVID challenges are being collected via surveys and meetings with healthcare system staff. Strategies implemented to address challenges and fidelity to TCM's core components are also being assessed. Analyses of quantitative (established metrics to evaluate TCM's core components) and qualitative data (barriers and facilitators to implementation) are being conducted independently. These datasets are then merged and interpreted together. General linear and mixed effects modeling using all merged data and patients' socio-demographic and social determinants of health characteristics, will be used to examine relationships between key variables and fidelity rates. Implications of study findings in the context of COVID-19 and future research opportunities are suggested. Trial registration: ClinicalTrials.gov Identifier: NCT04212962.

Changes in Tangible Social Support Over Time Among Older Adults Receiving Long-Term Services and Supports.

The purpose of this study was to examine changes in and predictors of perceived tangible social support over a 2-year period among older adults new to LTSS. Linear mixed effects models were used to model repeated measures of tangible social support as a function of LTSS type [NH, AL, HCBS], personal, clinical, and health-related quality of life variables. AL residents reported greater initial tangible social support, but NH and HCBS residents improved more over time. Predictors of increased tangible social support over time included greater positive affect, sense of aesthetics, education, satisfaction with family relationships, and total number of close friends and family. Decreased tangible support over time was associated with greater depressive symptoms. Findings indicate the positive influence of NH and HCBS services on perception of tangible social support, and the importance of addressing depressive symptoms and assisting with the maintenance of important relationships.

Developing effective health coaches: Experience gained in a clinical trial of a health coach intervention.

OBJECTIVE: To identify the characteristics of an effective health coach and describe how these characteristics can be developed. METHODS: A qualitative descriptive design was used to obtain insights from a convenience, homogenous sample of health coaches, social workers, and research staff members collaborating as members of a team providing a health coaching telehealth intervention for lay caregivers. Individual interviews were analyzed using thematic analysis. RESULTS: The 11 study participants interviewed were predominately married (75 %), female (92 %) and Caucasian (83 %). Ages ranged from 27 to 66 with an average age of 42 years. The sample was highly educated, with five having attained a terminal degree (PhD or DNP). The participants described three themes of characteristics that contributed to the success of health coaches: personal characteristics, professional characteristics, and program characteristics. CONCLUSIONS: These characteristics expand what is known about attributes that contribute to successful health coaching. Most can be trained or used in developing programs and interventions. PRACTICE IMPLICATIONS: Our findings suggest that many of the core skills of an effective health coach can be developed through individual training, program design, and peer support. Innate personal characteristics such as trustworthiness, integrity, and compassion are hard to influence but can be identified in the hiring process.

Treatment Adherence in CKD and Support From Health care Providers: A Qualitative Study.

Rationale & Objective: Adherence to recommended medical treatment is critical in chronic kidney disease (CKD) to prevent complications and progression to kidney failure. Overall adherence to treatment is low in CKD, and as few as 40% of patients with kidney failure receive any documented CKD-related care. The purpose of this study was to explore the experiences of patients with CKD and their adherence to CKD treatment plans, and the role their health care providers played in supporting their adherence. Study Design: One-on-one interviews were conducted in 2019-2020 using a semi-structured interview guide. Participants described experiences with adherence to treatment plans and what they did when experiencing difficulty. Setting & Participants: Participants were recruited from the Chronic Renal Insufficiency Cohort (CRIC) study. All CRIC participants were older than 21 years with CKD stages 2-4; this sample consisted of participants from the University of Pennsylvania CRIC site. Analytical Approach: Interviews were recorded, transcribed, and coded using conventional content analysis. Data were organized into themes using NVivo 12. Results: The sample (n = 32) had a mean age of 67 years, 53% were women, 59% were non-White, with a mean estimated glomerular filtration rate of 56.6 mL/min/1.73 m2. From analysis of factors relevant to treatment planning and adherence, following 4 major themes emerged: patient factors (multiple chronic conditions, motivation, outlook), provider factors (attentiveness, availability/accessibility, communication), treatment planning factors (lack of plan, proactive research, provider-focused treatment goals, and shared decision making), and treatment plan responses (disagreeing with treatment, perceived capability deficit, lack of information, and positive feedback). Limitations: The sample was drawn from the CRIC study, which may not be representative of the general population with CKD. Conclusions: These themes align with Behavioral Learning Theory, which includes concepts of internal antecedents (patient factors), external antecedents (provider factors), behavior (treatment planning factors), and consequences (treatment plan responses). In particular, the treatment plan responses point to innovative potential intervention approaches to support treatment adherence in CKD.

Older Adult and Family Caregiver Perspectives on Engagement in Primary Care.

The purpose of the current in-depth qualitative study was to explore the experiences of older adults and family caregivers in primary care. Twenty patients and caregivers from six Comprehensive Primary Care Plus (CPC+) practices' Patient and Family Advisory Councils within a large academic health system participated in telephone interviews from December 2018 to May 2019. Participants were mostly women (60%), with an average age of 71 years and nine chronic conditions. Transcripts were coded using conventional content analysis. Two key themes emerged related to person-centered care (PCC): Engagement in Health Care and Patient-Provider Relationship. Engagement in health care was defined by participants as: being proactive, centering on patient goals in treatment discussions, adherence, and self-triaging. Approximately all participants discussed the importance of the relationship and interactions with their provider as influencing their engagement. The identified themes offer recommendations for further improvement of primary PCC. [Journal of Gerontological Nursing, 48(11), 7-13.].

Content Validity Assessment of the Revised Illness Perception Questionnaire in CKD Using Qualitative Methods.

BACKGROUND: The Revised Illness Perception Questionnaire (IPQ-R) measures individuals' unique perceptions of their illness. While psychometric properties of the IPQ-R have been demonstrated in many disease populations, its content validity has not been extensively studied in non-dialysis chronic kidney disease (CKD). Unique features of CKD (e.g., few symptoms in early stages) may impact the measurement of illness perceptions. The purpose of this study was to explore the IPQ-R content validity in a sample of CKD patients. METHODS: Thirty-one participants completed the IPQ-R and were interviewed regarding their subscale scores (timeline, consequences, personal control, treatment control, coherence, cyclical, and emotions). Participants' agreement with their scores was tallied and assessed qualitatively for themes related to the content validity of the measure. RESULTS: Individual participant agreement with their subscale scores averaged 79% (range: 29-100%). Subscale agreement varied: timeline (100%), consequences, coherence, and emotion (83% each), cyclical (75%), personal control (65%), and treatment control (64%). A qualitative exploration of disagreement responses revealed concerns with the relevance and comprehensibility of personal control and treatment control. CONCLUSIONS: Some IPQ-R subscales may pose content validity concerns in the non-dialysis CKD population. Item modification for comprehensibility (personal control) and relevance (treatment control) should be considered. Future studies should explore the impact of a patient's symptom experience on IPQ-R validity, especially in populations like CKD with a higher proportion of asymptomatic patients.

Caregiver Engagement Enhances Outcomes Among Randomized Control Trials of Transitional Care Interventions: A Systematic Review and Meta-analysis.

BACKGROUND: Fluctuations in health among chronically ill adults result in frequent health care transitions. Some interventions to improve patient outcomes after hospitalization include caregiver engagement as a core component, yet there is unclear evidence of the effects of this component on outcomes. OBJECTIVE: The objective of this study was to synthesize evidence regarding the attention given to caregiver engagement in randomized control trials of transitional care interventions (TCIs), estimate the overall intervention effects, and assess caregiver engagement as a moderator of intervention effects. METHODS: Three databases were systematically searched for randomized control trials of TCIs targeting adults living with physical or emotional chronic diseases. For the meta-analysis, overall effects were computed using the relative risk (RR) effect size and inverse variance weighting. RESULTS: Fifty-four studies met criteria, representing 31,291 participants and 66 rehospitalizations effect sizes. Half (51%) the interventions lacked focus on caregiver engagement. The overall effect of TCIs on all-cause rehospitalizations was nonsignificant at 1 month (P=0.107, k=29), but significant at ≥2 months [RR=0.89; 95% confidence interval (CI): 0.82, 0.97; P=0.007, k=27]. Caregiver engagement moderated intervention effects (P=0.05), where interventions with caregiver engagement reduced rehospitalizations (RR=0.83; 95% CI: 0.75, 0.92; P=0.001), and those without, did not (RR=0.97; 95% CI: 0.87, 1.08; P=0.550). Interventions with and without caregiver engagement did not differ in the average number of components utilized, however, interventions with caregiver engagement more commonly employed baseline needs assessments (P=0.032), discharge planning (P=0.006), and service coordination (P=0.035). DISCUSSION: Future TCIs must consistently incorporate the active participation of caregivers in design, delivery, and evaluation.