Principles for Health Information Collection, Sharing, and Use: A Policy Statement From the American Heart Association.

The evolution of the electronic health record, combined with advances in data curation and analytic technologies, increasingly enables data sharing and harmonization. Advances in the analysis of health-related and health-proxy information have already accelerated research discoveries and improved patient care. This American Heart Association policy statement discusses how broad data sharing can be an enabling driver of progress by providing data to develop, test, and benchmark innovative methods, scalable insights, and potential new paradigms for data storage and workflow. Along with these advances come concerns about the sensitive nature of some health data, equity considerations about the involvement of historically excluded communities, and the complex intersection of laws attempting to govern behavior. Data-sharing principles are therefore necessary across a wide swath of entities, including parties who collect health information, funders, researchers, patients, legislatures, commercial companies, and regulatory departments and agencies. This policy statement outlines some of the key equity and legal background relevant to health data sharing and responsible management. It then articulates principles that will guide the American Heart Association's engagement in public policy related to data collection, sharing, and use to continue to inform its work across the research enterprise, as well as specific examples of how these principles might be applied in the policy landscape. The goal of these principles is to improve policy to support the use or reuse of health information in ways that are respectful of patients and research participants, equitable in impact in terms of both risks and potential benefits, and beneficial across broad and demographically diverse communities in the United States.

Depressive Symptoms and Sleep Quality Mediate the Relationship Between Race and Quality of Life Among Patients With Heart Failure: A Serial Multiple Mediator Model.

BACKGROUND: Black patients with heart failure (HF) report worse quality of life (QoL) than White patients. Few investigators have examined mediators of the association between race and QoL, but depressive symptoms and sleep quality are associated with QoL. OBJECTIVE: The aim of this study was to determine whether depressive symptoms and sleep quality are mediators of the relationship between race and QoL among patients with HF. METHODS: This was a cross-sectional study. We included 271 outpatients with HF. Self-reported race (White/Black), depressive symptoms (Patient Health Questionnaire), sleep quality (Pittsburgh Sleep Quality Index), and QoL (Kansas City Cardiomyopathy Questionnaire) were collected at baseline. A serial multiple mediator analysis was conducted using the PROCESS macro for SPSS. RESULTS: Ninety-six patients (35.4%) were Black. Black participants reported higher levels of depressive symptoms and poorer sleep quality than White participants. Race was not directly associated with QoL but indirectly associated with QoL through depressive symptoms and poorer sleep quality. Because of higher levels of depressive symptoms and poorer sleep quality, Black participants reported poorer QoL than White participants. CONCLUSIONS: Depressive symptoms and sleep quality together mediated the relationship between race and QoL. These findings suggest that screening for depressive symptoms and sleep quality could identify patients at risk for poor QoL, especially in Black patients.

Psychometric Evaluation of the Traditional Chinese Version of the Self-Care of Heart Failure Index Version 7.2.

BACKGROUND: The Self-Care of Heart Failure Index (SCHFI) is a widely used instrument used to measure self-care in both research and clinical settings. The lack of a psychometric evaluation of the traditional Chinese version of the SCHFI (SCHFI-C) might limit its utilization in non-Mainland Chinese populations such as Hong Kong, Macau, and Taiwan. OBJECTIVE: This study aimed to evaluate the psychometric properties of the SCHFI-C v.7.2. METHODS: Participants included 365 adults with heart failure. Breslin's method of translation was used to translate the SCHFI v.7.2 into traditional Chinese. Exploratory factor analysis was conducted to examine the dimensionality structure of each scale. Then, composite reliability was calculated to assess the reliability of 3 scales. Construct validity was examined by hypothesis testing and known-group comparisons. RESULTS: The results of exploratory factor analysis suggest its multidimensionality of each scale. More specifically, the findings indicated a unique internal structure of the self-care maintenance ("lifestyle-related behaviors" and "consulting behaviors") and self-care management ("self-reliance behaviors" and "help-seeking behaviors") scales. The composite reliability of 3 scales were 0.81, 0.88, and 0.82, respectively, reaching adequate level. As for construct validity, the significant associations between the 3 SCHFI domains and self-care confidence as well as significant group difference among patients of different ages and educational backgrounds supported good construct validity. CONCLUSIONS: This study provides evidence of the reliability and validity of the SCHFI-C v.7.2. The traditional SCHFI-C v.7.2 can serve as a valid and reliable outcome measure to evaluate the effects of self-care-promoting interventions.

Feasibility and Acceptability of Using Wireless Limited Polysomnography to Capture Sleep Before, During, and After Hospitalization for Patients With Planned Cardiothoracic Surgery.

BACKGROUND: Sleep disruption, a common symptom among patients requiring cardiovascular surgery, is a potential risk factor for the development of postoperative delirium. Postoperative delirium is a disorder of acute disturbances in cognition associated with prolonged hospitalization, cognitive decline, and mortality. OBJECTIVE: The aim of this study was to evaluate the feasibility and acceptability of using polysomnography (PSG) to capture sleep in patients with scheduled cardiothoracic surgery. METHODS: Wireless limited PSG assessed sleep at baseline (presurgery at home), postoperatively in the intensive care unit, and at home post hospital discharge. Primary outcomes were quality and completeness of PSG signals, and acceptability by participants and nursing staff. RESULTS: Among 15 patients, PSG data were of high quality, and mean percentage of unscorable data was 5.5% ± 11.1%, 3.7% ± 5.4%, and 3.7% ± 8.4% for baseline, intensive care unit, and posthospitalization measurements, respectively. Nurses and patients found the PSG monitor acceptable. CONCLUSIONS: Wireless, limited PSG to capture sleep across the surgical continuum was feasible, and data were of high quality. Authors of future studies will evaluate associations of sleep indices and development of postoperative delirium in this high-risk population.

Cluster analysis of heart failure patients based on their psychological and physical symptoms and predictive analysis of cluster membership.

AIM: Patients with heart failure experience multiple co-occurring symptoms that lower their quality of life and increase hospitalization and mortality rates. So far, no heart failure symptom cluster study recruited patients from community settings or focused on symptoms predicting most clinical outcomes. Considering physical and psychological symptoms together allows understanding how they burden patients in different combinations. Moreover, studies predicting symptom cluster membership using variables other than symptoms are lacking. We aimed to (a) cluster heart failure patients based on physical and psychological symptoms and (b) predict symptom cluster membership using sociodemographic/clinical variables. DESIGN: Secondary analysis of MOTIVATE-HF trial, which recruited 510 heart failure patients from a hospital, an outpatient and a community setting in Italy. METHODS: Cluster analysis was performed based on the two scores of the Hospital Anxiety-Depression scale and two scores of the Heart-Failure Somatic Perception Scale predicting most clinical outcomes. ANOVA and chi-square test were used to compare patients' characteristics among clusters. For the predictive analysis, we split the data into a training set and a test set and trained three classification models on the former to predict patients' symptom cluster membership based on 11 clinical/sociodemographic variables. Permutation analysis investigated which variables best predicted cluster membership. RESULTS: Four clusters were identified based on the intensity and combination of psychological and physical symptoms: mixed distress (high psychological, low physical symptoms), high distress, low distress and moderate distress. Clinical and sociodemographic differences were found among clusters. NYHA-class (New York Heart Association) and sleep quality were the most important variables in predicting symptom cluster membership. CONCLUSIONS: These results can support the development of tailored symptom management intervention and the investigation of symptom clusters' effect on patient outcomes. The promising results of the predictive analysis suggest that such benefits may be obtained even when direct access to symptoms-related data is absent. IMPLICATIONS: These results may be particularly useful to clinicians, patients and researchers because they highlight the importance of addressing clusters of symptoms, instead of individual symptoms, to facilitate symptom detection and management. Knowing which variables best predict symptom cluster membership can allow to obtain such benefits even when direct access to symptoms-data is absent. IMPACT: Four clusters of heart failure patients characterized by different intensity and combination of psychological and physical symptoms were identified. NYHA class and sleep quality appeared important variables in predicting symptom cluster membership. REPORTING METHOD: The authors have adhered to the EQUATOR guidelines STROBE to report observational cross-sectional studies. PATIENT OR PUBLIC CONTRIBUTION: Patients were included only for collecting their data.

Generic and disease-specific self-care instruments in older patients affected by multiple chronic conditions: A descriptive study.

AIMS: To describe and compare generic and disease-specific self-care measures in patients with multiple chronic conditions (MCCs) in the three dimensions of self-care maintenance, monitoring, and management. DESIGN: Multicentre cross-sectional study. METHODS: Patients aged 65 and over with MCCs. We used Self-Care of Chronic Illness Inventory to measure generic self-care, Self-care of Diabetes Inventory to measure self-care in diabetes mellitus, Self-Care of Heart Failure (HF) Index to measure self-care in HF, and Self-Care of Chronic Obstructive Pulmonary Disease Inventory to measure self-care in chronic lung diseases. RESULTS: We recruited 896 patients. Multimorbid patients with diabetes had lower scores on the self-care maintenance scale, and diabetic patients in insulin treatment on the generic management scale than on the disease-specific instrument. Multimorbid patients with HF or chronic lung diseases scored higher on generic self-care maintenance and monitoring scales than disease-specific ones. There was a partial consistency between the generic and disease-specific self-care maintenance and management. Inadequate behaviours were recorded in disease-specific self-care monitoring rather than generic ones. CONCLUSIONS: Older patients affected by MCCs scored differently in the generic and disease-specific instruments, showing inadequate self-care in some of the three self-care dimensions. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: The choice between generic and disease-specific instruments to use in clinical practice and research should be made considering the specific aims, settings, patients characteristics, and knowledge of the different performance of the instruments by users. IMPACT: No study has described and compared generic and specific self-care measures in patients affected by MCCs. Knowing these differences can help nurses choose the most suitable measure for their aims, context, and patients and plan generic and disease-specific self-care educational interventions for those behaviours in which MCCs patients perform poorly. PATIENT CONTRIBUTION: Patients were informed about the study, provided informed consent, and answered questionnaires through interviews.

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.

Validating and Establishing a Diagnostic Threshold for the Hypoglycemia Awareness Questionnaire Impaired Awareness Subscale.

OBJECTIVE: To evaluate the discriminant and convergent validities of the Hypoglycemia Awareness Questionnaire Impaired Awareness (HypoA-Q IA) subscale and establish a diagnostic threshold for the classification of impaired awareness of hypoglycemia (IAH) in adults with type 1 diabetes (T1D). METHODS: Twenty-one adults with T1D (male, 48%; median age, 36 years; and T1D duration, 21 years) completed the HypoA-Q IA subscale, Clarke, and hypoglycemia severity (HYPO) scores, continuous glucose monitoring, and hyperinsulinemic hypoglycemic clamp testing. Those with IAH defined by a Clarke score of ≥4 (n = 10) and who experienced severely problematic hypoglycemia and/or marked glycemic lability started automated insulin delivery as part of an 18-month intervention study with the 6-monthly paired assessment of the HypoA-Q IA subscale, Clarke score, HYPO score and continuous glucose monitoring, and hypoglycemic clamp testing at baseline and 6 and 18 months. RESULTS: The HypoA-Q IA subscale discriminated between those with and without IAH defined by the Clarke score (W = 110.5; P <.001). During intervention, the HypoA-Q IA subscale demonstrated convergent validity via significant relationships with the Clarke (r = 0.72; P <.001) and HYPO (r = 0.60; P <.001) scores; hypoglycemia exposure below 70 (r = 0.53; P <.01), 60 (r = 0.50; P <.01), and 54 (r = 0.48; P <.01) mg/dL; and autonomic symptom (r = -0.53; P <.05), epinephrine (r = -0.68; P <.001), and pancreatic polypeptide (r = -0.52; P <.05) responses to insulin-induced hypoglycemia. The receiver operating characteristic curve analysis revealed that the HypoA-Q IA subscale was an excellent predictor of an abnormal symptom response to insulin-induced hypoglycemia (area under the curve, 0.86) with a score of 12, which was the optimal threshold for IAH classification (sensitivity, 83%; specificity, 80%). CONCLUSION: These findings support the validity of the HypoA-Q IA subscale and propose a HypoA-Q IA diagnostic threshold to identify IAH in both clinical and research settings.

The influence of social support on self-care is mediated by self-efficacy and depression in chronic illness: key findings from the 'SODALITY' observational study.

Objectives: Family is a major source of support for older chronically-ill patients and known to be associated with better self-care. Depression and self-care self-efficacy are associated with healthy behaviors and thus may serve as mechanisms by which family support influences self-care.We explored depression and self-care self-efficacy as mediators of the relationship between perceived family support and self-care.Methods: Five hundred forty-one older adults with multiple chronic illnesses were recruited from outpatients and community settings. Three structural equation models (SEM) were fit on cross-sectional data. We measured perceived family support (subscale of the Multidimensional Scale of Perceived Social Support, scores range 1-7), depression (Patient Health Questionnaire, scores range 0-27), selfcare self-efficacy (Self-Care Self Efficacy Scale, standardized scores range 0-100), and self-care maintenance, monitoring, and management (Self-care of Chronic Illness Inventory, standardized scores range 0-100).Results: Participants (mean age = 76.6±7.3 yrs) were predominantly females (55.6%). In the full sample, depression and self-care self-efficacy mediated the relationship between perceived family support and self-care; in the gender-stratified SEM, men's depression was no longer a significant mediator. Depression and self-care self-efficacy were significant mediators of the relation between perceived family support and self-care.Conclusion: In older chronically-ill patients, interventions addressing perceived family support may facilitate a rapid improvement in self-care self-efficacy and a decrease in depressive symptoms, particularly among women.

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.

A Mixed-Methods Study of Social Determinants and Self-care in Adults With Heart Failure.

BACKGROUND: The burden of heart failure (HF) is unequally distributed among population groups. Few study authors have described social determinants of health (SDoH) enabling/impeding self-care. AIM: The aim of this study was to explore the relationship between SDoH and self-care in patients with HF. METHODS: Using a convergent mixed-methods design, we assessed SDoH and self-care in 104 patients with HF using the Protocol for Responding to and Assessing Patients' Assets, Risks, and Experiences (PRAPARE) and the Self-Care of HF Index v7.2 with self-care maintenance, symptom perception, and self-care management scales. Multiple regression was used to assess the relationship between SDoH and self-care. One-on-one in-depth interviews were conducted in patients with poor (standardized score ≤ 60, n = 17) or excellent (standardized score ≥ 80, n = 20) self-care maintenance. Quantitative and qualitative results were integrated. RESULTS: Participants were predominantly male (57.7%), with a mean age of 62.4 ± 11.6 years, with health insurance (91.4%) and some college education (62%). Half were White (50%), many were married (43%), and most reported adequate income (53%). The money and resources core domain of PRAPARE significantly predicted self-care maintenance ( P = .019), and symptom perception ( P = .049) trended significantly after adjusting for other PRAPARE core domains (personal characteristics, family and home, and social and emotional health) and comorbidity. Participants discussed social connectedness, health insurance coverage, individual upbringing, and personal experiences as facilitators of self-care behavior. CONCLUSION: Several SDoH influence HF self-care. Patient-specific interventions that address the broader effects of these factors may promote self-care in patients with HF.

The Influence of Caregiver Contribution to Self-care on Symptom Burden in Patients With Heart Failure and the Mediating Role of Patient Self-care: A Longitudinal Mediation Analysis.

BACKGROUND: Patients with heart failure experience high symptom burden, which can be mitigated with adequate self-care. Caregiver contribution to self-care has been theorized to improve patient symptom burden. The mediating role of patient self-care in this relationship has not been tested yet. OBJECTIVES: The aim of this study was to test whether (a) caregiver contribution to self-care influences patient self-care, (b) patient self-care influences symptom burden, and (c) patient self-care mediates the relationship between caregiver contribution to self-care and symptom burden. METHODS: In this study, the authors conducted a secondary analysis of the baseline and 3-month data from the MOTIVATE-HF trial, which enrolled 510 dyads (patient with heart failure and caregiver) in Italy. Multigroup confirmatory factor analysis was used to test measurement invariance. Autoregressive longitudinal path analysis with contemporaneous mediation was used to test our hypotheses. RESULTS: On average, caregivers were 54 years old and mainly female, whereas patients were 72.4 years old and mainly male. Better caregiver contribution to self-care maintenance was associated with better patient self-care maintenance (ß = 0.280, P < .001), which, in turn, was associated with lower symptom burden (ß = -0.280, P < .001). Patient self-care maintenance mediated the effect of caregiver contribution to self-care maintenance on symptom burden (ß = -0.079; 95% bias-corrected bootstrapped confidence interval, -0.130 to -0.043). Better caregiver contribution to self-care management was associated with better patient self-care management (ß = 0.238, P = .006). The model significantly accounted for 37% of the total variance in symptom burden scores (P < .001). CONCLUSIONS: This study expands the situation-specific theory of caregiver contribution to heart failure self-care and provides new evidence on the role of caregiver contribution to self-care and patient self-care on symptom burden in heart failure.

The Association Between Self-reported Sleep Quality and Self-care in Adults With Heart Failure: A Cross-sectional Study.

BACKGROUND: Sleep disturbance is one of the most common symptoms among patients with heart failure (HF), and it may affect the ability of patients to perform self-care. There is a lack of evidence on the association between sleep quality and its components and self-care in adults with HF. OBJECTIVE: The aim of this study was to evaluate the association between sleep quality and its components and self-care in adults with HF. METHODS: This study is a secondary analysis of baseline data from the MOTIVATE-HF study, a randomized controlled trial on patients with HF and their caregivers. Only patients' data were analyzed in this study (n = 498). Sleep quality and self-care were evaluated with the Pittsburgh Sleep Quality Index and the Self-Care of Heart Failure Index v6.2, respectively. RESULTS: A habitual sleep efficiency of 75% to 84% was associated with lower self-care maintenance compared with a habitual sleep efficiency of 85% or greater ( P = .031), as was taking sleep medications once or twice a week compared with less than once a week ( P = .001). A frequency of daytime dysfunction less than once a week was associated with lower self-care management compared with a frequency of daytime dysfunction of 3 or more times a week ( P = .025). Taking sleep medications less than once a week was associated with lower self-care confidence compared with taking sleep medications 3 or more times a week ( P = .018). CONCLUSION: Poor sleep quality is frequently reported by patients with HF. Sleep efficiency, sleep medications, and daytime dysfunction may influence self-care more than the other sleep quality components.

The Impact of an Intervention to Improve Caregiver Contribution to Heart Failure Self-care on Caregiver Anxiety, Depression, Quality of Life, and Sleep.

BACKGROUND: Better caregiver contribution to self-care in heart failure is associated with better patient outcomes. However, caregiver contribution to self-care is also associated with high anxiety and depression, poor quality of life, and poor sleep in caregivers. It is still unclear whether interventions that encourage caregivers to contribute more to patient self-care might increase caregivers' anxiety and depression and decrease their quality of life and sleep. OBJECTIVE: The aim of this study was to assess the impact of a motivational interview intervention aimed at improving caregiver contribution to self-care in heart failure on caregivers' anxiety, depression, quality of life, and sleep. METHODS: This is a secondary outcome analysis of the MOTIVATE-HF trial. Patients with heart failure and their caregivers were randomized into arm 1 (motivational interview to patients), arm 2 (motivational interview to patients and caregivers), and arm 3 (standard care). Data were collected between June 2014 and October 2018. The article has been prepared following the Consolidated Standards of Reporting Trials checklist. RESULTS: A sample of 510 patient-caregiver dyads was enrolled. Over the year of the study, the levels of anxiety, depression, quality of life, and sleep in caregivers did not significantly change among the 3 arms. CONCLUSIONS: Motivational interview aimed at improving caregiver contribution to self-care does not seem to increase caregiver anxiety and depression, nor decrease their quality of life and sleep. Thus, such an intervention might be safely delivered to caregivers of patients with heart failure, although further studies are needed to confirm our findings.

Remote motivational interviewing to improve patient self-care and caregiver contribution to self-care in heart failure (REMOTIVATE-HF): Rationale, design, and methodology for a multicentre randomized controlled trial.

In patients with heart failure (HF), self-care, and caregiver contribution to self-care (i.e., the daily management of the disease by patients and caregivers) are essential for improving patient outcomes. However, patients and caregivers are often inadequate in their self-care and contribution to self-care, respectively, and struggle to perform related tasks. Face-to-face motivational interviewing (MI) effectively improves self-care and caregiver contribution to self-care, but the evidence on remote MI is scarce and inconclusive. The aims of this randomized controlled trial will be to evaluate whether remote MI performed via video call in patients with HF: (1) is effective at improving self-care maintenance in patients (primary outcome); (2) is effective for the following secondary outcomes: (a) for patients: self-care management, self-care monitoring, and self-efficacy; HF symptoms; generic and disease-specific quality of life; anxiety and depression; use of healthcare services; and mortality; and (b) for caregivers: contribution to self-care, self-efficacy, and preparedness. We will conduct a two-arm randomized controlled trial. We will enroll and randomize 432 dyads (patients and their informal caregivers) in Arm 1, in which patients and caregivers will receive MI or, in Arm 2, standard care. MI will be delivered seven times over 12 months. Outcomes will be assessed at baseline and 3 (primary outcome), 6, 9, and 12 months from enrollment. This trial will demonstrate whether an inexpensive and easily deliverable intervention can improve important HF outcomes. With the restrictions on in-person healthcare professional interventions imposed by the COVID-19 pandemic, it is essential to evaluate whether MI is also effective remotely.

Further Evidence of Psychometric Performance of the Self-care of Diabetes Inventory in Adults With Type 1 and Type 2 Diabetes.

BACKGROUND: The Self-care of Diabetes Inventory (SCODI) is a theory-based tool that measures self-care, a key strategy in the appropriate treatment of diabetes. However, despite the clinical differences between people with Type 1 Diabetes Mellitus (T1DM) and Type 2 Diabetes Mellitus (T2DM), the psychometric properties of the SCODI were only tested in mixed samples. PURPOSE: This study aims to test the psychometric performances of the SCODI in two separate groups of adults with T1DM and T2DM. METHODS: This is a secondary analysis from two previous multicentre cross-sectional observational studies involving patients with T1DM (n = 181) and T2DM (n = 540). We tested dimensionality with confirmatory factor analysis and reliability with a multidimensional model-based coefficient for every scale of the SCODI: self-care maintenance, self-care monitoring, self-care management, and self-care self-efficacy. RESULTS: We found that the SCODI showed the same dimensionality, with minimal variation in factor loadings for each factor and each scale among T1DM and T2DM groups. High reliability for each scale in both groups was also found (self-care maintenance: T1DM = 0.86, T2DM = 0.83; self-care monitoring: T1DM = 0.84, T2DM = 1.00; self-care management: T1DM = 0.87, T2DM = 0.86; self-care self-efficacy: T1DM = 0.88; T2DM = 0.86). CONCLUSION: The SCODI can be used for measuring self-care in people with T1DM, T2DM, or mixed groups using identical scoring procedures. Considering the well-known differences between Type 1 and Type 2 diabetes diseases and patients' characteristics, our results support the generalizability of the self-care theory on which the instrument is based.

Patient Self-Care and Caregiver Contribution to Patient Self-Care of Chronic Conditions: What Is Dyadic and What It Is Not.

OBJECTIVES: Self-care of chronic conditions involves both patients and their informal caregivers and therefore might be considered as a dyadic phenomenon. Nevertheless, empirical evidence supporting a dyadic construct is unavailable. This study aimed to explore the existence of a dyadic construct in self-care maintenance, monitoring, and management in patients affected by chronic conditions and their informal caregivers. METHODS: This study used a cross-sectional design. We used the Self-Care of Chronic Illness Inventory and the Caregiver Contribution to Self-Care of Chronic Illness Inventory, which measure patient self-care and informal caregivers' contribution to self-care maintenance, monitoring and management. Exploratory Structural Equation Modeling was performed to verify the existence of dyadic latent constructs in each scale in patients and informal caregivers. RESULTS: A convenience sample of 493 patients and informal caregivers, with a mean age of 76.47 and 52.76 years, respectively, was studied. In the self-care maintenance scales, 2 correlated factors (r = 0.34, P < .001) were identified, indicating the presence of a dyadic second-order construct. In addition, 2 factors that were not correlated (r = 0.11, P = .064) were identified in the self-care monitoring scales, indicating the absence of a dyadic construct. Finally, we found a 3-factor model in the self-care management scales composed of both patient and caregiver items, indicating a dyadic first-order construct. CONCLUSIONS: Knowing which care behaviors are dyadic in chronic conditions is important for tailoring interventions to improve self-care. Self-care maintenance and management would benefit from dyadic interventions, while self-care monitoring would not. The results of this study may illuminate future theoretical and scientific developments in dyadic care of chronic illness.

Development and testing of an instrument to measure contextual factors influencing self-care decisions among adults with chronic illness.

BACKGROUND: Decisions about how to manage bothersome symptoms of chronic illness are complex and influenced by factors related to the patient, their illness, and their environment. Naturalistic decision-making describes decision-making when conditions are dynamically evolving, and the decision maker may be uncertain because the situation is ambiguous and missing information. Contextual factors, including time stress, the perception of high stakes, and input from others may facilitate or complicate decisions about the self-care of symptoms. There is no valid instrument to measure these contextual factors. The purpose of this study was to develop and test a self-report instrument measuring the contextual factors that influence self-care decisions about symptoms. METHODS: Items were drafted from the literature and refined with patient input. Content validity of the instrument was evaluated using a Delphi survey of expert clinicians and researchers, and cognitive interviews with adults with chronic illness. Psychometric testing included exploratory factor analysis to test dimensionality, item response theory-based approaches for item recalibration, confirmatory factor analysis to generate factor determinacy scores, and evaluation of construct validity. RESULTS: Ten contextual factors influencing decision-making were identified and multiple items per factor were generated. Items were refined based on cognitive interviews with five adults with chronic illness. After a two round Delphi survey of expert clinicians (n = 12) all items had a content validity index of > 0.78. Five additional adults with chronic illness endorsed the relevance, comprehensiveness, and comprehensibility of the inventory during cognitive interviews. Initial psychometric testing (n = 431) revealed a 6-factor multidimensional structure that was further refined for precision, and high multidimensional reliability (0.864). In construct validity testing, there were modest associations with some scales of the Melbourne Decision Making Questionnaire and the Self-Care of Chronic Illness Inventory. CONCLUSION: The Self-Care Decisions Inventory is a 27-item self-report instrument that measures the extent to which contextual factors influence decisions about symptoms of chronic illness. The six scales (external, urgency, uncertainty, cognitive/affective, waiting/cue competition, and concealment) reflect naturalistic decision making, have excellent content validity, and demonstrate high multidimensional reliability. Additional testing of the instrument is needed to evaluate clinical utility.

Measuring self-care in the general adult population: development and psychometric testing of the Self-Care Inventory.

BACKGROUND: Self-care is important at all stages of life and health status to promote well-being, prevent disease, and improve health outcomes. Currently, there is a need to better conceptualize self-care in the general adult population and provide an instrument to measure self-care in this group. Therefore, the aim of this study was to develop and evaluate the Self-Care Inventory (SCI), a theory-based instrument to measure self-care in the general adult population. METHODS: Based on the Middle Range Theory of Self-Care, the 20-item SCI was developed with three scales: Self-Care Maintenance (8 items), Self-Care Monitoring (6 items), and Self-Care Management (6 items). A cross sectional study with a US-based sample (n = 294) was conducted to test the SCI. Internal validity was assessed with Confirmatory Factor Analysis. Internal consistency reliability was assessed with Cronbach alpha for unidimensional scales or composite reliability and the global reliability index for multidimensional scales. Construct validity was investigated with Pearson correlation to test the relationship between general self-efficacy, positivity, stress, and self-care scores. RESULTS: The Self-Care Maintenance and Management scales were multidimensional and the Self-Care Monitoring scale was unidimensional. The global reliability index for multidimensional scales was 0.85 (self-care maintenance) and 0.88 (self-care management). Cronbach alpha coefficient of the self-care monitoring scale was 0.88. Test-retest reliability was 0.81 (self-care maintenance), 0.91 (self-care monitoring), and 0.76 (self-care management). The General Self-Efficacy Scale was positively related to all three self-care scale scores: self-care maintenance r = 0.46, p < 0. 001, self-care monitoring r = 0.31, p < 0. 001, and self-care management r = 0.32, p < 0. 001. The positivity score was positively related to self-care maintenance (r = 0.42, p < 0. 001), self-care monitoring (r = 0.29, p < 0. 001), and self-care management (r = 0.34, p < 0. 001) scores. The perceived stress was positively related to the self-care management (r = 0.20, p < 0. 001) score. CONCLUSIONS: The SCI is a theoretically based instrument designed to measure self-care in the general adult population. Preliminary evidence of validity and reliability supports its use in the general adult population.

Resilience and Depressive Symptoms in Adults With Cardiac Disease: A Systematic Review.

BACKGROUND: Depressive symptoms predict hospitalization and mortality in adults with cardiac disease. Resilience, defined as a dynamic process of positively responding to adversity, could protect against depressive symptoms in cardiac disease. No systematic review has been conducted on the relationship between these variables in this population. OBJECTIVE: The aim of this review was to explore the association between psychological resilience and depressive symptoms in adults with cardiac disease. METHODS: Seven databases (PubMed, EMBASE, CINAHL, PsycInfo, Web of Science, SCOPUS, and Cochrane) were searched from inception to December 2019 using the search terms "cardiac disease," "depressive symptoms," "depression," and "resilience." Inclusion criteria dictated that studies reported original research on the association between resilience and depressive symptoms in adults with a cardiac disease broadly defined. Quality ratings were performed by 2 independent raters. RESULTS: We identified 13 studies for final review. Study sample sizes ranged from 30 to 1022 participants, average age ranged from 52 to 72 years, and all studies had majority male participants (64%-100%). Resilience and depressive symptoms were inversely related in 10 of 13 studies. The 3 studies with poor-quality sampling techniques or significant loss to follow-up found no relationship. CONCLUSIONS: Resilience seems to protect against depression in adults with cardiac disease. Gaps in the literature include poor understanding of the direction of causality. Methods of promoting resilience need to be identified and studied.