Symptom characteristics, perceived causal attributions, and contextual factors influencing self-care behaviors: An ecological daily assessment study of adults with chronic illness.

OBJECTIVE: Insights into how symptoms influence self-care can guide patient education and improve symptom control. This study examined symptom characteristics, causal attributions, and contextual factors influencing self-care of adults with arthritis, asthma, chronic obstructive pulmonary disease, diabetes, or heart failure. METHODS: Adults (n = 81) with a symptomatic chronic illness participated in a longitudinal observational study. Using Ecological Daily Assessment, participants described one symptom twice daily for two weeks, rating its frequency, severity, bothersomeness, duration, causes, and self-care. RESULTS: The most frequent symptoms were fatigue and shortness of breath. Pain, fatigue, and joint stiffness were the most severe and bothersome. Most participants engaged in active self-care, but those with fatigue and pain engaged in passive self-care (i.e., rest or do nothing), especially when symptoms were infrequent, mild, somewhat bothersome, and fleeting. In people using passive self-care, thoughts, feelings, and the desire to conceal symptoms from others interfered with self-care. CONCLUSION: Most adults with a chronic illness take an active role in managing their symptoms but some conceal or ignore symptoms until the frequency, severity, bothersomeness, or duration increases. PRACTICE IMPLICATIONS: When patients report symptoms, asking about self-care behaviors may reveal inaction or ineffective approaches. A discussion of active self-care options may improve symptom control.

The role of generalized linear models in handling cost and count data.

Scientists from nursing and allied health disciplines frequently examine data with complex distributions. Key examples include data on cost that typically are skewed, and count data like the number of hospitalizations that regularly have greater variation than expected and a majority of observations at zero. Common approaches to handling complex data involve transformations that can interfere with interpretation, or force-fitting of data into linear or logistic regression. In this article, worked examples of generalized linear models, which allow for flexibility in the distribution of data, involving cost and count outcomes, are presented to help expose researchers to their nuances.

Ex Ante Economic Evaluation of Arg389 Genetically Targeted Treatment with Bucindolol versus Empirical Treatment with Carvedilol in NYHA III/IV Heart Failure.

OBJECTIVE: The Beta-Blocker Evaluation Survival Trial showed no survival benefit for bucindolol in New York Heart Association (NYHA) class III/IV heart failure (HF) with reduced ejection fraction, but subanalyses suggested survival benefits for non-Black subjects and Arg389 homozygotes. We conducted an ex ante economic evaluation of Arg389 targeted treatment with bucindolol versus carvidolol, complementing a previous ex ante economic evaluation of bucindolol preceded by genetic testing for the Arg389 polymorphism, in which genetic testing prevailed economically over no testing. METHODS: A decision tree analysis with an 18-month time horizon was performed to estimate the cost effectiveness/cost utility of trajectories of 100%, 50%, and 0% of patients genetically tested for Arg389 and comparing bucindolol with empirical carvedilol treatment as per prior BEST subanalyses. Incremental cost-effectiveness/cost-utility ratios (ICERs/ICURs) were estimated. RESULTS: Race-based analyses for non-White subjects at 100% testing showed a loss of (0.04) life-years and (0.03) quality-adjusted life-years (QALYs) at an incremental cost of $2185, yielding a negative ICER of ($54,625)/life-year and ICUR of ($72,833)/QALY lost; at 50%, the analyses showed a loss of (0.27) life-years and (0.16) QALYs at an incremental cost of $1843, yielding a negative ICER of ($6826)/life-year and ICUR of ($11,519)/QALY lost; at 0%, the analyses showed a loss of (0.33) life-years and (0.30) QALYs at an incremental cost of $1459, yielding a negative ICER of ($4421)/life-year and ICUR of ($4863)/QALY lost. Arg389 homozygote analyses at 100% testing showed incremental gains of 0.02 life-years and 0.02 QALYs at an incremental cost of $378, yielding an ICER of 18,900/life-year and ICUR of $18,900/QALY gained; at 50%, the analyses showed a loss of (0.24) life-years and (0.09) QALYs at an incremental cost of $1039, yielding a negative ICER of ($4329)/life-year and ICUR of ($9336)/QALY lost; at 0%, the analyses showed a loss of (0.33) life-years and (0.30) QALYs at an incremental cost of $1459, yielding a negative ICER of ($4421)/life-year and ICUR of ($4863)/QALY lost. CONCLUSION: This independent ex ante economic evaluation suggests that genetically targeted treatment with bucindolol is unlikely to yield clinicoeconomic benefits over empirical treatment with carvedilol in NYHA III/IV HF.

Role of Spirituality on the Association Between Depression and Quality of Life in Stroke Survivor-Care Partner Dyads.

BACKGROUND: Little is known about the protective effect of spirituality on the association between known risk factors such as depression and quality of life (QOL) in stroke survivor-care partner dyads. Therefore, the aim of this study was to evaluate the moderating role of spirituality on the association between depressive symptomatology and QOL in stroke survivor-care partner dyads. METHODS AND RESULTS: Longitudinal design with 223 stroke survivor-care partner dyads enrolled at survivor discharge from rehabilitation hospitals. Data collection was performed over 12 months. We measured survivors' and care partners' depression, quality of life, and spirituality. Examining the moderating role of spirituality on the association between depressive symptoms and QOL within survivor-care partner dyads, we used a traditional Actor-Partner-Interdependence Model and a basic Actor-Partner-Interdependence Model moderation model for a mixed variable. Survivors (51% male) and care partners (66% female) were 70.7 and 52.3 years old, respectively. The survivor's spirituality significantly moderated the association between care partner depressive symptomatology and survivor psychological QOL (B=0.03, P<0.05) and moderated the association between care partner depressive symptoms and care partner physical (B=0.05, P<0.001) and psychological (B=0.04, P<0.001) QOL. The care partner's own level of spirituality was significantly positively associated with their physical QOL (B=0.28, P<0.001). CONCLUSIONS: The findings from this study have broad implications for the role of spirituality in relation to QOL in medical-health contexts and the importance of examining such concepts within a dyadic framework. Greater awareness of the importance of spirituality among clinicians and nurses may improve cultural competence in healthcare services.

Care Values in Dementia: Patterns of Perception and Incongruence Among Family Care Dyads.

BACKGROUND AND OBJECTIVES: Persons with dementia (PWDs) often place greater importance on their care values (i.e., maintaining autonomy and social relations, choosing caregivers, avoiding being a burden) than family caregivers (CGs) perceive, which can detract from dementia care planning (e.g., care arrangements or surrogate decisions). Notable variability has been found across family care dyads (PWD and CG) in their perceptions of care values, suggesting that there may be multiple patterns of perception. The purpose of this study was to characterize distinct patterns of perception of care values in family care dyads. DESIGN AND METHODS: Using cross-sectional data from 228 community-dwelling family care dyads, we quantified dyads' average perceptions and incongruence in perceptions of the importance of everyday care values using multilevel modeling. These scores were then used in a latent class analysis to identify distinct patterns of perception, with the dyad as the unit of analysis. RESULTS: Two distinct patterns of care value perception were identified. 25% of dyads were labeled as "CG underestimating" due to lower average estimations of the importance of PWDs' care values, and a significant amount of dyadic incongruence. Underestimating dyads were characterized by a confirmed diagnosis of dementia, lower cognitive function, and younger age in PWDs, and higher relationship strain in the dyad. IMPLICATIONS: Care dyads that fall into an underestimating pattern may be at greater risk for inadequate dementia care planning. Interventions to improve care planning in this higher-risk group may include care values identification with the PWD, strategies for alleviating relationship strain, early-stage planning, and disease education.

Quality of Life Trajectories Among Stroke Survivors and the Related Changes in Caregiver Outcomes: A Growth Mixture Study.

OBJECTIVES: To identify the distinct quality of life (QOL) trajectories among stroke survivors, and to evaluate the associations with their caregivers' burden, anxiety, and depression. DESIGN: This was a longitudinal dyadic study. SETTINGS: Stroke survivors and their informal caregivers were enrolled upon discharge from several rehabilitation hospitals, and they were followed during this multisite longitudinal study. PARTICIPANTS: The stroke survivors (N=405, mean age=70.7y) included older adult men (52.0%), most of whom (80.9%) had had ischemic strokes. The caregivers (n=244, mean age=52.7y) included mostly women (65.2%), most of whom were the survivors' children (50.0%) or spouses (36.1%). INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Latent growth mixture modeling was used to identify the distinct QOL trajectories among the stroke survivors over the course of 12 months of recovery. The longitudinal associations between the stroke survivor QOL trajectories and the caregivers' burden, anxiety, and depression were evaluated. A multinomial regression was then used to identify the predictors of the various survivor QOL trajectories. RESULTS: Three distinct survivor QOL trajectories were identified: high and slightly improving QOL, moderate and slightly worsening QOL, and markedly improving QOL. The caregivers' burden, anxiety, and depression mirrored the survivors' QOL trajectories. In the multinomial models, an older survivor age, hemorrhagic stroke, lower education, and coexisting chronic obstructive pulmonary disease or thyroid disease were significantly associated with a moderate and slightly worsening QOL trajectory. Women and blindness were associated with a markedly improving QOL survivor trajectory. CONCLUSIONS: A survivor's QOL trajectory after a stroke was associated with their caregiver's burden, anxiety, and depression. Those survivors belonging to the moderate and slightly worsening QOL trajectory and their caregivers, in particular, need special care, because they are at risk for the worst outcomes.

Incongruent perceptions of the care values of hospitalized persons with dementia: a pilot study of patient-family caregiver dyads.

OBJECTIVE: Many difficult decisions are made in the inpatient hospital setting regarding the daily care of persons with dementia (PWDs). Incongruent perceptions of the PWD's care values limit the family caregiver's ability to make surrogate decisions. The objectives of this pilot study were to describe and identify determinants of incongruent perceptions in the hospital setting. METHODS: Using multilevel modeling (MLM), we examined cross-sectional data collected from 42 PWD-family caregiver dyads. RESULTS: There was a significant amount of incongruence, on average, for all four subscales representing the PWD's care values: autonomy = -0.33 (p < .001); burden = -.49 (p < .001); safety/quality of care = -.26 (p < .001); and social interactions = -.21 (p = .004). Family caregivers (CG) rated the importance of care values to the PWD as lower than the PWD rated the importance. Determinants of greater incongruence included higher relationship strain and fewer positive dyadic interactions. CONCLUSION: Our findings reveal significant levels of incongruence in perceptions of the PWD's values among dementia care dyads in the hospital setting. Our analysis suggests a potential impact of relationship variables on incongruence. Further research is needed around this overlooked interpersonal context for supporting the dementia care dyad in the hospital setting.

Patient-Reported Barriers to the Prekidney Transplant Evaluation in an At-Risk Population in the United States.

BACKGROUND: Despite our knowledge of barriers to the early stages of the transplant process, we have limited insight into patient-reported barriers to the prekidney transplant medical evaluation in populations largely at-risk for evaluation failure. METHODS: One-hundred consecutive adults were enrolled at an urban, Midwestern transplant center. Demographic, clinical, and quality of life data were collected prior to patients visit with a transplant surgeon/nephrologist (evaluation begins). Patient-reported barriers to evaluation completion were collected using the Subjective Barriers Questionnaire 90-days after the initial medical evaluation appointment (evaluation ends), our center targeted goal for transplant work-up completion. RESULTS: At 90 days, 40% of participants had not completed the transplant evaluation. Five barrier categories were created from the 85 responses to the Subjective Barriers Questionnaire. Patient-reported barriers included poor communication, physical health, socioeconomics, psychosocial influences, and access to care. In addition, determinants for successful evaluation completion included being of white race, higher income, free of dialysis, a lower comorbid burden, and reporting higher scores on the Kidney Disease Quality of Life subscale role-emotional. CONCLUSION: Poor communication between patients and providers, and among providers, was the most prominent patient-reported barrier identified. Barriers were more prominent in marginalized groups such as ethnic minorities and people with low income. Understanding the prevalence of patient-reported barriers may aid in the development of patient-centered interventions to improve completion rates.

Caregiver Well-being and Patient Outcomes in Heart Failure: A Meta-analysis.

BACKGROUND: Despite evidence from the broader caregiving literature about the interdependent nature of the caregiving dyad, few studies in heart failure (HF) have examined associations between caregiver and patient characteristics. OBJECTIVE: The aim of this study is to quantitatively synthesize the relationships between caregiver well-being and patient outcomes. METHODS: The MEDLINE, PsycINFO, and CINAHL databases were searched for studies of adult HF patients and informal caregivers that tested the relationship between caregiver well-being (perceived strain and psychological distress) and patient outcomes of interest. Summary effects across studies were estimated using random effects meta-analysis following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. RESULTS: A total of 15 articles meeting inclusion criteria were included in the meta-analysis. Taking into account differences across studies, higher caregiver strain was associated significantly with greater patient symptoms (Fisher z = 0.22, P < .001) and higher caregiver strain was associated significantly with lower patient quality of life (Fisher z = -0.36, P < .001). Relationships between caregiver psychological distress and both patient symptoms and quality of life were not significant. Although individual studies largely found significant relationships between worse caregiver well-being and higher patient clinical event-risk, these studies were not amenable to meta-analysis because of substantial variation in event-risk measures. CONCLUSIONS: Clinical management and research approaches that acknowledge the interdependent nature of the caregiving dyad hold great potential to benefit both patients and caregivers.

Comorbidity profiles and inpatient outcomes during hospitalization for heart failure: an analysis of the U.S. Nationwide inpatient sample.

BACKGROUND: Treatment of heart failure (HF) is particularly complex in the presence of comorbidities. We sought to identify and associate comorbidity profiles with inpatient outcomes during HF hospitalizations. METHODS: Latent mixture modeling was used to identify common profiles of comorbidities during adult hospitalizations for HF from the 2009 Nationwide Inpatient Sample (n = 192,327). RESULTS: Most discharges were characterized by "common" comorbidities. A "lifestyle" profile was characterized by a high prevalence of uncomplicated diabetes, hypertension, chronic pulmonary disorders and obesity. A "renal" profile had the highest prevalence of renal disease, complicated diabetes, and fluid and electrolyte imbalances. A "neurovascular" profile represented the highest prevalence of cerebrovascular disease, paralysis, myocardial infarction and peripheral vascular disease. Relative to the common profile, the lifestyle profile was associated with a 15% longer length of stay (LOS) and 12% greater cost, the renal profile was associated with a 30% higher risk of death, 27% longer LOS and 24% greater cost, and the neurovascular profile was associated with a 45% higher risk of death, 34% longer LOS and 37% greater cost (all p < 0.001). CONCLUSIONS: Comorbidity profiles are helpful in identifying adults at higher risk of death, longer length of stay, and accumulating greater costs during hospitalizations for HF.

Kidney transplant and the digital divide: is information and communication technology a barrier or a bridge to transplant for African Americans?

CONTEXT: Barriers to kidney transplant for African Americans are well documented in the literature. Little information on ownership of information and communication technology and use of such technology in transplant populations has been published. OBJECTIVE: To characterize racial differences related to ownership and use of information and communication technology in kidney transplant patients. DESIGN: A single-center, cross-sectional survey study. SETTING: An urban Midwestern transplant center. PARTICIPANTS: 78 pretransplant patients and 177 transplant recipients. MAIN OUTCOMES MEASURES: The survey consisted of 6 demographic questions, 3 disease-related questions, and 9 technology-related questions. Dichotomous (yes/no) and Likert-scale items were the basis for the survey. RESULTS: Cell phone use was high and comparable between groups (94% in African Americans, 90% in whites, P= .22). A vast majority (75% of African Americans and 74% of whites) reported being "comfortable" sending and receiving text messages. Computer ownership (94.3% vs 79.3%) and Internet access (97.7% vs 80.7%) were greater among whites than African Americans (both P< .01). Fewer African Americans were frequent users of the Internet (27.1% vs 56.3%) and e-mail (61.6% vs 79.3%) than whites (both P<.01). More African Americans than whites preferred education in a classroom setting (77% vs 60%; P< .005) and educational DVDs (66% vs 46%; P< .002). CONCLUSION: The use of cell phone technology and text messaging was ubiquitous and comparable between groups, but computer and Internet access and frequency of use were not. Reaching out to the African American community may best be accomplished by using cell phone/text messaging as opposed to Internet-based platforms.

From novice to expert: confidence and activity status determine heart failure self-care performance.

BACKGROUND: In a previous, small, mixed-methods study, heart failure patients were described as novice, expert, or inconsistent in self-care. In that study, self-care types differed in experience, confidence, attitudes, and skill. OBJECTIVES: The aims of this study were to validate the novice-to-expert self-care typology and to identify determinants of the heart failure self-care types. METHODS: A cross-sectional descriptive study was performed using data from 689 adults with heart failure (61 ± 2.5 years; 36% female, 50% New York Heart Association class III). Two-step likelihood cluster analysis was used to classify patients into groups using all items in the maintenance and management scales of the Self-care of Heart Failure Index. Multinomial regression was used to identify the determinants of each self-care cluster, testing the influence of age, gender, left ventricular ejection fraction, body mass index, depression, anxiety, hostility, perceived control, social support, activity status (Duke Activity Status Index), and self-care confidence. RESULTS: Self-care behaviors clustered best into three types: novice (n = 185, 26.9%), expert (n = 229, 33.2%), and inconsistent (n = 275, 39.9%). The model predicting self-care cluster membership was significant (χ2 = 88.67, p < .001); Duke Activity Status Index score and Self-care of Heart Failure Index confidence score were the only significant individual factors. Higher activity status increased the odds that patients would be inconsistent (odds ratio [OR] = 1.02-1.09) or novice (OR = 1.02-1.10) in self-care. Higher self-care confidence increased the odds of being an expert (OR = 1.05-1.09) or inconsistent (OR = 1.01-1.05) in self-care. DISCUSSION: The three-level typology of heart failure self-care was confirmed. Patients who have fewer limitations to daily activities may not be driven adequately to engage in heart failure self-care and may need extra assistance in developing expertise.