Browsing by Subject "Chronic illness"

Now showing 1 - 4 of 4
  • Thumbnail Image
    Item
    Data collection challenges in community settings: Insights from two field studies of patients with chronic disease
    (Springer, 2015-05) Holden, Richard J.; McDougald Scott, Amanda M.; Hoonakker, Peter L.T.; Hundt, Ann S.; Carayon, Pascale; Department of Biohealth Informatics, School of Informatics and Computing
    Purpose Collecting information about health and disease directly from patients can be fruitfully accomplished using contextual approaches, ones that combine more and less structured methods in home and community settings. This paper's purpose is to describe and illustrate a framework of the challenges of contextual data collection. Methods A framework is presented based on prior work in community-based participatory research and organizational science, comprised of ten types of challenges across four broader categories. Illustrations of challenges and suggestions for addressing them are drawn from two mixed-method, contextual studies of patients with chronic disease in two regions of the US. Results The first major category of challenges was concerned with the researcher-participant partnership, for example, the initial lack of mutual trust and understanding between researchers, patients, and family members. The second category concerned patient characteristics such as cognitive limitations and a busy personal schedule that created barriers to successful data collection. The third concerned research logistics and procedures such as recruitment, travel distances, and compensation. The fourth concerned scientific quality and interpretation, including issues of validity, reliability, and combining data from multiple sources. The two illustrative studies faced both common and diverse research challenges and used many different strategies to address them. Conclusion Collecting less structured data from patients and others in the community is potentially very productive but requires the anticipation, avoidance, or negotiation of various challenges. Future work is necessary to better understand these challenges across different methods and settings, as well as to test and identify strategies to address them.
  • Thumbnail Image
    Item
    The Moderating Effect of Caregiver Engagement in Transitional Care Intervention Outcomes: A Meta-Analysis
    (Oxford University Press, 2021-12-17) Levoy, Kristin; Rivera, Eleanor; McHugh, Molly; Hanlon, Alexandra; Hirschman, Karen; Naylor, Mary; School of Nursing
    As chronically ill adults age, increased fluctuations in health status result in frequent care transitions. Caregiver engagement is often a core component of evidence-based transitional care interventions, yet little is known about the relative contribution of this element to observed outcomes. This meta-analysis aimed to synthesize evidence of caregiver engagement in randomized control trials (RCT’s) of transitional care interventions, estimate the overall intervention effects on all-cause hospital readmissions, and test caregiver engagement as a moderator of interventions’ effects. Relative risk was the effect size, and the overall effect was estimated using inverse variance weighting. Fifty-four studies met criteria, representing 31,399 participants and 65 effect sizes. The weighted sample mean age was 64 years. The majority (64%) of interventions targeted participants with specific diagnoses, such as heart disease, but more than half (54%) lacked caregiver engagement components. Among all reviewed studies of transitional care interventions, the overall effect on all-cause readmissions at 1 month was non-significant (p=.123, k=28). However, intervention effects at 2 or more months were significant (RR=0.89, 95% CI: 0.82, 0.97, p=.007, k=26), indicating a 12% reduction in the relative risk of all-cause readmissions among intervention participants compared to controls. Caregiver engagement was found to moderate intervention effects (p=.05). Specifically, interventions that included caregiver engagement produced more robust effects (RR=0.83, 95% CI: 0.75, 0.92, p=.001), than those without such engagement (RR=0.97, 95% CI: 0.87, 1.08, p=.550). Findings suggest that transitional care interventions need to more explicitly engage caregivers as active partners in order to optimize patient outcomes.
  • Thumbnail Image
    Item
    Physical Symptoms, Distress, and Functional Disability in Youth With Chronic Orthostatic Intolerance
    (Oxford University Press, 2022) Tsai Owens, Michele S.; Biggs, Bridget K.; Fahrenkamp, Amy C.; Geske, Jennifer; Hofschulte, Deanna R.; Harbeck-Weber, Cynthia; Fischer, Philip R.; Psychiatry, School of Medicine
    Objective: Youth with chronic orthostatic intolerance (OI) can experience significant physical, social, and academic functional debilitation. Previous studies have indicated associations among symptom severity, psychosocial factors, and functional disability. However, empirically tested models explaining how different medical and psychosocial factors may contribute to functional disability are lacking. The current cross-sectional study aimed to evaluate mediation, moderation, and additive models of the effect of physical symptoms and psychological distress on functional disability. Methods: One hundred and sixty-five youth (13-22 years old) undergoing medical evaluation of chronic OI symptoms completed measures of autonomic dysfunction symptom severity, depressive and anxiety symptoms, and functional disability. Models were evaluated using tests of indirect effects and linear and logistic regression analyses. Results: Results supported the mediation and additive effects models for depressive symptoms. Mediation, moderation, and additive models for hypothesized effects of anxiety symptoms were not supported. Conclusions: Results provide preliminary support for models in which OI symptoms affect functional debility via their effects on mood and in which depressive symptoms have unique and additive effects on functioning. Findings lay the foundation for longitudinal and experimental evaluation of biopsychosocial models of functional disability in youth with chronic OI and related conditions. Implications include the importance of a biopsychosocial conceptualization of OI symptoms and debility as a complex interplay of factors rather than as a purely physiological or psychological process.
  • Thumbnail Image
    Item
    Relationship satisfaction in adults with phenylketonuria is positively associated with following recommended treatment, having a partner involved in management, and maintaining good health
    (Springer, 2023) Sundstrom, Rachel; Wetherill, Leah; Sapp, Katie; McPheron, Molly; Lah, Melissa; Medical and Molecular Genetics, School of Medicine
    Rationale: Phenylketonuria (PKU) is a metabolic condition that requires treatment for life. There is increasing evidence that chronic illnesses put strain on relationships and marriages. However, no studies have examined the unique factors that metabolic conditions have on affected individuals and their relationship satisfaction. We surveyed a population of adult patients with PKU and assessed how management, treatment, and lifestyle factors impact their relationship satisfaction. Purpose: The purpose of our study was to explore whether factors such as involvement of partner in PKU management, impact of challenges unique to PKU (e.g., diet, family planning, mood disturbances), and PKU treatment types were associated with the degree of relationship satisfaction. Method: We surveyed adult patients with PKU (n = 82) who were either currently in or had previously been in a long-term relationship. We developed a 78-question survey that included unique questions regarding lifestyle, treatment, and management of their PKU in addition to a validated Relationship Assessment Score. Questions included single choice, multiple choice, and 3 open-ended questions. Results: We found that higher relationship satisfaction was associated with increased partner involvement, increased health, and adherence to recommended PKU treatments. Participants utilizing both diet and pharmaceutical treatment had the highest relationship satisfaction. Finally, participants who reported that their PKU did not contribute to the ending of a previous relationship reported higher relationship satisfaction scores. Conclusion: This study suggests that involvement of partners in the management and treatment of a chronic illness and adherence to recommended treatments can significantly improve relationship satisfaction.