Disease knowledge, perceived risk, and health behavior engagement among adolescents and adults with congenital heart disease

Jackson, Jamie L.; Tierney, Kelly; Daniels, Curt J.; Vannatta, Kathryn

doi:10.1016/j.hrtlng.2014.08.009

Cited by 38 publications

(26 citation statements)

References 35 publications

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“…Several factors may contribute to the identified differences between age groups. First, as participants age, their disease knowledge, including knowledge about future health risks as a consequence of having CHD, may improve 24 . Having a better understanding of the risks present may contribute to perceived stress and emotional distress, though this has yet to be empirically tested.…”

Section: Discussionmentioning

confidence: 99%

Perceptions of Disease-Related Stress

et al. 2017

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Background: Disease-related stressors for survivors of congenital heart disease (CHD) have been qualitatively described but not quantified nor examined in relationship to important patient-reported outcomes (PROs). Objective: The aims of this study are to (1) identify the types and degree of disease-related stress experienced by CHD survivors based on age, functional status, and sex, (2) examine differences in stress and PROs by age, functional status, and sex, and (3) determine the unique contribution of perceived stress to variability in PROs. Methods: A cross-sectional study of 173 adolescents and emerging and young adults who were recruited from both pediatric and adult CHD clinics was conducted. Participants rated the degree to which they found various aspects of CHD stressful and completed PROs of health-related quality of life and emotional distress. Differences in perceptions of stress across predictors were determined using analyses of variance and χ 2 analyses. The relative contribution of perceived stress predicting PROs was examined using stepwise linear regression. Results: Two items emerged as being stressful for almost half of the sample, including concerns about future health and having scars or other signs of medical procedures. Adolescents reported less perceived stress than emerging or young adults, and survivors with even mild functional limitations reported higher perceived stress than did those without any symptoms. Perceptions of stress significantly contributed to variability in PROs above and beyond other predictors and was the only variable to explain unique variance in emotional distress. Conclusions: Having even mild functional impairment may have significant deleterious consequences on PROs via increased perceptions of stress. Stress may be modifiable using cognitive behavioral therapy.

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Section: Discussionmentioning

confidence: 99%

Perceptions of Disease-Related Stress

et al. 2017

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“…However, we have previously published that similar educational programs sustained over a period of 4-6 months do, in fact, result in sustained improvements in heart disease risk profiles, a reduction in inflammatory burden, and cardiometabolic risk in racial/ethnic minority women. 6,20,42 In addition, others have demonstrated that awareness translates to action and poor health behaviors translate to physical health disorders, 44 pointing to the importance of awareness and knowledge as an important factor in the path to improved physical health. It is unclear as to what extent baseline knowledge predicted change in knowledge in our study, and whether the gains observed were, in part, attributable to lower baseline knowledge.…”

Section: Discussionmentioning

confidence: 99%

Outcomes of a Clinic-Based Educational Intervention for Cardiovascular Disease Prevention by Race, Ethnicity, and Urban/Rural Status

Villablanca

Lianov

Tancredi

2016

Journal of Women's Health

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Background and Purpose: Heart disease is the leading killer of women and remains poorly recognized in highrisk groups. We assessed baseline knowledge gaps and efficacy of a survey-based educational intervention. Methods: Four hundred seventy-two women in clinical settings completed pre-/post-surveys for knowledge of: heart disease as the leading killer, risk factors (general and personal levels), heart attack/stroke symptoms, and taking appropriate emergency action. They received a clinic-based educational intervention delivered by healthcare professionals in the course of their clinical care. Change score analyses tested pre-/post-differences in knowledge after the educational intervention, comparing proportions by race, ethnicity, and urban/nonurban status. Results: Knowledge and awareness was low in all groups, especially for American Indian women ( p < 0.05). Awareness was overall highest for heart disease as the leading killer, but it was the lowest for taking appropriate action (13% of Hispanic, 13% of American Indian, 29% of African American, and 18% of nonurban women; p < 0.05). For all women, knowledge of the major risk factors was low (58%) as was knowledge of their personal levels for risk factors (73% awareness for hypertension, 54% for cholesterol, and 50% for diabetes). The intervention was effective (% knowledge gain) in all groups of women, particularly for raising awareness of: (1) heart disease as the leading killer in American Indian (25%), Hispanic (18%), and nonurban (15%) women; (2) taking appropriate action for American Indian (80%), African American (64%), non-Hispanic (55%), and urban (56%) women; (3) heart disease risk factors for Hispanic (56%) and American Indian (47%) women; and (4) heart disease and stroke symptoms in American Indian women (54% and 25%, respectively). Conclusions: Significant knowledge gaps persist for heart disease in high-risk women, suggesting that these gaps and groups should be targeted by educational programs. We specify areas of need, and we demonstrate efficacy of a clinic-based educational intervention that can be of utility to busy healthcare professionals.

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“…This study is the first report of NA undertaken in adults with CHD. It adds depth of detail and context to the existing quantitative literature regarding transition, disease knowledge, psychiatric disorders and physical limitations in this population . Addressing these nonsurgical, lifespan challenges is increasingly important as the distribution of complex CHD shifts from pediatric to adult practice .…”

Section: Discussionmentioning

confidence: 99%

“…It adds depth of detail and context to the existing quantitative literature regarding transition, 5-7 disease knowledge, psychiatric disorders and physical limitations in this population. [8][9][10][11][12] Addressing these nonsurgical, lifespan challenges is increasingly important as the distribution of complex CHD shifts from pediatric to adult practice. 2 It makes sense to inform our efforts with voices of "expert witnesses".…”

Section: Discussionmentioning

confidence: 99%