Perceptions of Disease-Related Stress

Abstract

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.

What Do We Know About Young Adult Cardiac Patients' Experience? A Systematic Review

“…As in our review, most other results focused on the physical difficulties and especially perceptions of the injured body. These provoked impairment and feelings of dependence and uselessness, with social limitations as a result (Vazquez et al, 2008 ; Allison and Campbell, 2009 ; McDonough, 2009 ; Ooi et al, 2016 ; Jackson et al, 2017 ; Chong et al, 2018 ). Weakness was especially incompatible with the vision men had of themselves (Allison and Campbell, 2009 ).…”

“…Studies that include young adults coping with a cardiac illness are scarce (McDonough, 2009 ; Wong et al, 2017 ). Systematic reviews interested in the psychosocial aspects of individuals coping with a cardiac illness do not specifically deal with young adults (Fredericks et al, 2012 ; Foxwell et al, 2013 ; Herr et al, 2014 ; Doyle et al, 2015 ; Li et al, 2015 ; Tully et al, 2015 ; Ooi et al, 2016 ; Le et al, 2018 ), and studies that do usually focus on patients coping with congenital heart diseases (Van Rijen et al, 2004 , 2005a , b ; Fredriksen et al, 2009 ; Asp et al, 2015 ; Uzark et al, 2015 , 2016 ; Jackson et al, 2017 ; Abda et al, 2018 ; Andonian et al, 2018 ; Grady et al, 2018 ; Monti et al, 2018 ).…”

Percepciones de la enfermedad y hábitos de vida saludable en personas con enfermedades crónicas

“…En pacientes diabéticos, por otra parte, se ha encontrado que la identidad se relaciona significativamente con las prácticas de cuidado de los pies (Vedhara et al, 2014). Igualmente, que las personas que comprenden la enfermedad tienen una visión más optimista respecto a la mejoría de los síntomas (Broadbent, et al, 2009;Jackson, Gerardo, Daniels & Vannatta, 2017;Platt et al, 2014), contrario a lo reportado en este estudio, en donde comprender la enfermedad se relaciona negativamente con los hábitos de vida saludable.…”

Adolescents and Young Adults Living with Congenital Heart Disease: Coping, Stress Reactivity, and Emotional Functioning

“…As CHD survivors transition through adolescence into adulthood, they may face a number of challenges due to their medical condition, such as on-going treatment, limitations at school or work, and worry about their future health. Because these stressors portend risk for emotional distress (Jackson, Gerardo, Daniels, & Vannatta, 2016; Kovacs et al, 2009; Kovacs & Utens, 2015), it is important to understand how individuals respond to CHD-specific stressors and the consequences of these responses for emotional functioning. Such knowledge is crucial to developing targeted interventions.…”

“…CHD survivors also may experience physical symptoms, lifestyle limitations, body image concerns, and reproductive or sexual dysfunction. Moreover, they may face uncertainty about their disease and future health (Jackson, Dulfer, & Utens, 2016; Jackson, Gerardo, et al, 2016; Kovacs, Sears, & Saidi, 2005; Warnes et al, 2008). Indeed, in a quantitative examination of CHD-related stress in the current sample, concerns about future health, scars and visible signs of medical procedures, and limitations in activities emerged, as some of the most difficult aspects of CHD, with 39–44% of survivors rating these stressors as somewhat or very stressful (Jackson, Gerardo, et al, 2016).…”