An Evaluation of Disease Knowledge in Dyads of Parents and Their Adolescent Children With Congenital Heart Disease

Yang, Hsiao Ling; Chen, Yueh-Chih; Wang, Jou‐Kou; Gau, Bih‐Shya; Moons, Philip

doi:10.1097/jcn.0b013e318260c308

Cited by 33 publications

(28 citation statements)

References 34 publications

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“…However, there were not significant differences between groups in baseline socio‐demographic and clinical variables, but reviewing the baseline distributions of patients' characteristics we observed that although the difference is non‐significant, control group included almost twice as many participants with university degree and half with no formal education. Taking into account the significant positive relationship between education level and knowledge found in previous studies on other diseases (replicated in our completers analysis; in addition, patients with university degree also outperformed no formally educated patients in the variable “feeling informed”), this could suggest that allocation imbalance might have been in fact more prejudicial for the intervention group, in terms of the outcomes evaluated.…”

Section: Discussionsupporting

confidence: 75%

Effectiveness of a decision aid for patients with depression: A randomized controlled trial

Perestelo-Pérez

Rivero‐Santana²,

Sánchez-Afonso

et al. 2017

Health Expectations

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BackgroundShared decision making is an important component of patient‐centred care and decision aids are tools designed to support patients' decision making and help patients with depression to make informed choices.ObjectiveThe study aim was to assess the effectiveness of a web‐based decision aid for patients with unipolar depression.DesignRandomized controlled trial.Setting and participantsAdults diagnosed with a major depressive disorder and recruited in primary care centres were included and randomized to the decision aid (n=68) or usual care (n=79).InterventionPatients in the decision aid group reviewed the decision aid accompanied by a researcher.Outcome measuresKnowledge about treatment options, decisional conflict, treatment intention and preference for participation in decision making. We also developed a pilot measure of concordance between patients' goals and concerns about treatment options and their treatment intention.ResultsIntervention significantly improved knowledge (P<.001) and decisional conflict (P<.001), and no differences were observed in treatment intention, preferences for participation, or concordance. One of the scales developed to measure goals and concerns showed validity issues.ConclusionThe decision aid “Decision making in depression” is effective improving knowledge of treatment options and reducing decisional conflict of patients with unipolar depression. More research is needed to establish a valid and reliable measure of concordance between patients' goals and concerns regarding pharmacological and psychological treatment, and the choice made.

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Section: Discussionsupporting

confidence: 75%

Effectiveness of a decision aid for patients with depression: A randomized controlled trial

Perestelo-Pérez

Rivero‐Santana²,

Sánchez-Afonso

et al. 2017

Health Expectations

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“…Our results show that patients and their parents are often insufficiently informed of the consequences of the treatments they undergo. Our findings of limited knowledge among patients and parents are in line with prior research in (parents of) patients with congenital heart disease 16–18 23–28. Limited knowledge and limited availability of information have been previously described to be associated with anxiety, depression and impaired quality of life, which underlines the importance of adequately informing our patients and their parents 29 30…”

Section: Discussionsupporting

confidence: 86%

“…As this was a Dutch study in which patients/parents were recruited from a single centre, possible international differences in medical practice, culture and language as well as interinstitutional practice variation should be taken into consideration, although our findings are in line with prior studies in other centres and countries 16–18 23–28. Our disease-specific knowledge questionnaire was only aimed at capturing the most basic knowledge of disease, and the level of more in-depth disease-specific knowledge among these subjects remains to be elucidated.…”

Section: Limitationssupporting

confidence: 69%

“…Our findings represent a major area for improvement in our current practice of congenital cardiac care and provides the potential to substantially improve outcome in these patients 16–18 23–28. Better informed and more activated patients have been found to be associated with improved quality of life, treatment adherence, health behaviour and clinical outcome and also with more efficient healthcare utilisation and lower healthcare costs 6–19.…”

Section: Discussionmentioning

confidence: 69%

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Patient and physician view on patient information and decision-making in congenital aortic and pulmonary valve surgery

et al. 2018

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BackgroundTo assess the current state of patient information and decision-making in congenital aortic and pulmonary valve disease, we conducted a survey among patients, parents and physicians.MethodsA questionnaire was sent by ground mail to 157 adults and 32 parents of children who previously underwent surgery for congenital aortic or pulmonary valve disease at 0–40 years of age between January 2005 and February 2014 at the Erasmus University Medical Center and to all paediatric and adult congenital cardiologists and congenital cardiac surgeons in the Netherlands (n=88).Results73 patients/parents (39% response rate, 62 adult patients, 11 parents of paediatric patients) and 35 physicians (40% response rate) responded. Median patient age at the time of surgery was 25.7 years. Basic disease-specific knowledge was adequate in 42% of patients/parents and numeracy was sufficient in 47%. Patients/parents reported that they rely heavily on their physicians for information and often experience difficulty in finding reliable information elsewhere. They lack information on psychosocial aspects of disease (29% of respondents) and risks and benefits of treatment options (26%). They feel less involved in decision-making than they would prefer to be (p=0.014). Decisional conflict at the time of surgery was experienced by 31% of patients/parents. If they had to do it again, 72% of patients/parents would want the same treatment. Quality of life is often impaired due to various valve-related anxieties and lifestyle changes. Physicians reported that they are unable to fully inform and sufficiently involve patients, due to limited patient/parent knowledge and understanding (56%) and limited time during consultations (32%). Patients/parents (98%) and physicians (97%) agree that they should have shared roles in decision-making.ConclusionThe substantial shortcomings in our current practice of patient information and decision-making underline the need for innovative solutions, such as careful implementation of patient information tools and shared decision-making in the care path.

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“…[11] Disparities in the medical care provided to the growing CHD adolescent survivor population involves: (1) poor care transition (an age and developmentally appropriate process, addressing the medical, psychosocial and educational/vocational aspects of care) from child-centered to adult-centered healthcare [8] [ 12] and (2) lack of appropriate transfer of care (the point at which an adult cardiac provider assumes the medical care of a CHD patient). [1,2,[12][13][14] Lack of assessment of transition readiness (TR) (the capacity of the adolescent and medical team to initiate and successfully complete the transition process) [15,16], compounds disparities in quality care. [17] Disparities become further magnified in ethnic minorities.…”

Section: Introductionmentioning

confidence: 99%

Improving Transitions of Care for Young Adults With Congenital Heart Disease: Mobile App Development Using Formative Research (Preprint)

Lopez¹,

O’Connor²,

King³

et al. 2018

Preprint

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Abstract:Background: Congenital heart diseases (CHDs) are the most common type of birth defects. Improvements in CHD care have led to ~1.4 million survivors reaching adulthood. Thus, successful transition and transfer from pediatric to adult care is crucial. Unfortunately, <30% of adults with CHD successfully transition to adult care; this number is lower for minority and lower socioeconomic status (SES) populations. Few CHD programs exist to facilitate successful transition. Objective: To describe the development of a prototype mobile application (app) for CHD adolescents to facilitate transition.Methods: A literature search regarding best practices in transition medicine for CHD was conducted to inform app development. Formative research with a diverse group of CHD adolescents and their parents was conducted to determine gaps and needs for CHD transition to adult care. As part of the interview, surveys assessing transition readiness and CHD knowledge were completed. Two adolescent CHD expert panels were convened to inform educational content and app design.Results: Literature review revealed 113 articles, of which 38 were studies on transition programs and attitudes and three identified best practices in transition specific to CHD. Adolescents (n=402) participating in semi-structured interviews were 15-22 years old (Median age 16 years), female (42%), and racially/ethnically diverse (12.6% African American; 37.4% Latino. 36.4% received public insurance. Most adolescents (76.7%) had moderate or severe CHD complexity and reported minimal CHD understanding (79.2% aged 15-17 years and 61.5% aged 18-22 years). Average initial transition readiness score was 50.9/100, meaning that transition readiness training was recommended. A subset of participants (n=363) were asked about technology use: 94.5% reported having access to a smartphone. Interviews with parents revealed limited interactions with the pediatric cardiologist with transition-related topics: 79% reported no discussions regarding future family planning, and 55% reported the adolescent had not been screened for mental health concerns (depression, anxiety). Further, 66% reported not understanding how health care changes as adolescents become adults. Adolescents in the expert panel (n=6 total; two groups of n=3) expressed interest in a CHD-specific tailored app consisting of quick access to specific educational questions (e.g., "can I exercise"), a CHD story-blog forum, a mentorship platform, a question and answer space, and a transition checklist to facilitate transition. They expressed interest in using the app to schedule CHD clinic appointments and medication reminders. Based on this data, a prototype mobile application was created to assist in adolescent CHD transition.Conclusions: Formative research revealed that most adolescents with CHD had access to smartphones, were not prepared for transition to adult care, and were interested in an app to facilitate transition to adult CHD care. Understanding their needs, interests, and concerns will lead to the de...

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An Evaluation of Disease Knowledge in Dyads of Parents and Their Adolescent Children With Congenital Heart Disease

Cited by 33 publications

References 34 publications

Effectiveness of a decision aid for patients with depression: A randomized controlled trial

Effectiveness of a decision aid for patients with depression: A randomized controlled trial

Patient and physician view on patient information and decision-making in congenital aortic and pulmonary valve surgery

Improving Transitions of Care for Young Adults With Congenital Heart Disease: Mobile App Development Using Formative Research (Preprint)

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