Narrative analysis of adults with complex congenital heart disease: Childhood experiences and their lifelong reverberations

Keir, Michelle; Bailey, Barbara; Lee, Angela; Kovacs, Adrienne H.; Roche, S. Lucy

doi:10.1111/chd.12647

Cited by 22 publications

(10 citation statements)

References 16 publications

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“…In addition, many patients with ACHD have medical post-traumatic stress disorder or anxiety and can relate traumatic childhood medical experiences with little prompting. 23,24 This combination of an external locus of control, a preference away from receiving medical information regarding their own health, and trauma highlights the importance of multidisciplinary care for patients with ACHD. Cardiologists receive little training on how to navigate the mental health needs of their patients, and our research highlights the importance of involving psychologists and social workers in long-term ACHD care.…”

Section: Discussionmentioning

confidence: 99%

Barriers to Care in ACHD: A Study of Young Adults in Saskatchewan

et al. 2020

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Background Adults with congenital heart disease (CHD) are living longer with more complex disease. Maintaining lifelong care prevents morbidity and mortality, but many patients remain lost to follow-up or experience care gaps. We sought to assess barriers to care for patients with adult CHD (ACHD) in Saskatchewan, a Canadian province with no local congenital cardiac surgical support and no clear framework for ACHD care. Methods We performed a telephone survey of patients with CHD transferred from pediatric to adult cardiology from 2007 to 2014. Our primary outcome was loss to follow-up > 2 years from last recommended cardiology appointment and/or multiple missed cardiology appointments. Secondary outcomes were guideline-based care (specialist training, adherence to appropriate endocarditis prophylaxis, pre-pregnancy counselling for women), presence or absence of previously described barriers to care in ACHD, and health care autonomy using the Krantz Health Opinion Survey. Results We interviewed 32 patients (30% response rate). One-quarter met the primary outcome: lost to follow-up > 2 years from last recommended cardiology appointment and/or self-report of missed cardiology appointments. Only 69% of young adults in Saskatchewan were receiving guideline-based care for their CHD (appropriate level of specialist expertise and frequency of follow-up). Only 72% of patients were adhering to endocarditis prophylaxis recommendations and 61% of women surveyed received counselling regarding pregnancy. Patients indicated a low preference for participating in decision making regarding their care on the Krantz Health Opinion Survey. Conclusions With our survey, we have created a novel snapshot of CHD care in Saskatchewan and have identified significant deficits.

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Section: Discussionmentioning

confidence: 99%

Barriers to Care in ACHD: A Study of Young Adults in Saskatchewan

et al. 2020

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“…Although patients with ACHD-HF often recall a childhood awareness of a potentially life-threatening diagnosis, they typically do not remember having had specific conversations about that with their parents or care providers. 37 Some feel vulnerable during adult health care interactions, because they lack the information needed to understand their acute situation and make medical management choices. 37 Beyond the potential psychosocial benefits of helping young people to understand their diagnoses and potential health trajectories, there may be practical advantages of discussing ACHD-HF with at-risk patients from late childhood onwards.…”

Section: Advanced Care Planning and End-of-life Carementioning

confidence: 99%

“…37 Some feel vulnerable during adult health care interactions, because they lack the information needed to understand their acute situation and make medical management choices. 37 Beyond the potential psychosocial benefits of helping young people to understand their diagnoses and potential health trajectories, there may be practical advantages of discussing ACHD-HF with at-risk patients from late childhood onwards. For instance, it is important to understand that becoming obese, smoking, or taking drugs will not only aggravate cardiac vulnerability but may also limit the options for eventual transplant.…”

Section: Advanced Care Planning and End-of-life Carementioning

confidence: 99%

Heart Failure in Adult Congenital Heart Disease: From Advanced Therapies to End-of-Life Care

Crossland

Bruaene

Silversides

et al. 2019

Canadian Journal of Cardiology

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There is mounting recognition that some of the most urgent problems of adult congenital heart disease (ACHD) are the prevention, diagnosis, and management of heart failure (HF). Recent expert consensus and position statements not only emphasize a specific and pressing need to tackle HF in ACHD (ACHD-HF) but also highlight the difficulty of doing so given a current sparsity of data. Some of the challenges will be addressed by this review. The authors are from 3 different centres; each centre has an established subspeciality ACHD-HF clinic and is able to provide heart transplant, multiorgan transplant, and mechanical support for patients with ACHD. Appropriate care of this complex population requires multidisciplinary ACHD-HF teams evaluate all possible treatment options. The risks and benefits of nontransplant ACHD surgery, percutaneous structural and electrophysiological intervention, and ongoing conservative management must be considered alongside those of transplant strategies. In our approach, advanced

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“…[ [14][15][16][17][18] Most importantly, randomised controlled trials are necessary to increase the level of evidence in the eld of CHD patient education. [19,20] In a pilot study evaluating the implementation of our own transition program, we showed that patients with complex CHD, poor disease knowledge, risk behaviours, and lower age, were more likely to join this transition program.…”

Section: Introductionmentioning

confidence: 99%

Impact of a transition education program on health-related quality of life in pediatric patients with congenital heart disease: study design for a randomised controlled trial

Werner¹,

Bredy²,

Lavastre³

et al. 2021

Preprint

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Background: Recent advances in the field of congenital heart disease (CHD) led to an improved prognosis of the patients and in consequence the growth of a new population: the grown up with congenital heart disease. Until recently, more than 50% of these patients were lost to follow up because of the lack of specialized structures. The critical moment is the transition between paediatric and adult unit. Therapeutic education is crucial to solve this issue by helping patients to become independent and responsible. The TRANSITION randomized trial aims to assess the impact of a transition education program on health-related quality of life (HRQoL) of adolescents and young adults with CHD. Methods: Multicentre, randomised, controlled, parallel arm study in CHD patients aged from 13 to 25 years old. Patients will be randomised into 2 groups (education program vs. no intervention). The primary outcome is the change in self-reported HRQoL between baseline and 12-month follow-up. A total of 100 patients in each group is required to observe a significant increase of the overall HRQoL score of 7±13.5 points (on 100) with a power of 80% and an alpha risk of 5%. The secondary outcomes are: clinical outcomes, cardiopulmonary exercise test parameters (peak VO2, VAT, VE/VCO2 slope), level of knowledge of the disease using the Leuven knowledge questionnaire for CHD, physical and psychological status. Discussion: As the current research is opening on patient related outcomes, and as the level of proof in therapeutic education is still low, we sought to assess the efficacy of a therapeutic education program on HRQoL of CHD patients with a randomized trial. Trial registration: This study was approved by the National Ethics Committee (South-Mediterranean IV 2016-A01681-50) and was registered on Clinicaltrials.gov (NCT03005626) on 29th December 2016 Key word: transition; therapeutic education; congenital heart disease; quality of life; adolescent.

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Narrative analysis of adults with complex congenital heart disease: Childhood experiences and their lifelong reverberations

Abstract: Adults with CHD provide the voices of expert witnesses; illuminating how the pediatric journey influences their identity, choices, personal relationships and adult health care interactions. These narratives could inform and improve the contemporary care of children with heart disease.

Cited by 22 publications

References 16 publications

Barriers to Care in ACHD: A Study of Young Adults in Saskatchewan

Barriers to Care in ACHD: A Study of Young Adults in Saskatchewan

Heart Failure in Adult Congenital Heart Disease: From Advanced Therapies to End-of-Life Care

Impact of a transition education program on health-related quality of life in pediatric patients with congenital heart disease: study design for a randomised controlled trial

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