Historical investigation of medical treatment for adult congenital heart disease: A Canadian perspective

Abstract

Objective:The number of adults with congenital heart disease (CHD) has increased substantially because of medical advances that are extending life expectancy beyond childhood. A historical investigation is timely not only because of this significant demographic shift, but also because stakeholder engagement is increasingly important in shaping research directions. The study questions were: From the perspective of stakeholders, what is known about the medical treatment for the adult CHD cohort in Canada and how has it changed over time?Design/Methods: We harnessed the use of historical research methods and conducted interviews with 21 key informants in order to articulate a contextualized understanding of the evolution of adult CHD treatment in Canada. The informants recruited were currently or previously located in and/or involved in treatment in seven provinces and two territories across Canada including patients, families, advocates, researchers, and practitioners located in disciplines that included cardiology, cardiovascular surgery, nursing, psychology, dietetics, and kinesiology.Results: Alongside findings that highlighted the significant demographic shift, the findings highlight key themes related to temporal shifts in treatment, emergence of organizational structures and use of evidence, comprehensive approaches to care, and future directions. A critical finding that requires immediate attention is the significantly disproportionate resources to the number of adults living with CHD, and as a result, the real risk of premature death for this population. Conclusions:The insights provided behoove the community of stakeholders to think creatively on how to draw attention to the inadequacy of resources and the unique and diverse needs of this population.

“We have dealt with so much. There’s more coming?”: Improving Knowledge About Brain Health in Adults Living With Congenital Heart Disease

“…Prevention and management of neurocognitive differences could also be strengthened during health care encounters with cardiologists and in primary care. 3 Recognizing the implications of cognitive impairment on the quality of life of adults living with CHD and the need for referrals to specialists, 19 clinicians could develop rapid guides to aid in screening for neurocognitive differences in people living with CHD 17 and subsequent referral to neurologists and neuropsychologists, who at present are not part of specialized ACHD teams. 17 , 43 Developing close partnerships with clinicians with expertise in neurology and neurocognition as core elements of the multidisciplinary team will be key in developing integrated systems and pathways that routinely address brain health as part of CHD care.…”

“…In Canada, increased numbers of hospitalizations of adults with CHD have mirrored similar trends across the world. 2 This “demographic tsunami” 3 of aging individuals with CHD has caused a paradigm shift among clinicians and researchers, who have recognized the personal, social, and economic implications for people living longer with CHD. Therefore, understanding the experiences of individuals living with CHD is paramount to developing specialized health services that meet the long-term care needs of this subpopulation and improve their quality of life.…”

Current approach to genetic testing and genetic evaluation referrals for adults with congenital heart disease

“…Medical advances have led to improved diagnosis and management of adults with congenital heart disease (ACHD). Two-dimensional echocardiograms first became available in the 1970s and greatly improved the diagnosis of CHD ( Kiess, 2016 ; Lapum et al, 2019 ). Improving medical and surgical management of CHD has translated into longer life expectancy; with approximately 90% of patients with CHD born after 1990 having survived to adulthood.…”