Structure and process measures of quality of care in adult congenital heart disease patients: A pan-Canadian study

Beauchesne, Luc; Therrien, Judith; Alvarez, Nanette; Bergin, Lynn; Burggraf, Gary W.; Chétaille, Philippe; Gordon, Elaine; Kells, Catherine; Kiess, Marla; Mercier, Lise‐Andrée; Oechslin, Erwin; Stein, Jeffrey S.; Tam, James W.; Taylor, Dylan; Williams, Anne; Khairy, Paul; Mackie, Andrew S.; Silversides, Candice K.; Marelli, Ariane J.

doi:10.1016/j.ijcard.2010.12.024

Cited by 45 publications

(28 citation statements)

References 31 publications

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“…13 Specialized ACHD centers should provide a range of services specifically geared toward meeting the needs of this patient population. Physician expertise is key to delivering quality ACHD care such that ACHD subspecialty training programs have emerged to address the shortage of manpower in this emerging field of cardiology.…”

Section: Discussionmentioning

confidence: 99%

“…5,12 Despite these recommendations and more than a decade later, less than one-third of eligible patients actively receive specialized ACHD care in Canada, where health insurance is universal. 13 In the United States, this proportion is expected to be significantly less, and care gaps and dispersion have been documented. 14,15 Despite specialized care for all ACHD patients being espoused by societal guidelines, 9,10 there is little evidence demonstrating that this model of care improves clinical outcomes.…”

Section: Editorial See P 1795 Clinical Perspective On P 1812mentioning

confidence: 99%

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Specialized Adult Congenital Heart Disease Care

et al. 2014

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Background-Clinical guidelines recommend specialized care for adult congenital heart disease (ACHD) patients. In reality, few patients receive such dedicated care. We sought to examine the impact of specialized care on ACHD patient mortality. Methods and Results-We examined referral rates to specialized ACHD centers and ACHD patient mortality rates between 1990 and 2005 in the population-based Quebec Congenital Heart Disease database (n=71 467). This period covers several years before and after the publication of guidelines endorsing specialized care for ACHD patients. A time-series design, based on Joinpoint and Poisson regression analyses, was used to assess the changes in annual referral and patient mortality rates. The association between specialized ACHD care and all-cause mortality was assessed in both case-control and cohort studies. The time-series analysis demonstrated a significant increase in referral rates to specialized ACHD centers in 1997 (rate ratio, +7.4%; 95% confidence interval [CI], +6.6% to +8.2%). In parallel, a significant reduction in expected ACHD patient mortality was observed after year 2000 (rate ratio, −5.0%;95% CI, −10.8% to −0.8%). In exploratory post hoc cohort and case-control analyses, specialized ACHD care was independently associated with reduced mortality (hazard ratio, 0.78; 95% CI, 0.65-0.94) and a reduced odds of death (adjusted odds ratio, 0.82; 95% CI, 0.08-0.97), respectively. This effect was predominantly driven by patients with severe congenital heart disease (hazard ratio, 0.38; 95% CI, 0.22-0.67). Conclusions-A significant increase in referrals to specialized ACHD centers followed the introduction of the clinical guidelines. Moreover, referral to specialized ACHD care was independently associated with a significant mortality reduction. Our findings support a model of specialized care for all ACHD patients. (Circulation. 2014;129:1804-1812.)

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Section: Discussionmentioning

confidence: 99%

Section: Editorial See P 1795 Clinical Perspective On P 1812mentioning

confidence: 99%

Specialized Adult Congenital Heart Disease Care

et al. 2014

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“…Problematic is that many adults are not routinely followed by practitioners specializing in CHD 16 and/or by 1 of the 15 ACHD clinics in Canada. 17 There simply remains inadequate numbers of trained specialists 18 despite the mounting cohort of adults with CHD. A Pan-Canadian study reports that national wait-time targets are not being met.…”

Section: Discussionmentioning

confidence: 99%

“…A Pan-Canadian study reports that national wait-time targets are not being met. 17 This issue is complicated by the loss to follow-up that occurs when children are not transferred to adult providers 19 and comprehensive, formalized programs are not in place to ensure smooth transfers from pediatric to adult care. 20 Our work, among others, 21 have consistently indicated that this is problematic because the unique, complex and multisystem nature of ACHD requires multidisciplinary and specialty-trained teams.…”

Section: Discussionmentioning

confidence: 99%

“…20 Our work, among others, 21 have consistently indicated that this is problematic because the unique, complex and multisystem nature of ACHD requires multidisciplinary and specialty-trained teams. Additionally, there is insufficient access to psychological and social support provided by social workers and psychologists 17 as well as a need to integrate psychology into ACHD programs. 22 Our study underlined the significance of this issue both from the patient and provider perspective who emphasized the social and psychological impact of ACHD that interferes with daily functioning.…”

Section: Discussionmentioning

confidence: 99%

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

Lapum

Fredericks

Bailey

et al. 2018

Congenital Heart Disease

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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.

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Association of Adult Congenital Heart Disease With Pregnancy, Maternal, and Neonatal Outcomes

et al. 2019

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Key Points Question Do pregnancy, maternal, and neonatal outcomes differ in women with different types of adult congenital heart disease? Findings In this large cross-sectional study of 2114 women with adult congenital heart disease in Canada, maternal and neonatal outcomes varied by subtype of maternal heart condition. Adult congenital heart disease was associated with increased odds of adverse maternal, neonatal, and pregnancy outcomes during labor and delivery hospitalization. Meaning These findings may help to highlight the importance of understanding and considering subtypes of adult congenital heart disease in clinical management of these high-risk pregnancies.

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Structure and process measures of quality of care in adult congenital heart disease patients: A pan-Canadian study

Cited by 45 publications

References 31 publications

Specialized Adult Congenital Heart Disease Care

Specialized Adult Congenital Heart Disease Care

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

Association of Adult Congenital Heart Disease With Pregnancy, Maternal, and Neonatal Outcomes

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