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Intervention may speed transition to adult congenital heart disease care
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Adolescents with congenital heart disease who received a nurse-led intervention were less likely to have a delay in adult care and had improved knowledge of their condition and self-management skills compared with those who received usual care, according to a study published in the Journal of the American College of Cardiology.
“The nurse-led intervention is feasible and can be duplicated in other [congenital heart disease] programs,” Andrew S. Mackie, MD, SM, associate professor in the department of pediatrics, adjunct professor in the School of Public Health and program director of the pediatric cardiology residency training program at University of Alberta in Canada, and colleagues wrote. “A structured intervention program should be provided to all adolescents with [congenital heart disease] to prepare them for long-term care.”
Adolescents with congenital heart disease
Researchers analyzed data from 121 patients aged 16 or 17 years with moderate or complex congenital heart disease who had not been transferred to adult care. Patients with a heart transplant or a reading or comprehension level less than sixth grade were excluded.
Patients were assigned a transition intervention (n = 58; 55% girls) or usual care (n = 63; 43% girls). The intervention consisted of two one-on-one sessions with a nurse, who educated the patient on information such as congenital heart disease anatomy, previous interventions, medications, future complications and other resources. Patients in the usual care group did not receive these materials.
Welcome letters were sent periodically to both groups of patients informing them when to schedule their first adult congenital heart disease appointment.
The primary outcome was excess time between pediatric and adult congenital heart disease care. Secondary outcomes of interest were changes in the congenital heart disease knowledge score, Transition Readiness Assessment Questionnaire score and the Williams’ self-management scale between baseline, 1 month, 6 months, 12 months and 18 months.
At an excess time of zero, patients in the intervention group were 1.8 times more likely to have an adult congenital heart disease appointment within 1 month of the recommended time compared with the usual care group (95% CI, 1.1-2.9; Cox regression, P = .018). At an excess time of 6 months, this increased to three times more likely to have an appointment within 1 month (95% CI, 1.1-8.3).
Improved knowledge, self-management
Compared with the usual care group, the intervention group had higher scores in the MyHeart survey (mixed models, P < .001) and Transition Readiness Assessment Questionnaire self-management index (mixed models, P = .032) at 1 month, 6 months, 12 months and 18 months.
“Interventions were deliberately delivered by cardiology nurses, who are an integral part of most cardiac programs and less costly than nurse practitioners,” Mackie and colleagues wrote. “This approach increases study generalizability to other sites.”
In a related editorial, Michael J. Landzberg, MD, associate in cardiology, associate director of the adult pulmonary hypertension program and director of Boston Adult Congenital Heart at Boston Children’s Hospital and assistant professor of medicine at Harvard Medical School, and Michelle Gurvitz, MD, MPH, co-director of the Boston Adult Congenital Heart program and assistant professor of pediatrics at Harvard Medical School, wrote: “Although knowledge in the field of transition for patients with congenital heart disease in increasing from the work of Dr. Mackie and others, we still need to define and incrementally study the structure, process, implementation and assessment tools regarding transition programming to ensure the most clinically successful as well as the most efficient and cost-effective approach. Because there are different health care models across North America and the globe, determining successful individual components is crucial as resources and delivery methods may vary.” – by Darlene Dobkowski
Disclosures: The authors, Landzberg and Gurvitz report no relevant financial disclosures.
Perspective
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David Drajpuch, MSN, CRNP
For children with congenital heart disease, it has been described time and again that there is extreme difficulty with the transfer of care from the pediatric to the adult health care world. Depending upon the study, as many as 63% of adolescents and young adults will have periods in which they fall out of cardiac care, often resulting in increased morbidity (Yeung E, et al. Int J Cardiol. 2008;doi:10.1016/j.ijcard.2007.02.023).
While there are numerous studies describing this phenomenon of patients with congenital heart disease being lost to care during adolescence and early adulthood, there have been few reports of interventions to combat this problem. Andrew Mackie and colleagues have taken on the problem with a proposed nursing-led transition intervention in the hopes of decreasing lapses in care.
While the outcome of this study was not overwhelming with regards to statistical significance, there were several key points to take away. First, the intervention required only two nursing visits. In a health care environment where cost is always scrutinized, this represents a cost-effective method to implement a formal transition program. This also plays into the strength of the nurse as educator and coordinator of care.
Next, there was a positive trend towards patients attending their first adult cardiology appointment within the time recommended by their pediatric cardiologist. These two visits also resulted in improved patient knowledge about their heart condition as well as better self-management and self-advocacy.
Unfortunately, there was no difference in scores on the Transition Readiness Assessment Questionnaire or in the number of patients who failed to attend an adult cardiology appointment. One explanation for this negative result may be that transition is a process that begins at birth and culminates in adolescence/young adult with transfer to adult health care. This intervention may have been too modest to reverse the lack of transition education for the first 15 years of these patients’ lives. Perhaps instituting a transition intervention earlier in the patient’s life will have more of an impact on successful transfer. That being said, this is an excellent first step and should help guide future research and interventions towards achieving the elusive goal of seamless transfer of children with congenital heart disease to adult congenital cardiology care.
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