Desiree Fleck

Guidelines for the Outpatient Management of Complex Congenital Heart Disease

An increasingly complex group of children is now being followed as outpatients after surgery for congenital heart disease. A variety of complications and physiologic perturbations, both expected and unexpected, may present during follow-up, and should be anticipated by the practitioner and discussed with the patient and family. The purpose of this position article is to provide a framework for outpatient follow-up of complex congenital heart disease, based on a review of current literature and the experience of the authors.

Development of an international research agenda for adult congenital heart disease nursing

Background: Since the population of adults with congenital heart disease (CHD) is growing, the role of nurse specialists is expanding. In order to advance ACHD nursing, the establishment of an international nursing research agenda is recommended. We aimed to investigate research priorities as perceived by nurse specialists and researchers in ACHD. Methods: We applied a sequential quan–qual design. In the quantitative phase, a two-round Delphi study was conducted, in which 37 nurse specialists and nurse researchers in ACHD care participated. Respondents assessed the level of priority of 21 research topics using a 9-point rating scale (1 = no priority at all; 9 = very high priority). In the qualitative phase, semi-structured interviews were performed with six selected Delphi panelists, to scrutinize pending research questions. Results: This study revealed that priority should be given to studies investigating knowledge and education of patients, outcomes of Advanced Practice Nursing, quality of life, transfer and transition, and illness experiences and psychosocial issues in adults with CHD. A low priority was given to post-operative pain, sexual functioning, transplantation in ACHD, and health care costs and utilization. Agreement about the level of priority was obtained for 14 out of 21 research topics. Conclusion: Based on this study, we could develop an international research agenda for ACHD. Researchers ought to focus on these areas of highest priority, in order to expand and strengthen the body of knowledge in ACHD nursing.

What is the best measure of daytime sleepiness in adults with heart failure

Purpose: To identify the best screening measure of daytime sleepiness in adults with heart failure (HF). Data sources: A total of 280 adults with HF completed the Epworth Sleepiness Scale, the Stanford Sleepiness Scale, and a single Likert item measuring daytime sleepiness. The sensitivity and specificity of these self‐report measures were assessed in relation to a measure of daytime dysfunction from poor sleep quality. Conclusions: Only 16% of the sample reported significant daytime dysfunction because of poor sleep quality. Those reporting daytime dysfunction were likely to be younger (p < .001), to be unmarried (p = .002), to have New York Heart Association (NYHA) functional class IV HF (p = .015), and to report low income (p = .006) and fewer hours of sleep (p = .015). The measure of daytime sleepiness that was most sensitive to daytime dysfunction was a single Likert item measured on a 10‐point (1–10) scale. Patients with a score ≥4 were 2.4 times more likely to have daytime dysfunction than those with a score <4. Implications for practice: Complaints of daytime dysfunction because of poor sleep are not common in adults with HF. Routine use of a single question about daytime sleepiness can help nurse practitioners to identify those HF patients with significant sleep issues that may require further screening.