Definition and delivery of an aortopathy bundle of care (ABC): a tool for improving diagnosis and management of Marfan syndrome and related conditions

Multidisciplinary aortopathy clinics: A systematic scoping review of the literature and evaluation of patient experiences from a newly started clinic in Norway

“…Thirty‐six potentially relevant papers were identified and read in full‐text (Figure 1). Only six peer‐reviewed papers (Bradley & Bowdin, 2016; Strider et al, 1996; Summers et al, 2006; von Kodolitsch et al, 2016; Wright et al, 2016; Zentner et al, 2015) and two conference abstracts (Andvik et al, 2011; McLean, 2012) met the eligibility criteria and were included in this review (Table 1). Excluded articles with reasons for exclusion are presented in Table S1.…”

“…Excluded articles with reasons for exclusion are presented in Table S1. The included peer‐reviewed papers comprised a prospective study (Strider et al, 1996), one case series (Summers et al, 2006), one retrospective chart review (Zentner et al, 2015), one innovation report (Wright et al, 2016) and two narrative reviews/ expert experiences (Bradley & Bowdin, 2016; von Kodolitsch et al, 2016). Four studies (Andvik et al, 2011; Strider et al, 1996; Summers et al, 2006; Zentner et al, 2015) reported patient data on a total of 771 patients with MFS and other HTADs.…”

“…Three papers reported benefits of consultations in settings where the patient‐meetings were organized with several professionals (multidisciplinary) at the same time. The advantages included for instance more appropriate and timely care and follow‐up, increased adherence with medical therapy, and reduced time to reach clinical decisions (Bradley & Bowdin, 2016; Wright et al, 2016; Zentner et al, 2015). Other documented benefits were better diagnostics and long‐term management of patients (Strider et al, 1996; Summers et al, 2006; Wright et al, 2016; Zentner et al, 2015).…”

“…Andvik et al described a reduction in aortic dissection‐ and cardiovascular surgery rates (Andvik et al, 2011). One study found that the patients specifically appreciated the team competence and multidisciplinary care approach at the Marfan clinic (von Kodolitsch et al, 2016), while another reported high patient satisfaction with the multidisciplinary approach (Wright et al, 2016). None of the studies included control groups, but Andvik et al compared results from their clinic from one decade with the next decade (Andvik et al, 2011).…”

“…In one study, an e-mail questionnaire was sent to patients, and results showed that the responders (19%) appreciated the competence of the medical team, multidisciplinary care, trusting the doctor, overcoming fear, and explanations (von Kodolitsch et al, 2016). In the study by Wright et al, patients reported high levels of satisfaction with the multidisciplinary approach (Wright et al, 2016). As Zentner et al stated, there seems to be need for more research to evaluate patient outcomes and cost-effectiveness of aortopathy clinics (Zentner et al, 2015).…”