Standardized prospective multidisciplinary follow-up of patients with surgical congenital malformations: A model for continuous data driven improvement of health care

INTRODUCTION: Congenital malformations requiring surgery are rare conditions, and despite decreasing mortality, these conditions are associated with substantial morbidity. Although research on outcomes of these patients is mostly focused on short term somatic outcomes, emerging evidence suggests morbidity in other aspects of functioning, such as neurodevelopmental impairment and impaired psychosocial functioning. Therefore, prospective multidisciplinary follow-up is important. Moreover, standardizing follow-up creates the opportunity to use data collected in follow-up for routine outcome monitoring aimed at healthcare evaluation and improvement of patient outcome, and for scientific research. METHODS: In this paper the design of a standardized prospective multidisciplinary follow-up program of surgical congenital malformations in the Amsterdam University Medical Center (Amsterdam, the Netherlands) is presented. Development of follow-up protocols, the composition of the multidisciplinary team, the process of data collection, implemented patient-reported and clinician reported outcome measures, the practical design of the follow-up carousel and multidisciplinary team meeting, and the healthcare evaluation sessions that are implemented in the program are described. Furthermore, we describe the data-driven approach to improvement of healthcare quality and patient outcome, that is integrated in this program. DISCUSSION: Prospective multidisciplinary follow-up in patients with surgical congenital malformations offers the possibility to standardize outcome measurements including patient-reported outcomes, thus allowing for 1) early recognition and intervention for poor outcome, thus improving patient outcome, 2) improvement of quality of healthcare by conducting outcome evaluation, and 3) a contribution to research on outcome and prognosis of patients with surgical congenital malformations.