Follow-up of anorectal anomalies: the Italian parents' and patients' perspective.

BACKGROUND: Several studies addressed the long-term follow-up of anorectal anomalies (ARM) in relation to clinical issues (eg, continence) and quality of life. However, most of these studies are based upon questionnaires designed by physicians and/or health-care professionals, which may be sources of bias.
METHODS: To investigate whether parents of children (patients themselves or older children or adults) who were born with ARM had the perception that they received appropriate care and follow-up, a survey was carried out in Italy, in 2003, among families with children with ARM. A 20-item questionnaire was mailed to 425 patients and parents listed in the AIMAR (Italian association for anorectal malformation) database and was returned by 209 families. The questionnaire covered different aspects of ARM: type of malformations and surgery, associated anomalies, fecal and urinary continence, as well as aspects about information given to the parents and satisfaction of care and follow-up received. RESULT: The patients and parents demonstrated a good understanding of distribution of malformations and their anatomical classification; nevertheless, 67% of responders had to travel outside their living area for surgery. Bowel management (BM) was commonly used among subjects; however, a significant percentage of patients using regular enemas were still soiling (58 patients were clean and 116 soiled). Urinary continence problems were mostly found in females with cloaca; nevertheless, 21 male patients reported occasional dribbling of difficult interpretation. Most subjects were provided with a good explanation about their or their child's malformation at time of reconstructive surgery, but the same level of information was missing about functional prognosis later in life when the need of an appropriate psychologic support was also felt.
CONCLUSIONS: Patients and parents born with ARM are generally satisfied with the information received and with the short-term postreconstructive follow-up care. At longer follow-up, although more than a quarter of patients are completely clean, there is a significant percentage of subjects who still soil while following a BM program. This is explained by the small number of nurses and BM specialists who are involved in the rehabilitation process and by the lack of appropriate information about functional prognosis that are conveyed to the parents. In this respect, psychologic support in bridging the gap between cure and care may be critical.