Hypothesis / aims of study
In childhood there are some causes of incontinence, requiring a life-long care, as: bladder exstrophy, posterior urethral valves, neurogenic bladder related to spina bifida, anorectal malformation, spinal cord injury or pelvic trauma realted to surgery, etc.All these conditions are rare disease, however the high rate survival , is creating worldwide an increasing specific population. Uptonow different adult Health care provider (HCP): urologist, gynecologist, coloproctologist, physiotherapist, nurse, etc are involved on the care of these patients with paediatrics (urologist, surgeon, nurses) in different program and organization. The majority of these programs are not well defined, and no single worldwide accepted document is reported defining a transitional care process from adolescence to adult life for people with lower urinary tract and pelvic floor dysfunction related either to a congenital malformation either to an acquired condition during childhood. Aim of our paper has been to define the actual situation in the main Institution involved in transitional care process in European Western Country , evaluating with a survey adult center and paediatrics ones, in order to define advantages, concerns, satisfaction.
Study design, materials and methods
A multidisciplinary working group (WG) involving well experienced Health care Professionals (HCP) with transitional care has been created, including Urologist, pediatric urologist, gynaecologist, surgeon ,pediatric surgeon, physiotherapist, nurses. A multiple choice questionnaire (MPCQ) has been defined by two senior urologist/pediatric urologist, and submitted to the WG, for reviewing and approval . The reviewed version,of 18 MPCQ has been submitted to major adult and pediatric center involved in continence transitional care, all centers have been selected on their experience, in order to define concerns, limitations, etc on the basis of survey results. Data have been evalutatd using SPSS Windows package and statistically computed by Kruskall Wallis test.
A 18 items MPCQ has been sent to 20 pediatric urology and pediaric surgery deprtment , Group Pediatric (GP) and to 10 adult urology center, group adult (GA). The institution involved are similar in both groups (60% public hospital, 20 private hospital, 10% University, 10 others), with a quite similar activity for urological disease: neurogenic bladder, hypospadia, perineal malformation. In GP the majority of HCP involved are pediatric surgeon (30%) vs urologist in GA (60%). The clinical experience of these HCP has been reported higher in GP, 75%>20 yrs versus GA, 40%>20yrs. No significative statistical difference has been reported for volume activity ( numer fo major urological reconstruction/year) between both groups. Only 30% in GP and GA reported a specific program for transition .These programs are active by > 5yrs only in 15% of GP and 30% GA. The team composition between adult and pediatric specialist is mainly undefined and only 20% in both groups reported a defined and structured team. Urotherapist are present in 50%of GA and only in 5% of GP. The presence of the other specialist (orthopaedic, gynaecologist,psychologist) is reported in 30% in GP vs 50% in GA. The majority of HCP is working with individual connection between centers based on personal realtionship, 80-90% without a well defined program. Most HCP avocated as useful the presence of pediatric urologist instead of pediatric surgeon and an adult urologist specialized in reconstructive/functional urologist, as “adolescent urologist “( 60%, 40%). 55% of GP HCP vs 40% GA HCP are satisfied about the clinical program of transitional care in their institution, reporting an high rate of satisfaction by patients, 50% vs 70%.
Interpretation of results
The results of this survey, in a well industrialized European western country, confirmed previous investigations in paediatrics, where the lack of specific program is commonly reported. Different institution are using different program organization, where the difference could be partially explained by different logistic ( pediatric urology department into pediatric hospital or into general hospital cohexisting or joined to urological (adult) department . Significant is the scant presence of urotherapist), mainly in pediatric institution, as well as the different organization of HCP team. Furthermore is interesting to observe that in many pediatric urological center the coordinator is a pediatric surgeon instead of a pediatric urologist. Moreover mostly in adult center early career professionals are involved in transitional care of continence , as for reduced clinical interest.
Our survey confirmed the usefulness to define a common specific program for transitional care, either in every single country either,with scientific society , worldwide. In our mind the snapshot of our single country survey could be usefull in order start an active joint WG to ameliorate assistance to these chronic complex patients and define specific educational module for physician, surgeon, nurse , physiotherapist.