Transition of care - The development of transition of care programs for colorectal patients
With Dr. Anders Terhol & Dr. Irena Schocken van Lindskrooten & Dr. Rebecca Pulvirenti
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What the experts said
Norway has 1750 kilometers from south to north with a population of 5.4 million people where 1.15 million is under 18
Norwegian healthcare system is public and free with no private providers of pediatric surgery
Norway has only 2 referral pediatric surgical centers, one in Oslo and one in Trondheim
Norway sees about 10 cases each of Hirschsprung disease and rectal malformations yearly, with 14-16 cases treated in Oslo and 4-6 in Trondheim
Oslo's colorectal transition clinic enrolls patients from age 12 with coping courses offered between ages 13 and 17
Referral to a pelvic floor center is considered when patients reach 17 years old
At age 12, patients always meet a pediatric surgeon and a stoma care nurse, with consultation with psychiatrist and/or neurotherapist offered when needed
Rectal manometry is offered to all adolescents in the Oslo program
Oslo's coping courses are held as 3-hour evening meetings, kept diagnosis-specific and boys and girls separate
Attendance rate for adolescent coping courses is 30% of invited adolescents, who score the usefulness as excellent
All adolescents and parents recommend the coping courses for others
Adult coping courses run as 1-day courses over 7 hours with only 17% attendance of invited adults
Gender and travel distance did not influence attendance at adult coping courses, but attendees were older (median 37) than non-attendees (median 23)
Many adults meet others with the same congenital disease for the first time at coping courses
Patients report shorter consultations in adult care than they are used to, expectations to come alone, and a rougher tone and treatment
Netherlands has 45 patients with anorectal malformation and 45 with Hirschsprung disease each year, with Erasmus MC Sophia Children's Hospital having 15 of each
Rotterdam starts thinking about transition at age 12 and patients go over to adult care at 18
Rotterdam sees patients at three time points during transition: ages 12, 14, and 17, with more visits if necessary
Some adolescent patients could not tell what kind of disease they had because parents did not tell them out of shame or taboo
If patients don't know what kind of disease they have, they cannot recognize alarm symptoms needed for self-management
Research showed issues with sexual well-being in patients with anorectal malformation and Hirschsprung disease
60% of patients say they missed information about sexuality in relationship with anorectal malformation or Hirschsprung disease in medical treatments
Starting at age 14, Rotterdam asks parents to leave the room for part of the conversation to avoid loyalty conflict
In adult care, visits are more driven by disease activity compared to standard interval visits in pediatric care
Rotterdam's adult colorectal clinic operates 10 times per year with an average of 30 patients annually
Italy has 8.6 million inhabitants aged between 0 and 16 with a public healthcare system and no disease centralization
Veneto region has 134,000 inhabitants from 0 to 16 years and 4 pediatric surgery centers
Padua Hospital has around 7-8 Hirschsprung patients per year, translating to around 40 patients currently on follow-up
Padua has around 75 anorectal malformation patients currently on follow-up with around 8 patients having undergone standardized transition of care
Padua introduces the concept of transition of care around age 15 and refers patients to adult gastroenterologist when they turn 16
Pediatric surgeons are present during the first adult visit and provide the adult specialist with a summary of patient clinical history
Multiple pediatric surgery centers in restricted areas impact continuity of follow-up as patients may move to closer centers
Small number of patients per year and per center creates a challenge to create a standardized pathway
Public healthcare system is overloaded, especially on the adult side, meaning patients without major needs or acute needs are often discharged from follow-up
Padua lacks any dedicated figure such as a nurse practitioner or specialist nurse to take care of transition of care
Padua does not have a colorectal-specific fellowship formalized in their program
Transition of care is handled during normal outpatient clinic without extra dedicated time