A presentation given by Prof. David Croaker & Eunice Gribben at the CHA Cofnerence in October 2012, The Journey, in the 'innovations in supporting chronically unwell children, young people and their families' stream.

1. Peer support groups – what’s the
point?
A/Prof GDH Croaker MB BS FRACS FRCS
PhD
23rd October 2012

2. More is now expected…
 Diagnosis of
Hirschsprungs is
now earlier and
more reliable
than 50 years
ago.

3.  Many unexpected late sequelae of
• Infant conditions
• Infant GA
• Infant trauma

5. Communication
is often difficult.

6. Somethings are minor, but how does the
family know?
 Branchial remnants.
 Tag associated with an anal
stenosis.

7. Often the operation is the easy bit…

9.  The Prof of Orthopaedics at the University of New South Wales was quoted on ABC Radio National this weekend quoting from a recent study that showed that private orthopaedic patients
were less satisfied than public patients with their hip and knee replacements. He concluded that this reflected differing expectations in the two groups of patients.
 In paediatrics 30 years ago parents were grateful that in most instances the medical care of the day could deliver them an alive infant in cases where the child was born with a major
congenital defect, whether it be a problem like imperforate anus, or a problem with major structural heart disease for instance. Once the parent had possession of a live child, anything
else was a mere detail.
 Now a live child is expected, and the expectation for a normal life for that child is rising. How do we meet rising public expectations in the 21st century? How can we educate the public
about what is reasonable for them to expect? The
 From a surgical perspective, I started specialty training full-time in 1988. My recollection is that follow-up at that time usually did not go on for more than one year for uncomplicated
Hirschsprung disease. The published follow-up studies then and for a while afterwards tended to be the sort that boasted about the success rates of the particular publishing institution.
Generally the claimed complication rates were low, and claimed patient satisfaction rates were high.
 In the mid-90s Tony Catto Smith and John Hutson at the Royal Children's Hospital in Melbourne published a series of papers detailing long-term follow-up of Hirschsprung's disease
patients. The crucial factor about these studies was not simply that they were long-term (that had been done before) but that the actual interviews were carried out by a disinterested third
party. Unfortunately results were not as good as anyone had claimed before. This was not because the surgeons were second-rate, far from it. It was simply because the common surgical
understanding of patient experiences to that time was limited in many cases.
 During the next 10 years a number of other papers came out detailing different aspects of the long-term follow-up of paediatric surgical patients on whom we thought we had performed a
satisfactory restorative repair in the newborn period. One such was work from Scandinavia pointing out that in adulthood Hirschsprung disease patients had an approximately 1% risk of
a rare thyroid tumour. (Medullary thyroid cancer). Other cancers are also increased in that group. Who would have thought? The Scandinavian surgeons were able to do their study
because the population is relatively static, and the public health institutions allow good record-keeping. Such studies are difficult elsewhere in the world, and need all the help they can
get.
 Into this situation come the support groups.
 Alcoholics Anonymous is perhaps the prototype peer support group. This was founded in 1935 very much as a peer support network, although with the support of the Salvation Army. It is
still, as far as I know, the most successful way of treating chronic alcoholism.
 The Coeliac Society, open to all people with a medically documented case of coeliac disease, is one of the better known modern support groups. It was founded in 1968. Since then a
multiplicity of support groups have sprung up. Amongst these is our own "Bowel Group for Kids". There is an equivalent organisation in Victoria.
 What is the evidence for the role and effectiveness of these groups?
 Are these groups "on message" with the medical profession?
 How well informed of their leading lights?
 Is the demographic structure of the groups such that a fair bargain is struck between benefit to the members and support by the members?
 Is the membership overwhelmingly skewed towards those with more complicated conditions?
Or to those less satisfied with their medical practitioners? To those with psychological dependence problems?
Are members of support groups more or less likely to sue their treating practitioners?
 Do the groups indeed encourage an unhealthily dependent attitude?
 There are studies in the literature, but a Medline search this week of Hirschsprung's disease and peer support groups covering the period 1946 to October 2012 uncovered only three
references, one of them in French, and none being a systematic review of the effectiveness or role of support groups. Changing "Hirschsprung disease" for "anorectal malformation"