Peer support groups – what’s

the point?

A/Prof GDH Croaker MB BS FRACS FRCS PhD

23rd October 2012

More is now expected…

Diagnosis of Hirschsprungs is now earlier and more reliable than 50 years ago.

Many unexpected late sequelae of • Infant conditions• Infant GA• Infant trauma

Communication is often difficult.

Somethings are minor, but how does the family know?

Branchial remnants.

Tag associated with an anal stenosis.

Often the operation is the easy bit…

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" revealed no papers.

A paper in Paediatrics published this year on ""Experience of families with trisomy 13 and 18 in social networks", sent questionnaires to 503 patients' families. Responses reported in the abstract were interesting. Half reported being told that their child "would be a vegetable", or "would ruin their family". Half reported that care of the child was harder than expected. Surprisingly, 97% reported that their child was "happy". The authors concluded that parents who engage with support groups may find an alternate positive description of their children with trisomy 13 or 18. Certainly an alternative to "a vegetable who would ruin their family" seems desirable.

A study from Holland published in the Journal of Adolescent Health in 2006 studied adolescent children with chronic life-threatening diseases including not only Hirschsprung disease and anorectal malformations, but also chronic renal failure, and childhood cancers. They reported "these children achieve significantly fewer milestones and at a later age than their peers" looking at the social, psychological and psychosexual aspects of life for these children. They concluded by recommending harm minimisation by encouraging social contact and autonomy - goals that I think peer support groups are well placed to assist with.

The Coeliac Society previously mentioned is, on a quick Medline search, involved in a number of long-term follow-up studies. As early as 1985 a study published in the Archives of Disease in Childhood ("Parents understanding of coeliac disease and diet.") Stated that "Membership of the Coeliac Society correlated with both parental understanding and dietary compliance".

So it seems, that at least for some conditions, it is not just that the family feel better when they're plugged into a peer support network, but that our medical expert message is also better absorbed. There is however little work on the systematic understanding of the dynamics of these groups, nor how they function in other disease contexts.

Eunice Gribben is addressing these questions in her Ph.D. thesis. We hope that this work will also support long-term follow-up studies in the relevant conditions, as well as providing useful evidence on the role of disease peer support groups in general.