Three years ago a joint task force of the IPPF comprised of expert members of our Medical Advisory Board, Janet Segall (IPPF Founder) and Centric Health Resources (a Missouri based company dedicated to improving the quality of life for people nationwide with rare, orphan, ultra-orphan, and chronic genetic disorders), conceived and developed a Health Management Program (HMP) with the goal of improving illness experience by providing patients with educational resources, personal support and improved access to doctors and medicines. How did they decide to make all that happen?
The model looks like this: Trained and experienced Peer Health Coaches (PHCs) perform
an initial lengthy survey about a person’s current state of disease — are you a newcomer just getting control, or a long-timer who is getting more flares, or are you celebrating REMISSION!? What medications are you taking? And so on. Then each person has the opportunity to discuss specific questions — what are the side effects of Dapsone, for example, or what can I apply locally to ease mouth blisters and sores? Finally, PHCs send you any information that might help you move forward to making good choices in your best care such as nutritional info, the importance of monitoring your bones, or a list of expert P/P doctors in your area.
The key ingredient is PERSONALIZED education with the support and “touch” of a PHC. Since launching this model, we have enrollment and collected data on 127 people.
What have we learned and accomplished?
Well the basics show that of those surveyed, 58% were diagnosed with pemphigus vulgaris, 11% mucous membrane pemphigoid, 15% pemphigus foliaceous, 15% bullous pemphigoid and 1% paraneoplastic pemphigoid. The majority of people participating in the HMP enrolled with recent diagnosis, 2 years or less.
Molly Stuart, CEO of the IPPF, says that this tracks what is reflected in patients contacting the IPPF. At least 60% of new contacts are people who have been recently diagnosed and are trying to learn enough to insist on quality care.
To begin to look at trends, we focused on data from those who had participated with the HMP in the initial survey and had done at least two follow-up assessments; a total of only 31 out of 127. Nevertheless, it is encouraging to see what is revealed.
Knowledge Improvement: There was a significant IMPROVEMENT in illness knowledge. In fact, NO patients continue to rate their knowledge of P/P “poor” or “very poor” after participating in the HMP process over this time.
Ability to Manage Illness: Again, people felt that they had significantly improved in managing their illness. Here also, NO patients continue to rate their ability to manage their illness as poor or very poor, unlike before they participated.
There was also a significant improvement in knowledge regarding their medications. Thirteen percent of those surveyed stated that they started the program with what they considered their own Poor/Very Poor understanding of meds and at this point, NO ONE reports such lack of knowledge about them.
Another measure of understanding is in the area of what doctors call “compliance” (i.e., willingness and ability to take the medicines prescribed). This also improved significantly.
When people first started the HMP, over 60% reported that they had “often been bothered by feeling down, depressed, or hopeless” in the previous month. Upon further participation in the HMP, this was reduced by more than half — to slightly over 25% still feeling that way. This is where the work of local support contacts and Peer Health Coaches really shines. Email Molly (firstname.lastname@example.org) or Marc Yale (email@example.com) to find out how you can serve the P/P Community as a PHC.
Finally, we see that patients are also getting better care related to general health promotion and disease prevention. More patients got bone density scans and more patients monitored their blood pressure. They also better understand the detrimental risk factors for patients on many of these medicines.
Increased patient confidence! Increased patient knowledge! Increased medication compliance! Improved preventive and routine testing! Better quality of life! NOW you see why we called it “Health Management”!
If you want to improve your health experience by participating in these ongoing surveys and being teamed with a Peer Health Coach, visit www.pemphigus.org/hmp or contact Marc at firstname.lastname@example.org. Strong evidence that HMPs really do improve health make this an important part of the services that the IPPF provide for patients: knowledge, health, support and hope.