Interviews - L Eichenfield


USA



ABOUT YOUR OWN STRUCTURE :



  1. Puce How many children have today integrated the patient education programme in your department?

The program is open to all eczema patients at our clinics. We see an average of 350-400 patients per week and about 20% to 30% will have a diagnosis of eczema. Of these, about 10% will require specialized eczema care.

  1. Puce How many participants are there in the collective workshops and who are they (children, parents, other adults…)?

Usually any particular workshop will have approximately 12-15 participants.   Most are parents of pediatric atopic dermatitis patients, some of them adult or teenage patients.  Larger sessions have been held on occasion, with 30 to over 100 participants, for specialized discussions, family support groups, or community education.

  1. Puce Who are the educational staff for this programme (doctors, nurses, psychologists...)?

The programme is directed by a physician, with guest programme lectures provided by invited speakers, usually physicians from the Ezema Center team. The Eczema Center lead nurse offers separate information and hands-on teaching regarding skin care. The lead research nurse is available at each session to introduce ongoing research studies. Supportive nursing staff is available for in-clinic training and treatment, i.e., wet wraps.

The lead nurse also organizes family support group sessions, in affiliation with the National Eczema Association.

  1. Puce How many members of staff participate in this programme and what training, if any, do they receive?

Each member has special clinical expertise in the field of pediatric dermatology and specifically atopic dermatitis. There are five to six physicians in the “core team,” one lead registered nurse, one research nurse, as well as pediatric dermatology fellows.  Training is delivered internally by physicians, externally by attending appropriate meetings.

  1. Puce What are the principal aims of these workshops?

To increase understanding of the pathophysiology, clinical course and treatment options of atopic dermatitis.

To clarify common myths, misconceptions and controversies regarding eczema and eczema care including bathing (or not), steroid phobia, and the possible role of food allergy.

To make affected individuals and families understand the risks of under-treatment of AD and to feel comfortable with appropriate treatment regimens, thereby improving patient compliance and adherence.

To relate the newest research on AD and atopy; to describe ongoing research projects; to educate the attendees regarding Eczema Center activities, as well as to assist with recruitment of enrollment of appropriate patients.

  1. Puce Do you use educational support tools and if so can you describe them?

Yes.  Written hand-outs; written "care plans."  The Eczema Center has a very complete website, eczemacenter.org, with extensive educational material.  Video training modules are available through the website and in clinic rooms (accessed from the website).

  1. Puce Do private dermatologists participate in the Atopic school ?

They have not to date, likely due to constraints regarding required time commitment. Private dermatologists have the option to direct patients to the Center for additional education and care.

  1. Puce How is the link established between the Atopic school and the dermatologists and pediatricians in private practice?

The Eczema Center website has served as an important link for both pediatricans and dermatologists.

When patients have been formally evaluated at the clinic,  referring specialists and primary care physicians will receive a consultation note regarding the visit. They are made aware of recommendations including the suggestion for the patient to attend the eczema school.

Referring physicians have been included in Eczema Center mailings and other media contact.

  1. Puce How is your Atopic school funded?

Volunteer time dedicated by physicians and nursing staff.

Grant solicitation from pharmaceutical companies and private donors.

Rady Children’s Hospital has dedicated staff for assistance with administrative support of the center as well as for fundraising assistance.

  1. Puce Do you have contact with other patient education teams, particularly those teams working with Asthma or Food Allergies.

We work closely with the Allergy/Asthma and the Eosinophilic Esophagitis groups at our institution. Our lead nurse will arrange for other consulting services on an individual basis.


ABOUT PATIENT EDUCATION IN YOUR COUNTRY:


  1. Puce What role, if any, do parent associations/patient support groups, play in the Atopic schools?

Our parent support group is closely associated with our Eczema Center and both are associated with the NEA (National Eczema Association). The parent group will come forward with requests regarding special educational needs or venues.

  1. Puce What role, if any, do schools play in managing chronic skin disease?

They are an integral part in providing a support frame and reference institution as centers of excellence.

  1. Puce Do you have schemes like the PAI (in France this is an individualised adaptation project linking parents, children and teachers)?

The parent support groups provide invaluable information to address chronic health care issues related to eczema on an individualized basis and to facilitate close interaction between families, physicians and teachers.

  1. Puce Besides Atopic schools, is patient education developed for other pathologies in your country, and if yes, which pathologies are concerned?

Diabetes, and Asthma have the most well developed educational support systems in the United States.

  1. Puce Do you have official patient education recommendations/guidelines in your country?

No.  The American Academy of Dermatology's guidelines of care for AD are not prescriptive and are not an algorithm of care.

  1. Puce How many active education departments exist today in your country?

Three of which we are aware for AD/Eczema.

  1. Puce Are there particular organisations to train the staff in patient education? If not, where is the staff trained?

Staff training is performed internally and through attending pertinent meetings and training sessions.

  1. Puce How much do you invoice the whole education course?

All sessions are offered free of charge currently.  We are investigating the option of a system where attendance of the eczema school would become an integral and compulsory part of a patient visit at a flat rate reimbursement.

  1. Puce How much is the patient reimbursed by the health authorities?

The patient is currently not reimbursed any amount. We are looking however at a system where documented decrease in use of healthcare due to eczema school education would translate into a voucher or bonus system for the patient.



Merci L Eichenfield.

Prof. L Eichenfield


Dept. of Dermatology,

USA