Psoriasis support groups augment doctors' care, satisfy patient needs

February 1, 2006

National Report — Dermatologists can help psoriasis patients to take charge of their disease by encouraging them to attend support groups.

National Report - Dermatologists can help psoriasis patients to take charge of their disease by encouraging them to attend support groups.

To discover the benefits of psoriasis support groups, Dermatology Times interviewed Charlene Berger, R.N., a dermatology nurse and support group leader in Boca Raton, Fla.; David Bruce, a patient with psoriasis and psoriatic arthritis and support group leader in Dallas; and Pam Field, vice president of operations for the National Psoriasis Foundation.

Reasons to attend

"A lot of people in my group had never met another person with psoriasis, and it's often the very first time they've talked about it. They usually hide their disease and suffer in private," Mr. Bruce says.

By attending meetings, people also create relationships that extend outside of the group, Mr. Bruce adds.

"A group member about to start a new treatment may meet someone who has been on that therapy; then they talk about the new treatment outside the group."

Twelve to 18 people regularly attend Mr. Bruce's meetings, which are held once a month in a room donated by a medical center. Meetings typically last one and one-half to two hours.

Support group meetings often have guest speakers. At Mr. Bruce's meetings, dermatologists and (dermatologic or rheumatologic) nurse practitioners tell members how to live with psoriasis and arthritis and discuss the current treatments.

Catering to different interests

"A lot of people are interested in holistic approaches - mind and body and nutrition - and we've had speakers on those topics too," Mr. Bruce says.

A dermatologist often attends meetings led by Ms. Berger.

"Patients tell him all their complaints, mainly that their doctors don't listen to them," Ms. Berger says. "Our dermatologist stays as long as the members want him to."

People who care for others with psoriasis also attend meetings, according to Ms. Berger.

"A lot of couples (one member with psoriasis) come together," she says. "Members sometimes just want to bring up emotional issues within the boundaries and safety of the group. If someone has a deep-rooted problem, he or she speaks to me privately and I refer them to a qualified professional."

Ms. Berger does not allow solicitors to attend support group meetings.

"If a representative approaches me with a product I feel may interest the group, I allow him or her to leave me a brochure and I present it to the group," she says.

Twelve to 15 people regularly attend Ms. Berger's meetings, which are held once a month, October through May, in a room provided free of charge by a medical center. Up to 40 people may come for a guest speaker. Ms. Berger's meetings typically last one hour or longer.

Addressing needs of patients

Mr. Bruce and Ms. Berger often receive calls from members who have given up hope with their disease.

"Often it's a family member calling about another family member contemplating suicide over psoriasis," Mr. Bruce says. "That's happened three times this year. Usually it's a long-time sufferer who sees no light at the end of the tunnel and is not informed of the new therapies. I tell the person how other group members deal with their disease and that there is hope. I also have dermatologists who will see these people very quickly."

According to Mr. Bruce, people with psoriasis most often complain about the general discomfort of their disease.