Pushing policy makers to take skin diseases seriously

VANCOUVER – Dermatologic thought leaders worldwide have embarked upon a major international initiative aimed at making better skin health a strategic priority for politicians, health policy makers, and the general public.

The Grand Challenges in Global Skin Health Initiative, launched by the International League of Dermatological Societies, is aimed at proving the true value of dermatologic care. The impetus is a strong feeling within the dermatology community that skin diseases got a raw deal in the landmark Global Burden of Disease Study.

The Global Burden of Disease Study (Lancet. 2015 Jun 7. pii: S0140-6736(15)60692-4), funded by the Bill and Melinda Gates Foundation on behalf of the World Health Organization, ranked skin diseases far down on the list of conditions causing lost disability-adjusted life-years (DALYs) worldwide.

But DALYs as an indicator of disease burden tell only part of the story. They have a major limitation: “In the DALY concept, patients are never asked questions about the weight of their burden of disease; those questions are directed to health care professionals and the general public,” Dr. Matthias Augustin explained at the World Congress of Dermatology.

“We need to understand this because governments and other payers make use of these Global Burden of Disease data. We as dermatologists need to make sure that we are not underrepresented in the overall discussion,” said Dr. Augustin, professor of dermatology at the University of Hamburg-Eppendorf (Germany) and director of the Institute for Health Services Research in Dermatology and Nursing Professions at the university.

The true measure of value in health care needs to include patient-reported outcomes, and the Global Burden of Disease Study didn’t do that, he continued.

“There is a discrepancy between objective and subjective outcomes. Many papers have shown that the relationship between PASI scores representing severity of psoriasis and patient quality of life is very loose, if there’s any at all,” the dermatologist said.

Recently an international team of researchers analyzed the world’s published DALY data for psoriasis and concluded that this common skin disease ranked a mere 144th out of 176 conditions in this domain. The investigators argued that this metric vastly underestimates the true disease burden of psoriasis (Br J Dermatol. 2015 Jun;172(6):1665-8).

The investigators noted that the Global Burden of Disease Study treats psoriasis as a single entity consisting of psoriatic skin disease without taking into account the association with psoriatic arthritis, the increased risk of cardiovascular disease, or the enormous psychosocial sequelae of this disfiguring disease, which typically lasts for more than 40 years, or more than 60 years in individuals with childhood-onset psoriasis.

Dr. Augustin and the other founders of the Grand Challenges in Global Skin Initiative recently laid out the case for the project (Br J Dermatol. 2015 Jun;172(6):1469-72). The plan is to develop evidence-based proof of the added value of dermatologic care.

“Innovation in health care delivery has frequently ignored the needs of the whole patient and the populations in which they live. Skin disease has been a casualty in this respect,” the authors wrote. “However, perhaps the most powerful contribution to making skin health a realizable objective over the next 25 years is the recognition, among leaders of governments and nongovernmental organizations, that it is a realistic, affordable, and achievable goal, integral to future health and research strategies.”

The initial round of projects being undertaken through the initiative includes creation of a global psoriasis atlas, documentation of the adverse impact of UV exposure on outdoor workers on every continent, a centers-of-excellence program regarding aging skin, and a project addressing scabies – “a huge problem worldwide, and especially in developing countries,” Dr. Augustin noted.

“We intend to communicate our message to decision makers and let the patients speak; it’s in our common interest,” he said.

He reported having no relevant financial conflicts.

[email protected]

VANCOUVER – Dermatologic thought leaders worldwide have embarked upon a major international initiative aimed at making better skin health a strategic priority for politicians, health policy makers, and the general public.

The Grand Challenges in Global Skin Health Initiative, launched by the International League of Dermatological Societies, is aimed at proving the true value of dermatologic care. The impetus is a strong feeling within the dermatology community that skin diseases got a raw deal in the landmark Global Burden of Disease Study.

The Global Burden of Disease Study (Lancet. 2015 Jun 7. pii: S0140-6736(15)60692-4), funded by the Bill and Melinda Gates Foundation on behalf of the World Health Organization, ranked skin diseases far down on the list of conditions causing lost disability-adjusted life-years (DALYs) worldwide.

But DALYs as an indicator of disease burden tell only part of the story. They have a major limitation: “In the DALY concept, patients are never asked questions about the weight of their burden of disease; those questions are directed to health care professionals and the general public,” Dr. Matthias Augustin explained at the World Congress of Dermatology.

“We need to understand this because governments and other payers make use of these Global Burden of Disease data. We as dermatologists need to make sure that we are not underrepresented in the overall discussion,” said Dr. Augustin, professor of dermatology at the University of Hamburg-Eppendorf (Germany) and director of the Institute for Health Services Research in Dermatology and Nursing Professions at the university.

The true measure of value in health care needs to include patient-reported outcomes, and the Global Burden of Disease Study didn’t do that, he continued.

“There is a discrepancy between objective and subjective outcomes. Many papers have shown that the relationship between PASI scores representing severity of psoriasis and patient quality of life is very loose, if there’s any at all,” the dermatologist said.

Recently an international team of researchers analyzed the world’s published DALY data for psoriasis and concluded that this common skin disease ranked a mere 144th out of 176 conditions in this domain. The investigators argued that this metric vastly underestimates the true disease burden of psoriasis (Br J Dermatol. 2015 Jun;172(6):1665-8).

The investigators noted that the Global Burden of Disease Study treats psoriasis as a single entity consisting of psoriatic skin disease without taking into account the association with psoriatic arthritis, the increased risk of cardiovascular disease, or the enormous psychosocial sequelae of this disfiguring disease, which typically lasts for more than 40 years, or more than 60 years in individuals with childhood-onset psoriasis.

Dr. Augustin and the other founders of the Grand Challenges in Global Skin Initiative recently laid out the case for the project (Br J Dermatol. 2015 Jun;172(6):1469-72). The plan is to develop evidence-based proof of the added value of dermatologic care.

“Innovation in health care delivery has frequently ignored the needs of the whole patient and the populations in which they live. Skin disease has been a casualty in this respect,” the authors wrote. “However, perhaps the most powerful contribution to making skin health a realizable objective over the next 25 years is the recognition, among leaders of governments and nongovernmental organizations, that it is a realistic, affordable, and achievable goal, integral to future health and research strategies.”

The initial round of projects being undertaken through the initiative includes creation of a global psoriasis atlas, documentation of the adverse impact of UV exposure on outdoor workers on every continent, a centers-of-excellence program regarding aging skin, and a project addressing scabies – “a huge problem worldwide, and especially in developing countries,” Dr. Augustin noted.

“We intend to communicate our message to decision makers and let the patients speak; it’s in our common interest,” he said.

He reported having no relevant financial conflicts.

[email protected]

VANCOUVER – Dermatologic thought leaders worldwide have embarked upon a major international initiative aimed at making better skin health a strategic priority for politicians, health policy makers, and the general public.

The Grand Challenges in Global Skin Health Initiative, launched by the International League of Dermatological Societies, is aimed at proving the true value of dermatologic care. The impetus is a strong feeling within the dermatology community that skin diseases got a raw deal in the landmark Global Burden of Disease Study.

The Global Burden of Disease Study (Lancet. 2015 Jun 7. pii: S0140-6736(15)60692-4), funded by the Bill and Melinda Gates Foundation on behalf of the World Health Organization, ranked skin diseases far down on the list of conditions causing lost disability-adjusted life-years (DALYs) worldwide.

But DALYs as an indicator of disease burden tell only part of the story. They have a major limitation: “In the DALY concept, patients are never asked questions about the weight of their burden of disease; those questions are directed to health care professionals and the general public,” Dr. Matthias Augustin explained at the World Congress of Dermatology.

“We need to understand this because governments and other payers make use of these Global Burden of Disease data. We as dermatologists need to make sure that we are not underrepresented in the overall discussion,” said Dr. Augustin, professor of dermatology at the University of Hamburg-Eppendorf (Germany) and director of the Institute for Health Services Research in Dermatology and Nursing Professions at the university.

The true measure of value in health care needs to include patient-reported outcomes, and the Global Burden of Disease Study didn’t do that, he continued.

“There is a discrepancy between objective and subjective outcomes. Many papers have shown that the relationship between PASI scores representing severity of psoriasis and patient quality of life is very loose, if there’s any at all,” the dermatologist said.

Recently an international team of researchers analyzed the world’s published DALY data for psoriasis and concluded that this common skin disease ranked a mere 144th out of 176 conditions in this domain. The investigators argued that this metric vastly underestimates the true disease burden of psoriasis (Br J Dermatol. 2015 Jun;172(6):1665-8).

The investigators noted that the Global Burden of Disease Study treats psoriasis as a single entity consisting of psoriatic skin disease without taking into account the association with psoriatic arthritis, the increased risk of cardiovascular disease, or the enormous psychosocial sequelae of this disfiguring disease, which typically lasts for more than 40 years, or more than 60 years in individuals with childhood-onset psoriasis.

Dr. Augustin and the other founders of the Grand Challenges in Global Skin Initiative recently laid out the case for the project (Br J Dermatol. 2015 Jun;172(6):1469-72). The plan is to develop evidence-based proof of the added value of dermatologic care.

“Innovation in health care delivery has frequently ignored the needs of the whole patient and the populations in which they live. Skin disease has been a casualty in this respect,” the authors wrote. “However, perhaps the most powerful contribution to making skin health a realizable objective over the next 25 years is the recognition, among leaders of governments and nongovernmental organizations, that it is a realistic, affordable, and achievable goal, integral to future health and research strategies.”

The initial round of projects being undertaken through the initiative includes creation of a global psoriasis atlas, documentation of the adverse impact of UV exposure on outdoor workers on every continent, a centers-of-excellence program regarding aging skin, and a project addressing scabies – “a huge problem worldwide, and especially in developing countries,” Dr. Augustin noted.

“We intend to communicate our message to decision makers and let the patients speak; it’s in our common interest,” he said.

He reported having no relevant financial conflicts.

[email protected]