A principal source of advice, support and information on psoriasis and psoriatic arthritis
A registered charity no: 1118192
A registered charity no: 1118192
TOPSO Study - Five European country study conducted in May 2003.
Psoriasis, the chronically relapsing disorder of the skin, affects 1.5% of the population of Europe and possibly 2.6% of the United States. Though not contagious, it is physically and psychologically very distressing. The condition is generally treatable with topical preparations, but compliance rates are known to be quite low.
InterPSO was a joint collaborative project which brought together a patient focus group, with participants from United Kingdom, France, Belgium, Germany and the Netherlands to initiate a topical treatments patient compliance study.
These patients responded that complying with topical treatment was difficult, more so than any previous research has suggested and that, though their treatments generally worked, patients badly need preparations that are easier to use and that are less unpleasant than they are now.
1,281 adult patients responded, nearly evenly among the five countries. The average age was 51.86 years, the French tending to be slightly older and the Germans slightly younger. The sex ratio, as it is in psoriasis generally, was nearly balanced, except for the UK, where men were only a third of the respondents. Most lived with other adults, most had children, and half considered themselves their children's primary carers. On average, a third of the respondents had university educations, but variability among countries was high. It corresponded roughly with self-assessment of the severity of condition: lower education generally meant harsher assessment.
Most patients had trouble with psoriasis on their scalps, elbows, and knees. Ears, nails, and backs were also common. Germans, for some reason, were 5 times less likely than any other population to report psoriasis on the backs of the pinna or auricle (outer part) of their ears. UK patients were more likely to have it on their nails than French or Belgian patients were. Each patient tended to have suffered psoriasis for about 25 years, and about 25% of cases were generalised or severe.
Most patients were prescribed corticosteroids, calcipotriol, or salicylic acid. Nearly negligible were retinoids, calcitriol, and tacalcitol. People on topical treatments who also chose alternative therapies tried sun-sea stays or baths about half the time, and oral remedies 38% of the time. About a third also tried phototherapy, and 36% tried complementary medicine, including vitamins, homoeopathic cures, acupuncture, and traditional Chinese medicine. Dermatologists did two-thirds of the prescribing of topical treatments overall, except in Britain, where GP’s wrote 60% of them.
Amazingly, 13% of survey patients used an alternative therapy instead of their topical prescriptions, and another 18% used no therapy of any kind. Without even considering patients who tried their prescribed therapy and refused to continue with it, this constitutes a startlingly enormous failure to comply. Why? We know that treatment takes a lot of time, money, and physical assistance. Three out of four patients say they need help from another person to carry out their treatment, and that that person is not available to help about a fifth of the time. Daily therapy, though it usually means only one application of topical preparation, appears to require 17 minutes a day overall, though this varies widely by country (25 minutes in Germany, 12 in Holland). It is not cheap, either. German patients spend on average 35 Euros a month on their local therapies for psoriasis, and British patients, at the other end of the scale, spend nearly 9 Euros; the overall mean is 21.97.
In practice, most patients finally did not comply with their prescriptions completely: only about 27% stayed the whole course. It was a little better in Germany, a little worse in France and Belgium, but the variation among countries was not significant. There was slight variation among users of the usual six topical substances. Oddly, there is no sign in any patient group that compliance worsened over time.
What did patients say about their treatments? 27% said their treatments didn't work well. Far more common, at 51 %, were answers that had to do with convenience: 26% felt their treatment took too long to rub in, 17% thought the process was too complicated or difficult, and 8% found the treatment 'too restricting'. And outweighing even these were the 73% of answers about unpleasantness, which contained the biggest single point of agreement of all: 29% disliked the stickiness enough to discontinue at least some applications; another 15% found the preparation irritating, another 15% said it had 'side effects', 8% disliked the smell, and 6% disliked the texture. 7% responded spontaneously, in free-text answers, that they only applied their medication when they thought they needed it.
The problem of compliance, that ought to be a straightforward function of whether or not a given treatment works, is actually a matter of agreeableness and time required. It was very useful, and the study was novel in this respect, to focus directly on the patient's point-of-view.
First published 2004: Skin ‘n’ Bones Connection, Issue 19, p19. ISSN: 1475-4134