Psoriatic health information delivery survey (PHIDS)

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Towards the end of 2006 the PAA carried out a survey to gauge the views of people registered with the PAA about new media, communication and information delivery.

124 people completed the questionnaire

Female = 88

Male = 36

Age range 26 - 66+

Of the 124 respondents 91% suffer from some form of psoriatic arthritis and 85% of the respondents have some form of psoriasis.
46% of those who completed the survey work. The remaining (Fig 1) 32% are retired, 13% are permanently sick or disabled, 6% are looking after home or family, 1% are studying and 2% are not employed for other reasons.

88% of respondents are taking medication for either psoriasis or psoriatic arthritis and of those just under 50% are taking methotrexate.
58% of respondents are taking medication for another condition and of those that responded 42% are taking medication for blood pressure problems.
When asked what information people have found most helpful from the PAA (Fig 2) , 82% found the skin ‘n’ bones connection journal the most helpful, 73% found the leaflets most helpful, 5% the conference and 4% have found the telephone helpline the most helpful

When asked how people would like to receive future PAA information (Fig 3) 90% would like to continue to receive it by post, 25% would like to receive it by e-mail and 23% would like to download it directly from a website.

76% of respondents have access to a computer and of these 76% are using Windows XP®. 95% have access to the internet with 77% having a broadband connection.
68% or respondents with an internet connection access information relevant to their condition via the internet and just over 50% think the information available is very good. The respondents have more confidence in health information obtained from charitable and NHS sites with least confidence in information obtained from chat rooms.
37% download information on a monthly basis. Most peoples requirements for an ideal website are regular updates and easy to use.
Only 18% of people would be prepared to pay for downloading information.
16% of respondents subscribe on-line and 48% purchase products on line with over half purchasing monthly.
58% of people are happy for information sent to be identified as coming from the PAA.
Most people who have subscribed on line before have lapsed the subscription because of on line security issues or because the product/service is no longer useful or needed.
Nearly half of those respondents who purchase on line expect products to be discounted, they expect to receive more special offers and they find on line purchasing more convenient.
24% of respondents felt that they would be pressurised into giving if they subscribed to a voluntary organisation. Most of these thought they would be pressurised through constant appeals.
The respondents were asked what services they would expect to access from a charitable service provider.
Nearly 80% would expect to receive free information on health related topics with just over 70% expecting telephone support. (Fig 4)

41% of respondents would consider a distance learning course
Of those respondents:
All would use it to learn more about their condition for personal use. All would use it to learn more about coping/ mechanisms/strategies
37% would use the course to become a tutor/educator
36% would use the course to enhance their work
70% would prefer short bite size modules
45% of respondents understand the concept of virtual distance learning
41% of respondents would enrol for such a course if it was free and 26% would be prepared to pay
83% of respondents use hospital services.
Of these respondents 60% say their medical team take into account their other illnesses with regards to treatments, 78% say their dermatologist/rheumatologist communicates with their other health care providers and 95% felt their GP was happy to refer them on.

Most people are monitored by the hospital with 90% using NHS services. 30% have private health care insurance

75% feel that their illness affects their family unit.
60% feel their hospital department provides them with enough information about their conditions and 78% feel they are provided with enough information regarding their treatment.
99% feel that their hospital appointments are made at convenient times for them.
36% take time off from employment for medical appointments but all of these say that their employer understands and is sympathetic to this time off.
27% have experienced job discrimination due to their illness.

Of the respondents that use hospital services they felt their health care was:

Very good - 33%

Good - 35%

Satisfactory -25%

Poor - 6%

Very Poor - 1%

Of those that answered the questions if you could tailor make healthcare systems what would you do? 41% said they would like more consultation time.
13% of respondents have been prescribed anti-tnf biological therapies