Quality of life score

[Turnedlight]

(Please move if it's not in the right place)

I have a beef about the quality of life questions, and I'd be interested to know who wrote them, is there a standard in the uk or are they individual to the hospital? I guess I would have to ask them.

My problem is, they ask if you work, and if you work, how does psoriasis affect you at work.
But there's no way of saying you gave up your job in a primary school because you have p and it got too much with all the colds and bugs going around the school and the lack of sleep from the itchy skin etc.

[jiml]

I have never had one filled out for me and never been asked how it affects my quality of life so can't offer and help
But Fred did post this
Dermatology Life Quality Index (DLQI)

[jiml]

But reading the link I see your beef TL it only deals with the last week which is a pointless exercise as you have said psoriasis has far wider reaching effects than just the last week

[Turnedlight]

Well, because because I don't currently work the score goes down so it looks as though I'm not as urgent a case etc but I do find it makes it more of a problem to go for the sorts of jobs I'd be going for.

Last week I saw an ad for a part time receptionist at the doctors surgery but then I thought, if I'm going on Stelara is that really the most sensible thing to do? Plus people eye my arms and neck with suspicion..

These things can't easily be quantified though, so they become unimportant to the derm.

[jiml]

Well, because because I don't currently work the score goes down so it looks as though I'm not as urgent a case etc but I do find it makes it more of a problem to go for the sorts of jobs I'd be going for.

Last week I saw an ad for a part time receptionist at the doctors surgery but then I thought, if I'm going on Stelara is that really the most sensible thing to do? Plus people eye my arms and neck with suspicion..

These things can't easily be quantified though, so they become unimportant to the derm.

They are important factors in your quality of life and should be considered

They are not covered by the form and little wonder you were told you shouldn't have been offered Stelara. If your score was low .

There should be a point where it allows you to add your comments to be taken into account

[Fred]

I see Jim has pointed you to my thread and you now have the answers. But to answer who wrote it I have spoken to the authors of the DLQI, Professor A Y Finlay and Dr G K Khan when I asked for permission to use it here and they are very nice people.

I think in defence of the questions they have to draw the line somewhere. It is designed to give dermatologists an idea of how your life is effected by psoriasis, it's up to us the patient to give the answers to try and help paint that picture for them. I suppose the last week is the best to judge as it is the most likely to give a good picture.

I no longer do one unless the trainee doctors want to play with me as I find it unimportant to me. But I could be lucky in that I get on very well with my dermatologist and she understands me, I can talk to her of a particular problem and she will discus it from there. But the DLQI does at least give them something to go on, and when they ask the question about work you could explain a bit further and they can add notes beside the box ticked if they think it is relevant. (When I used to do one they often made remarks next to the answer).

There is a thread somewhere suggesting it's time for a change. Hang on .......................................... Here: Newer measure of psoriasis severity is needed.

I will move this to Psoriasis And Psoriatic Arthritis Topics as it's better suited.

[Turnedlight]

Thank you, I will bear it in mind if I have it done again. It was a nurse that did the questions and the derm only came in briefly, so I didn't get long with her, only enough for her to tell me briefly about the drug. But the nurse was very nice and I could have elaborated if I'd thought to at the time! It was my first one too.

[Fred]

Thank you, I will bear it in mind if I have it done again. It was a nurse that did the questions and the derm only came in briefly, so I didn't get long with her, only enough for her to tell me briefly about the drug. But the nurse was very nice and I could have elaborated if I'd thought to at the time! It was my first one too.

TL you are welcome to print a copy off from here: https://psoriasisclub.org/images/DLQI.JPG and take it in with you to your next appointment.

*I have been given permission to use this on Psoriasis Club by the authors and let our members use it.

[Will20]

Had an assessment for both at the Dermatology Clinic on 19/7/2018 = PASI 24.2 and DLQI 22.

[JohnB]

Chucking my two Pennyworth, a week is irrelevant. A month would be far better..
Last week was good my score would be close to zero.
A months ago it would have been a completely different story.