Your chance to be part of the solution...: Surveys

We have a continual process of data gathering, which we do via all the processes of joining PAPAA. This  largely unpublished data gives us a view of our demographic group, therefore allowing us to tailor our material to suit.

We also have been surveying people with psoriasis and psoriatic arthritis since our early origins for more than 20 years. Those rich qualitative data provides us with a real life view and also helps us to put forward a collective consensus of what it is really like to live with both psoriasis and psoriatic arthritis.

You can be part of that process and also know that whatever you say will be confidential and anonymous, it’s up to you.

We have now developed the PAPAA survey, which aims to build and add to those previous data results.

The sections: 

We will not ask for your name or contact details, all submission will therefore be anonymous. There are a few compulsory sections, to help us understand who we represent.  

About you: The answers you give will help us to raise the true impact and how it affects real people, by providing a UK wide picture. 

Quality of life: In order to give the true effect of psoriasis and or psoriatic arthritis, we would like to know how it affects your day-to-day life.

Research priorities: As someone who lives with a chronic disease, you have a unique insight into the issues that are important to you. We would like to gather these issues together and create a list of priorities that are important to people with psoriasis and psoriatic arthritis.

Final comments: Your chance to say anything else not covered in the other sections, these comments will help us to provide rich information that has context and is meaningful.

Be part of the bigger picture and get your opinions and views logged, so we can tell those who need to know exactly what you and others with these conditions actually feel, think and want to be said.

Data from the PAPAA survey has been used in submissions to support the patient perspective in health technology assessments, with the National Institute for Health and Care Excellence (NICE), the Scottish Medicines Consortium (SMC) and the All Wales Medicines Strategy Group (AWMSG).

Complete the survey

This opportunity is now closed

Activity title

PREDICT - Psoriatic Arthritis Recognising Early Disease Indicators Conferring Treatment response

Organisation or institution

University of Oxford

Main study contact

Dylan McGagh

Public contact details

Email: dylan.mcgagh@ndorms.ox.ac.uk or through QR code registration

Description of activity

We are looking for people to join our patient partner group for the PREDICT study. This study will investigate whether blood tests can predict which patients will respond to different treatments. This study will also test the use of digital tools such as smartwatches and apps to capture more about how patients with psoriatic arthritis feel and function in response to different treatments. We want to gather the perspectives of individuals with psoriatic arthritis on our overall study aims, gain some feedback on our study specific app and more broadly ask on perspectives of using digital measures to capture information on symptoms and mobility.

Recruit criteria

Individuals with a diagnosis of psoriatic arthritis

Where?

Remote session on Teams / Zoom

Time commitment

1.5 hour online session

Closing date

10/12/2023

Funder/sponsor

British Psoriatic Arthritis Consortium (Brit-PACT)

Please note:

• This study is an external opportunity and not connected to PAPAA in any form.
• PAPAA has not received any payment for placing this notice.
• Postings in this section are to provide information about opportunities and should not been seen as an endorsement or recommendation to take part.

This survey is now closed

Activity title

The Living with a LTC Study

Organisation or institution

King's College London

Main study contact

Dr Annie Jones

Public contact details

LTC-Study@kcl.ac.uk

Description of activity

We know that psychological distress (anxiety and depression) is common in and experienced differently by people living with long-term health conditions, such as psoriasis. Being able to better measure and understand how people living with a LTC experience psychological distress would allow us to provide interventions specifically tailored to the challenges of living with a LTC and therefore provide the most appropriate support for these people. We have developed a questionnaire and would like to test it. Taking part involves completing 2 short online surveys (10 minutes; 5 minutes), a week apart. Participants have the option of being entered into a prize draw to win 1 of 5 £100 Amazon vouchers.

Recruit criteria

People >18 in the UK who have a diagnosis of a physical long-term condition (e.g., psoriasis, psoriatic arthritis and others)

Where?

Remote

Time commitment

15-25 minutes

Closing date

31/01/2024

Other information

Please contact annie.s.jones@kcl.ac.uk; natasha.seaton@kcl.ac.uk and emma.jenkinson@kcl.ac.uk with any questions.

Funder/sponsor

King's College London

Please note:

• This study is an external opportunity and not connected to PAPAA in any form.
• PAPAA has not received any payment for placing this notice.
• Postings in this section are to provide information about opportunities and should not been seen as an endorsement or recommendation to take part.

This opportunity is now closed

Organisation or institution: Channel 4

Main study contact: Codie Lu Scott

Public contact details: codieluscott@fivemilefilms.co.uk

Description of activity: Could you provide a loving home for a rescue dog? The Channel 4 series, The Dog House is looking for couples, individuals, friends and families who are seriously considering bringing a rescue dog into their lives and are willing to share their reasons for doing so.

Recruit criteria: People who would like to adopt a dog and are open to sharing their reason why. We are particularly looking to share how much a difference a dog can make to people’s mental health whilst living with a skin condition. We understand that with a skin condition come some serious anxieties. Studies have shown that even small interactions with dogs cause the human brain to produce oxytocin, a hormone often referred to as the “cuddle chemical.” Oxytocin increases feelings of relaxation, trust, and empathy while reducing stress and anxiety. Where?

Location: Woodgreen Pets Charity

Time commitment: 2 days approx.

Closing date: 23/03/23

Link to apply

This study is now closed

Have you ever wondered whether what you eat affects your psoriasis? This is one of the commonest questions that people with psoriasis have. At present, there is not enough high-quality research to be able to be able to make specific recommendations. To help answer this question, we have launched The APPLE Study!

This is the first study of its kind in the UK. We aim to find out if there are certain diet and lifestyle patterns that are more commonly found in people with more severe psoriasis compared with those with milder forms. This research will help us understand if dietary changes could be helpful for psoriasis management in the longer term.

Participation in The APPLE Study will involve the completion of:

• a multiple-choice survey on life-style patterns, psoriasis, and diet
• a diet diary

The APPLE Study will take place online. You will need internet connection to access the online survey and diet diary.

We strongly encourage you to complete The APPLE Study on a laptop, or desktop computer as some of the questions will not display properly on a smartphone. 

On completion of The APPLE Study you will receive: 

• a nutrition report
• an invitation to attend a Webinar on “A Guide to Nutrition & Psoriasis” by Consultant Dermatologist, Dr Thivi Maruthappu

Eligibility requirements

• Adult (18 years of age or older)
• A diagnosis of psoriasis by a healthcare professional
• UK resident
• Fluent in English

Contact Information

Email: dietandpsoriasisproject@kcl.ac.uk.

Instagram: the_apple_study

This opportunity is now closed

Activity title

Exploring the role of diet in the management of psoriasis: Dietary behaviours, perceptions and self-reported skin outcomes of people with psoriasis

Organisation or institution

The University of Hertfordshire, Nutrition and Dietetics Department

Main study contact

Poppy Hawkins: p.hawkins@herts.ac.uk

Public contact details

Email - Poppy Hawkins: p.hawkins@herts.ac.uk

Description of activity

We are investigating dietary habits in people with psoriasis and how this impacts their symptoms and long-term management of their condition. We also want to understand more about which diets people with psoriasis are trying, and where they go for information, and experiences. Little research has been done in this area. By taking part in this study, you will be helping us to understand how best to support people with psoriasis, in the absence of clear dietary guidance. This is an anonymous online questionnaire which will take about 25 minutes to complete. This study has been approved by The University of Hertfordshire Health, Science, Engineering and Technology Ethics Committee with Delegated Authority, reference: aLMS/PGR/UH/05068(1).

Recruit criteria

People who have been diagnosed with psoriasis, over the age of 18 years old, can read, write and speak English fluently and live at a UK address (but not in an institution)

Where?

Remote - Online questionnaire. There is an option to do it over the phone if someone is unable to do it online. Just contact Poppy Hawkins (p.hawkins@herts.ac.uk).

Link to questionnaire

Time commitment

An estimated 25 mins

Other information

Other researchers involved. Supervisor, Dr Rosalind Fallaize (r.fallaize@herts.ac.uk), Dr Kate Earl (k.earl@herts.ac.uk) and Dr Athanasios Tektonidis (a.tektonidis@herts.ac.uk); each of which have extensive experience in large nutritional studies, epidemiology, and clinical nutrition. Those who complete the questionnaire will be given the option to participate in a further diet and psoriasis study, if they wish to.

Funder/sponsor

This is being done as part of a QR-funded PhD Studentship, titled ‘The role of diet in the management of psoriasis’ 2021-2024. At the University of Hertfordshire.