Research project seeking individuals with SLE (aged 18+)

[Paul_Howard]

Ella Constantinides a student at University of Central Lancashire is researching 'the patient-practitioner relationship, and how trust in physician has an effect on self-reported Quality of Life and illness perception levels in SLE patients'.

Findings have repeatedly shown the importance of good patient-practitioner relationships in clinical practice, demonstrating improved patient outcomes (such as more effective interventions) if positive relationships are realised. However, there is little research surrounding the doctor-patient relationship in systemic lupus erythematosus (SLE). This educational research study aims to gather information on the doctor-patient relationship as well as additional factors such as patient trust levels in their primary SLE practitioner, patient quality of life and illness perception of SLE.

If you are aged 18+ and have a clinical diagnosis of systemic lupus erythematosus (SLE), then please consider taking part in this online questionnaire which should take between 15-20 minutes to complete. Your participation would be greatly appreciated.

For more information and to take part in the study, please click on the following link:

uclan.eu.qualtrics.com/jfe/...

[CRYSTAL11]

Hi Paul

Thanks for sending the questionnaire out. I have completed it as best I can. It has some very interesting questions regarding how I cope with SLE I surprised my self at times with the answers. I hadn’t realised just how affected I am with it.

[ecc_active in reply to CRYSTAL11]

Hi Crystal11, thank you for taking part. Your participation is much appreciated and I hope you did not find the questionnaire too distressing.

Many thanks again and best wishes.

Ella

[CRYSTAL11 in reply to ecc_active]

It’s certainly made me face some things. Which is good It has left me feeling emotional about things I have found it useful to see what needs working on. Thank you again for posting it x

[bleeny]

Done.

[ecc_active in reply to bleeny]

Thank you bleeny for your participation. Much appreciated.

[Apricot100]

Did it. Good luck.

I've been on a number of study trials for lupus - the questions were very familiar.

Will you share the results with us? X

Xx

[ecc_active in reply to Apricot100]

Hi Apricot100, thank you for participating in the study, and for your well wishes, it is much appreciated . The study was comprised of already established questionnaires (bar the final 3 qualitative questions) so it is very probable some of the questions are the same as ones you have completed.

I will be sending copies of the finalised report to anyone who would like one. You can request one by emailing me at [e-mail] - but I will also try to find a way to post the report online when it is completed, however, will need to check on protocol for this from the tutor in charge.

Thank you again for your support and wishing you all the best,

Ella Xx

[tabjw1]

Thank you very much for posting the Lupus questionare. It was an eye opener as to how I really view myself. I am happy I participated. Tab

[ecc_active in reply to tabjw1]

Hi Tab, Thank you very much for your participation and for your feedback. I’m glad you found it interesting. If you would like a copy of the finished report when it is completed, I’m more than happy to send a copy to you should you wish. Thank you again and best wishes, Ella

[tabjw1]

Thank you very much for posting the Lupus questionare. It was an eye opener as to how I really view myself. I am happy I participated. Tab

[thestorm]

We would love to know the questionnaire results or where the study may go from here, that our help truly mattered, as I took the study fully to heart. That its intentions are to better us and the future lives of people with SLE. Can we expect anything from this result. I would be exciting and very hopeful to know. Just wondering. Peace and blessings thestorm

[ecc_active in reply to thestorm]

Hi thestorm. Thank you very much for you interest and participation in the study, it is very much appreciated. As a patient with SLE myself, I can safely say that this research is being done with good intentions for both SLE patients and for the medical professionals involved in treating our complex illness, so we can assess the links and the interactions between the areas of interest (in this case, the patient-practitioner relationship & trust in physician levels on self-reported quality of life and self-reported illness perception). As this is an education piece of research, it cannot be promised that this study will be taken further, however, I will be sending the results and final paper to Lupus UK, who will then be free to use that information in any way they wish. I will also be sending copies of the paper to anyone who would like a copy so would be more than happy to do this if you would like one? Obviously, it would be wonderful if this research was taken further, although I cannot guarantee this. However, it may be useful for you to know that personally, I am (come September), training to become a Physician Associate. It is my aim in the future (if possible) to specialise in SLE care, at which point, the findings of this current research shall definitely be of benefit to clinical practice. I shall keep you updated on the findings and any interest the study gains going forwards.

Many thanks again and wishing you all the best.

Ella

[thestorm in reply to ecc_active]

Hi ecc-active, Thank you very much for your response. I would love for you to send me a copy, once it is done. Please let me know what I need to give you to obtain that report. Stay strong and well, you are on a great journey for epic things to come to you in your future!!! You will make a wonderful SLE Physician Associate, being at the forefront for all those with these very complex conditions. I wish you all the very best, and sending my peace, blessings thestorm

[ecc_active in reply to thestorm]

Hi thestorm, what a lovely message, thank you so much for those kind words. All I will need is your email address to send you a copy (feel free to pm it me for privacy if you feel more comfortable), or alternatively you can email me on [e-mail] and then I will send it to your used email address, whatever is better for you. The study report shall be finished by late August. Thank you again for your reply, it is so good to have such wonderful, supportive members of the Lupus community on this forum who work and help tirelessly in order to improve awareness and ultimately make outcomes better for patients. I hope I can do the community justice with this study and in my future work. Sending you the best of wishes also.

Ella

[thestorm in reply to ecc_active]

Hi ecc-active, You are very welcome, it is nice to know that people like you care so much, to move forward and make a difference. My e-mail address is [e-mail] I will look forward to it, and corresponding with you on your journey . Keeping the faith, peace, thestorm😊

[ecc_active]

Thank you to all who have shown interest and to those who have participated in the study. The study is now closed to new participants and shall no longer be available. If you are part way through the study, you will still be able to complete your participation.

Thank you all again for your support and participation.

Ella