Survey: From diagnosis to today: Understanding the patient journey in neurological conditions

[Andy]

Probably not a recommendation, I haven't taken the survey.

From diagnosis to today: Understanding the patient journey in neurological conditions

To find out more about the study, please continue reading below.

Understanding adjustment in neurological conditions - Online Questionnaire Study

PARTICIPANT INFORMATION SHEET

Study aims - We are looking to explore participants’ perspectives of people living with various neurological conditions to better understand adjustment to diagnosis and the role of psychological support in patient journey.

Why have I been contacted? - We have contacted you because you are living with a neurological condition, and we would like to know about your experiences of living with your diagnosis.

What does taking part involve? - This is an online questionnaire study about your wellbeing, experience of living with your diagnosis over time, as well as your thoughts about psychological support. The questions will take about 30 minutes to complete.

Do I have to take part? - No, it’s entirely up to you. Taking part in this study is online completely voluntary; you may decide to stop at any time without giving a reason.

Potential benefits - This study does not provide a direct benefit to you as it seeks to understand the patient experience.

Potential disadvantages - There are very minimal risks in this online questionnaire study. There may be questions that you may not wish to engage with. These may be skipped over or you could stop at any time.

Who do I contact if I have concerns with this study? - If you have any concerns you may contact the principal investigator of the study Dr Aileen Ho (a.k.ho@reading.ac.uk; 0118 378 5550).

How will my data be kept confidential? - This is an anonymously completed questionnaire. All responses are confidential and stored securely with access only to the principal investigator and research team.

Please feel free to ask any questions that you may have about this study by contacting Dr Aileen Ho (a.k.ho@reading.ac.uk; 0118 378 5550).

This application has been reviewed by the University Research Ethics Committee and has been given a favourable ethical opinion for conduct.

Thank you for your help.

https://reading.onlinesurveys.ac.uk/neurological-conditions-2019_na

 

[rvallee]

The survey asks to list the diagnosis so likely ME respondents would just be discarded.

 

[Trish]

Why have I been contacted? - We have contacted you because you are living with a neurological condition, and we would like to know about your experiences of living with your diagnosis.

This makes me think it is a study intended only for a selected sample of patients with neurological conditions, perhaps from a particular clinic to assess their services.

 

[Andy]

This makes me think it is a study intended only for a selected sample of patients with neurological conditions, perhaps from a particular clinic to assess their services.

Possibly, but I discovered it in an email update from the Neurological Alliance, where they were promoting it.

 

[Trish]

Possibly, but I discovered it in an email update from the Neurological Alliance, where they were promoting it.

Ah, OK. I guess that means it's intended to be widely shared.
Anyway researchers should know that if you put any survey on the internet lots of people will spread the word.

I sometimes wonder if the few people who fill in ME surveys about the effect of doing GET and say it helped are CBT/GET therapists and their friends trying to influence the outcome.