Help needed to join the aHUS dots

Article No 395

25 November 2020

This was a call to action to the Global aHUS community.( Results to come)

It is self evident that those who know they have aHUS have had an aHUS diagnosis. Not all aHUS patients do, and a diagnosis of aHUS can be hard to  get. The patient’s journey to that diagnosis is as individual as the patients themselves. They were the only ones to have  lived it all from the moment they thought something was up with them to being told “You’ve got aHUS”.

The experience and perception of aHUS patients ,who have gone through it, can be of help to those who are yet to go through it. aHUS patients say helping those future aHUS patient is the reason they want aHUS  to be better known. Greater awareness can lead to quicker identification of one of the rarest of rare diseases.

The aHUS alliance Global Action is providing an the opportunity for aHUS patients around the world to share their own experience and perception of the aHUS diagnosis process in a survey.  Collectively that evidence  can be used to inform, educate and help shape better diagnosis experiences for those yet to suffer an aHUS onset.

It aims to capture diagnosis process timelines, symptom severity and impact on health. It also aims to gain more understanding of  the aHUS diagnosis pathway and what patients think or feel about it.

Having gone through the experience themselves, the volunteers for aHUS  alliance Global Action know only too well that returning to that episode in their lives may not be for everyone to do. It can be upsetting and distressing.  But those who can and are able to recall enough of it after all the time that has passed, and are also comfortable about sharing what happened, have the opportunity for their diagnosis journey to be captured in a meaningful way.

So whether the patient‘s experience was a straightforward step by step process through health care providers; or an iterative process meeting several “brick walls“ along the way,  their evidence can say something about what both speeds up, or creates barriers to, getting an accurate and timely aHUS diagnosis.

aHUS patients’ carers also went through the experience and observed it from their perspective, so they can provide an insight too.

Below there is a secure link to the  Global aHUS Diagnosis Survey questionnaire for volunteers to complete. There  there are 45 questions. It can take 5 minutes or more to do depending on an individual’s experience. The survey questionnaire It will be accessible until 19 January 2021( Now closed).

Most aHUS patients around the world will not be aware of what is being done here, which is why it is important for those who are engaged to speak up , not just for themselves but for a representative collective aHUS voice.

Entry now closed. Results will be published later this year.

 

 

Before volunteering to participate, please read the following information and guidance notes.( this list will also be seen in the first part of the questionnaire once participants enter)

  1. The Survey is being carried out by aHUS alliance Global Action, an independent registered incorporated charity for aHUS patient advocacy.
  2. The Survey is accessed only through its website, which has an SSL certificate.
  3.  The Survey Questionnaire is powered by Survey Monkey, a well established and respected survey provider.
  4. Survey questions cover pre-symptom, early symptoms, seeking medical advice, referral to specialist  stages up to diagnosis. Finally there are questions about post diagnosis treatment status and patients’ overall perception of the diagnosis process.
  5. The data being sought is needed for a study of the experience and perception of the diagnosis process for aHUS.
  6. Participant’s own response data will be kept anonymously, securely and safely by the charity and not provided, nor sold for profit to any third party.
  7. All data will be kept confidentially for two years following the release of results.
  8. The results of this study may be published by aHUS alliance Global Action via newsletters, presentations, academic papers, reports and visual graphics with the multiple key stakeholders including; researchers, multi-disciplinary health care workers, policy makers and other stakeholders. It will not be possible to identify any individuals from reports or presentations.
  9. All participation is voluntary and respondents must be  willing to complete the survey. Respondents can opt out during the  questionnaire completion, and not answer some of the questions; but once the questionnaire is completed no changes can be made.
  10. No individual health care providers’ names, nor hospital or other care organisations’ names are required, only their roles and services provided are sought.
  11. Terms like TMA (Thrombotic microangiopathy ) TTP ( Thrombotic thrombocytopenic purpura), HUS (Haemolytic Uremic Syndrome) will feature in some questions.  Such terms may be  familiar now but it is acceptable to say they were not heard at the time of the diagnosis , nor cannot be recalled  from that time.
  12. If further information is required for your consent to participation please contact info@ahusallianceaction.org for assistance.