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ITP and Fatigue Survey in Autumn 2009
The ITP fatigue survey Part 1- Autumn 2009
In addition to the usual symptoms of a low platelet count one less than obvious feature of ITP, experienced by many patients, but not always recognised by clinicians, is fatigue.
The ITP Support Association was aware for a number of years that this aspect of ITP required further research, and having discovered that Professor Julia Newton of the Institute for Ageing and Health, University of Newcastle was currently researching the link between fatigue and autoimmune disease we asked if she would help us research this issue in ITP and she readily agreed.
The starting point was to learn more about the condition directly from patients themselves and thus a survey was sent to all ITP Support Association members (for people over 16 who had, or were in remission from, ITP) asking about symptoms experienced at the time the questionnaire was completed. Professor James George and Dr Dee Terrell (Oklahoma, US) also offered their co-operation and invited patients on the Oklahoma ITP Registry to participate. As a result 585 ITP Support Association members and 69 Oklahoma registry patients completed and returned their surveys which revealed some interesting results requiring more investigation; and excitingly, these early results suggest that some types of fatigue may be treatable.
Professor Julia Newton and Professor James George are collaborating on this study and aim to publish their findings in a major medical journal to educate the wider medical profession about the existence of fatigue as a fairly common component of ITP.
The ITP fatigue survey Part 2- Autumn 2010
Those who participated in Part 1 were sent Part 2, a comprehensive 10 page questionnaire to help us gain a deeper understanding of the incidence and nature of fatigue in ITP. In order to compare results with the non-ITP population, participants were invited to find a friend or relative of a similar age to complete an identical questionnaire. Professor Newton gave a presentation about ITP and Fatigue at the ITP Convention. Her presentation called "Fatigue in Adult Patients with ITP" is available here.
Am I Normal programme on BBC Radio 4, Series 8. "What
level of tiredness is normal and when should we seek help? Vivienne
Parry finds out." i-Player link here:- www.bbc.co.uk/programmesb012p92l
or website
here.
Broadcast Wed 10 Aug 2011.