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Lack of awareness of symptoms (anosognosia) in PD

  • Research type

    Research Study

  • Full title

    Lack of awareness of symptoms (Anosognosia) in PD: An Observational Study to Examine the Effects of Anosognosia on Self-Reported Quality of Life for People with Parkinson’s

  • IRAS ID

    150846

  • Contact name

    Hardev Pall

  • Contact email

    Hardev.pall@uhb.nhs.uk

  • Sponsor organisation

    University of Birmingham

  • Research summary

    Parkinson’s disease (PD) is a progressive neurological condition affecting 1% of the population over 60. Deep Brain Stimulation (DBS) has been shown to be an effective treatment for advanced PD. However, Surgical Parkinson Disease Nurse Specialists have noticed that when reviewing the pre-surgery videos 12 months post-DBS, patients have forgotten and are shocked at how bad their symptoms were prior to surgery (personal communication), which may not be reflected in the change in quality of life (QoL) reported.
    As Parkinson's progresses, impaired self-awareness or anosognosia of motor symptoms have been reported. This lack of awareness, while possibly helpful in everyday life, may lead to effective treatments looking ineffective, or the benefits in QoL of effective treatment appearing reduced. This confound may not only reduce the apparent effectiveness but also the related cost-effectiveness of treatment. As cost-effectiveness is determined by both size and longevity of an effect, current methods of capturing these data may be suboptimal.
    The overarching aim of this project is to identify coping mechanisms and pathological lack of self-awareness and the impact they are likely to have on patient reported quality of life (QoL) outcome measures for a chronic condition.
    This will be an observational study, a case series of approx. 10 to 20 patients. These patients will be recruited over a 6 month period from the Queen Elizabeth Hospital, Birmingham and will be informed of the study during their routine pre-surgical visit.
    Patients will be eligible if they are about to undergo DBS at Queen Elizabeth Hospital. If the participant has a carer, who is also willing to participate, they may also join the study. Patients will be excluded if they are unable to complete questionnaires in English.
    Once recruited and following consent, a patient will complete a brief battery of questionnaires both self-reported and clinician rated prior to surgery and at their 6 month post op visit.

  • REC name

    South Central - Hampshire A Research Ethics Committee

  • REC reference

    14/SC/0302

  • Date of REC Opinion

    3 Jul 2014

  • REC opinion

    Further Information Favourable Opinion