Anosognosia, Parkinson's
Conditions
Keywords
Parkinson's, Anosognosia, DBS, Deep Brain Surgery
Brief summary
Anosognosia is a recognised condition for people with Parkinson's, and is the result of physiological damage on brain structure. 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 QoL 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.
Detailed description
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.
Interventions
BEHAVIORALQuestionnaires
Pre and post deep brain surgery questionnaires
Sponsors
University of Birmingham
Study design
Observational model
CASE_ONLY
Time perspective
PROSPECTIVE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Clinical diagnosis of Parkinson's as defined by the UK PDS Brain Bank Criteria
Exclusion criteria
* Unable to complete questionnaires in English.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Improvement of ability to recall extent of condition | 9 months | Person with Parkinson's specific quality of life using the Parkinson's Disease Questionnaire for both participant and carer. |
Secondary
| Measure | Time frame | Description |
|---|---|---|
| Patient Generated Index | 9 months | Quality of life measure |
| Abnormal Involuntary Movement Scale | 9 months | Occurrence of tardive dyskinesia |
| Patient Competency Rating Scale | 9 months | Evaluation of self-awareness following traumatic brain injury |
| Grooved peg board test | 9 months | Measuring motor performance |
| Clinician's Rating Scale for Evaluating Impaired Self Awareness and Denial of Disability after Brain Injury adapted for use with PD patients.after Brain Injury, adapted for use with Parkinson's Disease patients | 9 months | Participants self-awareness of their Parkinson's |
| Unified Parkinson's Disease Rating Scale | 9 months | Rating the extent of the participant's Parkinson's |
| Mini Mental State Exam | 9 months | Measure of cognitive impairment |
| Parkinson's' Disease Questionnaire | 9 months | PDQ-39 (Carer) |
| The tapping test | 9 months | Measuring motor control |
Countries
United Kingdom
Outcome results
None listed