Using the bhps to examine the experiences of people living with neurological disability in britain
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Using the BHPS to examine the experiences of people living with neurological disability in Britain. Kimberly Fisher Institute for Social and Economic Research John Stevens Institute of Neurology. Outline of Presentation.

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Using the bhps to examine the experiences of people living with neurological disability in britain

Using the BHPS to examine the experiences of people living with neurological disability in Britain

Kimberly Fisher

Institute for Social and Economic Research

John Stevens

Institute of Neurology


Outline of presentation

Outline of Presentation

  • The significance of using the BHPS to study the experiences of people with MS and other neurological disabilities

  • The sub-sample of the BHPS Panel with neurological disabilities

  • Initial findings


Social science interest in ms and other neurological disabilities

Social Science Interest in MS and Other Neurological Disabilities

  • Social exclusion debates

  • Welfare spending debates

  • Political activism among neurological support organisations in the UK


The value of the bhps for studying this population

The Value of the BHPS for Studying this Population

  • BHPS overcomes the difficulties sampling this population

    • No Comprehensive Medical Records

    • National Statistics Focus on Benefits Claimants

    • Most Surveys Not Prioritise Chronic Illnesses

    • The population is partly hidden

  • The panel component allows the study of post diagnosis transitions


Why including the hidden element of the population is important

Why Including the Hidden Element of the Population is Important

  • Can miss out part of the cycle of living with neurological disease

  • Services based on research findings do not provide adequately for the needs of the hidden element of the population

  • Statistics look worse than they should


The neurological sub sample

The Neurological Sub-sample

3196 (including migrane headaches)

494 (excluding people who only report having migranes)


The neurological sub sample1

Epilepsy

Stroke

Vertigo

Parkinsons Disease

Chronic Fatigue (ME)

Multiple Sclerosis

Neuralgia

Other conditions

Number New Diagnosis

193 48

50

34 29

33 20

33 15

27 17

7 6

117 4 (Alzh)

The Neurological Sub-sample


Definition of newly diagnosed

Definition of Newly Diagnosed

At least one FULL interview where the problem was not reported before the problem is reported


Problems defining the sample

Problems Defining the Sample

  • Questionnaire only directly asked about epilepsy all waves, migranes in later waves, other conditions self-reported (other information collected by an "Other – please specify" question)

  • No questions about when a health problem was first diagnosed/started

  • People over-report migranes and under-report other conditions


Problems defining the sample1

Problems Defining the Sample

  • Respondents did not consistently report conditions across all waves

  • This group has a high level of proxy interviews, telephone interviews, and missing interviews, though most come back into the panel after missing 1-3 full interviews

  • Present weighting rules remove a significant proportion of this group from the longitudinal sample because of the intermittent response


Kimberly fisher institute for social and economic research john stevens institute of neurology

Intermittent Response

No Neuro Problem

Has Neuro Problem

No

14197

97.4%

381

2.6%

Yes

1718

94.9%

93

5.1%

Total

15915

97.1%

474

2.9%

Fisher's Exact Test 2-Tailed p<.000, Cramer's V .047


Proxy telephone levels vary

Proxy/Telephone Levels Vary

  • Alzheimer's 66.7%

  • Parkinson's Disease 24.2%

  • Stroke 22.0%

  • Other Neuro Problems 20.7%

  • Epilepsy 19.2%

  • Chronic Fatigue 18.2%

  • Neuralgia 14.3%

  • Vertigo 11.8%

  • MS 11.1%


Overall level of intermittent response

Overall Level of Intermittent Response

Whole Sample (excluding neurological cases) 10.9%

Neurological Cases (excluding only migrane cases) 19.6%


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