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Assessing the impact of migraine. Dr Andrew Dowson. Kings Headache Service Kings College Hospital London, UK. Overview. Definition of impact (disability) History of migraine impact Recent research into migraine impact Assessing migraine impact Rationale for using instruments
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Assessing the impact of migraine Dr Andrew Dowson Kings Headache Service Kings College Hospital London, UK
Overview • Definition of impact (disability) • History of migraine impact • Recent research into migraine impact • Assessing migraine impact • Rationale for using instruments • Development of new instruments • Strategies for managing migraine using impact measures
Definition of impact (disability) • WHO definition– ‘In the context of health experience, a disability is any restriction or lack (resulting from an impairment) of ability to perform an activity in the manner or within the range considered normal for a human being' World Health Organization, 1980.
History of migraine impact • Ancient civilizations • Classical times • Medieval • 18th–19th Century • 19th Century • 20th–21st Century
Recent research into migraine impact • USA • Canada • Japan • Europe • Impact in the workplace and in education • Impact on family and social activities
Migraine-related disability in the USA 51 36 Sufferers (%) 12 1 None Mild Moderate/severe Don’tknow Stewart WF et al. Neurology 1994;44(suppl 4):24–39.
Migraine-related disability in Canada 47 Sufferers (%) 22 17 14 Edmeads J et al. Can J Neurol Sci 1993;20:131–7.
Migraine-related disability in Japan 40 34 21 Sufferers (%) 5 Sakai F, Igarashi H. Cephalalgia 1997;17:15–22.
Migraine-related disability in Europe % Always have to lie down 76 Postpone household chores 90 Relations with family and friends affected 54 Not in control of life 34 Disruption of life 67 Clarke CE et al. Q J Med 1996;89:77–84
Impact in the workplace – USA Females 100 80 60 Cumulative percent of total lost workday equivalents 40 20 0 0 20 40 60 80 100 Sufferers (%) Stewart WF et al. Cephalalgia 1996;16:231–8
Impact in the workplace – Europe % Usually miss work 50 Difficulty performing work 72 Cancel appointments/meetings 67 Rely on other people 45 Perceived effect on promotion 15 Clarke CE et al. Q J Med 1996;89:77–84
Impact on education • Total days per year of school missed–Children with migraine 7.8***– Controls 3.7 • Days per year lost due to migraine–Children with migraine 2.8– Controls 0 *** p<0.0001Abu-Arefeh I, Russell G. BMJ 1994;309:765–9
Impact on family and social activities –1 • Impact on spouse %–Activities cancelled 76– Tension between spouses 30– Sexual relations impaired 24 • Impact on children–Interferes with activities 94– Attention-seeking behaviour 22– Hostile behaviour 17 Smith R. Headache 1996;36:278.
Impact on family and social activities – 2 % • Affects relations with family 56 • Affects relations with friends 35 • Affects relations with other people 33 • Social events cancelled 54 Kryst S, Scherl ER. Headache Classification and Epidemiology. (Olesen J, ed) New York, Raven Press Ltd, 1994; p345–50
Burden of migraine to society: Direct costs • Total annual costs of medical care (adjusted to $US) • USA = $1 billion • Canada = $1.9 billion • Sweden = $13 million • UK = $45 million • Netherlands = $300 million • Australia = $31 million Ferrari MD. Pharmacoeconomics 1998;13:667–75
Burden of migraine to society: Indirect costs • Total annual indirect costs of migraine due to lost productivity (adjusted to US$) • USA = $13 billion • Canada = $732 million • Sweden = $1.6 billion • UK = $1.1–1.3 billion • Netherlands = $1.2 billion • Spain = $1.1 billion • Australia = $568 million Ferrari MD. Pharmacoeconomics 1998;13:667–75
Conclusions • The characteristic features of migraine and its accompanying impact have been described consistently over the past 2000 years • Most migraine sufferers report significant impact (disability) associated with their attacks • Disability occurs in paid work, education, household tasks and family and leisure activities
Assessing migraine impact • Migraine attacks vary in severity from:–Moderate pain with no activity limitations to– Severe pain and prolonged incapacitation
The need for tools to assess migraine impact • No objective method to assess medical need • Poor communication between patients and physicians • Inefficient treatment strategies • Trial and error • Stepped care
Barriers to migraine care Yes Yes Yes Yes Migrainepatients inneed of care Ongoingassessmentof control Goodoutcome Appropriatelytreated Diagnosed Consulting No No No No Motivate patient to seek care Improve diagnosis Improve treatment Encourage follow-up
Measuring the impact of migraine • Define parameters for assessing impact of migraine to the sufferer and to society • Develop a simple to use tool which captures this information in a reliable and valid manner
Migraine impact to the sufferer • Pain intensity is the most important aspect– Reported more frequently than other symptoms– Usually severe • Sufferers consulting a physician do so mostly for pain relief Edmeads J et al. Can J Neurol Sci 1993;20:131–7
Migraine impact on society • Headache-related disability is the most important determinant of migraine’s societal impact measured in economic terms de Lissovoy G, Lazarus SS. Neurology 1994;44(suppl 4):56–62
Grading migraine severity • Two studies– Von Korff et al– Washington County Study
Von Korff study • Graded severity of primary care patients with back pain, headache and jaw pain– Pain intensity– Disability– Persistence– Recency of onset Von Korff M et al. Pain 1992;50:133–49
Pain–disability link • Pain intensity and disability measures formed a reliable hierarchical scale– Pain intensity scaled lower range of severity– Disability scaled upper range of severity • Persistence and recency of onset did not scale with pain intensity or disability Von Korff M et al. Pain 1992;50:133–49
Pain impact grades • Four severity grades identifiedGrade I: low pain intensity and low disabilityGrade II: high pain intensity and low disabilityGrade III: high disability which was moderately limitingGrade IV: high disability which was severely limiting Von Korff M et al. Pain 1992;50:133–49
Primary care headache patients • Grading system tested on 740 headache patients over 2-year period • Individual sufferer– Pain impact increased as severity grade increased • Society– Direct and indirect costs increased as severity grade increased Von Korff MR, Stang PE. Headache Classification and Epidemiology (J Olesen ed). New York: Raven Press, 1994;pp367–71
Impact on the individual • Pain Impact (activity limitations, depression and poor-to-fair self-rated QoL) 60 40 Extent of disability 20 Grade II Grade I Grade IV Grade III 0 1 month 1 year 2 years Von Korff MR, Stang PE. Headache Classification and Epidemiology (J Olesen ed). New York: Raven Press, 1994;p367–71
Impact on society – Direct costs • Total cost of headache care per year per patient 1000 800 600 Mean cost of headache care ($US) 400 200 0 I II III IV Migraine severity grade at baseline Von Korff MR, Stang PE. Headache Classification and Epidemiology (J Olesen ed). New York: Raven Press, 1994;p367–71
Impact on society – Indirect costs • Unemployment rate 30 Severity grade at baseline Grade II Grade I Grade IV Grade III 20 Unemployed (%) 10 0 Baseline Year 1 Year 2 Von Korff MR, Stang PE. Headache Classification and Epidemiology (J Olesen ed). New York: Raven Press, 1994;p367–71
Washington County Study • Telephone interview identified migraine sufferers in the general population • Sufferers rated most recent headache in previous 5 days • Pain intensity rated from 0–10 • Disability rated as none, partial or all day Stewart WF et al. Neurology 1994;44(suppl 4):24–39.
Pain–disability link 10 9 8 7 6 Pain rating 5 4 3 2 1 0 None All day Partial Disability Stewart WF et al. Neurology 1994;44(suppl 4):24–39
Conclusions • An impact (disability) grading system has the potential to describe the burden of migraine both to the individual sufferer and to society • This provides a foundation for grading migraine severity
New instruments for assessing migraine impact • Migraine Disability Assessment Questionnaire (MIDAS) • Headache Impact Test (HIT)
Rationale for MIDAS The MIDAS Questionnaire was developed as a tool to: • Improve physician–patient communication • Motivate disabled migraine sufferers to seek care • Identify patients with high treatment needs • Provide a rationalbasis for treatment decisions and follow-up
The MIDAS Questionnaire • Paper-based questionnaire, accessible at surgeries and pharmacists • 5 questions assessing the days lost due to migraine over a 3-month period: • Paid work • Household work • Family and social activities • Total lost days are summed and categorised into 4 severity grades • Two unscored questions assess headache frequency and pain intensity Stewart WF et al. Cephalalgia1999;19:107–14
Scoring the MIDAS Questionnaire Grade Definition MIDAS score Medical need I Minimal or infrequent disability 0–5 Low II Mild or infrequent disability 6–10 Moderate III Moderate disability 11–20 High IV Severe disability 21+ High Add up total scores from Questions 1–5 Stewart WF et al. Cephalalgia1999;19:107–14
The MIDAS Questionnaire: summary of research and clinical testing • Research criteria • Reliability • Content validity (accuracy) • Construct validity • External validity • Clinical practice criteria • Face validity • Easy to use • Easy to score • Intuitively meaningful Lipton RB et al. Rev Contemp Pharmacother 2000;11:63–73
Use of MIDAS to specify treatment • ASA, NSAIDs • (Triptans) MIDAS Grade I • NSAIDs, DHE • (Triptans) MIDAS Grade II Disability assessment • Triptans, DHE, butorphanol MIDAS Grade III/IV
MIDAS strengths and weaknesses • Strengths • Aid to communication between physicians and patients • Widely used by headache specialists and neurologists • Aid to referral for primary care physicians • Sensitive to change: can be used as an outcome measure following treatment
MIDAS strengths and weaknesses • Weaknesses • May not cover the full spectrum of headache due to its brevity • Grade scores may not indicate medical need • Many disabled patients score as Grade I • Weighting of questionnaire towards headache frequency • Patients with frequent headaches (e.g. CDH) tend to score as Grade IV • Not accepted as a stratification tool to aid choice of treatment
Headache Impact Test (HIT) • Web-based test, accessible to all headache sufferers • Dynamic questionnaire covering the full headache range • In practice, 5 questions sufficient to grade the majority of headache sufferers