Optimal health care for people with headache

Headache disorders are largely treatable, but effective care fails to reach most people. Drugs for headache are not the only things patients need, and these drugs will not make an impact without improvements in health care services overall.

The Global Campaign aims to bring better health care to people with headache.  This involves planning and implementing quality health care services.

Fourteen specialist centers in Europe evaluated the quality of their services based on 9 domains:

• Accurate diagnosis 
• Individualized management 
• Appropriate referral pathways 
• Education of patients 
• Convenience and comfort 
• Patient satisfaction 
• Care that is efficient and equitable
• Outcome assessment 
• Patient safety

They used 26 indicators of optimal care, and translated evaluation instruments to 10 languages.  They found that these quality indicators were useful for uncovering deficits and setting benchmarks for care.  The full paper can be downloaded here.

Moving forward

For researchers

• The next big step is to take the evaluation process into primary care, where most patients with headache are treated.

For clinicians

• Evaluate your clinic's approach to headache management according to these benchmarks.

For people with headache

• Be aware of standards for optimal headache management.  It does not start and end with painkillers.

References:

Schramm S, Uluduz D, Gouveia RG, Jensen R, Siva A, Uygunoglu U, Gvantsa G, Mania M, Braschinsky M, Filatova E, Latysheva N, Osipova V, Skorobogatykh K, Azimova J, Straube A, Eren OE, Martelletti P, De Angelis V, Negro A, Linde M, Hagen K, Radojicic A, Zidverc-Trajkovic J, Podgorac A, Paemeleire K, De Pue A, Lampl C, Steiner TJ, Katsarava Z. Headache service quality: evaluation of quality indicators in 14 specialist-care centres. J Headache Pain. 2016 Dec;17(1):111.

Peters M, Jenkinson C, Perera S, Loder E, Jensen R, Katsarava Z, Gil Gouveia R, Broner S, Steiner TJ. Quality in the provision of headache care. 2: defining quality and its indicators. J Headache Pain. 2012;13:449–457.

Photo:
© Portrait Images Asia By Nonwarit | Shutterstock

Migraine and altitude

Living at high altitude in Nepal is associated not only with higher migraine prevalence but also higher severity of attacks (measured in terms of frequency, duration, and intensity of pain). The prevalence of migraine is very high in Nepal: 34.7% (Manandhar, 2015).  In comparison, the global prevalence of migraine is about 11% (Stovner, 2007). 

A population-based study among 2100 Nepali showed that migraine prevalence increased from 27.9% to 45.5% with increasing altitude from 0 to 2499 meters. Higher altitude increased the likelihood of having migraine compared to living at under 500 meters (Linde 2017).  

At an altitude of 2500 meters or more, the prevalence was slightly lower at 37.9% (although still high in global terms); and headache symptoms were not as bad.  The authors suggested that there may be physiological adaptations that kicked in at very high altitudes.  However, the lower prevalence and severity of migraine might be due to self-selection.  People with really bad headaches might have chosen to live elsewhere.

The association with altitude was not seen in tension-type headache. Participants were selected from  among the local population, not among visitors who experience "high-altitude headache," a condition where the body is not given enough time to adjust to rapid ascent to above 2500 meters. The authors also tried to rule out genetic or cultural factors: prevalence was so much higher than in nearby China and India; even in Nepalese districts lying on the border with China.

This research is important because:

• Association with high altitude could explain the high prevalence of migraine in Nepal.
• The body's reactions to living at high altitude might be a key to understanding the causes of migraine.
• Globally, half a billion people live at altitudes above 1500 meters.  People with migraine who live at high altitudes might benefit from advice to live at altitudes below 500 meters.  

References:
Linde M, Edvinsson L, Manandhar K, Risal A, Steiner TJ. Migraine associated with altitude: results from a population-based study in Nepal. Eur J Neurol 2017;24(8):1055-1061.

Manandhar K, Risal A, Steiner TJ, Holen A, Linde M. The prevalence of primary headache disorders in Nepal: a nationwide population-based study. J Headache Pain 2015; 16: 95.

Stovner LJ, Hagen K, Jensen R, Katsarava Z, Lipton RB, Scher AI, Steiner TJ, Zwart J-A. The global burden of headache: a documentation of headache prevalence and disability worldwide. Cephalalgia 2007; 27:193-210.

Photo:
View on Namche Bazar, Khumbu district, Himalayas, Nepal
© Olga Danylenko | Shutterstock

It's not a trivial illness

Headache is often ignored as a major public health concern because it is not deadly.  Almost everyone has experienced mild headaches, and so if someone complains of headache, it is easy to assume that the person is not seriously ill.

There is no objective way to measure headache severity (as one would hypertension, anemia, or a broken bone).  People suffering from headache disorders are often unable to describe the extent of their illness, and cannot easily explain how pain limits their productivity, family life, or social commitments.

WHO published the Atlas of Headache Disorders in 2011.  One of its important findings was that among countries that contributed data to the study, only 12% included headache disorders in their annual health reports.  Here's a screenshot of a map on page 28 of the Atlas showing the very few countries (colored red) that systematically collected national data on headache.

Fortunately, awareness of headache as a significant public health problem has increased dramatically since then.  The Global Burden of Disease studies have been particularly influential in shining light on the extent of disability headache disorders cause.   Headache disorders are highly prevalent and certain forms result in significant disability.  Headaches account for more disability adjusted life years (DALYs) than all other neurological disorders combined (including dementias). Three headache forms -- migraine, tension-type headache, and medication-overuse headache -- collectively make up the third highest cause of disability worldwide.

Moving forward

For researchers

• Check your country's health reports for information on headache disorders.  Not all countries routinely gather data on headache disorders, probably because these are not recognized as non-communicable diseases of public health importance.
• There are large knowledge gaps in headache epidemiology.  Consider undertaking epidemiological studies if you work in an area with no (or very little updated data) on headache prevalence.  The Global Campaign against Headache has developed and tested methodologies for population-based research which could be adapted for use in your locality.

For clinicians

• Do not dismiss headache as a trivial complaint.
• Ask patients to describe extent of headache disability, not just severity on a pain scale.

For people with headache

• Download a headache diary and record headache days for at least four weeks.  Note how much medication you take; when you had to miss work or school; and when you were not well enough to do household tasks.  This makes it easier for a doctor or nurse to see the extent of your illness when you come to the clinic.

The cost of headache

There are two ways to count the cost of headache.

There are direct costs which include medication, visits to health care professionals, outpatient services, hospitalization, lab tests, and diagnostic examinations

Then there are indirect costs of absence from work and reduced productivity even if a person with headache can make it to work.  Indirect costs make up the larger part of the financial burden of headache, upwards of 90% of the total.

These direct and indirect costs are shared in varying proportions among the person with headache, government, workplace, and insurance providers.

It is hard to quantify lost productivity when there is no salary involved.  Lost household work or reduced family time should be counted as indirect cost.  The problem is, there is no easy way to value this lost time.  If we assume that household work should be valued as much as paid work, then lost household work make up a greater fraction of indirect costs compared to paid work.

There is no monetary equivalent for not being able to attend social activities, study for exams, or fulfill responsibilities to the family.  A person who is anxious about triggering headaches might avoid sports, travel, educational opportunities, or job offers.  These costs are arguably more important but there is no easy way to monetize quality of life.

Moving forward

For researchers 

• Include cost estimates in quantifying the burden of headache.
• Include costs attributable to lost household productivity; these are often overlooked and might be higher than the cost of lost work.
• Measure the cost-effectiveness of interventions.  An example is this study on how involving nurses in primary care for close follow-up of patients does not add to overall costs and possibly reduces the likelihood that patients have to be referred to specialists.
• Use the HARDSHIP questionnaire developed by Lifting The Burden to examine quality of life.  The full paper can be found here and the questionnaire can be downloaded here.  Another tool developed specifically for migraine is the MIDAS questionnaire.

For clinicians

• Encourage patients to comply with their treatment plan by looking at its cost benefit.  Here is an example of reduction in direct costs with successful treatment of medication-overuse headache.
• Monitor disability caused by headache using the HURT questionnaire; or migraine using the MIDAS questionnaire.

For people with headache

• Consider the total cost of headache - not just payment for services and medications but also lost work time and productivity.
• In trying to avoid the indirect costs of headache, watch out for pain medication overuse.  This study describes interviews of people with frequent headaches who coped by increasing their pain medications to the point where these became "indispensable".  Medication-overuse headache, according to several estimates, is the most costly type of headache.
• Tell health care professionals about your level of disability - how headache affects work and daily life.  Too often, the conversation about headache stops with standard questions on severity, location, duration, character, aggravating and relieving factors.  These items are important for diagnosis, but they don't adequately describe burden.