How to set up a headache clinic

Introduction

Although

☆ Editor’s note: In this chapter the authors share how to set up a headache clinic that is multidisciplinary and comprehensive. They show the data that these clinics work to improve outcome for patients and families. They give advice on how to convince skeptics that such an approach is helpful. I would add that in addition to sharing data, bringing a patient and family to such meetings to discuss how the clinic has dramatically affected a young life is best of all!

the majority of children and adolescents with headaches can be cared for outside of the tertiary care setting, pediatric headache clinics play an important role, not only in the provision of care to this underserviced population, but also in educating the community and other providers in the standard of care for pediatric headaches. In this chapter, we will describe the rationale for pediatric headache clinics, proposed models for both acute and outpatient headache care, the evidence for multidisciplinary headache clinics and finally, we will outline some ideas on how to advocate for the resources necessary to implement the proposed care models in a multidisciplinary pediatric headache clinic. We aim to structure our recommendations around the best available evidence, and where evidence is lacking, we have made recommendations based on expert opinion.

The societal impact of pediatric headache

Headache occurs in the majority of children and adolescents: according to a recent systematic review, the worldwide prevalence of headache in the pediatric population is 58.4% and the prevalence of migraine in the pediatric age group is 7.7%. Across the lifespan, headaches are the second most prevalent of all chronic diseases worldwide.

Not only are primary headaches common, but they cause a great amount of disability. In the most recent iteration of the Global Burden of Disease Study, headaches were the second most important cause of years lived with disability amongst all diseases and injuries. Pediatric patients with migraine have higher levels of disability as compared to controls due to impaired educational, social, and extra-curricular functioning. Quality of life is also significantly lower in children and adolescents with migraine as compared to controls, and quality of life scores are lower than those of patients with other chronic diseases, such as diabetes and chronic rheumatologic diseases. It has also been shown that children with migraine have problems in school with inferior academic performance as compared to their peers. Therefore, primary headaches have an important impact on children and adolescents and on the community through their effects on social, occupational, and educational functioning.

The importance of evidence-based pediatric headache care

The provision of evidence-based headache care is important not only due to its impact on short-term patient outcomes, but also because appropriate headache care in childhood may alter the long-term course of disease in primary headaches.

First, when patients are given a diagnosis, the door to receiving evidence-based, effective intervention opens, and long-term outcomes may be improved. In case of migraine, a longer lag between the time of disease onset and presentation to a multidisciplinary pediatric headache clinic predicts a poorer long-term outcome characterized by a higher risk of chronic migraine at 10-year follow-up. It is likely that a delay in presentation results in a delayed diagnosis, which in turn delays appropriate care. In fact, it has been proposed that there may be a window of opportunity in pediatric migraine, whereby early, targeted, and effective intervention may result in long term disease modification. If this is correct, then the existence of pediatric headache clinics and their role in modeling and providing evidence-based care may have a significant public health impact on the community at large.

Second, multidisciplinary headache clinics not only provide a diagnosis and intervention for headache, but also support patients in the development of effective self-management and pain coping strategies. Given that migraine is a lifelong disease that persists through adulthood in approximately 50% of pediatric patients, it is critical that patients learn effective self-management and pain coping strategies early in their disease course. Teaching patients self-management skills may improve self-efficacy, and this in turn may be associated with better long-term outcomes.

The societal and health care costs of chronic migraine are significant and several modifiable factors may mediate the risk of episodic migraine progressing to chronic migraine. Longitudinal studies have shown that depression, high baseline headache frequency, and overuse of acute medications contribute to the risk of developing chronic migraine in adolescents. In addition to the effect of depression on the risk of progression to chronic migraine, negative emotional states, including symptoms of depression and anxiety, appears to contribute to the risk of headache persistence, and depression may also predict a poorer short-term prognosis in children and adolescents with migraine. All of these modifiable risk factors can be addressed through the provision of evidence-based multidisciplinary headache care, thereby underscoring the importance of access to care.

Thus, for patients whose primary headaches are onset in childhood and adolescence, access to evidence-based pediatric headache care may significantly alter their life through the reduction of disability, improved self-management, and pain coping skills and the prevention of both chronic migraine and the long-term socioeconomic impairment associated with this condition.