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 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.

The structure of multidisciplinary headache care in the clinic setting

There is substantial evidence to support the efficacy of multidisciplinary headache care in reducing disability and improving patient outcomes, as is reviewed below. In addition, multidisciplinary headache care appears to yield significant cost savings for the healthcare system as compared to care in other settings. In this model, a multidisciplinary team works together to provide integrated headache care, similar to the model used in many chronic pain clinics, but tailored to the unique needs of patients experiencing headache.

The core of a multidisciplinary headache clinic comprises expertise from a headache specialist, with input from Psychology, Nursing, and Physiotherapy. Fig. 1 illustrates the essential elements of multidisciplinary headache care. The headache specialist’s role is to diagnose the headache, exclude secondary headaches, order appropriate investigations, make referrals to other disciplines as needed and tailor pharmacologic management with appropriately chosen acute and preventive medications.

Core multidisciplinary headache clinic components.

Adapted from J Headache Pain 2011;12:511–19.

Psychological care is another vital component in the multidisciplinary approach to pediatric headache management due to the high prevalence of internalizing symptoms and of poor pain coping strategies in pediatric migraine. Pain coping and quality of life are correlated in children and adolescents with migraine and, as above, internalizing symptoms have an influence on headache prognosis. Psychologists provide a vital service in multidisciplinary headache clinics through the diagnosis and management of psychiatric symptoms and disorders, which, when untreated, are associated with a higher risk of migraine chronification. In addition, psychologists teach patients pain coping skills, an essential component of headache management. There is robust meta-analysis level evidence to support the efficacy of psychological therapies for the treatment of pediatric headache, and there is high quality randomized controlled trial evidence to support the efficacy of cognitive behavioral therapy for pediatric chronic migraine.

In the multidisciplinary headache clinic, the headache nurse assists in communication between disciplines, provides headache education to the patient and provides regular follow-up to outpatients in the community. The role of the headache nurse may be more extensive in certain clinics, as nurses may be involved with monitoring medication side effects, assisting in research studies, and in other tasks such as programming neurostimulation devices.

Physiotherapy might be an effective part of the treatment plan for certain patients with headache. A recent systematic review supports the use of physiotherapy for migraine, tension-type headache, and cervicogenic headache in adults. Though the extent and quality of the evidence is limited, select patients, especially those with cervicogenic headache and myofascial pain, might benefit significantly from physiotherapy interventions as part of their management plan.

Thus, the ideal structure for a pediatric multidisciplinary headache clinic would involve: (1) care by a headache specialist focused on diagnosis and pharmacologic management, (2) involvement of a psychologist for teaching pain coping skills and for patients with comorbid internalizing or other psychological symptoms, (3) involvement of a nurse for coordination of care, headache education, and ongoing follow-up, and (4) physiotherapy for select patients who may benefit from manual interventions and exercise training. In addition to the above core components of multidisciplinary pediatric headache care, additional elements that can be beneficial include the involvement of a social worker and a dietician. Given that a proportion of children and adolescents with headaches have problems with school absenteeism, in some cases it is beneficial to involve a social worker to assist the patient, their family, and the school in developing and communicating an individualized school reintegration plan and/or an individualized education plan. Although evidence for the efficacy of dietary interventions in headache management is limited, it may also be beneficial, in certain cases, to involve a dietician to assist in establishing a healthy diet in order to optimize outcomes. If available, experts in complementary medicines such as herbs, yoga, and acupuncture can be incorporated.

In practical terms, delivering multidisciplinary services in a headache clinic can take on different forms. In some settings, what is most feasible is a “traditional” model where the headache specialist initially assesses the patient, and then makes referrals as needed to the other care providers (i.e., psychologist, physical therapist, etc.). Where resources permit, it can be useful to adopt the model of having multiple providers in clinic at the initial visit. This enriches the initial assessment and alleviates some of the travel burden for families. For example, at the Cincinnati Children’s Hospital, all patients who complete an initial assessment in the Headache Clinic are seen by both a headache neurologist and a pain psychologist at their initial visit. Having a headache nurse meet with the patient and their family immediately following the headache specialist visit can be a useful way of enhancing patient education and allowing patients additional time for their questions and concerns to be addressed by a care team provider. In some clinics, a physician carries out the initial consultation assessment and follow-up visits are led by nurse practitioners. A variety of clinic structures can be employed contingent on available resources, though maximizing access and contact with multidisciplinary care teams allows patients to choose from a greater breadth of intervention options and appears to yield favorable treatment outcomes (see Section 7: The Evidence for Multidisciplinary Headache Care).

The structure of headache care in the acute setting

Given that migraine is a multigenic disorder with multiple associated comorbidities, headache patients may not fit the same mold as other neurology patients and may bring with them other health conditions that may influence their trajectory. It is thus important to have a variety of options for treatment built into multidisciplinary care for when things go awry. Generally, after an evaluation, a patient is given a concrete written plan of care including a preventive plan and an acute treatment plan (Headache Action Plan) in addition to advice regarding stress management and lifestyle changes they can implement to improve health. In the pediatric population, the Headache Action Plan (HAP) and medication needs to be provided to the school so that if a headache begins in school, the plan can be initiated early in order to maximize efficacy. When the HAP does not result in resolution of headache, other interventions can be offered and it is important to have pathways in place to facilitate accessing these treatments.

Acute interventions that can be offered to headache patients include nerve blocks, sphenopalatine ganglion (SPG) blocks, and infusions. These interventions can be delivered either in an infusion center or in the Emergency Department (ED).

In order for patients to be able to access nerve blocks and SPG blocks, there needs to be an adequate number of providers trained to perform these procedures. If local expertise in administering these procedures is lacking, training can be accessed through the American Headache Society (AHS) and American Academy of Neurology (AAN); these societies provide excellent hands-on training courses on headache procedures. Appointments for blocks that are available on a same day or next day basis can improve patients’ access to care. Most headache centers are scheduled many months in advance for appointments so flexibility must be built into the schedule to accommodate urgent requests. In the US, different insurance plans have different policies regarding coverage, so a system that includes the ability for urgent prior authorization including staff and appropriate documentation should be in place so that patients do not need to pay out of pocket unnecessarily for covered services. Discussion with payors at the outset of program development should occur in order to avoid service delays.

In addition to nerve and SPG blocks, infusions are an essential component of the acute treatment armamentarium that can often “break” or lower headache pain to a level where the patient can function. There are numerous ED studies on the efficacy of different medications or combinations of medications that have been reviewed elsewhere in detail. Because the quality and quantity of the evidence in this area is limited, at present, different centers have different pathways based on their interpretation of the evidence and their clinical experience. Infusion medication options comprise many of the same medications used in the ED and inpatient setting including ketorolac, neuroleptic antiemetics (e.g., prochlorperazine or metoclopramide), and dihydroergotamine (DHE).

In the pediatric ED setting, treatment protocols for the acute management of migraine have been shown to be effective, and it is likely that this evidence would extend to support the use of protocols in the infusion center setting. In fact, an infusion center offers the benefit of a quiet environment without the possibility of being bumped by other ED patients with more pressing needs. Although there is practice variation around how to intervene in acute pediatric migraine that has not responded to the at-home HAP, all headache centers should have an acute protocol established, that: (1) avoids administration of narcotics, as per published adult acute migraine guidelines and the AAN’s Choosing Wisely campaign, (2) is based on evidence, and (3) is consistently followed with some flexibility for individuals patients in case a particular part of the pathway is not tolerated, or is contraindicated due to allergy or comorbidity. It is highly unlikely that there will ever be one medication or combination of medications that is universally effective; however, having a set pathway clearly improves patient outcomes.

Infusions centers can provide a number of benefits to patients as opposed to ED care. When considering appropriate use of the infusion center, it is important to ensure patients referred to this setting are stable, established patients of the headache center. First, an appointment can be made for the patient, and generally infusion centers offer a less chaotic, less overstimulating environment for a child or adolescent with headache. Second, generally, the patient’s regular provider would make the determination as to which intervention(s) would be used and what the appropriate goal for treatment would be based on their knowledge of the patient. For example, for some patients with chronic migraine refractory to multiple therapies, the treatment goal may be reduction of pain to their baseline intensity, whereas for patients with episodic migraine who have failed their HAP, headache freedom is likely a more appropriate goal as their baseline is no headache and failure to achieve pain freedom may be associated with a significant risk of headache recurrence. Third, the infusion center keeps migraine patients out of the ED, which lowers costs, allows ED providers to take care of life-threatening emergencies, and presumably helps to provide more personalized and standardized care.

When the patient does not experience significant relief in the ED or infusion center, inpatient admission for IV DHE or other therapies should be considered on a case-by-case basis. Again, there are numerous pathways to guide IV DHE administration, however, having a set plan with all team members (inpatient providers, nursing, pharmacy etc.) on board can facilitate treatment and improve outcomes. In most pediatric centers, treatment paradigms are based on the Cincinnati Children’s Hospital pathway.

Chronic headache care

As indicated in the introduction, patients with migraine, in particular those with chronic migraine, often require more headache specialist visits and medication(s). Ideally, headache clinics are multidisciplinary and comprise additional resources for those with more difficult and complex problems. Two examples of additional resources are included below for illustrative purposes.

The evidence for multidisciplinary headache care

Numerous studies support the multidisciplinary clinic model for headache care and this model has been formally endorsed in European and Canadian guidelines.

Prospective studies amongst adult headache patients have found that multidisciplinary clinics composed of neurologists, psychologists, physiotherapists, and headache nurses yield high treatment response rates and favorable outcomes amongst patients with a variety of primary headaches. In addition, a randomized controlled trial in adult patients with chronic migraine found that a multidisciplinary headache program was significantly more effective as compared with routine care, involving predominantly specialist referrals and pharmacologic management. The intervention group not only had improved pain-related outcomes, but also had lower depression scores, higher functional and health status scores, and lower disability after multidisciplinary care. The benefits of multidisciplinary care were sustained at postintervention follow-up.

Interestingly, it appears that younger patients may be most likely to have a favorable treatment response in multidisciplinary headache clinics. Two studies specifically carried out amongst pediatric headache patients also support the efficacy of multidisciplinary care for headache management. One prospective study of 169 children and adolescents with a variety of headaches found that multidisciplinary care provided by a neurologist, headache nurse, psychologist, and a physiotherapist resulted in 70% of the patients improving at follow-up, with the majority also having a significant increase in quality of life, and this was sustained at 12 months follow-up. Half of the patients had a 50% or greater reduction in headache frequency, which is a highly desirable treatment outcome for pediatric headache. In another prospective study amongst 96 pediatric headache patients, multidisciplinary care resulted in headache improvement in 93% of patients, and this was sustained as far as at 5-year follow-up. In addition, patients missed an average of 3 days less of school per month at 5-year follow-up as compared to baseline.

How to advocate for resources in a multidisciplinary headache clinic

Ease of access to allied health resources will vary considerably from center-to-center and from country-to-country. In addition, depending on the setting, the stakeholders who will execute the decisions about access to resources will vary. Depending on the country and center, one may be presenting their proposal for resource access to hospital administrators, to leaders within the Department or Division, to government officials (e.g., in a publicly funded health care system) or even to the board of a hospital’s charitable foundation. When preparing for these discussions, it is important to consider one’s audience and target the presentation according to their background and frame of reference. In general, when presenting proposals to decision-makers and stakeholders, arguments for multidisciplinary care can be made based on the evidence presented above, both from the clinical studies and guidelines that support this type of care model. For example, when advocating for access to psychology, one should present the data both from systematic reviews that support the efficacy of psychological interventions in the treatment of pediatric migraine, and from the recent AAN guidelines that stipulate that there is Class I evidence to support cognitive behavioral therapy plus amitriptyline for chronic pediatric migraine and that this evidence should be discussed with patients. In the case of psychological interventions for pediatric migraine, decision-makers and stakeholders should be made aware that these interventions are part of the standard of care, based on the evidence described above.

In addition to using data to advocate for resources, financial considerations can also be used to persuade decision-makers to fund programs. For example, if one is aiming to establish an infusion center for acute migraine management, data on the cost savings resulting from diverting patients away from the ED can be presented. Another way of highlighting the importance of multidisciplinary care is to include patients and families in these discussions with decision-makers. Adding the patient experience lens to the available data and financial considerations can strengthen the arguments for funding multidisciplinary care.

Although some data are available that can assist clinicians in advocating for resources for headache clinics, more work needs to be done. If we are to effectively advocate for better access to multidisciplinary pediatric headache care as a clinical and research community, we must carry out more studies on the efficacy and cost-benefit profile of pediatric headache care models. Having more data on the efficacy and relative costs associated with both outpatient headache clinics and acute infusion centers will render the task of convincing decision-makers to increase access to resources less arduous and ultimately result in better access to care for our patients.

Summary and recommendations

In summary, pediatric headache is very common and poses a great burden to the individual and to society through associated disability and socioeconomic impairment, which persists into adulthood if proper treatment is not accessed. The best available care model for pediatric headache is through a multidisciplinary clinic model, whereby care is integrated across the disciplines of neurology, psychology, nursing, and physiotherapy. This multidisciplinary clinic model is supported by evidence and endorsed by expert guidelines.