ADDCA – Chronic Pain Patients Association of Azores
In the event MAKING VISIBLE THE INVISIBLE ON HEADACHE PAIN: SHARING SUCCESSFUL EXPERIENCES ACROSS EUROPE, in the European Parliament, the 24th January 2018, Portugal was represented by Raquel Gouveia (Scientific Commission of Portuguese Headache Society, PHS) and Maria Teresa Flor de Lima (Chronic Pain Patients Association of Azores , ADDCA, member of PAE).
Our mission was to share successful experiences of Headache Care in Portugal, to point out some good examples of headache management as headache is a world-wide problem. Although there are many other headache types, some even more intense and with higher individual disability than migraine, migraine is the second most common, with an average global prevalence of 13 %. It´s high functional impact and high prevalence make it the most disabling headache disorder and one of the highest causes of years lived with disability in the world, having greater impact in the younger population.
«Lifting the Burden», a global campaign around the world, of which PHS is a member, has made a substantial work published in the Atlas of Headache disorders and resources in the world, which is an extremely useful tool to this discussion.
Key messages of this report are that headache disorders and under-recognized, under-diagnosed and under-treated; most countries do not even consider headache in their health reports. Headache disorders taken together have high individual impact and a huge social and financial cost, mostly indirect cost related to productivity loss. Direct healthcare costs of treating headache are modest, so individual and social impact of effective treatment is potentially very rewarding and cost-effective. Barriers to treatment include mainly lack of professional education and interest on headache disorders, absence of health care services organization for headache patients and non-availability of adequate medication for these patients and some of this challenges we have in Portugal.
In Portugal, the estimate prevalence of Migraine is of around one million individuals, based on a prevalence study conducted 20 years ago. The Portuguese National Health System, PNHS, does not have a plan or strategy for health care in headache; there are no guidelines or requirements to evaluate or treat headache patients; all headache clinics are open locally, driven by some neurologist’s experience and interest and from patient needs – up to 30% of general neurology consultations are of headache patients.
In total, we have around 17 hospitals with headache outpatient clinics, most of those in the larger population areas, with some scarcity in the interior. In the larger cities, Lisboa and Porto, several centers provide service for headache; all private healthcare providers that work in headache care are in these two cities, while public system covers most of the country.
In three public centers, Lisboa, Porto and Coimbra, the association with Universities results in some research activity in Headache. In Porto there is a strong group working on genetics, in Lisbon our group works on clinical aspects and physiopathology; in Coimbra work is being developed in headache co-morbidities.
Our PNHS is organized with a structured referral pathway, from community doctors (GPs/ family doctors) that can refer to neurologists, whom in turn refer to Headache Clinics. This leaves headache clinics with the 2 to 5% of very difficult patients. Most patients are managed, of course, in the GP/ family doctor level, and although some are motivated and are able to provide adequate care, many are overwhelmed with other clinical priorities imposed by the national health care plan and with bureaucratic issues that restrict their ability to adequate care for these patients, which needs time.
There are not imposed restrictions to the use of any headache medication and all are co-payed or free, according to patients’ income.
In private practice, there is self-referral and referral from other doctors, access is not restrained. Patient´s self-support the clinic visits or have systems to co-finance their health care expenses such as insurances or work-related health sub-systems. Very specific hospital based treatments often are excluded from these plans.
In the public system there are a lot of positive aspects – there is universal coverage and no restriction to access, also there are no restrictions to treatment, so we can treat any patient virtually with anything. There is one limitation that is the prescription of triptans, acute migraine treatment drugs, to ambulatory care – despite its price being partly covered by the national health system, often it’s cost is still high for the majority of our population.
Raquel Gouveia works in a private system where it is easier to work with a multidisciplinary team, so we included from the start physical therapy, psychiatry, gynecology and dentistry; today we also have nurses, psychologists and family doctors so is easier to articulate to provide better care. Patient access is easier, and does not have to follow referral pathway. Private health care is more prone to partner up with technological companies, so we were able to develop a Digital Clinic with on-line tools to monitor patient related outcomes and provide the option of tele-consultations, which we started routinely in the last quarter of 2016.
Headache patients are not represented in any association or advocacy group in Portugal but PHS (affiliated to the European Headache Federation and to the International Headache Society and it works with the Portuguese Neurological Society), is a medical and scientific association that promotes educational initiatives for healthcare professionals and supports research in the headache field. There were produced National Treatment Guidelines and translation of the International Classification of Headache Disorders which lead to standardization of treatment care options in headache clinics. It´s organized regularly postgraduate training courses for GPs, neurologists and neurology residents and annual meetings for doctors interested in headache to discuss difficult clinical challenges and research options, promoting prizes and scholarships for research in the headache field.
Maria Teresa Flor de Lima presented the problems at a regional level, where there are not Headache Consultations but a Program to Control Pain in general, implemented since 2009.
Although migraine and most headaches are chronic conditions, the diagnosis and treatment of headache and migraine is not identical to the treatment of chronic pain in general but in pain consultations we treat also headaches.
The study of prevalence in Azores Archipelago is based in GP registrations: in total 246 772 inhabitants were registered: 5 675 (2.3%) cases of headache, 4 304 (1.75%) of migraine, 49 clusters and 1 345 tension headache, with a prevalence of two to three times in woman.
At the end some proposals were identified, as Neurologists and Doctors specialized in Pain Medicine give hands and work together, organization of multidisciplinary teams and, in future, a Headache Patients Association.