Abstract
Background
Despite a substantial burden, the needs of headache sufferers are invariably unmet (1). For example, less than 50% of migraine patients are satisfied with their current treatment (2). The majority use non-prescription medication and do not seek medical help (3). When they do so, the diagnosis is often incorrect (4) and the condition is poorly managed (5).
From a broader healthcare perspective, there are increasing demands for improvements in the efficiency and quality in all clinical areas. Although in many countries the focus still remains on providing basic services, in developed health systems these demands have been translated into a number of policy objectives. These include: an acceptance that all clinical decisions have resource dimensions against a background of limited healthcare budgets; the need for equitable distribution of healthcare resources; a systemisation of clinical work underpinned by external evidence; and broader team-based approaches to clinical work with a shared decision-making process that includes the patient. The World Health Organization has acknowledged that these policy objectives irrespective of economic, sociocultural and political characteristics are best addressed within a primary care setting (6).
Historically, the International Headache Society (IHS) has reflected a secondary care focus but the importance of primary care as a setting to reduce the burden of headache has been recognised with the recent development of an IHS Primary Care Interest Group. This paper outlines the context of this new group and suggests how it might develop.
What is primary care?
Primary care is the setting that provides first point of entry into a healthcare system. It is characterised by presentations that are undiagnosed and not limited by problem origin whether biological, social or psychological. The primary care practitioner is a generalist who provides comprehensive and continuing care in this setting and provides a gatekeeper role to the health system. Traditionally, the practitioner was medically trained but, more recently, nurse practitioners have complemented or substituted the role of the general medical practitioner.
The majority of headache patients can be treated in primary care (7,8). This setting is more appropriate to address not only co-morbidities but the complex psychosocial factors that are often an important factor in the pathogenesis of headache (9).
The IHS primary care group as a community of practice
A ‘community of practice’ refers to a description of relating that occurs through particular activities or practices undertaken by a group of people that have similar interests. It facilitates their sharing of knowledge and negotiating of meaning amongst them (10). Communities of practice are groups of people who learn informally from each other by sharing know-how. They acknowledge the importance of shared, tacit practical knowledge and the collective ability of professionals to formulate and adapt knowledge in practice. Three structural elements are recognised:
The initial focus for the IHS primary care community of practice will be the headache nurse practitioner and general practitioner with a special interest in headache and three initial objectives are proposed.
To raise awareness amongst primary care practitioners of the impact of headache and to improve its diagnosis and management
Headache is not well managed in primary care. For example, although over 80% of headache presentations in primary care are migraine (11), less than 20% attain this diagnosis (12). Even when the diagnosis is made, treatment is often inadequate and evidence-based guidelines are seldom followed (13–16). Even simple measures such as effective communication and an awareness of headache-related disability can have a powerful influence on improving clinical outcomes (17,18).
Encourage research into headache in primary care
The reasons for poor management of headache in primary care are not well understood but poor patient expectation, limited physician experience and lack of empathy or misdiagnosis have been suggested as possibilities (19). Research is needed to explore why patients are reluctant to seek help and, when they do so, why their problem is not adequately addressed. However, the problems in this area should not be underestimated. Headache research is under-funded in relation to other disease areas and research capacity in primary care is limited.
To work closely with other relevant organisations both within and outside of the IHS
There will be similar objectives within existing IHS organisations such as the Global Campaign and it will be important to work together and not to duplicate effort. Input into other global organisations such as the World Organization of National Colleges, Academies and Academic Associations of General Practitioners/Family Physicians (WONCA) will help to ensure the dissemination of research and education to primary care practitioners world-wide. In some countries, working with local agencies will be relevant. For example, in the UK the Royal College of General Practitioners has nominated headache as a key clinical area.
Conclusions
In many parts of the world, the volume of headache referrals to neurologists is difficult to justify from clinical and cost-effective perspectives. The common headache disorders require no special investigation and are manageable with skills generally available in primary care.
The challenges that are presented by improving headache management in primary care are substantial. The majority of headache presentations remain undiagnosed even in developed health systems. Nevertheless, in the medium term, the greatest reduction in headache burden can be gained not from new scientific discovery or therapeutic development but from small and basic improvements in primary care management – taking the patient seriously, making a diagnosis and initiating basic treatment.
What does this all mean from a practical perspective? I invite interested primary care practitioners who wish to share in this IHS community of practice and to initiate a dialogue to contact me on (su1838@eclipse.co.uk). All ideas or aspirations would be welcome.