Primary care guidelines in rheumatology.

‘Guidelines are systematically developed statements to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances’ [1]. Their development began in the 1970s and there has been a huge proliferation of guidelines for the management of medical conditions over recent years. This has been fuelled by The National Institute for Clinical Excellence (NICE), who produce clinical guidelines and recommendations on the appropriate treatment and care of people with specific diseases and conditions within the NHS in England and Wales. NICE suggest four ways in which clinical guidelines should be helpful: (i) they should improve patient care by making recommendations for the treatment and care of people by health professionals; (ii) they should be used to develop standards to assess the clinical practice of health professionals; (iii) they should be used in the education and training of health professionals; and (iv) they should help patients to make informed decisions, and improve communication between the patient and health professional [2]. We will consider these four aspects in turn. There is some evidence from rigorous evaluations of guideline implementation that guidelines can improve patient care, although whether they do this in routine clinical practice is unclear [3]. Evidence shows that guidelines improve the consistency of patient care and they are felt to play an important role in making our cash-limited system more equitable [4]. Guidelines can be used to influence public policy and highlight potentially neglected areas of medicine. They certainly provide a basis for auditing practice and may form part of a doctors’ assessment if referred to the National Clinical Assessment Service (an advisory body for doctors and dentists in difficulty) [5]. These are only valid if following the guidelines produces a better clinical outcome and, as already mentioned, evidence for this occurring in clinical practice needs to be collected. The reduction in junior doctors’ hours, driven by the European working time directive and the shortening of training programmes, has made the training aspect of guidelines more important [6]. There is a fear that guidelines are being made to act as a short cut to experience. For example, guidelines could allow individuals with inadequate clinical exposure or experience to act independently, simply referring their decisions to a flow chart. It is essential that guidelines are not used in this way or as a substitute for education. They should only be seen as one of many strategies that can help improve the quality of care of patients. Evidence that patients are using guidelines in order to inform discussions with their health care professionals is also lacking. Guidelines are not generally of assistance to experts as they themselves know their field well and can interpret the evidence base applicable to a given clinical situation, ignoring the guideline when appropriate. Guidelines can be helpful for experts straying outside their particular area of expertise and for juniors who lack experience. Most important numerically is primary care, where a general practitioner (GP) cannot be expected to be an expert in any one area. In practice, guidelines can be very difficult to follow and often their conclusions need to be ignored for good medical reasons. This stems from the inherent uncertainties of medical practice, the individuality of the patient, the constraints of local practice and the interpretation of evidence. The medical defence union report that they receive about 30 calls a month from doctors regarding guidelines and are commonly asked what legal status guidelines have and whether or not they must be followed. Their advisors comment that, if a doctor deviates from a guideline, good contemporary clinical records documenting their decisions should be made [7]. Primary care does not function in neat diagnostic categories. Many patients, on presentation, do not fit with a diagnosis, and even the question of whether this is a significant illness cannot be answered. This occurs because patients are seen too early in the course of their disease, they present with symptoms that have not been recognized in a diagnostic category or they may have multiple pathologies. This has been likened to GPs working in a swamp, where the situations dealt with are confusing messes, compared with consultants working on the high, hard ground, where problems may be better defined [8]. Unfortunately, published guidelines tend to be disease-orientated, which is not the manner in which patients present and also demand that an appropriate diagnosis is made first. The evidence used in the construction of guidelines has major limitations. The results of a study apply only to the population and the disease studied. A decision needs to be made as to what extent it applies to the person and the presenting disease. In what ways was the study population different from this patient? How certain and how variable is the diagnostic category you are using and was that encompassed by the study? The answers to these questions will indicate levels of uncertainty that need interpretation, and make dogmatic advice invalid. Naı̈ve doctors who follow guidelines without questioning their advice may run into problems, as was highlighted in a recent case report in the Lancet in which strict adherence to chest pain guidelines would have resulted in a patient with an aortic dissection receiving thrombolysis [9, 10]. Grade A evidence is collected in randomized controlled trials which are conducted on highly selected patients. Other coexisting diseases are commonly excluded, as are other medications. In some guidelines, grade A evidence is found only for drug interventions where the regulatory procedures demand such evidence. Another limitation of evidence occurs when the study has not been done either because of the difficulty of recruitment, such as in a rare disease, or difficulty in performing the study because of methodological problems, such as inadequate outcome measures. There are also biases in relation to what gets published. There needs to be some leeway in the guidance to allow clinical judgement to be used. This is often based on unspecified criteria, including past experience, and will include features of the patient and the impact in their personal circumstances, their values and their preferences. There will be many other clues that make us think a patient is ill or not and these are not yet well enough understood to be included in guidance. Guidelines, as currently written, tend to ignore the patient and their priorities and concerns. Usually, guidelines are written by ‘experts’ who may see a different spectrum of disease from the target audience, e.g. primary care, and have fewer problems with diagnostic uncertainty as these are excluded from their practice or the guideline. To generalists, these guidelines may seem self-serving, biased and threatening [4], which would reduce the possibility of them being used. It is therefore important that guidelines are written by those who would use them [11].