Headache: the patient's view

Introduction:- Headache is the commonest reason for neurology referrals, and the commonest neurological reason for patients attending Emergency Departments (EDs). An ethical approach to health care requires that patients be provided with informed choice about management. However researchers have not addressed patients’ concerns and choices in managing headache. This study aims to describe the views of patients, their fears, use of EDs , their perceived need for a scan and its outcome for them. Methods:- A qualitative study using semi-structured interviews with 19 adults aged 23-63, referred by Family Practitioners (FPs) to neurologists for primary headaches approximately two years previously. Audio-recorded interviews were transcribed and analysed thematically. Results:- Participants described fears about secondary organic causes for headache, like a brain tumor. They described their headaches as stressful, and leading to a vicious cycle of fear. Many believed they needed a brain scan and requested it. Participants reported relief of their fears after a scan, and in some cases relief of headache symptoms.Discussion:- UK FPs now have open access to brain scanning, which may relieve physical concerns. Interventions to address health-related anxiety may also help some consulters for headache

The ideas of people referred to neurologists about managing their headaches: A qualitative study

IntroductionHeadache is the commonest reason for General Practitioner (GP) referrals to neurologists, accounting for 25% of all referrals. Those that are referred, however, constitute only 2% of patients who consult GPs with headache. Previous research has suggested that referred patients are more fearful and anxious about their symptoms than those managed without referral. GPs described pressure to refer, often for a brain scan. We now report patients' perspectives.Aims/objectivesThe aim of this study was to explore the view of people consulting GPs with headache who were referred to neurologists.MethodsA qualitative study using semi-structured interviews with nineteen adults aged 23-63, referred by their GPs to neurologists for primary headaches. Audio-recorded interviews were transcribed and analysed thematically.ResultsParticipants described recurring concerns about secondary organic causes for headache, like a brain tumour. They described their headaches as stressful and a vicious cycle, with further headaches occurring. Some reported catastrophic fears, leading them to attend A&E. Many believed they needed a brain scan, and over half had had a scan, all of which were normal. Many reported dissatisfaction with care and use of alternative therapies.ConclusionPeople referred to neurologists for headache described fear and distress, particularly about the possibility of a brain tumour. GPs now have open access to scanning. This may relieve physical concerns. Interventions to address health-related anxiety may help some consulters for headache too

Psychological interventions for migraine:a systematic review

Migraine causes major health impairment and disability. Psychological interventions offer an addition to pharmacotherapy but they are not currently recommended by the National Institute of Clinical Excellence (NICE) or available in the National Health Service. We aimed to systematically review evidence on the efficacy of psychological interventions for migraine in adults. A search was done of MEDLINE, psychINFO, http://www.opengrey.eu, the meta-register of controlled trials and bibliographies. Twenty-four papers were included and rated independently by two people using the Yates scale, which has 35 points. Cochrane recommendations are that high quality reports score above the mid-point (18 points). Methods used in 17/24 papers were rated ‘high quality’. However, frequently descriptions of key areas such as randomisation methods were omitted. Eighteen studies measured effects of psychological interventions on headache-related outcomes, fifteen reporting significant improvements, ranging 20–67 %. Interventions also produced improvements in psychological outcomes. Few trials measured or reported improvement in disability or quality of life. We conclude that evidence supports the efficacy of psychological interventions in migraine. Over half of the studies were from the USA, which did not provide universal health care at the time of the study, so it is difficult to generalise results to typical populations in receipt of publically funded health services. We agree with the NICE recommendation that high quality pragmatic randomised controlled trials are needed in the UK

Developing and assessing the acceptability of an epilepsy first aid training intervention for patients who visit UK emergency departments: A multi-method study of patients and professionals

Epilepsy affects around 1% of the UK population; 40% of whom experience two or more seizures annually. However, most Emergency Department (ED) visits by people with epilepsy (PWE) are clinically unnecessary. Evidence highlights that with correct training, seizures can be safely managed by patients and their families within the community. Arguably therefore, PWE who frequently visit the ED might benefit from a self-management intervention that improves their own and their families' confidence and ability in managing seizures. Currently, no such intervention is available for PWE attending the ED. A collaborative approach (patients, carers, health professionals) was adopted to develop a patient-focused, self-management intervention. An existing group-based seizure management course, offered by the Epilepsy Society, was adapted. Collaborative feedback was sought via a base-line document review, one-to-one semi-structured interviews, and focus group discussions. The applied framework provided a systematic approach from development through to implementation. Participant feedback overall was extremely positive. People with epilepsy who visit the ED reported a positive view of epilepsy seizure first aid training and associated educational materials. Their feedback was then used to develop the optimized intervention presented here. Strengths and perceived barriers to successful implementation and participation, as well as the practical and psychosocial benefits, were identified. We describe the developed intervention together with the process followed. This description, while being project-specific, provides a useful template to assist in the development of interventions more generally. Ongoing evaluation will determine the effects of the training intervention on participants' behavior

Headache Diagnosis in Primary Care

Introduction: Doctors in primary care are responsible for diagnosing and managing patients with headache, but frequently lack confidence in doing so. We aimed to compare Family Practitioners’ (FPs) diagnosis of headaches to classification based on a symptom questionnaire, and to describe how classification links to other important clinical features. Methods: This was an observational study of patients attending primary care doctors for headache. Main outcome measures: Patients completed a questionnaire including the Headache Impact Test, the Migraine Disability Assessment Score, the Hospital Anxiety and Depression Scale, the Illness Perceptions Questionnaire, a satisfaction scale, a service use inventory and a symptom questionnaire rated by two Practitioners with Special Interest (PSIs) in Headache. Results: 255 patients completed questionnaires. There was low agreement between FP diagnosis and classification using the symptom questionnaire. FPs frequently did not use the diagnosis migraine, when patient reported symptoms which justified this. FPs did not classify patients with ≥15 days of headache separately as chronic daily headache (CDH), and this could be because the classification system used does not have that code. Patients classified as CDH using the symptom questionnaire reported more disability, more symptoms of anxiety and depression (HADS), more service use, and less satisfaction with FP care. Conclusion: Patients, who present with headache in primary care, tend to receive non-specific diagnoses. Having a system that would allow separate classification of people with headache of ≥ 15 days a month might help FPs to explore and address associated features with patients in terms of disability, psychological co-morbidity and cost, and improve satisfaction with care

A comparison of the responsiveness of EQ-5D-5L and the QOLIE-31P and mapping of QOLIE-31P to EQ-5D-5L in epilepsy

Objective: To investigate the responsiveness of and correlation between the EQ-5D-5L and the QOLIE-31P in patients with epilepsy, and develop a mapping function to predict EQ-5D-5L values based on the QOLIE-31P for use in economic evaluations. Methods: The dataset was derived from two clinical trials, the ZMILE study in the Netherlands and the SMILE study in the UK. In both studies, patients’ quality of life using the EQ-5D-5L and QOLIE-31P was measured at baseline and 12 months follow-up. Spearman’s correlations, effect sizes (EF) and standardized response means (SRM) were calculated for both the EQ-5D-5L and QOLIE-31P domains and sub scores. Mapping functions were derived using ordinary least square (OLS) and censored least absolute deviations models. Results: A total of 509 patients were included in this study. Low to moderately strong significant correlations were found between both instruments. The EQ-5D-5L showed high ceiling effects and small EFs and SRMs, whereas the QOLIE-31P did not show ceiling effects and also showed small to moderate EFs and SRMs. Results of the different mapping functions indicate that the highest adjusted R2 we were able to regress was 0.265 using an OLS model with squared terms, leading to a mean absolute error of 0.103. Conclusions: Results presented in this study emphasize the shortcomings of the EQ-5D-5L in epilepsy and the importance of the development of condition-specific preference-based instruments which can be used within the QALY framework. In addition, the usefulness of the constructed mapping function in economic evaluations is questionable

Characteristics associated with quality of life among people with drug-resistant epilepsy

Quality of Life (QoL) is the preferred outcome in non-pharmacological trials, but there is little UK population evidence of QoL in epilepsy. In advance of evaluating an epilepsy self-management course we aimed to describe, among UK participants, what clinical and psycho-social characteristics are associated with QoL. We recruited 404 adults attending specialist clinics, with at least two seizures in the prior year and measured their self-reported seizure frequency, co-morbidity, psychological distress, social characteristics, including self-mastery and stigma, and epilepsy-specific QoL (QOLIE-31-P). Mean age was 42 years, 54% were female, and 75% white. Median time since diagnosis was 18 years, and 69% experienced ≥10 seizures in the prior year. Nearly half (46%) reported additional medical or psychiatric conditions, 54% reported current anxiety and 28% reported current depression symptoms at borderline or case level, with 63% reporting felt stigma. While a maximum QOLIE-31-P score is 100, participants’ mean score was 66, with a wide range (25–99). In order of large to small magnitude: depression, low self-mastery, anxiety, felt stigma, a history of medical and psychiatric comorbidity, low self-reported medication adherence, and greater seizure frequency were associated with low QOLIE-31-P scores. Despite specialist care, UK people with epilepsy and persistent seizures experience low QoL. If QoL is the main outcome in epilepsy trials, developing and evaluating ways to reduce psychological and social disadvantage are likely to be of primary importance. Educational courses may not change QoL, but be one component supporting self-management for people with long-term conditions, like epilepsy