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1.  A Primary Care Migraine Education Program has Benefit on Headache Impact and Quality of Life: Results from the Mercy Migraine Management Program 
Headache  2010;50(4):600-612.
Objective
The objective of this study was to evaluate the effectiveness of the Mercy Migraine Management Program (MMMP), an educational program for physicians and patients. The primary outcome was change in headache days from baseline at 3, 6, and 12 months. Secondary outcomes were changes in migraine-related disability and quality of life, worry about headaches, self-efficacy for managing migraines, ER visits for headache, and satisfaction with headache care.
Background
Despite progress in the understanding of the pathophysiology of migraine and development of effective therapeutic agents, many practitioners and patients continue to lack the knowledge and skills to effectively manage migraine. Educational efforts have been helpful in improving the quality of care and quality of life for migraine sufferers. However, little work has been done to evaluate these changes over a longer period of time. Also, there is a paucity of published research evaluating the influence of education about migraine management on cognitive and emotional factors (e.g., self-efficacy for managing headaches, worry about headaches).
Methods
In this open-label, prospective study, 284 individuals with migraine (92% female, mean age = 41.6) participated in the MMMP, an educational and skills based program. Of the 284 who participated in the program, 228 (80%) provided data about their headache frequency, headache-related disability (as measured by the Headache Impact Test-6 (HIT-6), migraine-specific quality of life (MSQ), worry about headaches, self-efficacy for managing headaches, ER visits for headaches, and satisfaction with care at four time points over 12 months (baseline, 3 months, 6 months, 12 months).
Results
Overall, 46% (106) of subjects reported a 50% or greater reduction in headache frequency. Over 12 months, patients reported fewer headaches and improvement on the HIT-6 and MSQ (all p < .001). The improvement in headache impact and quality of life was greater among those who had more worry about their headaches at baseline. There were also significant improvements in ‘worry about headaches’, ‘self-efficacy for managing headaches’, and ‘satisfaction with headache care’.
Conclusion
The findings demonstrate that patients participating in the MMMP reported improvements in their headache frequency as well as the cognitive and emotional aspects of headache management. This program was especially helpful among those with high amounts of worry about their headaches at the beginning of the program. The findings from this study are impetus for further research that will more clearly, through evaluate the effects of education and skill development not only on headache but also emotional and cognitive influences.
doi:10.1111/j.1526-4610.2010.01618.x
PMCID: PMC2872510  PMID: 20148982
2.  Neuroimaging for the Evaluation of Chronic Headaches 
Executive Summary
Objective
The objectives of this evidence based review are:
i) To determine the effectiveness of computed tomography (CT) and magnetic resonance imaging (MRI) scans in the evaluation of persons with a chronic headache and a normal neurological examination.
ii) To determine the comparative effectiveness of CT and MRI scans for detecting significant intracranial abnormalities in persons with chronic headache and a normal neurological exam.
iii) To determine the budget impact of CT and MRI scans for persons with a chronic headache and a normal neurological exam.
Clinical Need: Condition and Target Population
Headaches disorders are generally classified as either primary or secondary with further sub-classifications into specific headache types. Primary headaches are those not caused by a disease or medical condition and include i) tension-type headache, ii) migraine, iii) cluster headache and, iv) other primary headaches, such as hemicrania continua and new daily persistent headache. Secondary headaches include those headaches caused by an underlying medical condition. While primary headaches disorders are far more frequent than secondary headache disorders, there is an urge to carry out neuroimaging studies (CT and/or MRI scans) out of fear of missing uncommon secondary causes and often to relieve patient anxiety.
Tension type headaches are the most common primary headache disorder and migraines are the most common severe primary headache disorder. Cluster headaches are a type of trigeminal autonomic cephalalgia and are less common than migraines and tension type headaches. Chronic headaches are defined as headaches present for at least 3 months and lasting greater than or equal to 15 days per month. The International Classification of Headache Disorders states that for most secondary headaches the characteristics of the headache are poorly described in the literature and for those headache disorders where it is well described there are few diagnostically important features.
The global prevalence of headache in general in the adult population is estimated at 46%, for tension-type headache it is 42% and 11% for migraine headache. The estimated prevalence of cluster headaches is 0.1% or 1 in 1000 persons. The prevalence of chronic daily headache is estimated at 3%.
Neuroimaging
Computed Tomography
Computed tomography (CT) is a medical imaging technique used to aid diagnosis and to guide interventional and therapeutic procedures. It allows rapid acquisition of high-resolution three-dimensional images, providing radiologists and other physicians with cross-sectional views of a person’s anatomy. CT scanning poses risk of radiation exposure. The radiation exposure from a conventional CT scanner may emit effective doses of 2-4mSv for a typical head CT.
Magnetic Resonance Imaging
Magnetic resonance imaging (MRI) is a medical imaging technique used to aid diagnosis but unlike CT it does not use ionizing radiation. Instead, it uses a strong magnetic field to image a person’s anatomy. Compared to CT, MRI can provide increased contrast between the soft tissues of the body. Because of the persistent magnetic field, extra care is required in the magnetic resonance environment to ensure that injury or harm does not come to any personnel while in the environment.
Research Questions
What is the effectiveness of CT and MRI scanning in the evaluation of persons with a chronic headache and a normal neurological examination?
What is the comparative effectiveness of CT and MRI scanning for detecting significant intracranial abnormality in persons with chronic headache and a normal neurological exam?
What is the budget impact of CT and MRI scans for persons with a chronic headache and a normal neurological exam.
Research Methods
Literature Search
Search Strategy
A literature search was performed on February 18, 2010 using OVID MEDLINE, MEDLINE In-Process and Other Non-Indexed Citations, EMBASE, the Cumulative Index to Nursing & Allied Health Literature (CINAHL), the Cochrane Library, and the International Agency for Health Technology Assessment (INAHTA) for studies published from January, 2005 to February, 2010. Abstracts were reviewed by a single reviewer and, for those studies meeting the eligibility criteria full-text articles were obtained. Reference lists were also examined for any additional relevant studies not identified through the search. Articles with an unknown eligibility were reviewed with a second clinical epidemiologist and then a group of epidemiologists until consensus was established.
Inclusion Criteria
Systematic reviews, randomized controlled trials, observational studies
Outpatient adult population with chronic headache and normal neurological exam
Studies reporting likelihood ratio of clinical variables for a significant intracranial abnormality
English language studies
2005-present
Exclusion Criteria
Studies which report outcomes for persons with seizures, focal symptoms, recent/new onset headache, change in presentation, thunderclap headache, and headache due to trauma
Persons with abnormal neurological examination
Case reports
Outcomes of Interest
Primary Outcome
Probability for intracranial abnormality
Secondary Outcome
Patient relief from anxiety
System service use
System costs
Detection rates for significant abnormalities in MRI and CT scans
Summary of Findings
Effectiveness
One systematic review, 1 small RCT, and 1 observational study met the inclusion and exclusion criteria. The systematic review completed by Detsky, et al. reported the likelihood ratios of specific clinical variables to predict significant intracranial abnormalities. The RCT completed by Howard et al., evaluated whether neuroimaging persons with chronic headache increased or reduced patient anxiety. The prospective observational study by Sempere et al., provided evidence for the pre-test probability of intracranial abnormalities in persons with chronic headache as well as minimal data on the comparative effectiveness of CT and MRI to detect intracranial abnormalities.
Outcome 1: Pre-test Probability.
The pre-test probability is usually related to the prevalence of the disease and can be adjusted depending on the characteristics of the population. The study by Sempere et al. determined the pre-test probability (prevalence) of significant intracranial abnormalities in persons with chronic headaches defined as headache experienced for at least a 4 week duration with a normal neurological exam. There is a pre-test probability of 0.9% (95% CI 0.5, 1.4) in persons with chronic headache and normal neurological exam. The highest pre-test probability of 5 found in persons with cluster headaches. The second highest, that of 3.7, was reported in persons with indeterminate type headache. There was a 0.75% rate of incidental findings.
Likelihood ratios for detecting a significant abnormality
Clinical findings from the history and physical may be used as screening test to predict abnormalities on neuroimaging. The extent to which the clinical variable may be a good predictive variable can be captured by reporting its likelihood ratio. The likelihood ratio provides an estimate of how much a test result will change the odds of having a disease or condition. The positive likelihood ratio (LR+) tells you how much the odds of having the disease increases when a test is positive. The negative likelihood ratio (LR-) tells you how much the odds of having the disease decreases when the test is negative.
Detsky et al., determined the likelihood ratio for specific clinical variable from 11 studies. There were 4 clinical variables with both statistically significant positive and negative likelihood ratios. These included: abnormal neurological exam (LR+ 5.3, LR- 0.72), undefined headache (LR+ 3.8, LR- 0.66), headache aggravated by exertion or valsalva (LR+ 2.3, LR- 0.70), and headache with vomiting (LR+ 1.8, and LR- 0.47). There were two clinical variables with a statistically significant positive likelihood ratio and non significant negative likelihood ratio. These included: cluster-type headache (LR+ 11, LR- 0.95), and headache with aura (LR+ 12.9, LR- 0.52). Finally, there were 8 clinical variables with both statistically non significant positive and negative likelihood ratios. These included: headache with focal symptoms, new onset headache, quick onset headache, worsening headache, male gender, headache with nausea, increased headache severity, and migraine type headache.
Outcome 2: Relief from Anxiety
Howard et al. completed an RCT of 150 persons to determine if neuroimaging for headaches was anxiolytic or anxiogenic. Persons were randomized to receiving either an MRI scan or no scan for investigation of their headache. The study population was stratified into those persons with a Hospital Anxiety and Depression scale (HADS) > 11 (the high anxiety and depression group) and those < 11 (the low anxiety and depression) so that there were 4 groups:
Group 1: High anxiety and depression, no scan group
Group 2: High anxiety and depression, scan group
Group 3: Low anxiety and depression, no scan group
Group 4: Low anxiety and depression, scan group
Anxiety
There was no evidence for any overall reduction in anxiety at 1 year as measured by a visual analogue scale of ‘level of worry’ when analysed by whether the person received a scan or not. Similarly, there was no interaction between anxiety and depression status and whether a scan was offered or not on patient anxiety. Anxiety did not decrease at 1 year to any statistically significant degree in the high anxiety and depression group (HADS positive) compared with the low anxiety and depression group (HADS negative).
There are serious methodological limitations in this study design which may have contributed to these negative results. First, when considering the comparison of ‘scan’ vs. ‘no scan’ groups, 12 people (16%) in the ‘no scan group’ actually received a scan within the follow up year. If indeed scanning does reduce anxiety then this contamination of the ‘no scan’ group may have reduced the effect between the groups results resulting in a non significant difference in anxiety scores between the ‘scanned’ and the ‘no scan’ group. Second, there was an inadequate sample size at 1 year follow up in each of the 4 groups which may have contributed to a Type II statistical error (missing a difference when one may exist) when comparing scan vs. no scan by anxiety and depression status. Therefore, based on the results and study limitations it is inconclusive as to whether scanning reduces anxiety.
Outcome 3: System Services
Howard et al., considered services used and system costs a secondary outcome. These were determined by examining primary care case notes at 1 year for consultation rates, symptoms, further investigations, and contact with secondary and tertiary care.
System Services
The authors report that the use of neurologist and psychiatrist services was significantly higher for those persons not offered as scan, regardless of their anxiety and depression status (P<0.001 for neurologist, and P=0.033 for psychiatrist)
Outcome 4: System Costs
System Costs
There was evidence of statistically significantly lower system costs if persons with high levels of anxiety and depression (Hospital Anxiety and Depression Scale score >11) were provided with a scan (P=0.03 including inpatient costs, and 0.047 excluding inpatient costs).
Comparative Effectiveness of CT and MRI Scans
One study reported the detection rate for significant intracranial abnormalities using CT and MRI. In a cohort of 1876 persons with a non acute headache defined as any type of headache that had begun at least 4 weeks before enrolment Sempere et al. reported that the detection rate was 19/1432 (1.3%) using CT and 4/444 (0.9%) using MRI. Of 119 normal CT scans 2 (1.7%) had significant intracranial abnormality on MRI. The 2 cases were a small meningioma, and an acoustic neurinoma.
Summary
The evidence presented can be summarized as follows:
Pre-test Probability
Based on the results by Sempere et al., there is a low pre-test probability for intracranial abnormalities in persons with chronic headaches and a normal neurological exam (defined as headaches experiences for a minimum of 4 weeks). The Grade quality of evidence supporting this outcome is very low.
Likelihood Ratios
Based on the systematic review by Detsky et al., there is a statistically significant positive and negative likelihood ratio for the following clinical variables: abnormal neurological exam, undefined headache, headache aggravated by exertion or valsalva, headache with vomiting. Grade quality of evidence supporting this outcome is very low.
Based on the systematic review by Detsky et al. there is a statistically significant positive likelihood ratio but non statistically significant negative likelihood ratio for the following clinical variables: cluster headache and headache with aura. The Grade quality of evidence supporting this outcome is very low.
Based on the systematic review by Detsky et al., there is a non significant positive and negative likelihood ratio for the following clinical variables: headache with focal symptoms, new onset headache, quick onset headache, worsening headache, male gender, headache with nausea, increased headache severity, migraine type headache. The Grade quality of evidence supporting this outcome is very low.
Relief from Anxiety
Based on the RCT by Howard et al., it is inconclusive whether neuroimaging scans in persons with a chronic headache are anxiolytic. The Grade quality of evidence supporting this outcome is low.
System Services
Based on the RCT by Howard et al. scanning persons with chronic headache regardless of their anxiety and/or depression level reduces service use. The Grade quality of evidence is low.
System Costs
Based on the RCT by Howard et al., scanning persons with a score greater than 11 on the High Anxiety and Depression Scale reduces system costs. The Grade quality of evidence is moderate.
Comparative Effectiveness of CT and MRI Scans
There is sparse evidence to determine the relative effectiveness of CT compared with MRI scanning for the detection of intracranial abnormalities. The Grade quality of evidence supporting this is very low.
Economic Analysis
Ontario Perspective
Volumes for neuroimaging of the head i.e. CT and MRI scans, from the Ontario Health Insurance Plan (OHIP) data set were used to investigate trends in the province for Fiscal Years (FY) 2004-2009.
Assumptions were made in order to investigate neuroimaging of the head for the indication of headache. From the literature, 27% of all CT and 13% of all MRI scans for the head were assumed to include an indication of headache. From that same retrospective chart review and personal communication with the author 16% of CT scans and 4% of MRI scans for the head were for the sole indication of headache. From the Ministry of Health and Long-Term Care (MOHLTC) wait times data, 73% of all CT and 93% of all MRI scans in the province, irrespective of indication were outpatient procedures.
The expenditure for each FY reflects the volume for that year and since volumes have increased in the past 6 FYs, the expenditure has also increased with a pay-out reaching 3.0M and 2.8M for CT and MRI services of the head respectively for the indication of headache and a pay-out reaching 1.8M and 0.9M for CT and MRI services of the head respectively for the indication of headache only in FY 08/09.
Cost per Abnormal Finding
The yield of abnormal finding for a CT and MRI scan of the head for the indication of headache only is 2% and 5% respectively. Based on these yield a high-level estimate of the cost per abnormal finding with neuroimaging of the head for headache only can be calculated for each FY. In FY 08/09 there were 37,434 CT and 16,197 MRI scans of the head for headache only. These volumes would generate a yield of abnormal finding of 749 and 910 with a CT scan and MRI scan respectively. The expenditure for FY 08/09 was 1.8M and 0.9M for CT and MRI services respectively. Therefore the cost per abnormal finding would be $2,409 for CT and $957 for MRI. These cost per abnormal finding estimates were limited because they did not factor in comparators or the consequences associated with an abnormal reading or FNs. The estimates only consider the cost of the neuroimaging procedure and the yield of abnormal finding with the respective procedure.
PMCID: PMC3377587  PMID: 23074404
3.  How do patients referred to neurologists for headache differ from those managed in primary care? 
Background
Headache is the neurological symptom most frequently presented to GPs and referred to neurologists, but little is known about how referred patients differ from patients managed by GPs.
Aim
To describe and compare headache patients managed in primary care with those referred to neurologists.
Design of study
Prospective study.
Setting
Eighteen general practices in south-east England.
Method
This study examined 488 eligible patients consulting GPs with primary headache over 7 weeks and 81 patients referred to neurologists over 1 year. Headache disability was measured by the Migraine Disability Assessment Score, headache impact by the Headache Impact Test, emotional distress by the Hospital Anxiety and Depression Scale and illness perception was assessed using the Illness Perception Questionnaire.
Results
Participants were 303 patients who agreed to participate. Both groups reported severe disability and very severe impact on functioning. Referred patients consulted more frequently than those not referred in the 3 months before referral (P = 0.003). There was no significant difference between GP-managed and referred groups in mean headache disability, impact, anxiety, depression, or satisfaction with care. The referred group were more likely to link an increased number of symptoms to their headaches (P = 0.01), to have stronger emotional representations of their headaches (P = 0.006), to worry more (P = 0.001), and were made anxious by their headache symptoms (P = 0.044).
Conclusion
Patients who consult for headache experience severe disability and impact, and up to a third report anxiety and/or depression. Referral is not related to clinical severity of headaches, but is associated with higher consultation frequency and patients' anxiety and concern about their headache symptoms.
PMCID: PMC2047014  PMID: 17504590
headache; migraine disorders; neurology; primary health care; referral and consultation
4.  Holding on to the indispensable medication –A grounded theory on medication use from the perspective of persons with medication overuse headache 
Background
Medication overuse headache (MOH) is a chronic headache disorder, caused by overuse of acute medication. To date, it remains unclear why some people overuse these medications. The aim of this qualitative study was to explore how individuals with MOH use medications and other strategies to manage headaches in their daily lives, and their thoughts about their own use of acute medication. Our intention was to develop a theoretical model about the development of MOH, from the perspective of those with MOH.
Methods
Data collection and analysis were conducted according to grounded theory methodology. The participants were recruited via newspaper advertisements. Fourteen persons with MOH were interviewed in individual qualitative interviews.
Results
The basic process leading to medication overuse was holding on to the indispensable medication. The acute medication was indispensable to the participants because they perceived it as the only thing that could prevent headaches from ruining their lives. The participants perceived headaches as something that threatened to ruin their lives. As a result, they went to great lengths trying to find ways to manage it. They tried numerous strategies. However, the only strategy actually perceived as effective was the use of acute medication and they eventually became resigned to the idea that it was the only effective aid. The acute medication thus became indispensable. Their general intention was to use as little medication as possible but they found themselves compelled to medicate frequently to cope with their headaches. They did not like to think about their medication use and sometimes avoided keeping track of the amount used.
Conclusions
This qualitative study adds understanding to the process via which MOH develops from the perspective of those having MOH. Such knowledge may help bridge the gap between the perspectives of patients and health-care professionals.
doi:10.1186/1129-2377-14-43
PMCID: PMC3671143  PMID: 23697986
Headache; Medication use; Medication overuse headache; Qualitative study; Grounded theory; Patient perspective
5.  Natural History of Headache after Traumatic Brain Injury 
Journal of Neurotrauma  2011;28(9):1719-1725.
Abstract
Headache is one of the most common persisting symptoms after traumatic brain injury (TBI). Yet there is a paucity of prospective longitudinal studies of the incidence and prevalence of headache in a sample with a range of injury severity. We sought to describe the natural history of headache in the first year after TBI, and to determine the roles of prior history of headache, sex, and severity of TBI as risk factors for post-traumatic headache. A cohort of 452 acute, consecutive patients admitted to inpatient rehabilitation services with TBI were enrolled during their inpatient rehabilitation from February 2008 to June 2009. Subjects were enrolled across 7 acute rehabilitation centers designated as TBI Model Systems centers. They were prospectively assessed by structured interviews prior to inpatient rehabilitation discharge, and at 3, 6, and 12 months after injury. Results of this natural history study suggest that 71% of participants reported headache during the first year after injury. The prevalence of headache remained high over the first year, with more than 41% of participants reporting headache at 3, 6, and 12 months post-injury. Persons with a pre-injury history of headache (p<0.001) and females (p<0.01) were significantly more likely to report headache. The incidence of headache had no relation to TBI severity (p=0.67). Overall, headache is common in the first year after TBI, independent of the severity of injury range examined in this study. Use of the International Classification of Headache Disorders criteria requiring onset of headache within 1 week of injury underestimates rates of post-traumatic headache. Better understanding of the natural history of headache including timing, type, and risk factors should aid in the design of treatment studies to prevent or reduce the chronicity of headache and its disruptive effects on quality of life.
doi:10.1089/neu.2011.1914
PMCID: PMC3172878  PMID: 21732765
headache; natural history; traumatic brain injury
6.  Headaches precipitated by cough, prolonged exercise or sexual activity: a prospective etiological and clinical study 
The Journal of Headache and Pain  2008;9(5):259-266.
Headaches provoked by cough, prolonged physical exercise and sexual activity have not been studied prospectively, clinically and neuroradiologically. Our aim was to delimitate characteristics, etiology, response to treatment and neuroradiological diagnostic protocol of those patients who consult to a general Neurological Department because of provoked headache. Those patients who consulted due to provoked headaches between 1996 and 2006 were interviewed in depth and followed-up for at least 1 year. Neuroradiological protocol included cranio-cervical MRI for all patients with cough headache and dynamic cerebrospinal functional MRI in secondary cough headache cases. In patients with headache provoked by prolonged physical exercise or/and sexual activity cranial neuroimaging (CT and/or MRI) was performed and, in case of suspicion of subarachnoid bleeding, angioMRI and/or lumbar tap were carried out. A total of 6,412 patients consulted due to headache during the 10 years of the study. The number of patients who had consulted due to any of these headaches is 97 (1.5% of all headaches). Diagnostic distribution was as follows: 68 patients (70.1%) consulted due to cough headache, 11 (11.3%) due to exertional headache and 18 (18.6%) due to sexual headache. A total of 28 patients (41.2%) out of 68 were diagnosed of primary cough headache, while the remaining 40 (58.8%) had secondary cough headache, always due to structural lesions in the posterior fossa, which in most cases was a Chiari type I malformation. In seven patients, cough headache was precipitated by treatment with angiotensin-converting enzyme inhibitors. As compared to the primary variety, secondary cough headache began earlier (average 40 vs. 60 years old), was located posteriorly, lasted longer (5 years vs. 11 months), was associated with posterior fossa symptoms/signs and did not respond to indomethacin. All those patients showed difficulties in the cerebrospinal fluid circulation in the foramen magnum region in the dynamic MRI study and preoperative plateau waves, which disappeared after posterior fossa reconstruction. The mean age at onset for primary headaches provoked by physical exercise and sexual activity began at the same age (40 years old), shared clinical characteristics (bilateral, pulsating) and responded to beta-blockers. Contrary to cough headache, secondary cases are rare and the most frequent etiology was subarachnoid bleeding. In conclusion, these conditions account for a low proportion of headache consultations. These data show the total separation between cough headache versus headache due to physical exercise and sexual activity, confirm that these two latter headaches are clinical variants of the same entity and illustrate the clinical differences between the primary and secondary provoked headaches.
doi:10.1007/s10194-008-0063-5
PMCID: PMC3452197  PMID: 18751938
Chiari malformation; Cough headache; Exertional headache; Sexual headache
7.  Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies 
PLoS Medicine  2012;9(10):e1001331.
A systematic review of qualitative studies conducted by Frances Bunn and colleagues identifies and describes the experiences of patients and caregivers on receiving and adapting to a diagnosis of dementia.
Background
Early diagnosis and intervention for people with dementia is increasingly considered a priority, but practitioners are concerned with the effects of earlier diagnosis and interventions on patients and caregivers. This systematic review evaluates the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide practice.
Methods and Findings
We systematically reviewed qualitative studies exploring experiences of community-dwelling individuals with dementia, and their carers, around diagnosis and the transition to becoming a person with dementia. We searched PubMed, PsychINFO, Embase, CINAHL, and the British Nursing Index (all searched in May 2010 with no date restrictions; PubMed search updated in February 2012), checked reference lists, and undertook citation searches in PubMed and Google Scholar (ongoing to September 2011). We used thematic synthesis to identify key themes, commonalities, barriers to earlier diagnosis, and support identified as helpful. We identified 126 papers reporting 102 studies including a total of 3,095 participants. Three overarching themes emerged from our analysis: (1) pathways through diagnosis, including its impact on identity, roles, and relationships; (2) resolving conflicts to accommodate a diagnosis, including the acceptability of support, focusing on the present or the future, and the use or avoidance of knowledge; and (3) strategies and support to minimise the impact of dementia. Consistent barriers to diagnosis include stigma, normalisation of symptoms, and lack of knowledge. Studies report a lack of specialist support particularly post-diagnosis.
Conclusions
There is an extensive body of qualitative literature on the experiences of community-dwelling individuals with dementia on receiving and adapting to a diagnosis of dementia. We present a thematic analysis that could be useful to professionals working with people with dementia. We suggest that research emphasis should shift towards the development and evaluation of interventions, particularly those providing support after diagnosis.
Please see later in the article for the Editors' Summary.
Editors' Summary
Background
Dementia is a decline in mental ability severe enough to interfere with daily life. Alzheimer disease is the most common type of dementia. People with dementia usually have problems with two or more cognitive functions—thinking, language, memory, understanding, and judgment. Dementia is rare before the age of 65, but about a quarter of people over 85 have dementia. Because more people live longer these days, the number of patients with dementia is increasing. It is estimated that today between 40 and 50 million people live with dementia worldwide. By 2050, this number is expected to triple.
One way to study what dementia means to patients and their carers (most often spouses or other family members) is through qualitative research. Qualitative research aims to develop an in-depth understanding of individuals' experiences and behavior, as well as the reasons for their feelings and actions. In qualitative studies, researchers interview patients, their families, and doctors. When the studies are published, they usually contain direct quotations from interviews as well as summaries by the scientists who designed the interviews and analyzed the responses.
Why Was This Study Done?
This study was done to better understand the experiences and attitudes of patients and their carers surrounding dementia diagnosis. It focused on patients who lived and were cared for within the community (as opposed to people living in senior care facilities or other institutions). Most cases of dementia are progressive, meaning symptoms get worse over time. Diagnosis often happens at an advanced stage of the disease, and some patients never receive a formal diagnosis. This could have many possible reasons, including unawareness or denial of symptoms by patients and people close to them. The study was also trying to understand barriers to early diagnosis and what type of support is useful for newly diagnosed patients and carers.
What Did the Researchers Do and Find?
The researchers conducted a systematic search for published qualitative research studies that reported on the experience, beliefs, feelings, and attitudes surrounding dementia diagnosis. They identified and reviewed 102 such studies. Among the quotations and summaries of the individual studies, they looked for prominent and recurring themes. They also compared and contrasted the respective experiences of patients and carers.
Overall, they found that the complexity and variety of responses to a diagnosis of dementia means that making the diagnosis and conveying it to patients and carers is challenging. Negative connotations associated with dementia, inconsistent symptoms, and not knowing enough about the signs and symptoms were commonly reported barriers to early dementia diagnosis. It was often the carer who initiated the search for help from a doctor, and among patients, willingness and readiness to receive a diagnosis varied. Being told one had dementia had a big impact on a patient's identity and often caused feelings of loss, anger, fear, and frustration. Spouses had to adjust to increasingly unequal relationships and the transition to a role as carer. The strain associated with this often caused health problems in the carers as well. On the other hand, studies examining the experience of couples often reported that they found ways to continue working together as a team.
Adjusting to a dementia diagnosis is a complex process. Initially, most patients and carers experienced conflicts, for example, between autonomy and safety, between recognizing the need for help but reluctance to accept it, or between living in the present and dealing with anxiety about and preparing for the future. As these were resolved and as the disease progressed, the attitudes of patients and carers towards dementia often became more balanced and accepting. Many patients and their families adopted strategies to cope with the impact of dementia on their lives in order to manage the disease and maintain some sort of normal life. These included practical strategies involving reminders, social strategies such as relying on family support, and emotional strategies such as using humor. At some point many patients and carers reported that they were able to adopt positive mindsets and incorporate dementia in their lives.
The studies also pointed to an urgent need for support from outside the family, both right after diagnosis and subsequently. General practitioners and family physicians have important roles in helping patients and carers to get access to information, social and psychological support, and community care. The need for information was reported to be ongoing and varied, and meeting it required a variety of sources and formats. Key needs for patients and carers mentioned in the studies include information on financial aids and entitlements early on, and continued access to supportive professionals and specialists.
What Do These Findings Mean?
Qualitative studies to date on how patients and carers respond to a diagnosis of dementia provide a fairly detailed picture of their experiences. The summary provided here should help professionals to understand better the challenges patients and carers face around the time of diagnosis as well as their immediate and evolving needs. The results also suggest that future research should focus on the development and evaluation of ways to meet those needs.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001331.
Wikipedia has pages on dementia and qualitative research (note that Wikipedia is a free online encyclopedia that anyone can edit)
Alzheimer Europe, an umbrella organization of 34 Alzheimer associations from 30 countries across Europe, has a page on the different approaches to research
The UK Department of Health has pages on dementia, including guidelines for carers of people with dementia
MedlinePlus also has information about dementia
doi:10.1371/journal.pmed.1001331
PMCID: PMC3484131  PMID: 23118618
8.  Relation between headache in childhood and physical and psychiatric symptoms in adulthood: national birth cohort study 
BMJ : British Medical Journal  2001;322(7295):1145.
Objective
To elucidate the associations between frequent headache and psychosocial factors in childhood and to determine whether such children are at an increased risk of headache, multiple physical symptoms, and psychiatric symptoms in adulthood.
Design
Population based birth cohort study.
Setting
General population.
Participants
People participating in the national child development study, a population based birth cohort study established in 1958.
Main outcome measures
Headache, multiple physical symptoms, and psychiatric morbidity at age 33.
Results
Headache in childhood was associated with several psychosocial factors. Prospectively, children with frequent headache had an increased risk in adulthood of headache (odds ratio 2.22, 95% confidence interval 1.62 to 3.06), multiple physical symptoms (1.75, 1.46 to 2.10), and psychiatric morbidity (1.41, 1.20 to 1.66). The outcomes of headache and multiple physical symptoms were not accounted for by psychiatric morbidity.
Conclusion
Children with headache are at an increased risk of recurring headache in adulthood and may complain of other physical and psychiatric symptoms. Strategies for coping with psychosocial adversity in childhood may improve the prognosis in adulthood.
What is already known on this topicCommon somatic symptoms in childhood are associated with psychosocial factors and may increase the risk of physical and psychiatric symptoms in adulthoodNo study has yet examined at the general population level the outcome as an adult of headache, the commonest somatic complaint in childhoodWhat this study addsChildren who mention headache are more likely to experience psychosocial adversity and to grow up with an excess of both headache and other physical symptoms and psychiatric symptoms
PMCID: PMC31590  PMID: 11348907
9.  Potentially traumatic interpersonal events, psychological distress and recurrent headache in a population-based cohort of adolescents: the HUNT study 
BMJ Open  2013;3(7):e002997.
Objectives
Recurrent headache co-occurs commonly with psychological distress, such as anxiety or depression. Potentially traumatic interpersonal events (PTIEs) could represent important precursors of psychological distress and recurrent headache in adolescents. Our objective was to assess the hypothesised association between exposure to PTIEs and recurrent migraine and tension-type headache (TTH) in adolescents, and to further examine the potential impact of psychological distress on this relationship.
Design
Population-based, cross-sectional cohort study. The study includes self-reported data from youth on exposure to potentially traumatic events, psychological distress and a validated interview on headache.
Setting
The adolescent part of the Nord-Trøndelag Health Study 2006–2008 (HUNT), conducted in Norway.
Participants
A cohort of 10 464 adolescents were invited to the study. Age ranged from 12 to 20 years. The response rate was 73% (7620), of whom 50% (3832) were girls.
Main outcome measures
Data from the headache interview served as the outcome. Recurrent headache was defined as headache recurring at least monthly during the past year, and was subclassified into monthly, weekly and daily complaints. Subtypes were classified as TTH, migraine, migraine with TTH and/or non-classifiable headache, in accordance with the International Classification of Headache Disorders criteria, second edition.
Results
Multiple logistic regression analysis, adjusted for sociodemographics, showed consistently significant associations between exposure to PTIEs and recurrent headache, regardless of the frequency or subtype of headache. Increasing exposure to PTIEs was associated with higher prevalence of recurrent headache, indicating a dose–response relationship. The strength of associations between exposure to PTIEs and all recurrent headache disorders was significantly attenuated when psychological distress was entered into the regression equation.
Conclusions
The empirical evidence of a strong and cumulative relationship between exposure to PTIEs, psychological distress and recurrent headache indicates a need for the integration of somatic and psychological healthcare services for adolescents in the prevention, assessment and treatment of recurrent headache. Prospective studies are needed.
doi:10.1136/bmjopen-2013-002997
PMCID: PMC3731723  PMID: 23901028
Public Health
10.  Awareness of headache and of national headache society activities among primary care physicians – a qualitative study 
BMC Research Notes  2013;6:118.
Background
Headache is one of the most common symptoms in primary care. To improve the quality of headache diagnosis and management with the largest possible benefit for the general population, headache and pain societies around the world have recently been devoting more attention to headache in primary care.
The aim of the study was to investigate the potential contribution that national societies can make toward raising the awareness of primary headaches in general practice.
Findings
In a qualitative telephone survey, targeting primary care practices (PCP), we asked about the frequency of headache patients in their practices and inquired about their treatment and referral strategies.
A total of 1000 telephone interviews with PCP have been conducted. Three-hundred and fifty physicians have been directly interviewed, 95% of them see headache patients every week, 23% daily. Direct MRI referral is done by 84%. Sixty-two per cent of the physicians knew the Swiss headache society, 73% were interested in further education about headaches.
Conclusion
The survey yielded information about the physicians’ awareness of the Swiss Headache Society and its activities, and about their desire for continuing education in the area of headache. National headache societies should work to improve the cooperation between headache specialists and PCP, aiming for a better care for our patients with headache.
doi:10.1186/1756-0500-6-118
PMCID: PMC3637130  PMID: 23531195
Headache; Primary care; MRI; Awareness; National society; Migraine
11.  Magnitude, impact, and stability of primary headache subtypes: 30 year prospective Swiss cohort study 
Objective
To determine the prevalence, impact, and stability of different subtypes of headache in a 30 year prospective follow-up study of a general population sample.
Design
Prospective cohort study.
Setting
Canton of Zurich, Switzerland.
Participants
591 people aged 19–20 from a cohort of 4547 residents of Zurich, Switzerland, interviewed seven times across 30 years of follow-up.
Main outcome measures
Prevalence of headache; stability of the predominant subtype of headache over time; and age of onset, severity, impact, family history, use of healthcare services, and drugs for headache subtypes.
Results
The average one year prevalences of subtypes of headache were 0.9% (female:male ratio of 2.8) for migraine with aura, 10.9% (female:male ratio of 2.2) for migraine without aura, and 11.5% (female:male ratio of 1.2) for tension-type headache. Cumulative 30 year prevalences of headache subtypes were 3.0% for migraine with aura, 36.0% for migraine without aura, and 29.3% for tension-type headache. Despite the high prevalence of migraine without aura, most cases were transient and only about 20% continued to have migraine for more than half of the follow-up period. 69% of participants with migraine and 58% of those with tension-type headache manifested the same predominant subtype over time. However, the prospective stability of the predominant headache subtypes was quite low, with substantial crossover among the subtypes and no specific ordinal pattern of progression. A gradient of severity of clinical correlates and service use was present across headache subtypes; the greatest effect was for migraine with aura followed by migraine without aura, and then tension-type headache and unclassified headaches.
Conclusions
These findings highlight the importance of prospective follow-up of people with headache. The substantial longitudinal overlap among subtypes of headache shows the developmental heterogeneity of headache syndromes. Studies of the causes of headache that apply diagnostic nomenclature based on distinctions between discrete headache subtypes may not capture the true nature of headache in the general population.
PMCID: PMC3161722  PMID: 21868455
12.  Magnitude, impact, and stability of primary headache subtypes: 30 year prospective Swiss cohort study 
Objective To determine the prevalence, impact, and stability of different subtypes of headache in a 30 year prospective follow-up study of a general population sample.
Design Prospective cohort study.
Setting Canton of Zurich, Switzerland.
Participants 591 people aged 19-20 from a cohort of 4547 residents of Zurich, Switzerland, interviewed seven times across 30 years of follow-up.
Main outcome measures Prevalence of headache; stability of the predominant subtype of headache over time; and age of onset, severity, impact, family history, use of healthcare services, and drugs for headache subtypes.
Results The average one year prevalences of subtypes of headache were 0.9% (female:male ratio of 2.8) for migraine with aura, 10.9% (female:male ratio of 2.2) for migraine without aura, and 11.5% (female:male ratio of 1.2) for tension-type headache. Cumulative 30 year prevalences of headache subtypes were 3.0% for migraine with aura, 36.0% for migraine without aura, and 29.3% for tension-type headache. Despite the high prevalence of migraine without aura, most cases were transient and only about 20% continued to have migraine for more than half of the follow-up period. 69% of participants with migraine and 58% of those with tension-type headache manifested the same predominant subtype over time. However, the prospective stability of the predominant headache subtypes was quite low, with substantial crossover among the subtypes and no specific ordinal pattern of progression. A gradient of severity of clinical correlates and service use was present across headache subtypes; the greatest effect was for migraine with aura followed by migraine without aura, and then tension-type headache and unclassified headaches.
Conclusions These findings highlight the importance of prospective follow-up of people with headache. The substantial longitudinal overlap among subtypes of headache shows the developmental heterogeneity of headache syndromes. Studies of the causes of headache that apply diagnostic nomenclature based on distinctions between discrete headache subtypes may not capture the true nature of headache in the general population.
doi:10.1136/bmj.d5076
PMCID: PMC3161722  PMID: 21868455
13.  Patient pressure for referral for headache: a qualitative study of GPs'referral behaviour 
Background
Headache accounts for up to a third of new specialist neurology appointments, although brain lesions are extremely rare and there is little difference in clinical severity of referred patients and those managed in primary care. This study examines influences on GPs' referral for headache in the absence of clinical indicators.
Design of study
Qualitative interview study.
Setting
Eighteen urban and suburban general practices in the South Thames area, London.
Method
Purposive sample comprising GPs with varying numbers of referrals for headache over a 12-month period. Semi-structured interviews with 20 GPs were audio taped. Transcripts were analysed thematically using a framework approach.
Results
All GPs reported observing patient anxiety and experiencing pressure for referral. Readiness to refer in response to pressure was influenced by characteristics of the consultation, including frequent attendance, communication problems and time constraints. GPs' accounts showed variations in individual's willingness or ‘resistance’ to refer, reflecting differences in clinical confidence in identifying risks of brain tumour, personal tolerance of uncertainty, views of patients' ‘right’ to referral and perceptions of the therapeutic value of referral. A further source of variation was the local availability of services, including GPs with a specialist interest and charitably-funded clinics.
Conclusion
Referral for headache is often the outcome of patient pressure interacting with GP characteristics, organisational factors and service availability. Reducing specialist neurological referrals requires further training and support for some GPs in the diagnosis and management of headache. To reduce clinical uncertainty, good clinical prediction rules for headache and alternative referral pathways are required.
PMCID: PMC2032697  PMID: 17244421
doctor–patient relationship; headache; patient anxiety; referral; qualitative
14.  Impact of headache on sickness absence and utilisation of medical services: a Danish population study. 
STUDY OBJECTIVE--The aim was to study the extent and type of health service utilisation, medication habits, and sickness absence due to the primary headaches. DESIGN--This was a cross sectional epidemiological survey of headache disorders in a general population. Headache was diagnosed according to a structured interview and a neurological examination using the criteria of the International Headache Society. SETTING--A random sample of 25-64 year-old individuals was drawn from the Danish National Central Person Registry. All subjects were living in the Copenhagen County. PARTICIPANTS--740 subjects participated (76% of the sample); 119 had migraine and 578 had tension type headache. MAIN RESULTS--Among subjects with migraine 56% had, at some time, consulted their general practitioner because of the migraine. The corresponding percentage among subjects with tension type headache was 16. One or more specialists had been consulted by 16% of migraine sufferers and by 4% of subjects with tension type headache. The consultation rates of chiropractors and physiotherapists were 5-8%. Hospital admissions and supplementary laboratory investigations due to headache were rare (< 3%). Half of the migraine sufferers and 83% of subjects with tension type headache in the previous year had managed with at least one type of drug in the current year. Acetylsalicylic acid preparations and paracetamol were the most commonly used analgesics. Prophylaxis of migraine was used by 7%. In the preceding year 43% of employed migraine sufferers and 12% of employed subjects with tension type headache had missed one or more days of work because of headache. Most common was 1-7 days off work. The total loss of workdays per year due to migraine in the general population was estimated at 270 days per 1000 persons. For tension type headache the corresponding figure was 820. Women were more likely to consult a practitioner than men, whereas no significant sex difference emerged as regards absenteeism from work. CONCLUSIONS--The impact of the headache disorders on work performance in the general population is substantial, and the disorders merit increased attention.
PMCID: PMC1059617  PMID: 1431724
15.  Prevalence and Impact of Migraine and Tension-Type Headache in Korea 
Background and Purpose
The epidemiology and impact of headache disorders are only partially documented for Asian countries. We investigated the prevalence and impact of migraine and tension-type headache - which are the two most common primary headache disorders - in a Korean population.
Methods
A stratified random population sample of Koreans older than 19 years was selected and evaluated using a 29-item, semistructured interview. The questionnaire was designed to classify headache types according to the criteria of the International Classification of Headache Disorders, second edition, including migraine and tension-type headache. The questionnaire also included items on basic demographics such as age, gender, geographical region, education level, and income, and the impact of headache on the participant.
Results
Among the 1507 participants, the 1-year prevalence of all types of headaches was 61.4% (69.9% in women and 52.8% in men). The overall prevalence rates of migraine and tension-type headaches were 6.1% (9.2% in women and 2.9% in men) and 30.8% (29.3% in women and 32.2% in men), respectively. The prevalence of migraine peaked at the age of 40-49 years in women and 19-29 years in men. In contrast to migraine, the prevalence of tension-type headache was not influenced by either age or gender. Among individuals with migraine and tension-type headache, 31.5% and 7% reported being substantially or severely impacted by headache, respectively (Headache Impact Test score ≥56). Overall, 13.4% of all headache sufferers reported being either substantially or severely impacted by headache.
Conclusions
The 1-year prevalence rates of migraine and tension-type headache in the studied Korean population were 6.1% and 30.8%, respectively. One-third of migraineurs and some individuals with tension-type headache reported being either substantially or severely impacted by headache.
doi:10.3988/jcn.2012.8.3.204
PMCID: PMC3469801  PMID: 23091530
epidemiology; headache; impact; migraine; tension-type headache; prevalence
16.  Classification and clinical features of headache patients: an outpatient clinic study from China 
The Journal of Headache and Pain  2011;12(5):561-567.
This study aimed to analyze and classify the clinical features of headache in neurological outpatients. A cross-sectional study was conducted consecutively from March to May 2010 for headache among general neurological outpatients attending the First Affiliated Hospital of Chongqing Medical University. Personal interviews were carried out and a questionnaire was used to collect medical records. Diagnosis of headache was according to the International classification of headache disorders, 2nd edition (ICHD-II). Headache patients accounted for 19.5% of the general neurology clinic outpatients. A total of 843 (50.1%) patients were defined as having primary headache, 454 (27%) secondary headache, and 386 (23%) headache not otherwise specified (headache NOS). For primary headache, 401 (23.8%) had migraine, 399 (23.7%) tension-type headache (TTH), 8 (0.5%) cluster headache and 35 (2.1%) other headache types. Overall, migraine patients suffered (1) more severe headache intensity, (2) longer than 6 years of headache history and (3) more common analgesic medications use than TTH ones (p < 0.001).TTH patients had more frequent episodes of headaches than migraine patients, and typically headache frequency exceeded 15 days/month (p < 0.001); 22.8% of primary headache patients were defined as chronic daily headache. Almost 20% of outpatient visits to the general neurology department were of headache patients, predominantly primary headache of migraine and TTH. In outpatient headaches, more attention should be given to headache intensity and duration of headache history for migraine patients, while more attention to headache frequency should be given for the TTH ones.
doi:10.1007/s10194-011-0360-2
PMCID: PMC3173628  PMID: 21744226
Outpatient; Headache; Cross-sectional study; Clinical feature; Migraine
17.  Classification and clinical features of headache patients: an outpatient clinic study from China 
The Journal of Headache and Pain  2011;12(5):561-567.
This study aimed to analyze and classify the clinical features of headache in neurological outpatients. A cross-sectional study was conducted consecutively from March to May 2010 for headache among general neurological outpatients attending the First Affiliated Hospital of Chongqing Medical University. Personal interviews were carried out and a questionnaire was used to collect medical records. Diagnosis of headache was according to the International classification of headache disorders, 2nd edition (ICHD-II). Headache patients accounted for 19.5% of the general neurology clinic outpatients. A total of 843 (50.1%) patients were defined as having primary headache, 454 (27%) secondary headache, and 386 (23%) headache not otherwise specified (headache NOS). For primary headache, 401 (23.8%) had migraine, 399 (23.7%) tension-type headache (TTH), 8 (0.5%) cluster headache and 35 (2.1%) other headache types. Overall, migraine patients suffered (1) more severe headache intensity, (2) longer than 6 years of headache history and (3) more common analgesic medications use than TTH ones (p < 0.001).TTH patients had more frequent episodes of headaches than migraine patients, and typically headache frequency exceeded 15 days/month (p < 0.001); 22.8% of primary headache patients were defined as chronic daily headache. Almost 20% of outpatient visits to the general neurology department were of headache patients, predominantly primary headache of migraine and TTH. In outpatient headaches, more attention should be given to headache intensity and duration of headache history for migraine patients, while more attention to headache frequency should be given for the TTH ones.
doi:10.1007/s10194-011-0360-2
PMCID: PMC3173628  PMID: 21744226
Outpatient; Headache; Cross-sectional study; Clinical feature; Migraine
18.  The evolution of headache from childhood to adulthood: a review of the literature 
Headache is one of the most common disorders in childhood, with an estimated 75% of children reporting significant headache by the age of 15 years. Pediatric migraine is the most frequent recurrent headache disorder, occurring in up to 28% of older teenagers. Headaches rank third among the illness-related causes of school absenteeism and result in substantial psychosocial impairment among pediatric patients.
The aim of this study was to clarify the evolution of the clinical features of primary headache in the transition from childhood to adulthood through a review of relevant data available in the PubMed and Google Scholar databases for the period 1988 to July 2013.
The search strategy identified 15 published articles which were considered eligible for inclusion in the analysis (i.e. relevant to the investigation of pediatric headache outcome). All were carried out after the publication of the first version of the International Classification of Headache Disorders (ICHD-I).
The availability of data on the evolution of primary headaches over a period of time is important from both a clinical and a public health perspective. The identification of prognostic factors of the evolution of headache (remission or evolution into another headache form) over time should be an objective of future headache research for the development of prevention strategies. Given that headache is a major factor contributing to school absenteeism and poorer quality of life not only in childhood but also in adolescence, understanding the natural history and the management of the different headache forms is vital for our future.
doi:10.1186/1129-2377-15-15
PMCID: PMC3995299  PMID: 24641507
Migraine; Tension-type headache; Cluster headache; Childhood; Adolescence; Evolution
19.  Anxiety, depression and behavioral problems among adolescents with recurrent headache: the Young-HUNT study 
Background
It is well documented that both anxiety and depression are associated with headache, but there is limited knowledge regarding the relation between recurrent primary headaches and symptoms of anxiety and depression as well as behavioral problems among adolescents. Assessment of co-morbid disorders is important in order to improve the management of adolescents with recurrent headaches. Thus the main purpose of the present study was to assess the relationship of recurrent headache with anxiety and depressive symptoms and behavioral problems in a large population based cross-sectional survey among adolescents in Norway.
Methods
A cross-sectional, population-based study was conducted in Norway from 1995 to 1997 (Young-HUNT1). In Young-HUNT1, 4872 adolescents aged 12 to 17 years were interviewed about their headache complaints and completed a comprehensive questionnaire that included assessment of symptoms of anxiety and depression and behavioral problems, i.e. conduct and attention difficulties.
Results
In adjusted multivariate analyses among adolescents aged 12–14 years, recurrent headache was associated with symptoms of anxiety and depression (OR: 2.05, 95% CI: 1.61-2.61, p < 0.001), but not with behavioral problems. A significant association with anxiety and depressive symptoms was evident for all headache categories; i.e. migraine, tension-type headache and non-classifiable headache. Among adolescents aged 15–17 years there was a significant association between recurrent headache and symptoms of anxiety and depression (OR: 1.64, 95% CI: 1.39-1.93, p < 0,001) and attention difficulties (OR: 1.25, 95% CI: 1.09-1.44, p =0.001). For migraine there was a significant association with both anxiety and depressive symptoms and attention difficulties, while tension-type headache was significantly associated only with symptoms of anxiety and depression. Non-classifiable headache was associated with attention difficulties and conduct difficulties, but not with anxiety and depressive symptoms. Headache frequency was significantly associated with increasing symptoms scores for anxiety and depressive symptoms as well as attention difficulties, evident for both age groups.
Conclusions
The results from the present study indicate that both anxiety and depressive symptoms and behavioral problems are associated with recurrent headache, and should accordingly be considered a part of the clinical assessment of children and adolescents with headache. Identification of these associated factors and addressing them in interventions may improve headache management.
doi:10.1186/1129-2377-15-38
PMCID: PMC4062897  PMID: 24925252
Recurrent headache; Migraine; Tension-type headache; Anxiety; Depression; Behavioral problems; Conduct difficulties; Attention difficulties; Adolescents
20.  Psychosocial Correlates and Impact of Chronic Tension-type Headaches 
Headache  2000;40(1):3-16.
Objectives
To examine the psychosocial correlates of chronic tension-type headache and the impact of chronic tension-type headache on work, social functioning, and well-being.
Methods
Two hundred forty-five patients (mean age=37.0 years) with chronic tension-type headache as a primary presenting problem completed an assessment protocol as part of a larger treatment outcome study. The assessment included a structured diagnostic interview, the Medical Outcomes Study Short Form, Disability Days/Impairment Ratings, Recurrent Illness Impact Profile, Beck Depression Inventory, State-Trait Anxiety Inventory—Trait Form, Primary Care Evaluation for Mental Disorders, and the Hassles Scale Short Form. Comparisons were made with matched controls (N=89) and, secondarily, with Medical Outcomes Study data for the general population, arthritis, and back problem samples.
Results
About two thirds of those with chronic tension-type headache recorded daily or near daily (≥25 days per month) headaches with few (12%) recording headaches on less than 20 days per month. Despite the fact that patients reported that their headaches had occurred at approximately the present frequency for an average of 7 years, chronic tension-type headache sufferers were largely lapsed consulters (54% of subjects) or current consulters in primary care (81% of consulters).
Significant impairments in functioning and well-being were evident in chronic tension-type headache and were captured by each of the assessment devices. Although headache-related disability days were reported by 74% of patients (mean=7 days in previous 6 months), work or social functioning was severely impaired in only a small minority of patients. Sleep, energy level, and emotional well-being were frequently impaired with about one third of patients recording impairments in these areas on 10 or more days per month. Most patients with chronic tension-type headache continued to carry out daily life responsibilities when in pain, although role performance at times was clearly impaired by headaches and well-being was frequently impaired.
Chronic tension-type headache sufferers were 3 to 15 times more likely than matched controls to receive a diagnosis of an anxiety or mood disorder with almost half of the patients exhibiting clinically significant levels of anxiety or depression. Affective distress and severity of headaches (Headache Index) were important determinants of headache impact/impairment.
Conclusions
Chronic tension-type headache has a greater impact on individuals' lives than has generally been realized, with affective distress being an important correlate of impairment. If treatment is to remedy impairment in functioning, affective distress, as well as pain, thus needs to be addressed.
PMCID: PMC2128255  PMID: 10759896
chronic tension-type headache; disability; impairment; affective distress
21.  Use of the Emergency Department for Severe Headache. A population-based study 
Headache  2008;49(1):21-30.
Background
Although headache is a common emergency department (ED) chief complaint, the role of the ED in the management of primary headache disorders has rarely been assessed from a population perspective. We determined frequency of ED use and risk factors for use among patients suffering severe headache.
Methods
As part of the American Migraine Prevalence and Prevention study, a validated self-administered questionnaire was mailed to 24,000 severe headache sufferers, who were randomly drawn from a larger sample constructed to be socio-demographically representative of the US population. Participants were asked a series of questions on headache management, healthcare system use, socio-demographic features, and number of ED visits for management of headache in the previous 12 months. In keeping with the work of others, “frequent” ED use was defined as a particpants report of four or more visits to the ED for treatment of a headache in the previous 12 months. Headaches were categorized into specific diagnoses using a validated methodology.
Results
Of 24,000 surveys, 18,514 were returned, and 13,451 (56%) provided complete data on ED use. Socio-demographic characteristics did not differ substantially between responders and non-responders. Among the 13,451 responders, over the course of the previous year, 12,592 (94%) did not visit the ED at all, 415 (3%) visited the ED once, and 444 (3%) visited the ED more than once. Patients with severe episodic tension-type headache were less likely to use the ED than patients with severe episodic migraine (OR 0.4 [95%CI 0.3, 0.6]). Frequent ED use was reported by 1% of the total sample or 19% (95%CI: 17, 22%) of subjects who used the ED in the previous year, though frequent users accounted for 51% (95%CI: 49, 53) of all ED visits. Predictors of ED use included markers of disease severity, elevated depression scores, low socio-economic status, and a predilection for ED use for conditions other than headache.
Conclusions
Most individuals suffering severe headaches do not use the ED over the course of a single year. The majority of ED visits for severe headache are accounted for by a small subset of all ED users. Increasing disease severity and depression are the most readily addressable factors associated with ED use.
doi:10.1111/j.1526-4610.2008.01282.x
PMCID: PMC2615458  PMID: 19040677
22.  Predictors of Headache Before, During, and After Pregnancy: A Cohort Study 
Headache  2012;52(3):348-362.
Objective
The present study endeavored to identify predictors of headache during pregnancy, shortly after delivery, and at 8-week follow-up.
Background
Many women suffer from headaches during pregnancy and the postpartum period. However, little is known about factors that predict headache surrounding childbirth.
Methods
Secondary analysis of longitudinal cohort study of 2434 parturients hospitalized for cesarean or vaginal delivery in four university hospitals in the United States and Europe. Data were gathered from interviews and review of medical records shortly after delivery; 972 of the women were contacted 8 weeks later to assess persistent headache. The primary outcome measures were experiencing headache during pregnancy, headache within 72 hours after delivery, and headache at 8 weeks after delivery.
Results
Of the parturients, 10% experienced headache during pregnancy, 3.7% within 72 hours after delivery, and 3.6% at 8 weeks post delivery. Compared to those without a history of headache, a history of headache prior to pregnancy was the strongest predictor of headache during pregnancy (9.8% versus 23.5%; RR 2.4; 95% CI: 1.4 to 4.0). Experiencing headache during pregnancy (adjusted HR 3.8; 95% CI: 2.4 to 6.2) and receiving needle-based regional anesthesia for pain treatment (adjusted HR 2.2; 95% CI: 1.1 to 4.5) were independently associated with headache within 72 hours after delivery with event rates of 11.1% and 10.5%, respectively. Compared to those without such a history, headache before pregnancy was significantly associated with experiencing headache 8 weeks after delivery (4.0% versus 23.8%; RR = 6.0; 95% CI: 2.0 to 8.0), but headache during pregnancy or shortly after delivery was not. Several other psychosocial predictors (e.g., somatization, smoking before pregnancy) were statistically associated with at least one headache outcome.
Conclusions
A history of headache prior to pregnancy is a strong predictor of headache during and after pregnancy, the latter independent of but compounded by spinal injection. Physicians should attend to prior headache history when making decisions about pain management during and after childbirth. As the lack of formal ICHD-II headache diagnoses is a limitation of this study, future longitudinal studies should replicate the present design while including headache subtyping consistent with ICHD-II nosology.
doi:10.1111/j.1526-4610.2011.02066.x
PMCID: PMC3299832  PMID: 22268840
Pregnancy; migraine; spinal anesthesia
23.  GPs’ experiences with brief intervention for medication-overuse headache: a qualitative study in general practice 
The British Journal of General Practice  2014;64(626):e525-e531.
Background
Medication-overuse headache (MOH) is common in the general population, and most patients are managed in primary health care. Brief Intervention (BI) has been used as a motivational technique for patients with drug and alcohol overuse, and may a have role in the treatment of MOH.
Aim
To explore GPs’ experiences using BI in the management of patients with MOH.
Design and setting
Qualitative study in Norwegian general practice.
Method
Data were collected through four focus group interviews with 22 GPs who participated in an intervention study on BI for MOH. Systematic text condensation was used to analyse transcripts from the focus group interviews.
Results
The GPs experienced challenges when trying to convince patients that the medication they used to treat and prevent headache could cause headache, but labelling MOH as a diagnosis opened up a space for change. GPs were able to use BI within the scope of a regular consultation, and they thought that the structured approach had a potential to change patients’ views about their condition and medication use. Being diagnosed with medication overuse could bring about feelings of guilt in patients, and GPs emphasised that a good alliance with the patient was necessary for successful change using BI to manage MOH.
Conclusion
GPs experience BI as a feasible strategy to treat MOH, and the technique relies on a good alliance between the doctor and patient. When using BI, GPs must be prepared to counter patients’ misconceptions about medication used for headache.
doi:10.3399/bjgp14X681313
PMCID: PMC4141608  PMID: 25179065
headache disorder, secondary; analgesic/adverse effects; primary care, qualitative study
24.  Identified risk factors and adolescents’ beliefs about triggers for headaches: results from a cross-sectional study 
The Journal of Headache and Pain  2012;13(8):639-643.
Although there are few studies on adolescents’ beliefs about triggers of headache, none of these compared the associations between perceived and observed triggers. This study aimed at comparing the prevalence of self-perceived and observed risk factors for headache among adolescents. Adolescents from the 10th and 11th grades of high schools answered questionnaires on their headaches and on potential risk factors regarding lifestyle, stress and muscle pain. Individuals reporting to have experienced headache in the preceding 6 months were asked to report what they believed to cause their headache (self-perceived triggers). 1,047 (83 %) of 1,260 adolescents reported headaches. Stress, lack of sleep and too much school work were the most frequently reported self-perceived triggers of headache; in contrast the statistical analysis identified alcohol and coffee consumption, smoking, neck pain, stress and physical inactivity as risk factors for headache. Among individuals with headache, 48 % believed that stress might trigger their headaches, while increased stress scores were only observed in 23 %. In contrast, while 7, 4, 0.3 and 0 % of individuals reporting headache considered consumption of too much alcohol, neck pain, physical inactivity and consumption of coffee might trigger their headache, 56, 51, 36 and 14 %, respectively, were exposed to these risk factors. The prevalence of self-perceived triggers of headache does not correspond to the prevalence of identified risk factors for headaches. While the role of stress was overestimated, the high prevalence of the other confirmed risk factors in adolescents with headache suggests potential for prevention by increasing awareness for these risk factors and appropriate interventions.
doi:10.1007/s10194-012-0489-7
PMCID: PMC3484252  PMID: 23064890
Headache; Adolescents; Trigger factors; Risk factors; Lifestyle factors
25.  Diurnal variation of tension-type headache intensity and exacerbation: An investigation using computerized ecological momentary assessment 
Backgrounds
Tension-type headache is a common psychosomatic disease. However, diurnal variation of headache is yet to be clarified, perhaps due to the lack of an appropriate method to investigate it. Like other painful diseases, it would be helpful to know if there is diurnal variation in tension-type headaches, both for managing headaches and understanding their pathophysiology. The aim of this study was to determine if there is diurnal variation in the intensity and exacerbation of tension-type headache.
Methods
Patients (N = 31) with tension-type headache recorded for one week their momentary headache intensity several times a day and their acute headache exacerbations using a watch-type computer as an electronic diary (computerized ecological momentary assessment). Multilevel modeling was used to test the effects of time of day on momentary headache intensity and on the occurrence of acute exacerbations.
Results
A significant diurnal variation in momentary headache intensity was shown (P = 0.0005), with the weakest headaches in the morning and a peak in the late afternoon. A between-individual difference in the diurnal pattern was suggested. On-demand medication use was associated with a different diurnal pattern (P = 0.025), suggesting that headache intensity decreases earlier in the evening in subjects who used on-demand medication, while headache subtype, prophylactic medication use, and sex were not associated with the difference. The occurrence of acute headache exacerbation also showed a significant diurnal variation, with a peak after noon (P = 0.0015).
Conclusions
Tension-type headache was shown to have a significant diurnal variation. The relation to pathophysiology and psychosocial aspects needs to be further explored.
doi:10.1186/1751-0759-6-18
PMCID: PMC3479012  PMID: 22943264
Tension-type headache; Ecological momentary assessment; Electronic diary; Diurnal variation

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