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1.  Neuroimaging for the Evaluation of Chronic Headaches 
Executive Summary
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%.
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
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
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
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.
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
2.  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.
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.
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).
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).
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’.
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.
PMCID: PMC2872510  PMID: 20148982
3.  Diagnosing headache in primary care: a qualitative study of GPs’ approaches 
The British Journal of General Practice  2014;64(626):e532-e537.
Headache is one of the most common symptoms in primary care. Most headaches are due to primary headaches and many headache sufferers do not receive a specific diagnosis. There is still a gap in research on how GPs diagnose and treat patients with headache.
To identify GPs’ diagnostic approaches in patients presenting with headache.
Design and setting
Qualitative study with 15 GPs in urban and rural practices.
Interviews (20–40 minutes) were conducted using a semi-structured interview guideline. GPs described their individual diagnostic strategies by means of patients presenting with headache that they had prospectively identified during the previous 4 weeks. Interviews were taped and transcribed verbatim. Qualitative analysis was conducted by two independent raters.
Regarding GPs’ general diagnostic approach to patients with headache, four broad themes emerged during the interviews: ‘knowing the patient and their background’, ‘first impression during consultation’, ‘intuition and personal experience’ and ‘application of the test of time’. Four further themes were identified regarding the management of diagnostic uncertainty: ‘identification of red flags’, ‘use of the familiarity heuristic’, ‘therapeutic trial’, and ‘triggers for patient referral’.
GPs apply different strategies in the early diagnostic phase when managing patients with headache. Identification of potential adverse outcomes accompanied by other strategies for handling uncertainty seem to be more important than an exact diagnosis. Established guidelines do not play a role in the diagnostic workup.
PMCID: PMC4141609  PMID: 25179066
diagnosis; general practice; headache; qualitative research
4.  How do patients referred to neurologists for headache differ from those managed in primary care? 
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.
To describe and compare headache patients managed in primary care with those referred to neurologists.
Design of study
Prospective study.
Eighteen general practices in south-east England.
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.
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).
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
5.  Holding on to the indispensable medication –A grounded theory on medication use from the perspective of persons with medication overuse headache 
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.
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.
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.
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.
PMCID: PMC3671143  PMID: 23697986
Headache; Medication use; Medication overuse headache; Qualitative study; Grounded theory; Patient perspective
6.  Analysis of Trigger Factors in Episodic Migraineurs Using a Smartphone Headache Diary Applications 
PLoS ONE  2016;11(2):e0149577.
Various stimuli can trigger migraines in susceptible individuals. We examined migraine trigger factors by using a smartphone headache diary application.
Episodic migraineurs who agreed to participate in our study downloaded smartphone headache diary application, which was designed to capture the details regarding headache trigger factors and characteristics for 3 months. The participants were asked to access the smartphone headache diary application daily and to confirm the presence of a headache and input the types of trigger factors.
Sixty-two participants kept diary entries until the end of the study. The diary data for 4,579 days were analyzed. In this data set, 1,099 headache days (336 migraines, 763 non-migraine headaches) were recorded; of these, 772 headache events had with trigger factors, and 327 events did not have trigger factors. The common trigger factors that were present on headache days included stress, fatigue, sleep deprivation, hormonal changes, and weather changes. The likelihood of a headache trigger was 57.7% for stress, 55.1% for sleep deprivation, 48.5% for fatigue, and 46.5% for any trigger. The headaches with trigger factors were associated with greater pain intensity (p<0.001), headache-related disability (p<0.001), abortive medication use (p = 0.02), and the proportion of migraine (p < 0.001), relative to those without trigger factors. Traveling (odd ratios [OR]: 6.4), hormonal changes (OR: 3.5), noise (OR: 2.8), alcohol (OR: 2.5), overeating (OR: 2.4), and stress (OR:1.8) were significantly associated with migraines compared to non-migraine headaches. The headaches that were associated with hormonal changes or noise were more often migraines, regardless of the preventive medication. The headaches due to stress, overeating, alcohol, and traveling were more often migraines without preventive medication, but it was not evident with preventive medication.
Smartphone headache diary application is an effective tool to assess migraine trigger factors. The headaches with trigger factors had greater severity or migraine features. The type of triggers and the presence of preventive medication influenced the headache characteristics; hence, an investigation of trigger factors would be helpful in understanding migraine occurrences.
PMCID: PMC4764678  PMID: 26901341
7.  Factors associated with disability and impact of tension-type headache: findings of the Korean headache survey 
Although mostly mild in symptom severity, tension-type headache (TTH) can cause disability. However, factors associated with disability of TTH have been rarely reported. This study sought to assess the factors associated with TTH-related disability and impact.
We analyzed data form the Korean Headache Survey, a nation-wide survey regarding headache in all Korean adults aged 19–69 years. TTH-related disability was measured by surveying actual disability and Headache Impact Test-6 (HIT-6). Actual disability was defined as having one or more days of activity restriction or missed activity due to headache in the last 3 months. The HIT-6 score ≥ 50 was regarded as significant headache impact associated with TTH. We assessed factors associated with TTH-related disability and impact using logistic regression analyses adjusting for sociodemographic variables and headache characteristics.
Among 1507 individuals, the 1-year prevalence rate of TTH was 30.7% (n = 463), of which 4.8% reported actual disability and 21.3% had headache impact, respectively. In univariate analyses, sociodemographic variables were not associated with actual disability and headache impact, respectively. There were relationships between several headache characteristics and actual disability/headache impact. After adjustment of potential confounders, moderate headache intensity was correlated with actual disability (odds ratio [OR]: 4.41, 95% confidence interval [CI]: 1.46–13.27), while an inverse association was observed between no aggravation by routine activity and actual disability (OR: 0.32, 95% CI: 0.12–0.88). Multivariate analyses showed that ORs for headache impact were increased in those with higher headache frequency (OR: 2.54, 95% CI: 1.47–4.39 for 1–14 days/month; OR: 23.83, 95% CI: 5.46–104.03 for ≥ 15 days/month), longer headache time duration (OR: 1.84, 95% CI: 1.04–3.25 for ≥ 1 and < 4 hours; OR: 2.44 95% CI: 1.17–5.11 for ≥ 4 hours), and phonophobia (OR: 1.73, 95% CI: 1.02–2.95), whereas decreased in those with no aggravation by routine activity (OR: 0.32, 95% CI: 0.12–0.88).
Several headache characteristics were associated with actual disability and headache impact among TTH individuals. Our findings suggest that there needs to be consideration careful of troublesome headache characteristics for TTH individuals suffering from disability and impact.
PMCID: PMC4434242  PMID: 25943683
Disability; Epidemiology; Headache; Tension-type headache
8.  Natural History of Headache after Traumatic Brain Injury 
Journal of Neurotrauma  2011;28(9):1719-1725.
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.
PMCID: PMC3172878  PMID: 21732765
headache; natural history; traumatic brain injury
9.  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.
PMCID: PMC3452197  PMID: 18751938
Chiari malformation; Cough headache; Exertional headache; Sexual headache
10.  Psychological therapies (remotely delivered) for the management of chronic and recurrent pain in children and adolescents 
Chronic pain is common during childhood and adolescence and is associated with negative outcomes such as increased severity of pain, reduced function (e.g. missing school), and low mood (e.g. high levels of depression and anxiety). Psychological therapies, traditionally delivered face-to-face with a therapist, are efficacious at reducing pain intensity and disability. However, new and innovative technology is being used to deliver these psychological therapies remotely, meaning barriers to access to treatment such as distance and cost can be removed or reduced. Therapies delivered with technological devices, such as the Internet, computer-based programmes, smartphone applications, or via the telephone, can be used to deliver treatment to children and adolescents with chronic pain.
To determine the efficacy of psychological therapies delivered remotely compared to waiting-list, treatment-as-usual, or active control treatments, for the management of chronic pain in children and adolescents.
Search methods
We searched four databases (CENTRAL, MEDLINE, EMBASE, and PsycINFO) from inception to June 2014 for randomised controlled trials of remotely delivered psychological interventions for children and adolescents (0 to 18 years of age) with chronic pain. We searched for chronic pain conditions including, but not exclusive to, headache, recurrent abdominal pain, musculoskeletal pain, and neuropathic pain. We also searched online trial registries for potential trials. A citation and reference search for all included studies was conducted.
Selection criteria
All included studies were randomised controlled trials that investigated the efficacy of a psychological therapy delivered remotely via the Internet, smartphone device, computer-based programme, audiotapes, or over the phone in comparison to an active, treatment-as-usual, or waiting-list control. We considered blended treatments, which used a combination of technology and face-to-face interaction. We excluded interventions solely delivered face-to-face between therapist and patient from this review. Children and adolescents (0 to 18 years of age) with a primary chronic pain condition were the target of the interventions. Each comparator arm, at each extraction point had to include 10 or more participants.
Data collection and analysis
For the analyses, we combined all psychological therapies. We split pain conditions into headache and mixed (non-headache) pain and analysed them separately. Pain, disability, depression, anxiety, and adverse events were extracted as primary outcomes. We also extracted satisfaction with treatment as a secondary outcome. We considered outcomes at two time points: first immediately following the end of treatment (known as ’post-treatment’), and second, any follow-up time point post-treatment between 3 and 12 months (known as ’follow-up’). We assessed all included studies for risk of bias.
Main results
Eight studies (N = 371) that delivered treatment remotely were identified from our search; five studies investigated children with headache conditions, one study was with children with juvenile idiopathic arthritis, and two studies included mixed samples of children with headache and mixed (i.e. recurrent abdominal pain, musculoskeletal pain) chronic pain conditions. The average age of children receiving treatment was 12.57 years.
For headache pain conditions, we found one beneficial effect of remotely delivered psychological therapy. Headache severity was reduced post-treatment (risk ratio (RR) = 2.65, 95% confidence interval (CI) 1.56 to 4.50, z = 3.62,p < 0.01, number needed to treat to benefit (NNTB) = 2.88). For mixed pain conditions, we found only one beneficial effect: psychological therapies reduced pain intensity post-treatment (standardised mean difference (SMD) = −0.61, 95% CI −0.96 to −0.25, z = 3.38, p < 0.01). No effects were found for reducing pain at follow-up in either analysis. For headache and mixed conditions, there were no beneficial effects of psychological therapies delivered remotely for disability post-treatment and a lack of data at follow-up meant no analyses could be run. Only one analysis could be conducted for depression outcomes. We found no beneficial effect of psychological therapies in reducing depression post-treatment for headache conditions. Only one study presented data in children with mixed pain conditions for depressive outcomes and no data were available for either condition at follow-up. Only one study presented anxiety data post-treatment and no studies reported follow-up data, therefore no analyses could be run. Further, there were no data available for adverse events, meaning that we are unsure whether psychological therapies are harmful to children who receive them. Satisfaction with treatment is described qualitatively.
‘Risk of bias’ assessments were low or unclear. We judged selection, detection, and reporting biases to be mostly low risk for included studies. However, judgements made on performance and attrition biases were mostly unclear.
Authors’ conclusions
Psychological therapies delivered remotely, primarily via the Internet, confer benefit in reducing the intensity or severity of pain after treatment across conditions. There is considerable uncertainty around these estimates of effect and only eight studies with 371 children contribute to the conclusions. Future studies are likely to change the conclusions reported here. All included trials used either behavioural or cognitive behavioural therapies for children with chronic pain, therefore we cannot generalise our findings to other therapies. However, satisfaction with these treatments was generally positive. Larger trials are needed to increase our confidence in all conclusions regarding the efficacy of remotely delivered psychological therapies. Implications for practice and research are discussed.
PMCID: PMC4833498  PMID: 25803793
11.  Testing the Feasibility and Psychometric Properties of a Mobile Diary (myWHI) in Adolescents and Young Adults With Headaches 
JMIR mHealth and uHealth  2015;3(2):e39.
Headaches are prevalent among teens and young adults. Self-monitoring is essential for managing headaches and can be accomplished with the help of electronic headache diaries. An increasing number of electronic headache diaries exist, yet the absence of quality standards compromises their use for research and clinical purposes.
Our goal was to develop and test the usability, feasibility, and psychometric properties of an electronic diary iPhone application for self-monitoring by adolescents and young adults with headaches.
We used an iterative participatory design to develop and test our electronic headache diary. Participants aged 14-28 years old with recurrent headaches were recruited internationally. Screening and consent were conducted online. Following completion of an online pre-questionnaire, participants downloaded the diary to use in their natural environment for 14 days. An online post-questionnaire was completed following testing. The diary’s usability and feasibility were tested first and determined to be complete when improvements to the diary did not result in a statistically significant impact on indicators of feasibility and adherence. Interviews were conducted with participants of usability and feasibility testing. The psychometric properties of the diary were then tested, and a case study analysis of one participant was completed.
Three cycles to test the usability and feasibility were conducted. Each cycle included 11-19 unique participants ranging in age from 16 to 28 years. Following the testing period for each cycle, 15% to 25% of participants took part in the post-cycle interview. Participants perceived the final version of the diary as useful, easy to learn, and efficient to use. Psychometric properties were then tested with a sample of 65 participants (6 aged 14-17 years old; 59 aged 18-28 years old). All items in the diary had substantial between- and within-subjects variability (percent of variance for the two participant groups ranged from 20.64 to 75.60 and 23.74 to 79.21, respectively). Moreover, the Migraine Disability Assessment (MIDAS) included in the diary had adequate between-subjects reliability (R1F=0.66, RKF=0.98), but low within-subjects reliability (RC=0.51). Critical elements of the diary demonstrated adequate convergent and concurrent validity, particularly in the older age group (18-28 years). The validity of some critical elements of the diary could not be explored in the younger age group due to the small subgroup size. The case study provides an example of the potential utility of the diary.
Our electronic headache diary was shown to be a usable and feasible self-monitoring tool when used by adolescents and young adults with headaches for 14 days. This study provides preliminary support of its psychometric properties. Our diary has the potential for helping users to better understand their headaches and, consequently, to change behaviors to improve self-management of their headaches. Its effectiveness as a component of an intervention will be the focus of future research.
PMCID: PMC4441754  PMID: 25956377
headache; diary; smartphone; feasibility; psychometric properties
12.  Predictors of Headache Before, During, and After Pregnancy: A Cohort Study 
Headache  2012;52(3):348-362.
The present study endeavored to identify predictors of headache during pregnancy, shortly after delivery, and at 8-week follow-up.
Many women suffer from headaches during pregnancy and the postpartum period. However, little is known about factors that predict headache surrounding childbirth.
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.
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.
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.
PMCID: PMC3299832  PMID: 22268840
Pregnancy; migraine; spinal anesthesia
13.  The burden of headache disorders in Nepal: estimates from a population-based survey 
Headache disorders, particularly migraine and tension-type headache (TTH), are among the most prevalent global public-health problems. Medication-overuse headache (MOH) is a common sequela of mismanagement of these. Migraine and MOH are highly disabling. Formulation of responsive health policy requires reliable, locally-derived, population-based data describing both individual and societal impact of headache disorders. South-East Asia is the only one of WHO’s six world regions in which no such national data have yet been gathered.
In a nationwide population-based cross-sectional study, a representative sample of Nepalese-speaking adults (18–65 years) were randomly selected by stratified multistage cluster sampling. Trained interviewers made unannounced door-to-door visits and enquired into headache and its attributable burden using a culturally-adapted and validated Nepalese translation of the Headache-Attributed Restriction, Disability, Social Handicap and Impaired Participation (HARDSHIP) questionnaire.
Among 2100 participants, 1794 (85.4 %) reported headache during the preceding year (male: 689 [38.4 %], female 1105 [61.6 %]; mean age 36.1 ± 12.6 years). Mean headache frequency was 3.8 ± 6.2 days/month, mean headache intensity 2.1 ± 0.7 on a 0–3 scale, and mean attack duration 41.9 ± 108.5 h. All aspects of symptom burden (frequency, intensity and duration) were greater among females (p < 0.001). Participants with headache had poorer quality of life (QoL) than those without (p < 0.001); QoL was worst among those with probable MOH (pMOH).
Mean proportions of total available time spent in the ictal state were 5.4 % among participants with migraine, 3.9 % among those with TTH and 44.7 % among those with pMOH, with headache-related disabilities of 2.4, 0.15 and 9.7 % respectively. At population level, these disorders were responsible for reduced functional capacities of 0.81, 0.06 and 0.20 %. Total lost productive time due to headache was 6.8 % for the 85 % of the population with headache. Males lost more paid worktime than females (p < 0.001); the reverse was so for household worktime (p < 0.001).
Headache disorders, very common in Nepal, are also highly burdensome at both individual and population levels. There is a substantial penalty in lost production. The remedy lies in better health care for headache; structured headache-care services are urgently needed in the country, and likely to be cost-saving.
PMCID: PMC4726638  PMID: 26810487
Migraine; Tension-type headache; Medication-overuse headache; Public health; Population-based study; Burden of disease; Disability; Nepal; South-East Asia region; Global campaign against headache
14.  Relation between headache in childhood and physical and psychiatric symptoms in adulthood: national birth cohort study 
BMJ : British Medical Journal  2001;322(7295):1145.
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.
Population based birth cohort study.
General population.
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.
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.
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
15.  The relationship of anxiety, depression and behavioral problems with recurrent headache in late adolescence – a Young-HUNT follow-up study 
The comorbidity of headache and psychiatric symptoms is a well-recognized clinical phenomenon, but there are only limited data regarding the temporal relationship between headache and symptoms of anxiety and depression as well as behavioral problems in adolescents. This study investigates the relationship of anxiety and depressive symptoms and behavioral problems at baseline with recurrent headache at follow-up four years later.
Within the Nord-Trøndelag Health Study (HUNT), including repeated population-based studies conducted in Norway, 2399 adolescents in junior high schools aged 12–16 years (77% of the invited) participated in Young-HUNT1 (1995–1997) and again at follow-up four years later, in Young-HUNT2 (2000–2001). The same comprehensive questionnaire that included assessment of symptoms of anxiety and depression and behavioral problems, i.e. conduct and attention difficulties was completed in both studies. In addition 1665 of the participants were interviewed about their headache complaints in Young-HUNT2.
In adjusted multivariate analyses we found that higher scores of anxiety and depressive symptoms at baseline were associated with recurrent headache at follow-up four years later (OR: 1.6, 95% CI: 1.2-2.1, p = 0.001), evident for migraine (OR: 1.8, 95% CI: 1.2-2.7, p = 0.008) and non-classifiable headache (OR: 1.7, 95% CI: 1.0-2.8, p = 0.034), but not statistically significant for tension-type headache (OR: 1.4, 95% CI: 1.0-1.9, p = 0.053). Higher scores of anxiety and depressive symptoms at baseline were significantly associated with more frequent headache at follow-up (monthly vs. no recurrent headache OR: 1.8, 95% CI: 1.3-2.5, p = 0.001, weekly or daily vs. no recurrent headache OR: 1.9, 95% CI: 1.2-2.9, p = 0.005). Among adolescents without recurrent headache at baseline, higher scores for symptoms of anxiety and depression were associated with new onset migraine four years later (OR: 2.6, 95% CI: 1.1-4.8, p = 0.036). Higher scores of attention problems at baseline were associated with non-classifiable headache at follow-up (OR: 2.0, 95% CI: 1.3-3.4, p = 0.017).
Results from the present study showed that symptoms of anxiety and depression in early adolescence were associated with recurrent headache four years later. Recognizing anxiety and depressive symptoms should be considered part of the clinical assessment in young headache patients, as early identification of these associated factors may lead to improved headache management.
PMCID: PMC4405520  PMID: 25595046
Recurrent headache; Migraine; Tension-type headache; Anxiety; Depression; Behavioral problems; Conduct difficulties; Attention difficulties; Adolescents
16.  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.
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.
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.
The adolescent part of the Nord-Trøndelag Health Study 2006–2008 (HUNT), conducted in Norway.
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.
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.
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.
PMCID: PMC3731723  PMID: 23901028
Public Health
17.  Awareness of headache and of national headache society activities among primary care physicians – a qualitative study 
BMC Research Notes  2013;6:118.
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.
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.
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.
PMCID: PMC3637130  PMID: 23531195
Headache; Primary care; MRI; Awareness; National society; Migraine
18.  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.
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.
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
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
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
PMCID: PMC3484131  PMID: 23118618
19.  Magnitude, impact, and stability of primary headache subtypes: 30 year prospective Swiss cohort study 
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.
Prospective cohort study.
Canton of Zurich, Switzerland.
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.
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.
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
20.  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
21.  Sleep apnoea headache in obstructive sleep apnoea syndrome patients presenting with morning headache: comparison of the ICHD-2 and ICHD-3 beta criteria 
Morning headache is associated with obstructive sleep apnoea syndrome (OSAS); however, OSAS patients present with various characteristics of morning headache, and they often do not fulfil the International Classification of Headache Disorders (ICHD)-2 criteria for “sleep apnoea headache”. The aims of this study were to assess the new ICHD-3 beta criteria for sleep apnoea headache in OSAS patients and to evaluate the differences with the ICHD-2.
We conducted a cross-sectional survey regarding morning and sleep apnoea headaches that included 235 OSAS outpatients receiving continuous positive airway pressure (CPAP) treatment. The presence of morning headache was evaluated by reviewing the medical records before administration of CPAP treatment.
Of all of the OSAS patients, 48 (20.4 %) reported morning headaches. Of the 48 patients with morning headaches, 29 (60.4 %) and 39 (81.3 %) fulfilled the ICHD-2 and ICHD-3 beta criteria for sleep apnoea headache, respectively. The increased frequency of individuals who qualified for diagnosis was likely attributable to the extension of headache duration from 30 min to 4 h. The severity of OSAS was not associated with the presence of sleep apnoea headache.
The utilisation of ICHD-3 beta criteria is clinically useful for diagnosing sleep apnoea headache in patients with OSAS. Applying the ICHD-3 beta criteria was of clinical significance when considering the marked response of these headaches to CPAP therapy. The cause of sleep apnoea headache remains to be elucidated.
PMCID: PMC4478186  PMID: 26103955
Sleep apnoea headache; Morning headache; Obstructive sleep apnoea syndrome
22.  Characteristics of Headache at Altitude among Trekkers; A comparison between Acute Mountain Sickness and Non-Acute Mountain Sickness Headache 
Asian Journal of Sports Medicine  2012;3(2):126-130.
Headache at altitudes has had an incidence of 25-62% through many related studies. Many reasons are identified concerning headache at altitudes such as acute mountain sickness (AMS), sinus headache, migraine, tension type headache, and frontal tension headache. This study tried to compare different types of headache among trekkers on Mount Damavand, a 5671m mountain, Iran, to find their incidence and related symptoms and signs.
Through a cross-sectional study, we evaluated headache incidence and its correlation to AMS among people who climbed Mount Damavand. Lake Louise Score, a self-report questionnaire, was applied to make AMS diagnosis through three separate stages of trekking programs. Chi-square test was employed as the main mean of analysis.
Totally, 459 between 13-71 year olds participated in the study among which females were 148 (32.1%) and males 311 (67.8%). Headache was found in 398 (86.7%) among whom 279 (70%) were proved as AMS. Investigating the types of headache in the cases of AMS showed 64.5% to be of steady, 31% throbbing and 4.5% stabbing characters which had significant differences with a P value = 0.003. The majority of headaches were stated as frontal (38.9%) and the least prevalence belonged to the parietal area (4.4%), while global headache was reported in 27%.
This study specifies the exact location of headaches at altitude in cases of AMS and non-AMS headaches. Many cases of high altitude non-AMS headache are resulted by tension and light reflection at altitude.
PMCID: PMC3426732  PMID: 22942999
High Altitude; Headache; Mountain Sickness; Incidence; AMS
23.  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
24.  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.
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.
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.
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.
PMCID: PMC3469801  PMID: 23091530
epidemiology; headache; impact; migraine; tension-type headache; prevalence
25.  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.
PMCID: PMC3173628  PMID: 21744226
Outpatient; Headache; Cross-sectional study; Clinical feature; Migraine

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