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Abstract

Background

Health-related quality of life (HRQoL) is emerging as an important element of clinical research in primary headache disorders, allowing a measure of the impact of headache on patients’ well-being and daily life. A better understanding of this may contribute to improved resource allocations and treatment approaches.

Objective

The objective of this study is to review available data on HRQoL in primary headache disorders and identify any influencing factors.

Methods

Database searches including MEDLINE, PsycINFO and EMBASE were performed. Studies that investigated HRQoL in patients with primary headache disorders were included and reviewed. Trials that evaluated the efficacy of medications or interventions were excluded.

Results

A total of 80 articles were included in the review. Both physical and emotional/mental aspects of HRQoL were impaired across headache subtypes, although the extent varied depending on headache type. A number of factors influencing HRQoL were also identified.

Conclusion

This narrative review suggests that headache, particularly in its chronic form, has a great impact on HRQoL. Clinical practice should not solely focus on pain alleviation but rather adopt routine assessment of HRQoL. Furthermore, identification and management of associated psychological comorbidities, which can significantly influence HRQoL in headache sufferers, are essential for optimal clinical management.

Keywords

Primary headache disorder tension-type headache migraine cluster headache chronic daily headache quality of life

Introduction

Health-related quality of life (HRQoL) measures the impact of an illness on the patients’ physical, emotional and social functioning (1). The importance of measuring HRQoL in patients with chronic disorders has become an area of interest in clinical practice, as it provides the patient’s subjective experience of the impact of his or her disorder (2). Various generic instruments have been developed to evaluate HRQoL, which can be used across different disorders, allowing comparisons with other medical conditions and with healthy controls (3,4).

Within the headache field, much of the work relating to HRQoL has focused mainly on migraine, as it is one of the most frequent primary headache diagnoses. Despite the lack of any physical abnormality, the nature of the attacks with their recurring pain and associated symptoms often influences the patients’ ability to function normally. The World Health Organization (WHO) in its Global Burden of Disease study conducted in 2000 reported that migraine is in the top 20 causes of disability worldwide (5). Migraine-specific HRQoL scales have thus been developed to measure the areas of life that may be affected in this patient group. This includes the Migraine-Specific Quality of Life measure (MSQoL) (6), the Migraine-Specific Quality of Life Questionnaire (MSQ) (7,8), and the 24-hour Migraine Quality of Life Questionnaire (24-hr-MQoLQ) (9). Furthermore, a number of headache disability scales that assess disability due to headaches are available, including the Migraine Disability Assessment Scale (MIDAS), the Headache Impact Test (HIT-6) and the Henry Ford Headache Disability Inventory (HDI). Although disability and HRQoL are independent constructs, they are closely related and assessment of disability is often included as part of HRQoL measures (10).

Meanwhile, HRQoL in other primary headache disorders such as tension-type headache (TTH) and cluster headache (CH) have been less studied and disease-specific measures for them are currently unavailable. We reviewed the literature with two main objectives: 1) to assess HRQoL in primary headache disorders, and 2) to identify factors that may influence HRQoL in these disorders.

Methods

Search strategies and data sources

An electronic search of MEDLINE (1950–present), PsycINFO (1974–present), EMBASE (1974–present) and the Cochrane Library databases was carried out using the following terms: (“quality of life” OR “disability” OR “functioning”) AND (“headache” OR “primary headache disorders” OR “primary headache” OR “migraine” OR “tension-type headache” OR “tension headache” OR “cluster headache” OR “trigeminal autonomic cephalalgias” OR “chronic headache” OR “chronic daily headache”) for relevant published literature up to the end of September 2013. Selection criteria were studies that: assessed HRQoL or disability in primary headache disorders or chronic daily headache (CDH) as either the primary or secondary outcome, used the International Headache Society (IHS) criteria for definition of primary headache disorders and articles published in English. We excluded studies that recruited patients with medication-overuse headache (MOH) and those evaluating the efficacy of medications or non-medication interventions, as our aim was to assess HRQoL in the different primary headache disorders per se, and not the changes to it following treatment. The quality of the included studies was assessed using the Newcastle-Ottawa Scale (NOS), which evaluates for quality of study design in three aspects: participant selection (four questions), participant comparability (one question) and outcome of studies (three questions). A maximum of four points can be awarded for selection, two for comparability and three for outcome, with a possible total score of nine points. Studies scoring more than five points are considered to be of moderate quality, whereas those scoring eight and above are deemed to be of good quality (11). The two primary authors (NAB and ST) reviewed the retrieved studies and any disputes were resolved by the final author (MM). Results are presented with a narrative approach.

Results

In total 422 citations were identified from the database and 288 were excluded after abstract screening, as they did not meet the selection criteria, were not available in full text or were duplicate publications. A further 59 were excluded after the full articles were analyzed, as they did not meet the inclusion criteria or included patients with MOH. Five additional articles identified from the references were included. Following this, 80 articles were eligible for the final review (Figure 1), which looked at various primary headache subtypes. Using the NOS, 68 studies were found to be of moderate to good quality. Of those studies that were deemed to be of poor quality, scoring four points or less on the NOS, seven were assessing HRQoL in migraineurs, three studies were comparing HRQoL in patients with migraine and TTH and one study each were conducted on CH and CDH patients. One of the reasons for the low scores in these studies was the small sample sizes of the study groups.

Figure 1.

Flow diagram showing the results of the literature search.

We decided to include all the studies in our narrative synthesis, as we wanted an overall overview of the published literature in this field to date, especially considering the limited number of studies in some headache subtypes, notably TTH and CH. Most of the studies reviewed assessed HRQoL on patients with migraine (73 studies), with comparatively fewer studies performed on patients with TTH (26 studies) and CDH (23 studies), and even fewer in CH patients (nine studies) (Figure 2). Furthermore, most studies used generic instruments (30 studies) and headache disability scales (39 studies) (12 –36) as their measure. The most widely used generic scale was the Short Form 36 (SF-36) (22 studies) (12 –18,37 –52). Migraine-specific HRQoL scales were used in only 14 studies, the majority of which were assessing HRQoL in migraineurs (12,13,19 –21,37,39,49,53 –59).

Figure 2.

The pie chart shows the headache types included in the 80 studies reviewed.

HRQoL by headache diagnoses

Migraine

We identified 73 studies investigating HRQoL in migraine sufferers, the majority of them being of moderate to good quality (Table 1). No differences were reported in HRQoL between migraine subtypes (migraine with aura, migraine without aura, and migraine with and without aura) (41). Nineteen studies used the SF-36 and demonstrated that overall, migraineurs had significantly diminished HRQoL in both physical and mental health domains compared to healthy controls (14 –18,22,38,40,42 –44,46 –50,60). In particular, there were decreases of 10 points or more in the role physical (10/19 studies), role emotional (eight of 19 studies) and bodily pain (eight of 19 studies) domains (14,38 –40,42,43,46 –48,60). Meanwhile, six of 19 studies found decreases of 10 points or more in the social functioning subscale (39,40,43,44,46,47).

Table 1.

Studies of quality of life in migraine.

Reference	Author (year)	Patient demographics (clinic versus community, sample size and mean age; where available)	QoL and other instruments used	Study quality (Newcastle- Ottawa scale)	Results
38	Durham et al. (1998)	Community 2949 hospital nurses (495 had migraine) Mean age 42 ± 10.7 years	-SF-36 -Likert scale measure of work productivity	S: 3 C: 0 O: 1 T: 4	Migraineurs had significantly poorer QoL, with impaired work productivity, compared to those with both severe and non-migraine, non-severe headaches.
13	Holroyd et al. (2007)	Community 232 frequent migraineurs Mean age 38.0 years	-MSQ v.2.1 -SF-36 -PCS -PRIME-MD -BAI -BDI-II -HDI -MIDAS	S: 4 C: 0 O: 2 T: 6	Psychological response to migraine, particularly catastrophizing and severity of migraine-associated symptoms, are important predictors of HRQoL.
55	Kolotylo and Broome (2000)	Community 247 women with migraine Mean age 43.5 years	-MRQOL -MPQ-SF -CPEI-H -CSQ -CES-D -HDI	S: 2 C: 0 O: 2 T: 4	The coping, depressive symptomatology and the chronic pain experience were all significantly correlated with disability and QoL.
22	Lantéri-Minet et al. (2005)	Community 1957 migraineurs 8287 non-migraine individuals Mean age 47.3 ± 17.4 years	-SF-12 -MIDAS -HADS	S: 3 C: 0 O: 3 T: 6	More than half of migraineurs studied have associated anxiety and/or depression. Presence of this comorbidity lowered perceived treatment efficacy and satisfaction.
60	Lipton et al. (2000)	Community 389 migraine cases 379 non-migraine controls	-SF-12 -PRIME-MD	S: 4 C: 2 O: 3 T: 9	Migraineurs have lower HRQoL compared to non-migraine controls. There is a high comorbidity with depression, both having a significant and independent influence on HRQoL. Pain intensity correlates with HRQoL.
44	Lipton et al. (2003)	Community 200 migraine 200 controls	-SF-36 -Work-related disability score	S: 4 C: 2 O: 3 T: 9	Migraineurs in a population-based sample have lower HRQoL scores compared to controls, and work-related disability is associated with lower HRQoL scores, especially in individuals classified with moderate to severe disability.
42	Terwindt et al. (2000)	Community 620 migraineurs Mean age 42.1 years 5378 non-migraine Mean age 42.5 years	-RAND-36	S: 4 C: 2 O: 3 T: 9	Comorbidity with asthma or chronic musculoskeletal pain is greater in migraineurs compared to non-migraineurs. Attack frequency is an important predictor factor for HRQoL. Physical, mental, and social functioning are most affected.
54	Tkachuk et al. (2003)	Community 37 migraineurs Mean age 14.3 years	-MSQ v. 2.1 -Headache diary	S: 2 C: 0 O: 3 T: 5	Headache intensity and frequency, the presence of migraine-associated symptoms, particularly nausea, photophobia and phonophobia and history of at least one emergency visit in the previous year, were all important predictors of greater impairment and poorer quality of life.
46	Osterhaus et al. (1994)	Community 546 migraineurs Mean age 41.1 ± 9.9 years	-SF-36	S: 3 C: 2 O: 3 T: 8	Migraineurs had a lower HRQoL compared to the general population with no chronic condition. Bodily pain, role physical and social functioning domains were the most affected. Pain intensity was correlated to HRQoL scores.
20	Blumenfeld et al. (2011)	Community 8227 EM Mean age 40.2 ± 11.4 years 499 CM Mean age 41.7 ± 12.1 years	-MIDAS -MSQ v2.1 -PHQ-4	S: 3 C: 2 O: 2 T: 7	Chronic migraineurs had significantly more disability and reduced HRQoL, with more medical and psychiatric comorbidities, compared to episodic sufferers.
61	Kolotylo and Broome (2000)	Community 19 migraine 16 non-migraine	-HDI -MPQ -CES-D -CPCI -CPEI-H -Headache Profile and Precipitating Factors Instrument	S: 3 C: 0 O: 1 T: 4	There was greater headache-related disability in migraineurs compared to the non-migraine group, with higher levels of depressive symptoms.
23	Wahab and Ugheoke (2009)	Community 1513 respondents, including 145 migraineurs Mean age 23.3 ± 2.5 years	-MIDAS	S: 2 C: 0 O: 3 T: 5	Fifty-three (36.6%) migraineurs had moderate-severe disability.
56	Fagan (2003)	Community 25 migraine	-MSQOL -Adult adolescent parenting inventory	S: 2 C: 0 O: 2 T: 4	Migraine may be related to dysfunctional parenting patterns; as a mother’s migraine becomes disabling, the risk of inappropriate expectations of their children and favoring parent-child reversal role increases.
34	Kim et al. (2013)	Community 1507 respondents, including 91 with migraine and 167 with probable migraine	-HIT-6	S: 3 C: 2 O: 3 T: 8	Disability in probable migraine is comparable to strict migraine, with numbers of missed days and reduced productivity days being similar. However, patients with strict migraine scored higher on HIT-6 compared to those with probable migraine.
62	Stewart et al. (1999)	Community 97 migraine 80 non-migraine	-MIDAS	S: 4 C: 0 O: 3 T: 7	The mean MIDAS score for migraineurs were three times more than that of controls. There were more missed days reported for household work, followed in order by family, social and leisure activities and school or paid work. Days of reduced productivity at school or paid work were considerably more common than missed days.
63	Stewart et al. (1996)	Community 2355 participants including 1663 migraineurs	-HDHCQ	S: 3 C: 0 O: 3 T: 6	Migraine sufferers accounted for about 90% of the total “lost workday equivalents” experienced by all respondents. Reported actual lost workdays and reduced effectiveness at work had approximately equal contributions to the total “lost workday equivalents.”
11	Bagley et al. (2012)	Community 8227 EM 499 CM	-MSQ v2.1 -HIT-6 -MIDAS -PHQ-4	S: 3 C: 0 O: 3 T: 6	Patients with CM have poorer HRQoL. The role restrictive domain of MSQv2.1 was the most significantly affected by increased disability.
24	Canuet et al. (2008)	Clinic 116 migraineurs Mean age 37.8 ± 10.0 years	-HANA -SDS -MIDAS	S: 4 C: 2 O: 2 T: 8	QoL was significantly more impaired in chronic migraineurs. Disability was a predictor of QoL in both EM and CM. Depressive symptoms may also play a role in QoL in chronic migraineurs.
64	Dahlöf and Dimenäis (1995)	Clinic 138 migraineurs	-MSEP -SSAP -PGWB	S: 3 C: 2 O: 2 T: 7	General well-being of migraine patients is impaired even between the attacks.
53	Mula et al. (2009)	Clinic 112 migraineurs Mean age 41.2 ± 13.3 years	-MSQ v 2. 1 -MINI plus 5.0.0	S: 4 C: 0 O: 2 T: 6	Comorbid mood and anxiety disorders are not associated with HRQoL measures in migraineurs; however, they may require specific interventions.
14	Nicodemo et al. (2008)	Clinic 91 menstrual and menstrually related migraine Mean age 35.9 ± 7.2 years 83 healthy women Mean age 35.1 ± 8.0 years	-SF-36 -MIDAS -EDI-II -BDI -MINI	S: 3 C: 1 O: 2 T: 6	Even in a subgroup of menstrual migraineurs, there is significant disability and poor QoL associated with the migraines.
65	Ruiz de Velasco et al. (2003)	Clinic 33 migraineurs 5 self-medicated patients 5 relatives of migraineurs 7 health care professionals	-Qualitative interview	S: 2 C: 0 O: 2 T: 4	Migraine has a negative impact on QoL, affecting all aspects of daily living (physical, emotional and social). Patients and relatives reported that the family environment and psychological well-being were the areas most affected.
66	Powers et al. (2004)	Clinic 686 migraineurs Mean age 11.4 ± 3.6 years	-PedsQL 4.0	S: 3 C: 0 O: 2 T: 5	Children and adolescents with migraine scored significantly lower than healthy norms. There were age-related effects on QoL, with school functioning being more impaired in teenagers while young children scored lower on social functioning.
67	Leonardi et al. (2010)	Clinic 102 migraineurs Mean age 43.5 ± 11.4 years	-MIDAS -WHO-DAS II -SF-36	S: 4 C: 0 O: 2 T: 6	Disability and HRQoL scores were lower in migraineurs compared to the Italian general population, which worsened consistently with increased disease severity.
16	Raggi et al. (2011)	Clinic 102 migraineurs Mean age 43.5 ± 11.4 years	-MIDAS -WHO-DAS II -SF-36	S: 1 C: 0 O: 3 T: 4	Disability is associated with lower HRQoL scores in migraineurs, with significant differences observed between the minimal-mild and moderate-severity cluster of patients.
17	Raggi et al (2011)	Clinic 87 migraineurs Mean age 44.2 years	-MIDAS -WHO-DAS II -SF-36	S: 1 C: 0 O: 2 T: 3	Female migraineurs have high disability and poor HRQoL, with negligible change at three-month follow-up.
48	Paschoal et al (2013)	Clinic 50 EM 56 CM 51 controls	-SF-36 -STAI -BDI	S: 4 C: 0 O: 2 T: 6	Chronic migraineurs had significantly reduced HRQoL in five domains compared to controls and in four domains compared to episodics. There was a high level of self-reported anxiety and/or depression in migraineurs, which may contribute to the poorer HRQoL.
49	Zandifar et al. (2013)	Clinic 74 EM 27 CM Mean age 30.2 ± 8.8 years	-SF-36 -MSQv2.1 -MIGSEV	S: 4 C: 0 O: 3 T: 7	There was no significant difference in mean MSQ scores between episodic and chronic migraineurs. There was a high correlation between the MSQ scores and the physical component of the SF-36, suggesting that physical impairment has a relatively higher contribution to poorer HRQoL.
25	Raggi et al. (2010)	Clinic 88 migraine without aura 9 migraine with aura Mean age 43.5 years	-MIDAS -ICF checklist	S: 4 C: 0 O: 3 T: 7	Number of days with reduced effectiveness at work was much higher than actual missed days. Number of days with disability in non-working activities were higher than paid work activities. Migraineurs reported difficulties in the mobility domain, with restrictions on lifting/carrying objects and driving.
47	Leonardi et al. (2010)	Clinic 88 migraine without aura 9 migraine with aura Mean age 43.5 ± 11.4 years	-MIDAS -ICF checklist -WHO-DAS II	S: 4 C: 0 O: 3 T: 7	Forty-five percent of migraineurs reported severe disability, with number of days of disability in non-working activities being higher. The most important limitations were related to life activities and participation in social situations. Problems in domestic life activities are wider and more severe than in employment.
68	Gedikoglu et al. (2005)	Clinic 56 migraine without aura 4 migraine with aura Mean age 36.8 ± 9.9 years	-MIDAS	S: 3 C: 0 O: 3 T: 6	There were more days of reduced productivity compared to actual missed days. Reduced productivity in household chores was more impaired compared to productivity at school or work.
26	Juyal et al. (2010)	Clinic Migraine without aura (48 EM, 14 CM) Migraine with aura (6 EM, 1 CM)	-MIDAS -HIT-6	S: 2 C: 0 O: 3 T: 5	The majority of patients had moderate to severe disability and severe functional impairment associated with their headaches.
27	D’Amico et al. (2001)	Clinic 109 migraineurs Mean age 37.5 ± 10.9 years	-MIDAS	S: 4 C: 0 O: 2 T: 6	More than 60% of migraineurs reported moderate to severe disability due to their headaches.
58	Ohbu et al. (2004)	Clinic 57 migraineurs Mean age 43 ± 15 years	-MSQoL	S: 3 C: 0 O: 2 T: 5	Migraines significantly impair daily activities, with 72% reporting that the headache ruins the rest of their day. Headache severity and frequency correlated well with HRQoL.
69	D’Amico and Bussone (2003)	Clinic 264 migraine Mean age 37.6 ± 10.9 years	-MIDAS	S: 3 C: 0 O: 3 T: 6	The MIDAS scores showed good correlation to the SF-36 scores, particularly with the extent to which pain, physical health and emotional state interfere with functioning.
18	Sharma et al. (2013)	Clinic 71 migraine Mean age 30.6 ± 9.1 years 71 controls Mean age 31.3 ± 9.1 years	-MIDAS -SF-36 -HADS	S: 3 C: 0 O: 3 T: 6	Migraineurs had a significantly poorer HRQoL, particularly in role physical and role emotional domains, with greater depressive and anxiety symptoms compared to controls. Greater disability predicted poorer HRQoL.
57	El Hasnaoui et al. (2004)	Clinic 3260 participants, including 1271 migraineurs Mean age 40.3 ± 11.6 years	-QVM -MIGSEV	S: 4 C: 0 O: 3 T: 7	There was a clear relationship between the MIGSEV scores and HRQOL, with more severe attacks related to poorer HRQoL.
50	Stuginski-Barbosa et al. (2012)	Clinic 53 EM Mean age 36.9 years 37 CM Mean age 38.6 years 89 controls Mean age 40.8 years	-SF-36 -BDI	S: 4 C: 0 O: 3 T: 7	Migraineurs have significantly reduced HRQoL compared to controls, and chronic sufferers have lower HRQoL scores compared to their episodic counterparts. Headache frequency and depression independently affects HRQoL in CM.
70	Kashikar-Zuck et al. (2013)	Clinic 153 CM Mean age 14.5 years 151 juvenile fibromyalgia Mean age 15.1 years	-PedsQL -CDI -ASI-4	S: 3 C: 0 O: 3 T: 6	Negative impact on HRQoL is much less severe for youths with CM compared to juvenile fibromyalgia. However, when chronic migraineurs were distressed, their HRQoL became comparable to juvenile fibromyalgia.
29	Shin et al. (2008)	Clinic 130 migraine Mean age 36.6 ± 9.5 years	-HIT-6 -MIDAS	S: 4 C: 0 O: 3 T: 7	Headache frequency appeared to be related to increased disability, whereas headache duration and intensity did not differ with HIT-6 scores.
28	Park et al. (2008)	Clinic 92 migraine Mean age 36.6 ± 9.5 years	-MIDAS	S: 4 C: 0 O: 2 T: 6	More than half of the days with migraine resulted in disability, with headache intensity, nausea/vomiting and employed work status being significant predictors for headache-related disability.
30	Villani et al. (2011)	Clinic 44 multiple sclerosis patients with migraine 44 multiple sclerosis patients without migraine Mean age 35.2 ± 7.6 years	-MIDAS -MSQol-54 -EDSS -FSS -BDI -STAI -TAS-20	S: 2 C: 0 O: 3 T: 5	Presence of comorbid migraine negatively affects some specific aspects of the physical domain of HRQoL, namely role physical, bodily pain and health perception. There is a strong correlation between MIDAS scores and these domains.
15	Fuh and Wang (2006)	Clinic 231 migraine Mean age 35.3 ± 8.1 years	-SF-36 -MIDAS	S: 4 C: 0 O: 3 T: 7	Even though the MIDAS and SF-36 scales are well correlated, they measure different aspects of the impact of headache. Migraineurs had significantly reduced HRQoL.
65	Hung et al. (2006)	Clinic 281 migraine Mean age 35.3 ± 8.2 years	-MIDAS	S: 4 C: 0 O: 3 T: 7	Forty-six percent of migraineurs had moderate to severe disability, with more days of reduced productivity than actual missed days. Number of days of missed housework was greater than non-work activities (family, social, leisure), followed by paid work.
35	Ford et al. (2008)	Clinic 141 migraine Mean age 37.2 ± 13.2 years	-HIT-6	S: 4 C: 0 O: 3 T: 7	Headache severity, frequency, headache-free days, neck pain and one’s coping mechanism to their headache were significant predictors of disability.

These are studies that have focused specifically on migraine; however, our overall migraine group (73 in total) also took into account studies from the combination headache group (Table 4) where health-related quality of life (HRQoL) was assessed in migraineurs.

Newcastle-Ottawa Scale: S: selection; C: comparability; O: outcome; T: total.

QoL: quality of life; EM: episodic migraine; CM: chronic migraine; HIT-6: Headache Impact Test; MIDAS: Migraine Disability Assessment Scale; SF-36: Short Form 36; TAS-20: Toronto Alexithymia Scale-20; STAI: State and Trait Anxiety Scale; BDI: Beck Depression Inventory; FSS: Fatigue Severity Scale; EDSS: Expanded Disability Status Scale; MSQol-54: Multiple Sclerosis Quality of Life 54; CDI: Children’s Depression Inventory; ASI: Adolescent Symptom Inventory; PedsQL: Pediatric Quality of Life Inventory version 4.0; MIGSEV: Migraine Severity Scale; QVM: Qualité de Vie et Migraine; HADS: Hospital Anxiety and Depression Scale; WHO-DAS II: World Health Organization Disability Assessment Schedule; ICF: International Classification of Functioning, Disability and Health; MINI: Mini International Neuropsychiatric Interview; EDI-II: Eating Disorder Inventory; MSQ: Migraine Specific Quality of Life Questionnaire; PGWB: Psychological General Well-being schedule; SSAP: Subjective Symptom Assessment Profile; MSEP: Minor Symptom Evaluation Profile; SDS: Self-Rating Depression Scale; HANA: Headache Needs Assessment; PHQ-4: Patient Health Questionnaire 4-items; RAND-36: RAND-36 Item Health Survey questionnaire; PRIME-MD: Primary Care Evaluation for Mental Disorders; CES-D: Center for Epidemiologic Studies-Depression Scale; CSQ: Coping Strategies Questionnaire; CPEI-H: Chronic Pain Experience Instrument-Headache; MPQ-SF: McGill Pain Questionnaire-Short Form; HDI: Henry Ford Headache Disability Inventory; BAI: Beck Anxiety Inventory; PCS: Pain Catastrophizing Scale.

Comparisons of HRQoL to asthmatics showed that migraineurs scored significantly lower on social functioning, role emotional, mental health, bodily pain and vitality domains of the SF-36 scale. However, compared to patients with chronic musculoskeletal pain and juvenile fibromyalgia, migraineurs had better overall HRQoL (42,70). Similarly, children with primary headache disorders scored significantly worse on all aspects of HRQoL, except physical functioning and general health perception subscales of the SF-36 scale, when compared to children with asthma, and had generally worse HRQoL than children with attention deficit hyperactivity disorder (ADHD) (72). In comparison to hypertension, diabetes and osteoarthritis, migraineurs scored lower in most SF-36 domains, particularly those measuring well-being (mental health, emotional and social functioning) (46,73).

This impairment in HRQoL is also reflected in studies using migraine-specific HRQoL and headache disability scales. There was a decrease of more than 20 points in all three domains of the MSQ scale (role restrictive, role preventive and emotional functioning) between migraineurs and controls (37). Twenty-eight studies used the MIDAS questionnaire, and eight of 13 studies that reported MIDAS grades found that more than half of migraineurs (14,23,25 –28,34,67,71) were moderately to severely disabled by their headaches (MIDAS grades III and IV). This was also seen in two of six studies assessing headache disability using the HIT-6 scale (19,35). However, migraineurs tend to attend school or paid work despite their headache, with more days of reduced productivity at school or work than actual days of missed activity (14,16,25,47,62,65,67,68,71,74). There was also a trend of more missed days reported for household work, followed in order by family, social and leisure activities and school or paid work, respectively. Days of reduced productivity by at least half in household chores were also greater than in school or paid work (14,16,25,47,55,62,67,68,71,74).

Two studies evaluated HRQoL impairment in groups of employed individuals with migraine, namely nurses and French workers. The nurses suffering from migraine showed lower HRQoL compared with non-headache participants, especially in the physical role and bodily pain subscales of the SF-36 scale, which are sensitive to headache severity. Consequently, this affected their work, leading to missed workdays, arriving late, and reduced function and productivity at work (38). Conversely, a comparative study among French workers showed that absenteeism among migraine sufferers was not statistically different from controls, although performance was greatly reduced, which was in agreement with the findings from the above studies (40).

The tendency of missing family time over paid work can lead to disruption in family relationships. This was found to be a central issue raised by patients and relatives in a study, whereby both viewed that family environment was the area most affected by migraines (65). Patients and their spouses also expressed their concern regarding the impact of migraines on the emotional development of their children (65). Indeed, a study exploring the relationship between maternal migraine and child functioning found that migraine may be related to dysfunctional parenting patterns, with the risk of parent-child reversal roles and inappropriate parents’ expectation of their children increasing as a mother’s migraine becomes disabling (56).

With regards to migraine among the pediatric and adolescent population (48,54,70,66), there was an overall impairment in HRQoL domains. Adolescents reported more impairment in school functioning, whereas social functioning was reportedly more impaired in younger children (aged 5–7 years) (66,70). Adolescent autonomy and coping mechanisms play a significant role in determining HRQoL; the more able a child is in coping with pain, the better the HRQoL. Moreover, having a successful adaptive family routine, whereby families adapt and organize their daily activities in a positive way for all members, predicts a better outcome for HRQoL (75,76).

In view of the emotional and mental impairments associated with migraine, much attention has been focused on the association between psychological well-being and HRQoL (13,18,20,22,48,50,53,60,61,64,70,77). These studies showed that most migraineurs exhibited anxiety and/or depressive symptoms, and comorbidity with both anxiety and depression was positively correlated to headache-related disability (22,77). These psychiatric disorders have a negative influence on HRQoL independent of each other; however, migraineurs with combined anxiety and depression have significantly poorer HRQoL scores, with the greatest impact being on the mental health domains of the SF-36 scale (22,48,60). The presence of these affective disorders also affects perceived migraine, treatment satisfaction and efficacy (22). Conversely, no differences were reported in HRQoL scores between migraineurs with and without comorbid psychiatric disorders (53). Moreover, it has been suggested that the psychological response to severe migraine, particularly catastrophizing, has a greater impact on HRQoL impairment than the mere presence of comorbid anxiety and/or depression (13).

TTH

The studies assessing HRQoL in TTH are shown in Table 2. Five studies used the SF-36 scale, and two of five studies reported that in episodic TTH (ETTH), with fewer than 15 TTH days per month, there was more than a 10-point decrease in bodily pain scores compared to controls (40,41). Meanwhile, in chronic TTH (CTTH), with more than 15 TTH days per month, physical, social and role functioning were markedly impaired (41,76). There was no significant difference in overall HRQoL between ETTH and CTTH patients, although work performance and physical health were more severely affected in the latter (34). Interestingly, patients with CTTH reported greater pain than episodic migraineurs, which may reflect headache chronicity rather than individual attack severity (77).

Table 2.

Studies of quality of life in tension-type headache.

Reference	Author (year)	Patient demographics (clinic versus community, sample size and mean age; where available)	QoL and other instruments used	Study quality (Newcastle-Ottawa scale)	Results
41	Silva et al. (2004)	Community 127 ETTH Mean age 36.4 ± 8.52 years 124 healthy controls Mean age 37.8 ± 10.2 years	-SF-36 -Pain impact VAS	S: 3 C: 0 O: 2 T: 5	HRQoL in ETTH is lower compared to controls, with vitality and bodily pain being significantly affected.
76	Holroyd et al. (2000)	Community 245 CTTH Mean age 37 years 89 healthy controls Mean age 38 years 2008 MOS national reference sample (general population)	-SF-20 -Headache disability scale -BDI -STAI -PRIME MD -Hassles Scale-SF -RIIR	S: 4 C: 0 O: 2 T: 6	CTTH sufferers had lower scores on SF-20 compared to controls, with emotional well-being, sleep and energy levels being significantly impaired. There was also increased prevalence of anxiety or mood disorders among CTTH sufferers.
45	Peñacoba-Puente et al. (2008)	Clinic 25 CTTH Mean age 40 ± 17 years	-SF-36 -BDI-II -STAI	S: 3 C: 0 O: 3 T: 6	Anxiety had a mediating effect between frequency of headaches and QoL, whereas depression had a moderating effect.
78	Gedikoglu et al. (2006)	Clinic 32 CTTH Mean age 34.5 ± 9.4 years	-MIDAS	S: 3 C: 0 O: 3 T: 6	Patients with CTTH did not miss work/school but had reduced productivity by half or more at work/school due to their headaches.

These are studies that have focused specifically on tension-type headache; however, our overall tension type headache group (26 in total) also took into account studies from the combination headache group (Table 4) where health-related quality of life (HRQoL) was assessed in tension-type headache.

Newcastle-Ottawa Scale: S: selection; C: comparability; O: outcome; T: total.

QoL: quality of life; ETTH: episodic tension-type headache; VAS: visual analog scale; CTTH: chronic tension-type headache; MOS: Medical Outcomes Study; SF-36: Short Form 36; SF-20: Short Form 20; BDI: Beck Depression Inventory; STAI: State and Trait Anxiety Scale; PRIME-MD: Primary Care Evaluation for Mental Disorders; RIIR: Recurrent Illness Impact Recording; MIDAS: Migraine Disability Assessment Scale.

This is in line with the finding that even though the majority of CTTH patients had a generalized impairment in functioning, which persists even outside of attacks (12), this was usually of moderate severity, without necessarily forcing cancellations of work or social commitments. Only a minority (up to 6%) rated their work performance as severely impaired and only 9% reported severe impairment in social functioning (19,76). The greatest impairment was related to sleep, energy levels and emotional well-being (76). The degree of impairment in TTH is comparable to or greater than those with back problems or arthritis (76).

Anxiety or mood disorders were found to be three to 15 times as frequent in CTTH patients as controls (76). The observed depression was mild to moderate in severity; however, anxiety was sufficiently high to impair functioning (76). The association between anxiety/depression and HRQoL in CTTH was investigated in one study, which suggested that anxiety has a mediating effect between headache frequency and vitality, social functioning and mental health, while depression had a modulatory effect on these same domains (45).

CH

CH is characterized by recurring attacks of excruciatingly severe, strictly unilateral pain that is orbital, supraorbital or temporal in location (5). It typically occurs in bouts, lasting weeks or months, known as episodic CH (ECH). However, about 10% of patients have chronic CH (CCH), with remission periods lasting less than a month per year (5). The studies examining the impact of CH on HRQoL are listed in Table 3, which suggest that during active bouts, CH patients have poorer HRQoL compared to the general population, with impairment being greater for patients with older age of onset of CH (79). There were reductions of 10 points or more in the role physical, bodily pain, general health, social functioning, role emotional and mental health domains between active CH patients and controls in two studies using the SF-36 scale (39,51). This correlated with marked limitations in role and emotional functioning of the MSQ scale, with more than 40 points’ difference in scores between active CH patients and controls, and CH patients inside and outside a bout (39). Furthermore, CCH and active ECH patients were found to be more incapacitated compared to migraineurs (79), with significantly worse pain scores (77). Interestingly, CH patients were found to have lower SF-36 scores compared to patients with previous myocardial infarction (39).

Table 3.

Studies of quality of life in cluster headache.

Reference	Author (year)	Patient demographics (clinic versus community, sample size and mean age; where available)	QoL and other instruments used	Study quality (Newcastle- Ottawa scale)	Results
51	D’Amico et al. (2002)	Clinic 34 ECH 22 CCH Mean age 45.0 ± 11.4 years	-SF-36	S: 2 C: 0 O: 2 T: 4	CH patients had significantly reduced HRQoL compared to the general Italian population. No significant difference was found between HRQoL scores of ECH and CCH patients.
80	Jensen et al. (2007)	Clinic 59 ECH 15 CCH 10 probable CH Mean age 50 years	-Semi-structured interview	S: 4 C: 0 O: 3 T: 7	CH has considerable impact on HRQoL, with 78% reporting restrictions in daily living, even outside a bout. Furthermore, 96% report having to make lifestyle changes, with social, family and work life impaired.
36	Donnet et al. (2007)	Clinic 113 CCH Median age 42 years	-HIT -HADS	S: 4 C: 0 O: 2 T: 6	The functional impact of CH was reported as severe by 74% of patients. There is high comorbidity with anxiety (75%) and depression (43%) in this patient group.

These are studies that have focused specifically on cluster headache; however, our overall cluster headache group (nine in total) also took into account studies from the combination headache group (Table 4) where health-related quality of life (HRQoL) was assessed in cluster headache.

Newcastle-Ottawa Scale: S: selection; C: comparability; O: outcome; T: total.

QoL: quality of life; CH: cluster headache; ECH: episodic cluster headache; CCH: chronic cluster headache; SF-36: Short Form 36; HIT: Headache Impact Test; HADS: Headache Anxiety and Depression Scale.

Table 4.

Combination headache types.

Reference	Author (year)	Patient demographics (clinic versus community, sample size and mean age; where available)	QoL and other instruments used	Study quality (Newcastle- Ottawa scale)	Results
12	Duru et al. (2004)	Community 416 migraine 464 migrainous disorder 151 CDH 455 EH (not specified) Mean age 39.7 years	-QVM -MIDAS -MIGSEV	S: 3 C: 0 O: 3 T: 6	Patients with CDH had the poorest HRQoL, followed by migraineurs and those with other forms of EH. Headache frequency, severity, headache-related disability, and resistance to treatment were all correlated to QoL scores.
40	Michel et al. (1997)	Community 989 migraine Mean age 48.0 ± 0.1 years 1001 other headaches (includes TTH) Mean age 47.9 ± 0.1 years 1757 non-headache sufferers Mean age 48.1 ± 0.1 years	-SF-36 -Spielberger anxiety scale	S: 2 C: 2 O: 2 T: 6	Migraineurs have poorer QoL and higher anxiety compared to the non-headache group. No differences were detected between migraineurs and other-headache sufferers for any variables.
86	Milde-Busch et al. (2010)	Community 43 migraine 220 TTH 123 migraine and TTH 547 no headache	KINDL-R score	S: 2 C: 0 O: 3 T: 5	Migraineurs reported higher reduction in physical well-being and poorer HRQoL than individuals with TTH.
37	Bigal et al. (2001)	Community 256 migraine 336 ETTH Mean age 21 years	-SF-36 -MSQ -PAQ -Von Korff grading scale for chronic pain	S: 2 C: 0 O: 3 T: 5	Migraine causes significantly more impairment than ETTH, although students with ETTH also reported a reduction in work productivity. This persisted even between attacks.
43	Uthaikhup et al. (2009)	Community 118 headache subjects (includes 26 migraine and 10 TTH) Mean age of migraine 66.6 ± 4.8 years, TTH 65.3 ± 4.5 years 44 non-headache controls Mean age 66.4 ± 4.1 years	-SF-36 -GDS-S -SOPA-35 -NDI	S: 2 C: 0 O: 3 T: 5	Elders with headache had reduced HRQoL compared to controls. This was influenced by headache frequency. There were no differences between headache types. Patients with headache>15 days/month scored lowest on SF-36 domains and highest on GDS-S questionnaire.
87	Kröner-Herwig et al. (2010)	Community 245 migraine 291 TTH Mean age 12.5 ± 1.1 years	-PedMIDAS -YSR -German stress coping questionnaire	S: 2 C: 0 O: 3 T: 5	Moderate to severe disability was reported by 12% of migraineurs compared to only 1% of patients with TTH. In children, this disability is related to reduced functioning in school.
31	Sokolovic et al. (2013)	Community 1192 employees with migraine, TTH or both	-MIDAS	S: 2 C: 0 O: 3 T: 5	Patients with migraine had higher disability scores compared to those with TTH.
32	Fuh et al. (2010)	Community 346 migraine without aura 138 migraine with aura 444 probable migraine 1092 TTH 445 other headaches (not specified) Mean age 14.0 ± 0.9 years	-PedMIDAS -ADI	S: 2 C: 0 O: 3 T: 5	Migraineurs had the highest disability score, whereas those with TTH had the lowest score. Headache frequency, severe headache intensity and a higher depression score were important predictors for migraine. In TTH, only depression correlated well with headache disability.
74	D’Amico et al. (2004)	Community 250 respondents including 36 migraine and 10 TTH	-Own self-answering questionnaire	S: 2 C: 0 O: 1 T: 3	Headache-related disability was higher in migraineurs compared to TTH. More than half of migraineurs reported one to seven days/month at work with a headache, resulting in reduced productivity by at least half in 15%.
79	Saunders et al. (2008)	Community 5484 adult population; 236 migraineurs, 313 non-migraine headaches	-WHO-DAS II	S: 2 C: 0 O: 3 T: 5	Compared to controls, migraineurs had increased psychiatric comorbidity and had increased risk for other pain conditions and physical disorders. Role disability was increased in migraineurs compared to non-migraine headache and headache-free individuals.
39	Ertsey et al. (2004)	Clinic 35 ECH Mean age 44.7 ± 14.7 years 53 migraine Mean age 42.4 ± 11.2 years 62 controls Mean age 44.1 ± 14.2 years	-SF-36 -MSQ v.2.1	S: 3 C: 2 O: 2 T: 7	CH patients have a reduced HRQoL compared to controls, although between attacks this became comparable. In comparison to migraineurs, only the domains bodily pain and social functioning were significantly affected.
85	Nodari et al. (2002)	Clinic 26 migraine 48 TTH 84 controls Mean age 13.6 ± 2.7 years	-QLH-Y	S: 3 C: 0 O: 2 T: 5	QoL is compromised significantly in those with primary headache disorders. There is no significant difference in HRQoL scores between migraineurs and TTH patients.
78	Solomon et al. (1994)	Clinic 79 migraine 41 TTH 13 CH 49 CTTH and migraine Mean age 42.0 ± 12.7 years	-SF-20	S: 4 C: 0 O: 2 T: 6	CH patients had significantly worse pain and poor health compared to migraineurs, although physical functioning was least affected. Role (work) functioning was impaired in migraineurs, while in CTTH patients, mental health and functioning were most affected.
72	Bruijn et al. (2009)	Clinic 36 migraine 25 ETTH 7 CTTH 3 TTH and migraine Mean age 10.6 ± 3.2 years	-CHQ-PF50 Dutch edition	S: 4 C: 0 O: 2 T: 6	The HRQoL of children with primary headache was decreased compared with the cohort of healthy children (all but one subscale), asthma (seven subscale), and attention deficit hyperactivity disorder (six subscale). No significant differences were found between children with TTH and migraine.
84	Passchier et al. (1996)	Clinic 27 migraine 25 TTH 17 migraine and TTH Mean age 39.1 ± 13.3 years	-NHP -Emotional VAS	S: 3 C: 0 O: 3 T: 6	Each headache group had diminished HRQoL compared to the healthy group, with no differences in HRQoL between them. Physical mobility and social isolation was correlated to patient’s emotional pain.
83	Cavallini et al. (1995)	Clinic 258 EH (migraine, CH, TTH) 142 CDH (migraine with TTH, CTTH)	-QoL questionnaire (created ad hoc)	S: 4 C: 0 O: 1 T: 5	EH patients found the physical symptoms more disabling, while CDH patients had greater emotional disturbances during the attacks. In between attacks, QoL was more compromised in CDH than in EH patients.
75	Frare et al. (2002)	Clinic 31 migraine 17 ETTH Mean age 11.0 ± 1.9 years	- EFI	S: 2 C: 0 O: 2 T: 4	Headache duration and frequency are negatively correlated to QoL, whereas child coping has a positive influence.
80	Jürgens et al. (2011)	Clinic 27 CCH Mean age 42.1 years 26 ECH in a bout Mean age 41.3 years 22 ECH outside a bout Mean age 40.6 years 24 migraineurs Mean age 37.4 years 31 healthy controls Mean age 38.4 years	-HDI	S: 3 C: 0 O: 2 T: 5	CCH and ECH patients in a bout were significantly more disabled than those in remission and migraineurs, with healthy controls being the least impaired. CCH patients had higher psychiatric comorbidity, exhibiting more depressive symptoms, agoraphobia and suicidal tendencies. About a quarter of CCH patients were receiving invalidity allowance because of their headaches.
19	Nachit-Ouinekh et al. (2005)	Clinic 1324 migraine 855 migrainous disorder 358 other episodic headache (not specified) Mean age 43.3 ± 14.5 years	-HIT-6 -MIGSEV -QVM	S: 3 C: 0 O: 3 T: 6	The HIT-6 score was significantly higher in the migraine group, with more patients reporting severe impact. There was good correlation between HIT-6 scores and headache severity and HRQoL across all diagnostic groups.
84	Vadikolias et al. (2002)	Clinic 60 migraine 80 TTH (25 CTTH)	-MIDAS- work disability domain	S: 4 C: 0 O: 3 T: 7	Migraineurs had more missed days of work, whereas patients with TTH had more reduced effectiveness at work. Pain intensity was the main factor contributing to work disability in migraine, whereas headache characteristic did not account for work disability in TTH.
52	Manhalter et al. (2012)	Clinic 168 migraine 34 TTH (23 CTTH) Mean age 35.1 ± 11.5 years	-CHQQ -SF-36	S: 4 C: 0 O: 3 T: 7	Migraineurs had significantly reduced HRQoL scores compared to patients with TTH, especially in the role physical and bodily pain domains. There was no significant difference in overall HRQoL between ETTH and CTTH, although work performance and physical health were more severely affected in the latter. The perceived effect of TTH on HRQoL is largely independent of clinical headache characteristics.
90	Kaczynski et al. (2013)	Clinic 109 migraine 153 TTH Mean age 14.7 ± 1.6 years	-RCMAS -CDI -PRI -ARCS -PedsQL – school functioning scale	S: 3 C: 0 O: 3 T: 6	Adolescents with TTH had higher levels of depressive symptoms compared to migraineurs, and reported more difficulties in school functioning. Headache duration and comorbid depression were significantly associated with school functioning in both groups.
89	D’Amico et al. (2003)	Clinic 27 migraine 55 TTH (22 CTTH) 13 migraine and TTH Mean age 12.5 ± 2.5 years	-MIDAS	S: 3 C: 0 O: 2 T: 5	All primary headaches had a considerable impact on daily activities. The proportion of patients with moderate to severe disability was broadly similar between those with migraine and TTH. Patients with CTTH had greater disability, related to reduced productivity at school or home, followed in order by migraine and ETTH patients.
33	Branch (2009)	Clinic 108 migraine 218 TTH	-MIDAS	S: 2 C: 0 O: 2 T: 4	Migraineurs were markedly more disabled than patients with TTH, with MIDAS scores correlating significantly with a history of traumatic life event.
73	Solomon et al. (1993)	Clinic 135 migraine 96 TTH 13 CH Mean age 42.0 ± 12.7 years	-MOS Short Form Health Survey	S: 4 C: 0 O: 1 T: 5	Patients with headache had significantly worse mental health and physical, social and role functioning compared to normative data from the MOS. Functioning was markedly impaired compared to major chronic medical conditions such as arthritis and diabetes.
76	Palermo et al. (2007)	Clinic 27 migraine 22 CDH Mean age 13.5 ± 1.6 years	-RCADS -CALI -FAD -ARCS -PADM	S: 2 C: 0 O: 2 T: 4	Reduced behavioral autonomy and less healthy family functioning are associated with increased headache-related disability.
85	Jacobson et al. (1995)	Clinic 17 migraine 1 ETTH 6 CTTH 12 migraine and TTH 3 ECH 1 CCH Mean age 40 ± 13 years	-HDI	S: 3 C: 0 O: 2 T: 5	Disability associated with headache is related to headache severity but not headache frequency. Migraine was perceived as more severe and limiting than CTTH.
91	Dando et al. (2006)	Clinic 100 migraine 218 TTH Mean age 38.7 ± 13.6 years	-MIDAS	S: 3 C: 0 O: 2 T: 5	The mean MIDAS score for patients reporting headache-related disability was 23.7 (MIDAS grade IV), which indicates severe disability.

Newcastle-Ottawa Scale: S: selection; C: comparability; O: outcome; T: total.

QoL: quality of life; HRQoL: health-related quality of life; CCH: chronic cluster headache; ECH: episodic cluster headache; TTH: tension-type headache; ETTH: episodic tension-type headache; CTTH: chronic tension-type headache; CDH: chronic daily headache; CH: cluster headache; EM: episodic migraine; CM: chronic migraine; RCMAS: Revised Children’s Manifest Anxiety Scale; HIT-6: Headache Impact Test; MIDAS: Migraine Disability Assessment Scale; SF-36: Short Form 36; TAS-20: Toronto Alexithymia Scale-20; RCADS: Revised Child Anxiety and Depression Scale; MOS: Medical Outcomes Study; CALI: Child Activity Limitations Interview; STAI: State and Trait Anxiety Scale; ARCS: Adults’ Response to Children’s Symptoms; BDI: Beck Depression Inventory; FAD: The McMaster Family Assessment Device; PADM: Perspectives on Adolescent Decision-making Questionnaire; FSS: Fatigue Severity Scale; EDSS: Expanded Disability Status Scale; MSQol-54: Multiple Sclerosis Quality of Life 54; CDI: Children’s Depression Inventory; ASI: Adolescent Symptom Inventory; PedsQL: Pediatric Quality of Life Inventory version 4.0; MIGSEV: Migraine Severity Scale; QVM: Qualité de Vie et Migraine; HADS: Hospital Anxiety and Depression Scale; GDS-S: Geriatric Depression Scale-Short Form; WHO-DAS II: World Health Organization Disability Assessment Schedule; ICF: International Classification of Functioning, Disability and Health; MINI: Mini International Neuropsychiatric Interview; EDI-II: Eating Disorder Inventory; MSQ: Migraine Specific Quality of Life Questionnaire; PGWB: Psychological General Well-being schedule; SSAP: Subjective Symptom Assessment Profile; MSEP: Minor Symptom Evaluation Profile; SDS: Self-Rating Depression Scale; HANA: Headache Needs Assessment; PHQ-4: Patient Health Questionnaire 4-items; RAND-36: RAND-36 Item Health Survey questionnaire; PRIME-MD: Primary Care Evaluation for Mental Disorders; CES-D: Center for Epidemiologic Studies-Depression Scale; CSQ: Coping Strategies Questionnaire; CPEI-H: Chronic Pain Experience Instrument-Headache; MPQ-SF: McGill Pain Questionnaire-Short Form; HDI: Henry Ford Headache Disability Inventory; BAI: Beck Anxiety Inventory; PCS: Pain Catastrophizing Scale; KINDL-R: Revidierter Kinder Lebensqualitatsfragebogen score; SOPA-35: Survey of Pain Attitudes; NDI: Neck Disability Index; YSR: Youth Self-Report; ADI: Assessment of Depression Inventory; CHQ-PF50 Dutch version; Dutch version of the Child Health Questionnaire; NHP: Nottingham Health Profile; CHQQ: Comprehensive Headache-related Quality of life Questionnaire.

Abbreviations

BDI: The Beck Depression Inventory; CES-D: Center for Epidemiologic Studies-Depression Scale; CHQ-PF50 Dutch version: Dutch version of the Child Health Questionnaire; CIRS: Cumulative Illness Rating Scale; CPEI-H: Chronic Pain Experience Instrument-Headache; CSQ: Coping Strategies Questionnaire; EDI: Eating Disorder Inventory; HAMA: Hamilton Anxiety Scale; HANA: Headache Needs Assessment; HDI: Henry Ford Headache Disability Inventory; ISSL: Lipp’s Inventory of Stress Symptoms for Adults; MADRS: Montgomery and Asberg Depression Scale; MIDAS: Migraine Disability Assessment Questionnaire; MPQ-SF: McGill Pain Questionnaire-Short Form; MRQoL: Migraine-Related Quality of Life Questionnaire; MSEP: Minor Symptom Evaluation Profile; MSQ: Migraine Specific Quality of Life Questionnaire; SSAP: The Subjective Symptom Assessment Profile; MSQ v.2.1: Migraine Specific Quality of Life Questionnaire version 2.1; NDI: Neck Disability Index; PGWB: Psychological General Well-being schedule; PRI = Pain Response Inventory; QVM: Qualité de Vie et Migraine; PCS: Pain Catastrophizing Scale; PRIME-MD: Primary Care Evaluation for Mental Disorders; HAMD: The Higher Hamilton Depression Rating Scale; HADS: Hospital Anxiety and Depression Scale; KINDL-R: Revidierter Kinder Lebensqualitatsfragebogen score; MINI: The Mini International Neuropsychiatric Interview; QLH-Y: The Quality of Life Headache-Youth; NHP: Nottingham Health Profile; VAS: Visual Analog Scale; PedsQL 4.0: The Pediatric Quality of Life Inventory version 4.0; STAI: State and Trait Anxiety Scale; QWB: The Quality Well-being scale; RAND-36: RAND-36 Item Health Survey questionnaire; GDS-S: Geriatric Depression Scale-Short Form; SOPA-35: Survey of Pain Attitudes; PAQ: Patient Assessment Questionnaire; SF-20: Short Form 20-item Health Survey; MIGSEV: Migraine Severity Scale; CSEI: Coopersmith Self-Esteem Inventory; SDS: Self-Rating Depression Scale; BAI: Beck Anxiety Inventory; HIT-6: Headache Impact Test; SF-36: Short Form 36-item Health Survey; CFH: Chronic frequent headache; IH: intermittent headache; MDD: major depressive disorder; EM: episodic migraine; CM: chronic migraine; ETTH: episodic tension-type headache; CTTH: chronic tension-type headache; CH: cluster headache; ECH: episodic cluster headache; CCH: chronic cluster headache; CDH: chronic daily headache; PHQ: Patient Health Questionnaire 4-items; BHS: Brief Headache Screen; PHQ-9: Patient Health Questionnaire Depression Scale; GAD-7: Generalized Anxiety Disorder 7-item Scale; WHO-DAS II: World Health Organization Disability Assessment Schedule; EFI: Ecocultural Family Interview; RIIR: Recurrent Illness Impact Recording; ICF: International Classification of Functioning, Disability and Health; ASI-4: Adolescent Symptom Inventory; CDI: Children’s Depression Inventory; HDHCQ: Headache Disability and Health Care Questionnaire; CPCI: Chronic Pain Coping Inventory; MOS: Medical Outcomes Study; RCADS: Revised Child Anxiety and Depression Scale; CALI: Child Activity Limitations Interview; FAD: The McMaster Family Assessment Device; ARCS: Adults’ Response to Children’s Symptoms; PADM: Perspectives on Adolescent Decision-making Questionnaire.

Comparing the different forms of CH, there was no significant difference in HRQoL between ECH patients during a bout and CCH patients (51, 79). During the remission period of ECH patients, their HRQoL score tended to improve and became similar to headache-free groups (39). Conversely, Jürgens et al. (2010) (80) found that disability remained high in ECH patients outside the bout, despite the absence of pain, which they speculate may have arisen due to the lack of a specified time frame in the questionnaire used (HDI). Thus patients may have actually completed the questionnaire with their past bout in mind, rather than in their current headache-free condition. However, 13% of patients in another study also reported inhibition outside the cluster bout (81), therefore raising the possibility that there is indeed a degree of impairment that continues beyond the cluster bout that could be attributed to unpredictability of the next bout, though further studies are required to confirm this.

Evaluation of the functional impact of CH showed that 74% were severely affected (HIT-6 grade IV disability) (36), with 78% reporting restrictions in daily living and 96% having to make some form of lifestyle change (81). Social and leisure activities, family life and housework were disrupted, with a high dependence placed on family and friends. In terms of paid work, 82% reported reduced ability to work, 16% lost their job and 8% had to retire early because of their headaches. Moreover, up to a third found that the disorder limited their career (80,81). Taking into account this significant disability and the pain severity, it is therefore not surprising that agoraphobic and depressive symptoms, and suicidal tendencies are more prevalent in CCH (36,80), with 33% reporting agoraphobia, 56% reporting depression and 22% having suicidal tendencies (36,80).

CDH

CDH is not a specific headache entity but is a term often used to describe any headaches that occur on 15 or more days per month, for at least three months. The most common types of CDH are chronic migraine (CM) and CTTH (5). Twenty-three studies were identified that evaluated HRQoL in CDH (12,36,45,51,52,72,76,77,78,80 –85).

These studies demonstrate that patients with CDH have poorer HRQoL compared to the general population and patients suffering from severe episodic headache disorders (12,20,21,48 –50,83). Studies using the SF-36 scale reported that mental health was markedly impaired, with reports of feeling irritated, fed up, frustrated and a tendency to give up (83). Role physical, social functioning, role emotional, general health and vitality domains in CM were significantly reduced compared to EM, with higher levels of depressive symptomatology exhibited (48). Three studies used the MSQ scale to compare EM and CM and two of three studies reported a decrease of more than six points in all domains (20,21). This impaired functioning correlates with the greater disability reported in CDH compared to their episodic counterpart, with reduced productivity at school and home (20,52,59). Headache frequency and comorbid depression has been found to have an independent and additive influence on HRQoL in CDH (50).

HRQoL across headache diagnoses

Sixteen studies compared HRQoL between primary headache types as shown in Table 4. These studies showed no significant differences in HRQoL between migraine and TTH (43,72,84,85), suggesting that the greater pain intensity of EM is counterbalanced with the greater frequency of CTTH (84). Although there is little variation in HRQoL between these headache groups, migraineurs report greater disability due to their headaches compared to TTH (19,31 –33,40), especially in work or school functioning (37). More missed days at school or work were reported by migraineurs, whereas reduced productivity at school or work was more prevalent among TTH patients (38,59,82,84).

Solomon and colleagues (1994) used the SF health survey and found that CH patients had significantly worse pain scores with limited social functioning compared to the other groups, although physical functioning was preserved. On the other hand, migraineurs had the least pain with greatest impairment in role functioning. Meanwhile patients with CTTH had reduced mental health scores with a generalized impairment in functioning (78). Furthermore, although HRQoL is lower in patients with CH compared to healthy controls, in comparison to migraineurs, their HRQoL is lower in two SF-36 domains only; bodily pain and social functioning (39). Nonetheless CCH patients and ECH patients in a bout were found to be more disabled and incapacitated than migraineurs (80).

Factors that may influence HRQoL

Understanding the factors that influences HRQoL may enable us to manage and improve patients’ symptoms and subsequently their HRQoL. Headache characteristics such as pain intensity (19,24,28,32,35,55,57,63), duration (75,90) and (32,90) frequency (29,32,35,42,50,59,60,75) were found to be significant predictors of HRQoL. Likewise, presence of migrainous symptoms, particularly nausea, were also found to be important predictors in HRQoL (16,36,47,51,58), whereas combined photophobia and phonophobia are predictors of missed activity due to a headache (54). Greater headache-related disability was also a significant predictor of poor HRQoL (15). Comorbidity with other pain conditions negatively influences HRQoL (30,91). Furthermore, the patients’ psychological response to the pain experience and their coping mechanism has a great influence on HRQoL, and potentially may have a role in headache progression (13,35,75). Psychiatric comorbidity is associated with poorer HRQoL, with comorbid depression shown to have an independent and additive influence on headache-related disability (50). In CH, impairment worsened with increasing clinical severity and refractoriness of the headaches (80). However, it is important to note that even though all these factors can affect HRQoL, there is a marked individual impact, thus each patient will respond uniquely to these predicted factors.

Discussion

This review summarizes the results of 80 papers on HRQoL of the major primary headache disorders, namely migraine, TTH, CH and CDH. Most of the studies have focused on patients with migraine, with comparatively fewer studies performed on TTH and even less so on CH. Several studies conducted on migraineurs were deemed to be of good quality, with the remaining studies being mostly of moderate quality. In comparison, studies conducted on the other headache disorders were mainly of moderate quality only. Primary headache disorders and their effect on one’s ability to function in school, work or daily life in general, impose a burden not only on the sufferers’ themselves, but also on society, notably in terms of economic productivity and health care costs. Absenteeism and reduced work productivity, together with family and social restraints, can lead to disruptions in occupational and personal domains, potentially creating a vicious cycle with worsening of headache, thus increasing its negative impact on HRQoL.

This review found that patients with primary headache disorders have consistently diminished HRQoL across all headache categories, either compared with matched non-headache controls, or other chronic disorders. However, the degree and affected domains vary according to the headache type, frequency, associated symptoms and comorbidities. We also identified various factors that are associated with, and are likely to be predictors of, reduced HRQoL in headache sufferers.

The reduced HRQoL among migraineurs is a major concern, both because of its high prevalence in the general population and its prominent disabling nature, which can have a substantial economic impact (38,92 –94). The greatest impairment reported was in role and social functioning, with reduced work productivity and absenteeism among migraineurs being well reported. Moreover, headache-related disability extends to household and family and social functioning, which can lead to disruption in social and family relationships.

With regards to TTH, although ETTH is the most prevalent headache disorder in the general population, most of the studies have focused on HRQoL in CTTH. This may be because the pain in ETTH is usually infrequent and mild, thus it is less likely to cause significant impairment. Even so, these studies indicate that TTH has a major impact on HRQoL, with a generalized impairment in functioning. HRQoL is significantly worse relative to healthy controls, and also relative to episodic migraine sufferers on some HRQoL domains. However, compared to migraineurs, patients with TTH report fewer missed days at school or work.

CH patients had reduced scores in most domains of the SF-36 scale and all domains of the MSQ scale compared to controls and patients outside a bout. Headache-related disability remained high even outside the cluster bout, with considerable impact on social and family life, having to frequently miss social events and family gatherings. Surprisingly, the effect of CH on HRQoL is less marked compared to migraineurs, though this should be treated with caution, as the sample sizes of these studies were small. Moreover, the lack of a specific CH HRQoL measure that can truly capture the inherent disabling and debilitating nature of this disorder may also account for the results seen. Nevertheless, this review found that their HRQoL is much more impaired compared to the general population. However, unlike migraine, this became comparable to healthy controls during remission periods (51).

Meanwhile, studies on CDH have mostly focused on CM and CTTH. To our knowledge, HRQoL in hemicrania continua and new daily persistent headache has not been assessed. There is significantly reduced HRQoL in patients with CDH compared to healthy controls and its episodic variant, suggesting that chronicity of the headache may contribute greatly to HRQoL.

Indeed, the frequency, duration and intensity of the headaches were found to be significant predictors of HRQoL. Moreover, a large proportion of the studies reviewed showed a high prevalence of anxiety and/or depressive symptoms in patients with primary headache disorders. A bidirectional association has been reported between first onset of migraine and major depression, and vice versa, although this relationship has not been found to extend to other types of severe headache (95). Thus, patients presenting with headaches should be evaluated for both their headache and any associated psychiatric comorbidity.

Review of the literature revealed that the majority of studies used generic HRQoL instruments. Although disease-specific instruments have been used to evaluate HRQoL in clinical trials, there were limited numbers in this review. This could be due to the exclusion of studies that tested the efficacy of medications. We were unable to interpret the data from these two measures separately as the general HRQoL measures may have been influenced by other comorbidities other than headaches, which were not specifically assessed in the studies. However, in general, studies showed there was moderate correlation (r > 0.4) between the generic and headache-specific HRQoL scales, indicating that there are measuring the same underlying construct i.e. HRQoL (69).

Some limitations that need to be considered with our interpretation are the greater number of studies with clinic population samples compared to community. Most of these were carried out in headache clinics, where patients seen were more likely to have severe and treatment-refractory headaches, which may have a greater impact on HRQoL. However similar findings were seen within the community sample. Secondly, studies on TTH and CH tended to have smaller sample sizes, which make comparisons across headache diagnosis difficult.

In conclusion, different types of headache affect different HRQoL domains. However, once it becomes chronic, the overall HRQoL significantly declines. Furthermore, there is an increased prevalence of psychological comorbidity in headache disorders that affects HRQoL and thus needs to be recognized. This highlights the importance of increasing clinical awareness, in an attempt to better manage these headaches earlier in its course, thereby preventing its transformation to a chronic variant. Although to date there have been a number of studies assessing HRQoL in headache disorders, there are several issues that require further exploration. Firstly, disease-specific HRQoL instruments have been developed only for migraine. As previously mentioned, TTH and CH have different headache characteristics compared to migraine, thus specific instruments need to be developed to truly capture the impact of these disorders. Secondly, there are only a handful of studies focusing on ETTH, which is the most common type of headache, and CH, which is considered to be one of the most painful conditions known to mankind. HRQoL and psychiatric morbidity in these disorders need to be explored further. Lastly, it is evident from the studies reviewed that any type of headache can impair HRQoL. A direct comparison of HRQoL across different headache types would be of interest in future studies.

Clinical implications

Primary headache disorders significantly diminish quality of life, with degree of impairment being dependent on headache type.

There is a high prevalence of psychological comorbidity associated with headache disorders, which affects quality of life.

Most of the studies have focused on migraine, with little attention to other types of primary headache disorders. Hence, disease-specific quality of life questionnaires have been developed only for migraine and may not be sensitive enough to capture the true effects of the other headache types. Further studies on the other headache types should be considered.

Footnotes

Funding

This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Conflict of interest

ST, NAB, GL, MT and MJ have nothing to declare. MSM serves on the advisory board for Allergan and St Jude Medical, and has received payment for the development of educational presentations from Allergan, Merck Sharpe and Dohme Ltd and Medtronic.

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Quality of life in primary headache disorders: A review

Abstract

Background

Objective

Methods

Results

Conclusion

Keywords

Introduction

Methods

Search strategies and data sources

Results

HRQoL by headache diagnoses

Migraine

TTH

CH

CDH

HRQoL across headache diagnoses

Factors that may influence HRQoL

Discussion

Clinical implications

Footnotes

Funding

Conflict of interest

References