Patient reported trigger,not the speed of transition to continuous headache,is associated with headache-related disability in children: Results of a cross-sectional clinic-based study

Abstract

Objective

To investigate the relationship between the evolution of continuous headache and headache-related disability in children.

Methods

This was a single site cross-sectional study using patient-entered questionnaires from children aged 6–17 who presented to neurology clinic between November 2022-May 2024 with continuous headache. Participants were categorized as sudden onset (no evolution), rapidly evolved (< 3 months), or gradually evolved (≥ 3 months) continuous headache. Analysis examined the relationship between the pattern of headache evolution and headache-related disability (PedMIDAS score), accounting for demographic, headache characteristic, and onset factors.

Results

Of 751 respondents, 42.5% reported sudden onset, 35.0% rapid evolution, and 22.5% gradual evolution to continuous headache. There was no significant difference in PedMIDAS score in children who reported sudden onset compared to children with rapid (6.9 [−2.7, 16.4], p = 0.159) or gradual evolution (10.3 [−0.8, 21.3], p = 0.068) of headache onset. Older age (3.3 per year [1.8, 4.8], p < 0.001) and patient reported trigger (17.1 [8.8, 25.5], p < 0.001) at the onset of continuous headache were both associated with greater headache-related disability, accounting for other covariates.

Conclusion

Children transitioned to continuous headache quickly, consistent with prior studies. Older children and those who associated onset of continuous headache with a trigger reported higher rates of headache-related disability.

Keywords

pediatric continuous headache migraine new daily persistent headache headache-related disability

Introduction

Continuous headache – non remitting headache which is always present – is rare and generally thought to be more resistant to treatment than primary headache disorders with intermittent headaches.¹ There is a paucity of research on continuous headache and it is not well defined as a distinct entity. The evolution of non-continuous to continuous headache has been reported to occur over years in adults,² though this transition may be much faster in children.^2,3 A few studies have investigated the differences between children and adults with chronic daily headaches (CDH; defined as headaches occurring more than 4 h per day and 15 headache days per month or more).² These prior studies have mainly looked at differences in demographical variables and headache subtypes between children and adults with CDH.^2,3,4 Prior studies have not looked at the evolution (or speed of transition) of headache in children; this factor could explain why continuous headache may be more refractory to treatment in this population.

Reidy and colleagues (2020) found high headache-related disability in children who report continuous headache with chronic migraine (CM) and new daily persistent headache (NDPH).¹ Our similar study confirmed these findings in CM, NDPH, and post-traumatic headache (PTH).⁵ Headache outcomes (defined as change in headache overall from onset) have been found to be suboptimal in both new onset continuous headache (NOH) (1-3 months) and NDPH (≥ 3 months) among children and adolescents.⁶ There have also been studies showing functional disability and greater work productivity impairment in adults with CDH.^7,8 At this time there is a gap in understanding factors in those who report continuous headache that may result in high headache-related disability. In clinical practice, many children report a possible trigger that may have resulted in their continuous headache, though this has not been studied systematically.

Despite advances in our understanding of this disabling condition, the transition to continuous headache in children remains poorly understood. Understanding this relationship between continuous headache in youth and headache-related disability may have important pathophysiologic, diagnostic, and treatment implications.

We conducted a cross-sectional analysis of patient headache intake questionnaires from children who reported continuous headache. Building upon the work by Mack (2004), our study aim was to investigate features of the evolution to continuous headache pattern in children through a large headache registry.^3,9 We specifically assessed how features of headache evolution were associated with headache-related disability, since this provides a clear measurement of how impactful headache is on daily life. We hypothesized that children with sudden onset of continuous headache would experience greater headache related disability. We also looked at the association between the presence of a trigger (e.g., concussion, viral illness) at the onset of headache and its relationship with headache-related disability. This analysis would help broaden our understanding of the relationship of the circumstances of evolution of continuous headache and headache-related disability.

Methods

Site/Ethics: This was a single site cross-sectional study conducted from patient questionnaires collected at general neurology and headache outpatient clinics affiliated with a tertiary care pediatric hospital in the United States.⁹ The institution's Institutional Review Board (IRB) approved the extraction of data from the electronic health record into a research registry, with a waiver of written informed consent and assent.

Participant selection: We included surveys from respondents aged between 6–17 years of any sex and race/ ethnicity if the following criteria were met: (1) initial questionnaire completed between November 2022 to May 2024; and (2) report of continuous headache for at least 2 weeks duration.

Patient survey data: All survey data were collected from the initial headache intake questionnaire at presentation to general neurology or headache clinic with complaint of headache. Survey data were managed by Research Electronic Data Capture (REDCap) hosted by the institution.¹⁰ Patient reported demographics and history were collected including, age (in years), sex assigned at birth, race (Asian, Black, White, or unknown/other), ethnicity (Hispanic or non-Hispanic). Additional information used in this analysis included any duration of continuous headache (non remitting without breaks in pain) as a variable (defined as <2 weeks, 2–4 weeks, 4–8 weeks, 8–12 weeks, 3–6 months, 6–12 months, 1–2 years, or >3 years), pattern of continuous headache (i.e., whether the continuous headache flared, getting better or worse, or whether it was the same, not changing in severity), overall headache severity (0–10 scale).

The patient questionnaire was used to determine headache diagnosis by the international classification of headache disorders, 3rd edition (ICHD-3) diagnostic criteria-based algorithm that was applied to participant responses.^9,11 This use of the questionnaire has been proven to increase the rate of specific ICHD-3 headache disorder diagnosis in the pediatric population.⁹ All headache diagnoses were included in the analysis. The questionnaire also included the PedMIDAS tool, an assessment of headache-related disability in children. The PedMIDAS score was calculated and included in the analysis.¹²

Primary Predictor: Participants were categorized into the following groups based on intake survey answers (chosen by patient to describe pattern to continuous headache, guided by words and pictures):⁹

No evolution defined as sudden onset from no headache or infrequent headaches

Rapid evolution defined as frequency built up to continuous in less than 3 months

Gradual evolution defined as frequency built up to continuous over 3 months or more

Specifically, within the intake form all participants were asked: “How did the pain get to this pattern where there is at least some headache all the time?” Participants selected one of the following three options:

- “No headache, then constant pain started”

- “Headaches came infrequently, then constant pain started”

- “Headaches came more and more often, then the constant pain started”

All participants with sudden onset headache had no (30.7%) or rare (69.3%) headaches prior to continuous headache onset. All participants with rapid or gradual evolution of headache had frequent headache prior to continuous headache onset.

Secondary Predictor: Reported headache trigger: none, concussion, illness/infection, onset of menses, stressful event, other. If a participant reported multiple trigger categories, they were categorized as having multiple triggers.

Outcome: To assess headache-related disability, raw PedMIDAS score was used, with 0 indicating no disability and 240 indicating maximal severe disability.¹² Some scores were >240 (e.g., reporting all days as missing school, not accounting for weekends), but these scores were kept as they likely reflect those most affected. Excluding PedMIDAS scores >240 or setting these scores to 240 did not change the outcome of the analysis.

Data analysis: All analyses were performed using custom written code in Matlab (Mathworks, Natrick, MA), which is publicly available.¹³ Missing data rates (reported in Figure 1 and Table 1) were low (<5%) so no additional strategies were used to account for data missingness. Headache evolution (sudden onset, rapid evolution, or gradual evolution) was the primary predictor, and the PedMIDAS score was the primary outcome. All covariates are listed above in data collection. For statistical analysis, race was collapsed to Asian, Black, White, and other/unknown due to the small size of other groups. Duration of continuous headache was converted to the median weeks per duration range (e.g., 6 to 12 months became 36 weeks). Triggers were treated as a categorical variable with the following possible categories (none, concussion, illness/infection, onset of menses, stressful event, other, multiple). If a participant reported multiple triggers, they were not included in the individual trigger category. We pursued univariate robust linear regression analysis to examine the relationship between PedMIDAS score and the primary predictor of headache evolution to continuous. Robust linear regression was used due to a skew in the PedMIDAS score distribution, and results are reported as the difference in PedMIDAS score with the 95% Confidence Interval (95%CI). Univariate linear regression analysis was conducted between PedMIDAS score and each covariate. Univariate analysis was also conducted to assess the relationship between the primary predictor (headache evolution) and other covariates with Chi squared values (for categorical data) or Kruskal Wallis (for comparison of categorical and non-normal nominal variables). Covariates were assessed for collinearity by calculating the Variance Inflation Factor using dummy coding, which was <5 for all comparisons. Multivariable regression analysis adjusting for all other covariates was pursued, which were all included in the final model as they are key demographic and clinically relevant headache features and/or have shown a relationship with headache-related disability in prior work.^14,15 Significance was defined as p < 0.05.

Figure 1.

Flowchart demonstrating survey selection process. Of those who met criteria for continuous headache and age and data collection dates, 4.6% (36/787) were excluded due to insufficient data.

Table 1.

Demographics and headache characteristics by pattern of continuous headache onset. PA = Pennsylvania, HA = headache, Cont. = Continuous, Evo. = evolution, wk = weeks, IQR = interquartile range. *1 participant identified as American Indian, 60 participants identified as unknown race.

	PA census data 2020 (%)	All (n = 751)	Sudden Onset (n = 319)	Rapid Evo. (n = 263)	Gradual Evo. (n = 169)	Statistics
Age (yrs) Median [IQR] No missing data		14.9 [12.6, 16.4]	14.7 [12.3, 16.3]	14.8 [12.6, 16.2]	15.4 [12.8, 16.7]	H = 6.77, p = 0.034
Sex F (%) No missing data		582 (79.2)	232 (74.0)	212 (85.0)	138 (80.7)	$χ^{2}$ = 7.30, p = 0.026
Race* (%)						$χ^{2}$ = 4.73, p = 0.579
Asian	3.9	26 (3.5)	11 (3.4)	11 (4.2)	4 (2.4)
Black	10.9	120 (16.0)	55 (17.2)	44 (16.7)	21 (12.4)
Other/unknown	-	126 (16.8)	55 (17.2)	46 (17.5)	25 (14.8)
White 8 (1.1) missing data	75	471 (62.7)	195 (60.1)	159 (60.4)	117 (69.2)
Ethnicity (%)						$χ^{2}$ = 0.87, p = 0.647
Hispanic	8.1	78 (10.4)	30 (9.4)	31 (11.8)	17 (10.1)
Non-Hispanic 4 (0.5) missing data	91.9	669 (89.1)	286 (89.7)	231 (87.8)	152 (89.9)
HA Severity Median [IQR] 2 (0.3) missing data		6 [4, 7]	6 [5, 7]	7 [5, 8]	6 [4, 7]	H = 11.01, p = 0.004
Cont. HA duration (wk) No missing data per incl.criteria		18 [6, 72]	18 [6, 72]	18 [3, 36]	72 [18, 120]	$χ^{2}$ = 54.36, p < 0.001
HA pattern						$χ^{2}$ = 5.12, p = 0.078
Varying intensity		656 (87.4)	272 (85.3)	228 (86.7)	156 (92.3)
Same No missing data		95 (12.7)	47 (14.7)	35 (13.3)	13 (7.7)
Trigger (%)						$χ^{2}$ = 13.87, p = 0.309
None		418 (55.7)	173 (54.2)	147 (55.9)	98 (58.0)
Concussion		76 (10.1)	40 (12.5)	27 (10.3)	9 (5.3)
Illness/infection		21 (2.8)	10 (3.1)	9 (3.4)	2 (1.2)
Onset of menses		19 (2.5)	5 (1.6)	7 (2.7)	7 (4.1)
Stressful event		54 (7.2)	21 (6.6)	17 (6.5)	16 (9.5)
Other		102 (13.6)	43 (13.5)	33 (12.5)	26 (15.4)
Multiple No missing data		61 (8.1)	27 (8.5)	23 (8.7)	11 (6.5)
PedMIDAS score median [IQR] 28 (3.7) missing data		43 [19, 97]	37 [17, 82]	45 [22, 100]	48 [24, 115]	See Table 2

Manuscript draft: We used the STROBE reporting guideline¹⁶ to draft this manuscript, and the STROBE reporting checklist¹⁷ when editing, included in supplement A.

Results

The headache registry included 3210 intake headache questionnaires collected from general neurology and headache clinics between November 2022 to May 2024 (Figure 1). Of the queried participant questionnaires, 751 participants met inclusion criteria and were included in the final analysis (Figure 1).

Median age was 14.9 [Interquartile Range (IQR) 12.6, 16.4], 79.2% were female, and race and ethnicity demographics matched that of the catchment area (Table 1).¹⁸ Of the total respondents at the initial presentation of our clinic, 46.7% met ICHD-3 criteria for migraine or probable migraine, 1.5% tension-type headache (TTH), 3.9% trigeminal autonomic cephalalgia (TAC), 20.1% NDPH, 12.0% new onset headache (abrupt onset headache like NDPH but <3mo duration), 13.9% post traumatic headache (PTH), and 2.0% did not meet criteria for any of these ICHD-3 diagnoses. Almost half (44.3%) of respondents associated the onset of their continuous headache with a trigger. Most common single named triggers included concussion and stressful life events (Figure 2).

Figure 2.

Respondents’ reported triggers associated with the onset of continuous headache.

Most respondents reported a fast transition of headaches to continuous, with 42.5% reporting a sudden onset, and 35.0% reported rapid evolution (occurring in less than 3 months), with the remaining 22.5% reporting gradual evolution (greater than 3 months) (Figure 3). Those with sudden onset or rapid evolution to continuous headache presented to care earlier (median 18 weeks for rapid evolution and sudden onset, compared with 72 weeks for gradual evolution, $χ^{2}$ = 54.36, p < 0.001; Table 1). There were no significant differences in the transition to continuous headache across race and ethnicity (p > 0.05). The proportion of females in the sudden onset group was greater than other groups ( $χ^{2}$ = 7.30, p = 0.026). Older age was observed in the gradual evolution group (H = 6.77, p = 0.034). There were no differences between the three groups in triggers associated with transition to continuous headache ( $χ^{2}$ = 13.87, p = 0.309), nor headache pattern (varying intensity vs. the same/unchanging, $χ^{2}$ = 5.12, p = 0.078). Overall headache severity was greater in the rapid evolution group (H = 11.01, p = 0.004).

Figure 3.

(A) Proportion of participant reported pattern of evolution of headache to continuous headache; (B) Proportion of participant reported pattern of evolution of headache within a particular time frame.

On univariate analysis, headache-related disability was associated with the pattern of headache evolution to continuous: those with gradual evolution to continuous headache had greater headache-related disability compared to those with sudden onset headache (15.5 [ 5.2, 25.9], p = 0.003). There was no significant difference in headache-related disability between those with rapid evolution headache and sudden onset headache (8.1[−0.9, 17.3], p = 0.068). Those who were older (4.0 per year of age [2.7, 5.4], p < 0.001) and reported an associated trigger (18.2 [10.2, 26.1], p < 0.001) had greater headache-related disability. Males reported lower headache-related disability compared to females (−16.3 [−25.9, −6.6], p = 0.001), and those who identified as Black reported lower headache-related disability compared to those who identified as White (−17.5 [−28.8, −6.3], p = 0.002).

The multivariable linear regression model included our primary predictor and outcome, headache evolution and PedMIDAS, as well as all covariates tested in univariate analysis. Adjusting for these covariates resulted in the final model (Table 2; Figure 4). In the final model, there was no significance association between PedMIDAS score and pattern to continuous headache (compared to those with sudden onset of continuous headache: rapid evolution: 6.9[−2.7,16.4], p = 0.159; gradual evolution: 10.3[−.08, 21.3], p = 0.068). Those who identified as Black (−14.3 [−25.8, −2.7], p = 0.016) reported lower headache-related disability compared to those who identified as White, accounting for other covariates. Older age (3.3 per year of age [1.8, 4.8], p < 0.001) and the presence of a trigger at the onset of continuous headache (17.1 [8.8, 25.5], p < 0.001) were both associated with greater headache-related disability, accounting for other covariates. A 17-point increase in the PedMIDAS with having a reported trigger corresponds to a difference of nearly 6 days per month with headache-related disability, indicating a clinically significant effect. Given that concussion was the most common trigger (n = 76), we conducted a sub-analysis that excluded those who reported concussion as a trigger and this relationship remained. This indicates that the association between headache-related disability and associating a trigger with the onset of continuous headache was not solely due to concussion.

Figure 4.

Adjusted model including the primary predictor (headache evolution), primary outcome (headache-related disability, PedMIDAS) and all pre-determined covariates.

Table 2.

The relationship between headache evolution and PedMIDAS. Robust univariate linear regression unadjusted for covariates. The final adjusted model was robust multivariate linear regression including the primary predictor and all covariates to predict PedMIDAS scores. Significance was defined as p < 0.05. HA = headache, Cont. = Continuous, Evo. = evolution, wk = weeks, cat. = category, incr. = increase, Ref = reference. *28 participants (3.7%) did not have PedMIDAS scores.

PedMIDAS	Unadjusted	Adjusted
HA evolution
Rapid	8.1 [−0.9, 17.3], p = 0.078	6.9 [−2.7, 16.4], p = 0.159
Gradual Ref. sudden onset	15.5 [5.2, 25.9], p = 0.003	10.3 [−0.8, 21.3], p = 0.068
Age (yrs)	4.0 [2.7, 5.4], p < 0.001	3.3 [1.8, 4.8], p < 0.001
Sex Ref. Female	−16.3 [−25.9, −6.6], p = 0.001	−6.7 [−17.2, 3.8], p = 0.212
Race
Asian	−16.5 [−39.0, 6.1], p = 0.153	−18.5 [−41.7, 4.7], p = 0.119
Black	−17.5 [−28.8, −6.3], p = 0.002	−14.3 [−25.8, −2.7], p = 0.016
Other/Unknown Ref. White	−7.3 [−18.3, 3.8], p = 0.197	−3.8 [−15.6, 8.1], p = 0.533
Ethnicity Hispanic Ref. Non-Hispanic	−12.4 [−25.7, 0.97], p = 0.070	−8.7 [−23.2, 5.8], p = 0.241
HA Severity (per point incr.)	0.5 [−1.4, 2.4], p = 0.584	0.8 [−1.2, 2.7], p = 0.429
Cont. HA duration (per cat. Incr.)	0.0 [−0.0, 0.1], p = 0.371	−0.0 [−0.1, 0.1], p = 0.704
HA pattern - same Ref. Variable intensity	−10.8 [−22.9, 1.3], p = 0.081	−5.6 [−18.3, 7.2], p = 0.394
Trigger Ref. no trigger	18.2 [10.2, 26.1], p < 0.001	17.1 [8.8, 25.5], p < 0.001

Discussion

Our study examined the transition of non-continuous to continuous headache in children, triggers that were associated with the start of a continuous headache, and how these factors are associated with headache-related disability. Our findings indicate that children report transitioning from non-continuous to continuous headache more quickly than adults, which confirms the findings from Mack's 2004 study.³ We built upon Mack's (2004) findings, examining a larger sample size and greater range in headache diagnoses.³ Our study is the first that examined headache-related disability among children with continuous headache as a function of headache onset. We found that headache-related disability did not significantly vary whether the onset of continuous headache was sudden, evolved rapidly within three months, or evolved more gradually. Notably, we found that disability was markedly greater if the onset of continuous headache was associated with a trigger by an estimated 17.1 points, accounting for other variables. This equates to 6 additional days per month with functional disability in school and/or extracurricular activities. Taken together, this indicates that the pattern of evolution of headache (how suddenly the headache presents) may be less important, and whether the headache onset was associated with a trigger may be more important, in understanding headache-related disability.

Our findings also demonstrated that those who identified as Black reported lower headache-related disability as compared to those who identified as White. Given that race is a social and cultural construct that does not hold a biological meaning, this finding is likely multifactorial, resulting from multiple structural, societal, and cultural factors that are not fully captured by our study. We also observed a similar, though non-significant, trend with those who identified as Asian however this was a small sample size.

Continuous headache is associated with high headache-related disability

Disability rates were high in our sample overall. This is consistent with work by Reidy and colleagues (2020), and confirmed by our group (2023), describing high headache-related disability in children who report continuous headache with an ICHD-3 diagnosis of CM or NDPH.^1,5 Similar findings have been observed in adult studies that found that frequent headaches have been associated with a higher likelihood of employment disability.¹⁹ Shapiro and colleagues (2023) have suggested that headache-related disability can have great economic implications as a result.¹⁹ Early identification and treatment of continuous headache may mitigate disability. A recent pilot study by Gibler and colleagues (2024) show favorable clinical outcomes within 3-4 months in children with continuous headaches when receiving a multidisciplinary biopsychosocial treatment.²⁰ This preliminary data is suggestive that more immediate treatment can be of benefit to children with continuous headache. This is important to note since our study, along with Mack's 2004 study, show that continuous headaches occur more quickly in children.³ It should also be noted however, that the headache diagnosis may have implications on headache outcome. Particularly, it has recently been found that despite treatment, NOH or NDPH have suboptimal outcomes in children and adolescents.⁶ In their study, Szperka and colleagues (2024) found that only 6 or 7 out of 10 children and adolescent patients experience some degree of incremental improvement in their headache by one year.⁶

Altogether, we hypothesize that identifying this population earlier can allow for more immediate treatment, thereby allowing for more favorable outcomes within months depending on the headache diagnosis.

Patient reported trigger is associated with headache-related disability

A major goal of our study was to explore the relationship between headache-related disability and features of headache onset across a wide range of ICHD-3 diagnosis. The understanding of this relationship is important to tailor headache management. In our study, we found that headache-related disability was higher in patients who reported the presence of a trigger at the onset of their continuous headache. Interestingly, the most common reported triggers in our study were stressful life event and concussion (Figure 2). It should be noted however, that stress, coping styles and mood, which could have an influence on the observed association, were not collected as part of the study. If this association is true, it is important to acknowledge that perhaps there may be pathophysiological differences of those who report a trigger at the onset of their continuous headache. For instance, a stressful life event, illness/infection or concussion may involve a difference in an individual's physiological stress response. There have been a few studies that have examined cortisol levels in youth in response to particular events such as concussion, septic shock or life stressors.^21,22,23 In sport related concussion, it has been shown that there is an association of low cortisol with prolonged recovery suggestive of a disruption of hypothalamic-pituitary-adrenal (HPA) axis.²¹ On the contrary, increased cortisol levels have shown to be strongly correlated with illness severity in youth with septic shock.²² In a study done to analyze cortisol levels and perception of stress level when faced with a stressful life event, it was found that there was no relationship between cortisol levels and perception of stressful life event.²³ This is suggestive that multiple biopsychosocial factors may mediate the relationship between a recognized trigger and disability.

Stress has previously been reported as a trigger for headaches in youth by Kemper and colleagues (2015).²⁴ We speculate that there may perhaps be a psychological perceptual difference among young individuals who experience continuous headache which is playing an important role in headache-related disability. For instance, associating the onset of a continuous headache with a trigger may alter the patient's expectation that the headache should be effectively treated with the identification of the trigger. It may also be a difference in behavioral response – if the headache started in the setting of illness, the child may be waiting to return to school until the headache has resolved, presuming that the illness is ongoing. Finally, since a patient reported trigger was reported retrospectively in this study, it could be that patients with higher disability were more likely to report any aberration in the pattern of life events, whereas those with lower disability were less likely to do so. It could be that some people retrospectively anchor to a trigger that they believe caused their headaches. Perhaps this misperceived anchoring may be preventing improvement in symptoms.

Additional studies that assess both the biology and psychosocial factors as they affect headache-related disability are needed to determine this complex interplay.

Growing interest in understanding continuous headache

Continuous headache requires further study to improve our understanding of this often-disabling condition. However, the literature on this topic is growing and to date has highlighted the uniqueness of continuous headache and attempted to clarify the condition. Hershey and colleagues (2001) characterized CDH as a function of reported headache frequency.¹⁴ They found that overall children with CDH reported features that closely matched migraine disease.

This is in alignment with Bigal and colleagues’ (2004) study that found that transformed migraine (defined as the progression of episodic migraine to chronic migraine), a subgroup of CDH, accounts for the majority (69%) of CDH in adolescents.² Looking more specifically at the frequency of headaches in Hershey and colleagues’ study (2001), it was also noted that children with continuous daily headache also report differences in pain quality and longer duration in headaches compared to those with daily episodic headache suggesting a possible difference in adaptation in pain or coping mechanism among groups.¹⁴ The differences in pain quality and duration noted in children with continuous headaches in this study highlight the uniqueness of continuous headache in this population. Koenig and colleague's (2002) study also examined whether episodic and daily headaches were different conditions in children who presented to tertiary headache clinics.¹⁵ Their study concluded that children with CDH have a single headache disorder that can worsen and include migraine-like features rather than having two distinct primary headache disorders (e.g., CDH and episodic migraine headaches). A more recent study from our group using the same headache data registry found that children with continuous headache report similar clinical features whether their headache onset is consistent with CM, PTH or NDPH.^5,6 This indicates that the phenotypic profiles of continuous headache do not substantially vary across these three ICHD-3 headache diagnoses. Separately we reported that the outcomes of abrupt-onset continuous headache of 1–3 months duration were not different from those with NDPH meeting full ICHD-3 criteria with continuous headache ≥3 months duration⁶; though we have not yet examined other subgroups of CDH, this raises the question of whether we should adjust the cutoff of “chronic” from 3 months duration to 1 month. Altogether, the above studies highlight the gaps in understanding of continuous headache in youth. Clarifying the condition and how it affects youth may bring about optimal treatment and mitigate disability among this population.

Limitations

Limitations in the design of this cross-sectional study should be noted. Firstly, generalizability of our study is limited to the patient population and catchment area of this single institution. Since this study focused on patients who were presenting to general neurology and headache clinics, selection and access bias are likely at play. Secondly, our study is based on patient/parent responses. Responses to questions involving patient/ parent recall, such as ones involved in the PedMIDAS tool, may lead to recall bias. Furthermore, there is a possibility that patient/parent responses could be interpreted differently thus resulting in inaccurate applied ICHD-3 based diagnoses or the presence of continuous headache. We have found in previous studies from this headache registry that approximately 1/6^th of youth who report continuous headaches have some breaks in their pain.⁵ Prospective studies are needed to confirm our findings, and account for these biases.

Conclusion

In summary, our data indicate that children report transitioning from non-continuous to continuous headache more quickly than adults, confirming prior work.² Furthermore, our findings show that disability was greater if the onset of continuous headache was associated with a trigger. Further work is needed to determine the complex biopsychosocial interplay between circumstances of onset of continuous headache and headache-related disability.

Article highlights

Consistent with prior work, our study indicates that the transition from non-continuous to continuous headaches in children occurs more quickly than adults.

There were no significant differences in headache-related disability for children who had a sudden onset headache compared to children who had a rapid or gradual evolution of headache to continuous.

Headache-related disability was greater if the onset of continuous headache was associated with a trigger.

Footnotes

Acknowledgements

Not applicable.

ORCID iDs

Rachel Sehgal

Christina L. Szperka

Carlyn Patterson Gentile

Ethical considerations

The institution's Institutional Review Board (IRB) approved the extraction of data from the electronic health record into a research registry.

Consent to participate

The study was given a waiver from obtaining written informed consent or assent.

Consent for publication

All the authors (Rachel Sehgal MD MS, Christina L. Szperka MD MSCE, Andrew D. Hershey MD PhD, and Carlyn Patterson Gentile MD PhD) agreed to submit this manuscript to Cephalalgia

Author contributions

All authors, including myself, have made significant contributions with the conceptualization, investigation, visualization, writing -original draft, writing-review and final edit of the manuscript and agree to the authorship list.

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the National Institute of Neurological Disorders and Stroke of the National Institutes of Health K23NS124986 (to C.P.G). The database used was developed under the Pfizer Grant for Learning & Change, awarded to Dr Szperka in 2014.

Declaration of conflicting interests

No conflict – R.S.

Data availability statement

Data availability is restricted due to ethical and privacy regulations. Access may be provided upon reasonable request with approval of the CHOP IRB.

Commercial relationships disclosures

C.L.S.: Dr Szperka has received research/grant support from PCORI. Dr Szperka or her institution have received compensation for her consulting work for Abbvie; Eli Lilly; Lundbeck; Teva Pharmaceutical Industries Ltd; and Upsher-Smith Laboratories, LLC.

ADH.: Dr Hershey or his institution have received compensation for serving as a consultant for AbbVie, Amgen, Biohaven, Eli Lilly, Lundbeck, Supernus, Teva, Theranica and Upsher-Smith. His institution has also received research support from Amgen, Biohaven, Eli Lilly, Theranica, Upsher-Smith, and the NIH NINDS/NICHDS.

C.P.G.: Dr Patterson Gentile is currently funded by the National Institutes of Health/National Institute of Neurological Disorders and Stroke (K23 NS124986).

Open practices

Not applicable.

Supplemental material

Supplemental material for this article is available online.

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