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CC BY 4.0 · Arq Neuropsiquiatr 2023; 81(08): 740-747
DOI: 10.1055/s-0043-1771175
Original Article

Brazilian headache registry: methods and preliminary data of the pilot study

Registro brasileiro de cefaleia: métodos e dados preliminares do estudo piloto
Vanise Grassi 
1   Hospital Moinhos de Vento, Porto Alegre RS, Brazil.
2   Fundação Universidade Federal de Ciências da Saúde de Porto Alegre, Porto Alegre RS, Brazil.
3   Hospital São Lucas da PUCRS, Porto Alegre RS, Brazil.
,
Mauro Eduardo Jurno 
4   Fundação José Bonifácio Lafayette de Andrada, Barbacena MG, Brazil.
5   Fundação Hospitalar do Estado de Minas Gerais, Barbacena MG, Brazil.
,
Alan Christmann Fröhlich 
6   Serviço de Neurologia e Neurocirurgia de Passo Fundo, Passo Fundo RS, Brazil.
,
Carlos Roberto de Mello Rieder 
2   Fundação Universidade Federal de Ciências da Saúde de Porto Alegre, Porto Alegre RS, Brazil.
,
Elder Machado Sarmento 
7   Universidade Federal Fluminense, Rio de Janeiro RJ, Brazil.
,
Júlia Kássia Pereira 
4   Fundação José Bonifácio Lafayette de Andrada, Barbacena MG, Brazil.
,
Leonardo Lima Silva 
2   Fundação Universidade Federal de Ciências da Saúde de Porto Alegre, Porto Alegre RS, Brazil.
,
Liselotte Menke Barea 
2   Fundação Universidade Federal de Ciências da Saúde de Porto Alegre, Porto Alegre RS, Brazil.
,
Luiz Ernesto Besen Poli 
2   Fundação Universidade Federal de Ciências da Saúde de Porto Alegre, Porto Alegre RS, Brazil.
,
Luiz Paulo Queiroz 
8   Universidade Federal de Santa Catarina, Florianópolis SC, Brazil.
,
Marcelo Cedrinho Ciciarelli 
9   Faculdade de Medicina, Centro Universitário Barão de Mauá, Ribeirão Preto SP, Brazil.
,
Mario Fernando Prieto Peres 
10   Hospital Israelita Albert Einstein, São Paulo SP, Brazil.
,
Pedro Augusto Sampaio Rocha Filho 
11   Universidade Federal de Pernambuco, Recife PE, Brazil.
12   Universidade de Pernambuco, Hospital Universitário Oswaldo Cruz, Recife PE, Brazil.
,
Rebeca Veras de Andrade Vieira 
13   Universidade do Vale do Rio dos Sinos, São Leopoldo RS, Brazil.
,
Renata Gomes Londero 
1   Hospital Moinhos de Vento, Porto Alegre RS, Brazil.
14   Hospital de Clínicas de Porto Alegre, Porto Alegre RS, Brazil.
,
Fernando Kowacs 
1   Hospital Moinhos de Vento, Porto Alegre RS, Brazil.
2   Fundação Universidade Federal de Ciências da Saúde de Porto Alegre, Porto Alegre RS, Brazil.
› Author Affiliations Support This registry was developed with the support of the Brazilian Headache Society and funding from Novartis Brazil. None of the researchers received any financial resources to carry out the research.
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Abstract

Background Evaluation and treatment of primary and secondary headaches is a global public health challenge. Recognizing the epidemiological impact of headaches, a group of researchers linked to the Brazilian Headache Society proposed the Brazilian Headache Registry and drew up its initial protocol.

Objective Here we describe the methods and preliminary data obtained from the pilot study.

Methods This was a multicenter longitudinal observational study conducted between September 2020 and August 2021. Prospective data were collected in three specialist centers for headache care in states in southern and southeastern Brazil. Patients aged 18 years or older who sought care for headache in tertiary centers and who agreed to participate in the study, were considered eligible.

Results Sixty-six patients were included in the pilot study: 43 (65%) from Rio Grande do Sul state and 23 (35%) from Minas Gerais state. Overall, 90% were female, and the subjects' mean age was 38.2 ± 11.2 years. Primary headaches accounted for 85.3% of the diagnoses made. Among secondary headaches, medication overuse headache was the most frequent type (7.1%).

Conclusions The pilot study showed the feasibility of the research protocol developed for tertiary centers. The Brazilian Headache Registry will form a source of longitudinal data with the aim of contributing to better characterization of the various phenotypes of patients with primary and secondary headaches, and to detailing the use of health resources and identifying predictors of better clinical outcomes.

Resumo

Antecedentes A avaliação e o tratamento das cefaleias primárias e secundárias são um desafio global de saúde pública. Reconhecendo o impacto epidemiológico das cefaleias, um grupo de pesquisadores vinculados à Sociedade Brasileira de Cefaleia propôs a criação de um Registro Brasileiro de Cefaleia e elaborou seu protocolo inicial.

Objetivo Nesta publicação descrevemos os métodos e dados preliminares obtidos a partir do estudo piloto.

Métodos Trata-se de um estudo prospectivo observacional longitudinal multicêntrico, realizado entre setembro de 2020 e agosto de 2021. Foram coletados dados em três centros especializados no atendimento de cefaleia, em estados da região sul e sudeste do Brasil. Pacientes com idade igual ou superior a 18 anos que procuraram os centros terciários por queixa de cefaleia e concordaram em participar do estudo foram considerados elegíveis.

Resultados Sessenta e seis pacientes foram incluídos no estudo piloto, 43 (65%) do Rio Grande do Sul e 23 (35%) de Minas Gerais. Da amostra total, 90% eram do sexo feminino e a idade média dos sujeitos foi de 38,2 ± 11,2 anos. As cefaleias primárias representaram 85,3% dos diagnósticos realizados. Entre as cefaleias secundárias, a cefaleia por uso excessivo de medicamentos foi a mais frequente (7,1%).

Conclusões O estudo piloto evidenciou a viabilidade do protocolo de pesquisa desenvolvido para centros terciários. O Registro Brasileiro de Cefaleia constituirá uma fonte de dados longitudinais com o objetivo de contribuir para melhor caracterização dos diversos fenótipos de pacientes com cefaleias primárias e secundárias, detalhar o uso de recursos de saúde e identificar preditores de melhores desfechos clínicos.

Keywords

Headache - Migraine Disorders - Routinely Collected Health Data - Epidemiology

Palavras-chave

Cefaleia - Transtornos de Enxaqueca - Dados de Saúde Coletados Rotineiramente - Epidemiologia

Authors' Contributions

VG: conceptualization, data curation, formal analysis, investigation, methodology, project administration, resources, software, supervision, validation, visualization, writing – original draft, writing – review & editing; MEJ, FK: conceptualization, data curation, formal analysis, funding acquisition, investigation, methodology, project administration, resources, software, supervision, validation, visualization, writing – original draft, writing – review & editing; ACF, RGL: conceptualization, data curation, investigation, methodology, supervision, validation, visualization, writing – review & editing; CRMR: writing – review & editing; EMS, LMB, LPQ, MCC, MFPP, PASRF, RVAV: conceptualization, methodology, writing – review & editing; JKP, LLS, LEPB: conceptualization, data curation, investigation, methodology.




Publication History

Received: 02 February 2023

Accepted: 06 April 2023

Article published online:
21 August 2023

© 2023. Academia Brasileira de Neurologia. This is an open access article published by Thieme under the terms of the Creative Commons Attribution 4.0 International License, permitting copying and reproduction so long as the original work is given appropriate credit (https://creativecommons.org/licenses/by/4.0/)

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  • References

  • 1 Queiroz LP, Silva Junior AA. The prevalence and impact of headache in Brazil. Headache 2015; 55 (Suppl. 01) 32-38
    CrossrefPubMedSearch in Google Scholar
  • 2 Vincent MB, de Carvalho JJ. Brazilian Headache Care Cooperative Group. Primary headache care delivery by nonspecialists in Brazil. Cephalalgia 1999; 19 (05) 520-524
    CrossrefPubMedSearch in Google Scholar
  • 3 Peres MFP, Swerts DB, de Oliveira AB, Silva-Neto RP. Migraine patients' journey until a tertiary headache center: an observational study. J Headache Pain 2019; 20 (01) 88
    CrossrefPubMedSearch in Google Scholar
  • 4 Abbafati C, Abbas KM, Abbasi-Kangevari M. et al; GBD 2019 Diseases and Injuries Collaborators. Global burden of 369 diseases and injuries in 204 countries and territories, 1990-2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet 2020; 396 (10258): 1204-1222
    CrossrefPubMedSearch in Google Scholar
  • 5 Stovner LJ, Nichols E, Steiner TJ. et al; GBD 2016 Headache Collaborators. Global, regional, and national burden of migraine and tension-type headache, 1990-2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol 2018; 17 (11) 954-976
    CrossrefPubMedSearch in Google Scholar
  • 6 Bhatt DL, Drozda Jr JP, Shahian DM. et al. ACC/AHA/STS Statement on the Future of Registries and the Performance Measurement Enterprise: A Report of the American College of Cardiology/American Heart Association Task Force on Performance Measures and The Society of Thoracic Surgeons. J Am Coll Cardiol 2015; 66 (20) 2230-2245
    CrossrefPubMedSearch in Google Scholar
  • 7 Fragoso YD. MIDAS (Migraine Disability Assessment): a valuable tool for work-site identification of migraine in workers in Brazil. Sao Paulo Med J 2002; 120 (04) 118-121
    CrossrefPubMedSearch in Google Scholar
  • 8 Lipton RB, Kolodner K, Bigal ME. et al. Validity and reliability of the migraine-treatment optimization questionnaire. Cephalalgia 2009; 29 (07) 751-759
    CrossrefPubMedSearch in Google Scholar
  • 9 Kroenke K, Spitzer RL, Williams JBW. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med 2001; 16 (09) 606-613
    CrossrefPubMedSearch in Google Scholar
  • 10 Seo JG, Park SP. Validation of the Patient Health Questionnaire-9 (PHQ-9) and PHQ-2 in patients with migraine. J Headache Pain 2015; 16 (01) 65
    CrossrefPubMedSearch in Google Scholar
  • 11 Seo JG, Park SP. Validation of the Generalized Anxiety Disorder-7 (GAD-7) and GAD-2 in patients with migraine. J Headache Pain 2015; 16 (01) 97
    CrossrefPubMedSearch in Google Scholar
  • 12 Buysse DJ, Ancoli-Israel S, Edinger JD, Lichstein KL, Morin CM. Recommendations for a standard research assessment of insomnia. Sleep 2006; 29 (09) 1155-1173
    CrossrefPubMedSearch in Google Scholar
  • 13 Okajima I, Miyamoto T, Ubara A. et al. Evaluation of severity levels of the athens insomnia scale based on the criterion of insomnia severity index. Int J Environ Res Public Health 2020; 17 (23) 1-10
    Search in Google Scholar
  • 14 Johns MW. A new method for measuring daytime sleepiness: the Epworth sleepiness scale. Sleep 1991; 14 (06) 540-545
    CrossrefPubMedSearch in Google Scholar
  • 15 Pires AC, Fleck MP, Power M, da Rocha NS. Psychometric properties of the EUROHIS-QOL 8-item index (WHOQOL-8) in a Brazilian sample. Br J Psychiatry 2018; 40 (03) 249-255
    CrossrefPubMedSearch in Google Scholar
  • 16 da Rocha NS, Power MJ, Bushnell DM, Fleck MP. The EUROHIS-QOL 8-item index: comparative psychometric properties to its parent WHOQOL-BREF. Value Health 2012; 15 (03) 449-457
    CrossrefPubMedSearch in Google Scholar
  • 17 Booker CL, Harding S, Benzeval M. A systematic review of the effect of retention methods in population-based cohort studies. BMC Public Health 2011; 11: 249
    CrossrefPubMedSearch in Google Scholar
  • 18 Kowacs F, Dantas D, De Macedo O, Pereira Da Silva-Neto R. Classificação Internacional das Cefaleias, 3a edição. Tradução da Sociedade Brasileira de Cefaleia com autorização da Sociedade Internacional de Cefaleia. Headache Disorders 3rd ed (2018) ICHD-3. Tradução 2018
  • 19 Schwedt TJ, Digre K, Tepper SJ. et al. The American Registry for Migraine Research: Research Methods and Baseline Data for an Initial Patient Cohort. Headache 2020; 60 (02) 337-347
    CrossrefPubMedSearch in Google Scholar
  • 20 Cho SJ, Lee MJ, Kim BK. et al. Clinical features of chronic cluster headache based on the third edition of the International Classification of Headache Disorders: A prospective multicentre study. PLoS One 2019; 14 (08) e0221155
    CrossrefPubMedSearch in Google Scholar
  • 21 Hornik CP, Gelfand AA, Szperka CL. et al. Development of a Prospective Real-World Data Clinical Registry of Children and Adolescents With Migraine. Headache 2020; 60 (02) 405-415
    CrossrefPubMedSearch in Google Scholar
  • 22 Belvís R, Irimia P, Pozo-Rosich P. et al. MAB-MIG: registry of the spanish neurological society of erenumab for migraine prevention. J Headache Pain 2021; 22 (01) 74
    CrossrefPubMedSearch in Google Scholar
  • 23 Ruscheweyh R, Klonowski T, Goßrau G. et al. The headache registry of the German Migraine and Headache Society (DMKG): baseline data of the first 1,351 patients. J Headache Pain 2022; 23 (01) 74
    CrossrefPubMedSearch in Google Scholar
  • 24 Barbanti P, Egeo G, Aurilia C. et al; Italian Migraine Registry Study Group. The first report of the Italian Migraine Registry (I-GRAINE). Neurol Sci 2022; 43 (09) 5725-5728
    CrossrefPubMedSearch in Google Scholar
  • 25 Ishii R, Schwedt TJ, Kim SK, Dumkrieger G, Chong CD, Dodick DW. Effect of Migraine on Pregnancy Planning: Insights From the American Registry for Migraine Research. Mayo Clin Proc 2020; 95 (10) 2079-2089
    CrossrefPubMedSearch in Google Scholar
  • 26 Pearl TA, Dumkrieger G, Chong CD, Dodick DW, Schwedt TJ. Sensory Hypersensitivity Symptoms in Migraine With vs Without Aura: Results From the American Registry for Migraine Research. Headache 2020; 60 (03) 506-514
    CrossrefPubMedSearch in Google Scholar
  • 27 Trivedi M, Dumkrieger G, Chong CD, Dodick DW, Schwedt TJ. Impact of abuse on migraine-related sensory hypersensitivity symptoms: Results from the American Registry for Migraine Research. Headache 2021; 61 (05) 740-754
    CrossrefPubMedSearch in Google Scholar
  • 28 Leibovit-Reiben Z, Ishii R, Dodick DW. et al. The impact of pre-morbid headaches on headache features and long-term health outcomes following traumatic brain injury: Insights from the American Registry for Migraine Research. Headache 2022; 62 (05) 566-576
    CrossrefPubMedSearch in Google Scholar
  • 29 Finkel AG. American academic headache specialists in neurology: practice characteristics and culture. Cephalalgia 2004; 24 (07) 522-527
    CrossrefPubMedSearch in Google Scholar