Patient perceptions of barriers to effective migraine management in Aotearoa New Zealand

Blair McInnarney; Fiona Imlach; Jonathan Kennedy; Susan M. Garrett

doi:10.1071/HC24020

RESEARCH ARTICLE (Open Access)

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Patient perceptions of barriers to effective migraine management in Aotearoa New Zealand

Blair McInnarney ¹ , Fiona Imlach

² ³ , Jonathan Kennedy

¹ , Susan M. Garrett

¹ ^*

+ Author Affiliations

- Author Affiliations

¹ Department of Primary Health Care and General Practice, University of Otago, Wellington, Te Whare Wānanga o Otāgo ki Te Whanganui-a-Tara, PO Box 7343, Wellington 6242, New Zealand.

² Department of Public Health, University of Otago, Wellington, Te Whare Wānanga o Otāgo ki Te Whanganui-a-Tara, Wellington 6242, New Zealand.

³ Migraine Foundation Aotearoa New Zealand, Auckland, New Zealand.

^* Correspondence to: sue.garrett@otago.ac.nz

Handling Editor: Felicity Goodyear-Smith

Journal of Primary Health Care 16(4) 347-356 https://doi.org/10.1071/HC24020

Submitted: 16 February 2024 Accepted: 23 April 2024 Published: 9 May 2024

© 2024 The Author(s) (or their employer(s)). Published by CSIRO Publishing on behalf of The Royal New Zealand College of General Practitioners. This is an open access article distributed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License (CC BY-NC-ND)

Abstract

Introduction

Migraine is a complex neurological condition which requires evidence based treatment, tailored to the individual. International evidence shows that treatment is often sub-optimal, but the experience of people with migraine in NZ is unknown.

Aim

This study aimed to describe the barriers people with migraine disease face when seeking care for their condition in Aotearoa New Zealand (NZ).

Methods

The Migraine in Aotearoa New Zealand Survey (MiANZ) was delivered online via SurveyMonkey from 22 August 2022 to 7 October 2022. Questions included: sociodemographics, the Migraine Disability Assessment Scale (MIDAS), ability to access health care, perception of health professionals’ knowledge and open-ended questions. Analysis used a mixed method approach.

Results

Five hundred and thirty people from NZ responded, of whom 82% (433/530) were female and 77% (409/530) NZ European/other. Eighty-eight percent (467/530) had accessed primary care for migraine, with 36% (167/467) finding GPs’ knowledge of migraine to be excellent or very good. Forty-two percent (222/530) reported at least one instance where they had felt judged because of migraine by a health professional. Themes from free-text data included patient perception of health professionals’ knowledge of migraine, the presence of stigma within medical practice and systemic barriers to accessing effective health care.

Discussion

People with migraine in NZ report significant barriers when trying to access effective management. Barriers were in both primary and secondary care and impacted the ability of people with migraine to manage their condition. More current migraine continuing medical education for GPs and other health professionals, better development and communication of care plans between primary and secondary care and patients and measures to address stigma are required to improve management of this complex disease.

Keywords: access to primary care, migraine disorders, neurological condition, New Zealand, online survey, patient experience, primary headache disorders, primary health care.

References

1 Olesen J. Headache Classification Committee of the International Headache Society (IHS) - The International Classification of Headache Disorders. Vol. 38, Cephalalgia, 3rd edn. SAGE Publications Ltd; 2018. pp. 1–211.

2 Stovner LJ, Hagen K, Linde M, et al. The global prevalence of headache: an update, with analysis of the influences of methodological factors on prevalence estimates. J Headache Pain 2022; 23(1): 1-17.
| Crossref | Google Scholar | PubMed |

3 Global Burden of Disease Collaborative Network. Global Burden of Disease Study 2019 (GBD 2019) Results. 2020. Available at https://ghdx.healthdata.org/gbd-2019

4 Vos T, Lim SS, Abbafati C, et al. 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): 1204-22.
| Crossref | Google Scholar |

5 Feigin VL, Nichols E, Alam T, et al. Global, regional, and national burden of neurological disorders, 1990–2016: a systematic analysis for the Global Burden of Disease Study 2016. Lancet Neurol 2019; 18(5): 459-80.
| Crossref | Google Scholar |

6 Buse DC, Armand CE, Charleston L, et al. Barriers to care in episodic and chronic migraine: Results from the Chronic Migraine Epidemiology and Outcomes Study. Headache 2021; 61(4): 628-41.
| Crossref | Google Scholar | PubMed |

7 Bigal M, Krymchantowski AV, Lipton RB. Barriers to satisfactory migraine outcomes. what have we learned, where do we stand?: views and perspectives. Headache 2009; 49: 1028-41.
| Crossref | Google Scholar | PubMed |

8 Saylor D, Steiner TJ. The global burden of headache. Semin Neurol 2018; 38(2): 182-90.
| Crossref | Google Scholar | PubMed |

9 Olesen A, Schytz HW, Ostrowski SR, et al. Low adherence to the guideline for the acute treatment of migraine. Sci Rep 2022; 12: 8487.
| Crossref | Google Scholar | PubMed |

10 Garrett S, Imlach F. The impact of migraine in Aotearoa New Zealand. N Z Med J 2024; 137(1592): 54-76.
| Google Scholar |

11 Eigenbrodt AK, Ashina H, Khan S, et al. Diagnosis and management of migraine in ten steps. Nat Rev Neurol 2021; 17: 501-14.
| Crossref | Google Scholar | PubMed |

12 Steiner TJ, Jensen R, Katsarava Z, et al. Aids to management of headache disorders in primary care (2nd edition). J Headache Pain 2019; 20(1): 1-52.
| Crossref | Google Scholar | PubMed |

13 Cousins G, Hijazze S, Van De Laar FA, et al. Diagnostic accuracy of the ID Migraine: a systematic review and meta-analysis. Headache 2011; 51(7): 1140-8.
| Crossref | Google Scholar | PubMed |

14 Stewart WF, Lipton RB, Kolodner K. Migraine disability assessment (MIDAS) score: relation to headache frequency, pain intensity, and headache symptoms. Headache 2003; 43(3): 258-65.
| Crossref | Google Scholar | PubMed |

15 Young WB, Park JE, Tian IX, et al. The stigma of migraine. PLoS One 2013; 8(1): e54074.
| Crossref | Google Scholar | PubMed |

16 Shapiro RE, Nicholson RA, Seng EK, et al. Migraine-related stigma and its relationship to disability, interictal burden, and quality of life. Neurology 2024; 102(3): 208074.
| Crossref | Google Scholar | PubMed |

17 King N. Template Analysis. In: Symon G, Cassell C, eds. Qualitative Methods and Analysis in Organizational Research. London: Sage; 1998. pp. 118–134.

18 Brooks J, McCluskey S, Turley E, et al. The utility of template analysis in qualitative psychology research. Qual Res Psychol 2015; 12(2): 202-22.
| Crossref | Google Scholar | PubMed |

19 Braun V, Clarke V, Boulton E, et al. The online survey as a qualitative research tool. Int J Soc Res Methodol 2021; 24(6): 641-54.
| Crossref | Google Scholar |

20 Lipton RB, Dodick D, Sadovsky R, et al. A self-administered screener for migraine in primary care. The ID Migraine™ validation study. Neurology 2003; 61: 375-82.
| Crossref | Google Scholar | PubMed |

21 Statistics New Zealand. National ethnic population projections: 2018(base)–2043. 2018. Available at https://www.stats.govt.nz/information-releases/national-ethnic-population-projections-2018base-2043/

22 Parikh SK, Kempner J, Young WB. Stigma and migraine: developing effective interventions. Curr Pain Headache Rep 2021; 25: 75.
| Crossref | Google Scholar | PubMed |

23 Vaghi G, De Icco R, Tassorelli C, et al. Who cares about migraine? Pathways and hurdles in the European region - access to care III. J Headache Pain 2023; 24(1): 120.
| Crossref | Google Scholar | PubMed |

24 Verhaak AMS, Williamson A, Johnson A, et al. Migraine diagnosis and treatment: a knowledge and needs assessment of women’s healthcare providers. Headache 2021; 61(1): 69-79.
| Crossref | Google Scholar | PubMed |

25 O’Brien HL, Halker Singh RB. Breaking down barriers to care: understanding migraine knowledge gaps among women’s healthcare providers. Headache 2011; 51(6): 839-42.
| Crossref | Google Scholar |

26 Ailani J, Burch RC, Robbins MS, the Board of Directors of the American Headache Society.. The American Headache Society consensus statement: update on integrating new migraine treatments into clinical practice. Headache 2021; 61(7): 1021-39.
| Crossref | Google Scholar | PubMed |

27 Casanova A, Vives-Mestres M, Donoghue S, et al. An observational study of self-reported migraine triggers and prospective evaluation of the relationships with occurrence of attacks enabled by a smartphone application (App). Headache 2022; 62(10): 1406-15.
| Crossref | Google Scholar | PubMed |

28 Fischer-Schulte LH, Peng KP. Migraine prodromes and migraine triggers. Handb Clin Neurol 2023; 198: 135-148.
| Crossref | Google Scholar | PubMed |

29 Blumenfeld AM, Lipton RB, Silberstein S, et al. Multimodal migraine management and the pursuit of migraine freedom: a narrative review. Neurol Ther 2023; 12(5): 1533-51.
| Crossref | Google Scholar | PubMed |

30 Walling A. Frequent headaches: evaluation and management. Am Fam Physician 2020; 101(7): 419-28.
| Google Scholar | PubMed |

31 Levesque JF, Harris MF, Russell G. Patient-centred access to health care: conceptualising access at the interface of health systems and populations. Int J Equity Health 2013; 12(1): 1-9.
| Crossref | Google Scholar | PubMed |

32 Migraine Australia. Stigma Survey. Migraine Australia; 2020.

33 Kempner J. Not Tonight: Migraine and the Politics of Gender and Health. The University of Chicago Press; 2014.

34 Lipton RB, Bigal ME, Rush SR, et al. Migraine practice patterns among neurologists. Neurology 2004; 62: 1926-31.
| Crossref | Google Scholar |

35 Pearce J. Migraine: a psychosomatic disorder. Headache 1977; 17(3): 125-8.
| Crossref | Google Scholar |

36 Foxhall K. “Happy hunting ground”: Conceptual fragmentation and experimentation in the twentieth century. Migraine: A history. Baltimore: Johns Hopkins University Press; 2019. pp. 155–83.

37 Sebring JCH. Towards a sociological understanding of medical gaslighting in western health care. Sociol Health Illn 2021; 43(9): 1951-64.
| Crossref | Google Scholar | PubMed |

38 Pescosolido BA, Martin JK. The stigma complex. Annu Rev Sociol 2015; 41: 87-116.
| Crossref | Google Scholar | PubMed |

39 Vetvik KG, MacGregor EA. Sex differences in the epidemiology, clinical features, and pathophysiology of migraine. Lancet Neurol 2017; 16: 76-87.
| Crossref | Google Scholar | PubMed |

40 Ministry of Health. Annual Update of Key Results 2022/23: New Zealand Health Survey. 2023. Available at https://minhealthnz.shinyapps.io/nz-health-survey-2022-23-annual-data-explorer/

41 Financial Services Council NZ. Health Insurance. 2021. Available at https://www.fsc.org.nz/topics/health-insurance

42 Keene L. Creeping Privatisation: Analysis of trends in planned care provision in Aotearoa New Zealand. 2023. Available at https://asms.org.nz/wp-content/uploads/2023/09/Creeping-Privatisation_final-Sept-2023.pdf

43 Leonardi M, Ruiz De La Torre E, Steiner TJ, et al. Value of treatment of headache patients and need to improve headache patients’ journey. J Neurol Sci 2018; 39(1): 115-6.
| Crossref | Google Scholar | PubMed |

44 Steiner TJ, Jensen R, Katsarava Z, et al. Structured Q1 headache services as the solution to the ill-health burden of headache: 1. Rationale and description. J Headache Pain 2021; 22(1): 1-22.
| Crossref | Google Scholar | PubMed |

45 Elisabetta SW, Sabrina G, Ronald L, et al. Management of Migraine and the Accessibility of Specialist Care: Findings from an Extended Multinational Survey (My Migraine Center Survey). 10.6084/m9.figshare.12698417

46 Tinelli M, Leonardi M, Paemeleire K, et al. Structured headache services as the solution to the ill-health burden of headache. 3. Modelling effectiveness and cost-effectiveness of implementation in Europe: findings and conclusions. J Headache Pain 2021; 22(1): 90.
| Crossref | Google Scholar | PubMed |

47 Lampl C, MaassenVanDenBrink A, Deligianni CI, et al. The comparative effectiveness of migraine preventive drugs: a systematic review and network meta-analysis. J Headache Pain 2023; 24(1): 56.
| Crossref | Google Scholar |

48 Soni P, Chawla E. Efficacy and safety of anti-calcitonin gene-related peptide monoclonal antibodies for treatment of chronic migraine: a systematic review and network meta-analysis. Clin Neurol Neurosurg 2021; 209: 106893.
| Crossref | Google Scholar | PubMed |

49 Siersbæk N, Kilsdal L, Jervelund C, et al. Real-world evidence on the economic implications of CGRP-mAbs as preventive treatment of migraine. BMC Neurol 2023; 23(1): 254.
| Crossref | Google Scholar | PubMed |

50 Digital Government. Digital inclusion user insights. 2020. Available at https://www.digital.govt.nz/digital-government/programmes-and-projects/digital-inclusion/digital-inclusion-research/