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Published in: The Journal of Headache and Pain 1/2019

Open Access 01-12-2019 | Migraine | Research article

Development of an education and self-management intervention for chronic headache – CHESS trial (Chronic Headache Education and Self-management Study)

Authors: Shilpa Patel, Rachel Potter, Manjit Matharu, Dawn Carnes, Stephanie J. C. Taylor, Vivien Nichols, Tamar Pincus, Martin Underwood, Harbinder Sandhu, On behalf of the CHESS team

Published in: The Journal of Headache and Pain | Issue 1/2019

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Abstract

Background

Self-management interventions are well recognised and widely used in chronic conditions. Their application to chronic headaches has been limited and generally of low quality. We describe here our process for developing an evidence based, and theory driven, education and self-management intervention for those living with chronic headache.

Methods

Our intervention was designed using several core information sources; the results of three systematic reviews, qualitative material from those living with chronic headaches, our knowledge from existing self-management interventions; and finally collaborative input from a multidisciplinary team of clinicians, academics, patients, and charity partners. We manualised the intervention and associated training as a package for use in a feasibility study. We made adaptations for its use in a randomised controlled trial.

Results

We piloted the intervention in four groups with a total of 18 participants. Qualitative feedback from 12 participants and five facilitators allowed the intervention to be refined for the main randomised controlled trial. Some of the key changes included shortening of the overall intervention, changes to the originally planned facilitators and spreading the facilitator training over three days rather than two.
We are now testing the final revised intervention in a randomised controlled trial of its clinical and cost effectiveness. The group component of the intervention is delivered over two days with the first day focused on living, understanding and dealing with chronic headaches and the second day exploring how to adapt and take control of one’s life with chronic headaches.

Conclusion

Our pilot work indicates that our intervention is feasible to deliver, and with the relevant changes would be acceptable for use with this population. Our randomised control trial is ongoing. We anticipate publishing final results in 2021.

Trial registration

ISRCTN79708100. Registered 16th December 2015, http://​www.​isrctn.​com/​ISRCTN79708100
Footnotes
1
In 2018 Migraine Action merged with the Migraine Trust - https://​www.​migrainetrust.​org/​
 
Literature
1.
go back to reference Global, regional, and national burden of neurological disorders during 1990–2015 (2017) a systematic analysis for the Global Burden of Disease Study 2015. Lancet Neurol 16(11):877–897.CrossRef Global, regional, and national burden of neurological disorders during 1990–2015 (2017) a systematic analysis for the Global Burden of Disease Study 2015. Lancet Neurol 16(11):877–897.CrossRef
2.
go back to reference Gahir KK, Larner AJ (2006) Primary headache disorder in the emergency department: perspective from a general neurology outpatient clinic. Emerg Med J 23(2):135–136.CrossRef Gahir KK, Larner AJ (2006) Primary headache disorder in the emergency department: perspective from a general neurology outpatient clinic. Emerg Med J 23(2):135–136.CrossRef
3.
go back to reference Hopkins A, Menken M, DeFriese G (1989) A record of patient encounters in neurological practice in the United Kingdom. J Neurol Neurosurg Psychiatry 52(4):436–438.CrossRef Hopkins A, Menken M, DeFriese G (1989) A record of patient encounters in neurological practice in the United Kingdom. J Neurol Neurosurg Psychiatry 52(4):436–438.CrossRef
4.
go back to reference Latinovic R, Gulliford M, Ridsdale L (2006) Headache and migraine in primary care: consultation, prescription, and referral rates in a large population. J Neurol Neurosurg Psychiatry 77(3):385–387.CrossRef Latinovic R, Gulliford M, Ridsdale L (2006) Headache and migraine in primary care: consultation, prescription, and referral rates in a large population. J Neurol Neurosurg Psychiatry 77(3):385–387.CrossRef
5.
go back to reference Ridsdale L, Clark LV, Dowson AJ, Goldstein LH, Jenkins L, McCrone P et al (2007) How do patients referred to neurologists for headache differ from those managed in primary care? Br J Gen Pract 57(538):388–395.PubMedPubMedCentral Ridsdale L, Clark LV, Dowson AJ, Goldstein LH, Jenkins L, McCrone P et al (2007) How do patients referred to neurologists for headache differ from those managed in primary care? Br J Gen Pract 57(538):388–395.PubMedPubMedCentral
6.
go back to reference Steiner T (2010) The economic cost of migraine and other headache disorders in the UK: a report of the all-party parliamentary group on primary headache disorders (APPGPHD). House of Commons, London Steiner T (2010) The economic cost of migraine and other headache disorders in the UK: a report of the all-party parliamentary group on primary headache disorders (APPGPHD). House of Commons, London
7.
go back to reference Chandler JSH, Giles L, Shoesmith D (2018) The Work Foundation: Society’s headache - The socioeconomic impact of migraine. The Work Foundation, London Chandler JSH, Giles L, Shoesmith D (2018) The Work Foundation: Society’s headache - The socioeconomic impact of migraine. The Work Foundation, London
8.
go back to reference Jackson JL, Cogbill E, Santana-Davila R, Eldredge C, Collier W, Gradall A et al (2015) A comparative effectiveness meta-analysis of drugs for the prophylaxis of migraine headache. PLoS One 10(7):e0130733.CrossRef Jackson JL, Cogbill E, Santana-Davila R, Eldredge C, Collier W, Gradall A et al (2015) A comparative effectiveness meta-analysis of drugs for the prophylaxis of migraine headache. PLoS One 10(7):e0130733.CrossRef
9.
go back to reference Dodick DW, Turkel CC, DeGryse RE, Aurora SK, Silberstein SD, Lipton RB et al (2010) OnabotulinumtoxinA for treatment of chronic migraine: pooled results from the double-blind, randomized, placebo-controlled phases of the PREEMPT clinical program. Headache. 50(6):921–936.CrossRef Dodick DW, Turkel CC, DeGryse RE, Aurora SK, Silberstein SD, Lipton RB et al (2010) OnabotulinumtoxinA for treatment of chronic migraine: pooled results from the double-blind, randomized, placebo-controlled phases of the PREEMPT clinical program. Headache. 50(6):921–936.CrossRef
10.
go back to reference Silberstein SD, Lipton RB, Dodick DW, Freitag FG, Ramadan N, Mathew N et al (2007) Efficacy and safety of topiramate for the treatment of chronic migraine: a randomized, double-blind, placebo-controlled trial. Headache. 47(2):170–180.CrossRef Silberstein SD, Lipton RB, Dodick DW, Freitag FG, Ramadan N, Mathew N et al (2007) Efficacy and safety of topiramate for the treatment of chronic migraine: a randomized, double-blind, placebo-controlled trial. Headache. 47(2):170–180.CrossRef
11.
go back to reference Diener HC, Bussone G, Van Oene JC, Lahaye M, Schwalen S, Goadsby PJ (2007) Topiramate reduces headache days in chronic migraine: a randomized, double-blind, placebo-controlled study. Cephalalgia 27(7):814–823.CrossRef Diener HC, Bussone G, Van Oene JC, Lahaye M, Schwalen S, Goadsby PJ (2007) Topiramate reduces headache days in chronic migraine: a randomized, double-blind, placebo-controlled study. Cephalalgia 27(7):814–823.CrossRef
12.
go back to reference Mei D, Ferraro D, Zelano G, Capuano A, Vollono C, Gabriele C et al (2006) Topiramate and triptans revert chronic migraine with medication overuse to episodic migraine. Clin Neuropharmacol 29(5):269–275.CrossRef Mei D, Ferraro D, Zelano G, Capuano A, Vollono C, Gabriele C et al (2006) Topiramate and triptans revert chronic migraine with medication overuse to episodic migraine. Clin Neuropharmacol 29(5):269–275.CrossRef
13.
go back to reference Silvestrini M, Bartolini M, Coccia M, Baruffaldi R, Taffi R, Provinciali L (2003) Topiramate in the treatment of chronic migraine. Cephalalgia 23(8):820–824.CrossRef Silvestrini M, Bartolini M, Coccia M, Baruffaldi R, Taffi R, Provinciali L (2003) Topiramate in the treatment of chronic migraine. Cephalalgia 23(8):820–824.CrossRef
14.
go back to reference NICE. Headaches in over 12s: diagnosis and management - Clinical guideline [CG150] 2012. NICE. Headaches in over 12s: diagnosis and management - Clinical guideline [CG150] 2012.
15.
go back to reference Taylor SJC, Pinnock H, Epiphaniou E, Pearce G, Parke HL, Schwappach A et al (2014) Health services and delivery research. A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS - practical systematic review of self-management support for long-term conditions. NIHR Journals Library, Southampton. Taylor SJC, Pinnock H, Epiphaniou E, Pearce G, Parke HL, Schwappach A et al (2014) Health services and delivery research. A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions: PRISMS - practical systematic review of self-management support for long-term conditions. NIHR Journals Library, Southampton.
16.
go back to reference Deakin T, McShane CE, Cade JE, Williams RD (2005) Group based training for self-management strategies in people with type 2 diabetes mellitus. Cochrane Database Syst Rev 18(2):Cd003417. Deakin T, McShane CE, Cade JE, Williams RD (2005) Group based training for self-management strategies in people with type 2 diabetes mellitus. Cochrane Database Syst Rev 18(2):Cd003417.
17.
go back to reference Pinnock H, Parke HL, Panagioti M, Daines L, Pearce G, Epiphaniou E et al (2017) Systematic meta-review of supported self-management for asthma: a healthcare perspective. BMC Med 15(1):64.CrossRef Pinnock H, Parke HL, Panagioti M, Daines L, Pearce G, Epiphaniou E et al (2017) Systematic meta-review of supported self-management for asthma: a healthcare perspective. BMC Med 15(1):64.CrossRef
18.
go back to reference Zwerink M, Brusse-Keizer M, van der Valk PD, Zielhuis GA, Monninkhof EM, van der Palen J et al (2014) Self management for patients with chronic obstructive pulmonary disease. Cochrane Database Syst Rev 19(3):Cd002990. Zwerink M, Brusse-Keizer M, van der Valk PD, Zielhuis GA, Monninkhof EM, van der Palen J et al (2014) Self management for patients with chronic obstructive pulmonary disease. Cochrane Database Syst Rev 19(3):Cd002990.
19.
go back to reference Ruiz de Velasco I, Gonzalez N, Etxeberria Y, Garcia-Monco JC (2003) Quality of life in migraine patients: a qualitative study. Cephalalgia 23(9):892–900.CrossRef Ruiz de Velasco I, Gonzalez N, Etxeberria Y, Garcia-Monco JC (2003) Quality of life in migraine patients: a qualitative study. Cephalalgia 23(9):892–900.CrossRef
20.
go back to reference Cottrell CK, Drew JB, Waller SE, Holroyd KA, Brose JA, O'Donnell FJ (2002) Perceptions and needs of patients with migraine: a focus group study. J Fam Pract 51(2):142–147.PubMedPubMedCentral Cottrell CK, Drew JB, Waller SE, Holroyd KA, Brose JA, O'Donnell FJ (2002) Perceptions and needs of patients with migraine: a focus group study. J Fam Pract 51(2):142–147.PubMedPubMedCentral
21.
go back to reference Duenas M, Ojeda B, Salazar A, Mico JA, Failde I (2016) A review of chronic pain impact on patients, their social environment and the health care system. J Pain Res 9:457–467.CrossRef Duenas M, Ojeda B, Salazar A, Mico JA, Failde I (2016) A review of chronic pain impact on patients, their social environment and the health care system. J Pain Res 9:457–467.CrossRef
22.
go back to reference Probyn K, Bowers H, Mistry D, Caldwell F, Underwood M, Patel S et al (2017) Non-pharmacological self-management for people living with migraine or tension-type headache: a systematic review including analysis of intervention components. BMJ Open 7(8):e016670.CrossRef Probyn K, Bowers H, Mistry D, Caldwell F, Underwood M, Patel S et al (2017) Non-pharmacological self-management for people living with migraine or tension-type headache: a systematic review including analysis of intervention components. BMJ Open 7(8):e016670.CrossRef
23.
go back to reference Fernandez-de-las-Penas C, Hernandez-Barrera V, Alonso-Blanco C, Palacios-Cena D, Carrasco-Garrido P, Jimenez-Sanchez S et al (2011) Prevalence of neck and low back pain in community-dwelling adults in Spain: a population-based national study. Spine. 36(3):E213–E219.CrossRef Fernandez-de-las-Penas C, Hernandez-Barrera V, Alonso-Blanco C, Palacios-Cena D, Carrasco-Garrido P, Jimenez-Sanchez S et al (2011) Prevalence of neck and low back pain in community-dwelling adults in Spain: a population-based national study. Spine. 36(3):E213–E219.CrossRef
24.
go back to reference Plesh O, Adams SH, Gansky SA (2012) Self-reported comorbid pains in severe headaches or migraines in a US national sample. Headache. 52(6):946–956.CrossRef Plesh O, Adams SH, Gansky SA (2012) Self-reported comorbid pains in severe headaches or migraines in a US national sample. Headache. 52(6):946–956.CrossRef
25.
go back to reference Vivekanantham A, Edwin C, Pincus T, Matharu M, Parsons H, Underwood M. The association between headache and low back pain: A systematic review. Vivekanantham A, Edwin C, Pincus T, Matharu M, Parsons H, Underwood M. The association between headache and low back pain: A systematic review.
26.
go back to reference Aurora SK, Kulthia A, Barrodale PM (2011) Mechanism of chronic migraine. Curr Pain Headache Rep 15(1):57–63.CrossRef Aurora SK, Kulthia A, Barrodale PM (2011) Mechanism of chronic migraine. Curr Pain Headache Rep 15(1):57–63.CrossRef
27.
go back to reference Obermann M, Nebel K, Schumann C, Holle D, Gizewski ER, Maschke M et al (2009) Gray matter changes related to chronic posttraumatic headache. Neurology. 73(12):978–983.CrossRef Obermann M, Nebel K, Schumann C, Holle D, Gizewski ER, Maschke M et al (2009) Gray matter changes related to chronic posttraumatic headache. Neurology. 73(12):978–983.CrossRef
28.
go back to reference Patel S, Carnes D, Eldridge S, Ellard DR, Griffiths F, Haywood K et al Usual care and a self-management support programme vs usual care and a relaxation programme for people living chronic headache disorders: a randomised controlled trial protocol (CHESS). Submited to BMC Medical Research Methodology. Patel S, Carnes D, Eldridge S, Ellard DR, Griffiths F, Haywood K et al Usual care and a self-management support programme vs usual care and a relaxation programme for people living chronic headache disorders: a randomised controlled trial protocol (CHESS). Submited to BMC Medical Research Methodology.
29.
go back to reference Michie S, Richardson M, Johnston M, Abraham C, Francis J, Hardeman W et al (2013) The behavior change technique taxonomy (v1) of 93 hierarchically clustered techniques: building an international consensus for the reporting of behavior change interventions. Ann Behav Med 46(1):81–95.CrossRef Michie S, Richardson M, Johnston M, Abraham C, Francis J, Hardeman W et al (2013) The behavior change technique taxonomy (v1) of 93 hierarchically clustered techniques: building an international consensus for the reporting of behavior change interventions. Ann Behav Med 46(1):81–95.CrossRef
30.
go back to reference Michie S, van Stralen MM, West R (2011 Apr 23) The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implementation Sci 6:42.CrossRef Michie S, van Stralen MM, West R (2011 Apr 23) The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implementation Sci 6:42.CrossRef
31.
go back to reference Michie S, Atkins L, West R (2014) The behaviour change wheel: a guide to developing interventions. Silverback Publishing, London. Michie S, Atkins L, West R (2014) The behaviour change wheel: a guide to developing interventions. Silverback Publishing, London.
32.
go back to reference Medical Research Council - A framework for the development and evaluation of RCTs for complex interventions to improve health. London: 2000. Medical Research Council - A framework for the development and evaluation of RCTs for complex interventions to improve health. London: 2000.
33.
go back to reference Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M (2008) Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ (Clinical research ed) 337:a1655. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M (2008) Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ (Clinical research ed) 337:a1655.
34.
go back to reference White K, Potter R, Patel S, Nichols V, Haywood K, Hee SW et al Chronic Headache Education and Self-management Study (CHESS) - a mixed method feasibility study to inform the design of a randomised controlled trial. Accepted in BMC Medical Research Methodology. White K, Potter R, Patel S, Nichols V, Haywood K, Hee SW et al Chronic Headache Education and Self-management Study (CHESS) - a mixed method feasibility study to inform the design of a randomised controlled trial. Accepted in BMC Medical Research Methodology.
35.
go back to reference Nichols VP, Ellard DR, Griffiths FE, Kamal A, Underwood M, Taylor SJC (2017) The lived experience of chronic headache: a systematic review and synthesis of the qualitative literature. BMJ Open 7(12):e019929.CrossRef Nichols VP, Ellard DR, Griffiths FE, Kamal A, Underwood M, Taylor SJC (2017) The lived experience of chronic headache: a systematic review and synthesis of the qualitative literature. BMJ Open 7(12):e019929.CrossRef
36.
go back to reference Probyn K, Bowers H, Caldwell F, Mistry D, Underwood M, Matharu M et al (2017) Prognostic factors for chronic headache: a systematic review. Neurology. 89(3):291–301.CrossRef Probyn K, Bowers H, Caldwell F, Mistry D, Underwood M, Matharu M et al (2017) Prognostic factors for chronic headache: a systematic review. Neurology. 89(3):291–301.CrossRef
37.
go back to reference Taylor SJC, Carnes D, Homer K, Pincus T, Kahan BC, Hounsome N et al (2016) Programme Grants for applied research. Improving the self-management of chronic pain: COping with persistent pain, effectiveness research in self-management (COPERS). NIHR Journals Library, Southampton. Taylor SJC, Carnes D, Homer K, Pincus T, Kahan BC, Hounsome N et al (2016) Programme Grants for applied research. Improving the self-management of chronic pain: COping with persistent pain, effectiveness research in self-management (COPERS). NIHR Journals Library, Southampton.
38.
go back to reference Carnes D, Homer KE, Miles CL, Pincus T, Underwood M, Rahman A et al (2012) Effective delivery styles and content for self-management interventions for chronic musculoskeletal pain: a systematic literature review. Clin J Pain 28(4):344–354.CrossRef Carnes D, Homer KE, Miles CL, Pincus T, Underwood M, Rahman A et al (2012) Effective delivery styles and content for self-management interventions for chronic musculoskeletal pain: a systematic literature review. Clin J Pain 28(4):344–354.CrossRef
39.
go back to reference Miles CL, Pincus T, Carnes D, Homer KE, Taylor SJ, Bremner SA et al (2011) Can we identify how programmes aimed at promoting self-management in musculoskeletal pain work and who benefits? A systematic review of sub-group analysis within RCTs. Eur J Pain 15(8):775.e1–775.11. Miles CL, Pincus T, Carnes D, Homer KE, Taylor SJ, Bremner SA et al (2011) Can we identify how programmes aimed at promoting self-management in musculoskeletal pain work and who benefits? A systematic review of sub-group analysis within RCTs. Eur J Pain 15(8):775.e1–775.11.
40.
go back to reference Beck JS (1964) Cognitive therapy: basics and beyond. Guildford Press, New York. Beck JS (1964) Cognitive therapy: basics and beyond. Guildford Press, New York.
41.
go back to reference Beck JS (1995) Cognitive therapy: the Guildford press. Beck JS (1995) Cognitive therapy: the Guildford press.
42.
go back to reference Bandura A (1977) Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev 84(2):191–215.CrossRef Bandura A (1977) Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev 84(2):191–215.CrossRef
43.
go back to reference Bandura A (1986) Social foundations of thought and action: a social cognitive theory: Pearson education. Bandura A (1986) Social foundations of thought and action: a social cognitive theory: Pearson education.
44.
go back to reference Hayes SCSK, Wilson KG (2004) Acceptance and commitment therapy: an experiential approach to behavior change. Guilford Press, New York.CrossRef Hayes SCSK, Wilson KG (2004) Acceptance and commitment therapy: an experiential approach to behavior change. Guilford Press, New York.CrossRef
45.
go back to reference Ajzen I (1991) The theory of planned behavior. Organ Behav Hum Decis Process 50:179–211.CrossRef Ajzen I (1991) The theory of planned behavior. Organ Behav Hum Decis Process 50:179–211.CrossRef
46.
go back to reference Fishbein MAI (1975) Belief, attitude, intention, and behavior: an introduction to theory and research. Addison-Wesley, Reading, MA. Fishbein MAI (1975) Belief, attitude, intention, and behavior: an introduction to theory and research. Addison-Wesley, Reading, MA.
47.
go back to reference Rosenstock IM (1966) Why people use health services. Milbank Mem Fund Q 44((3):Suppl):94–127.CrossRef Rosenstock IM (1966) Why people use health services. Milbank Mem Fund Q 44((3):Suppl):94–127.CrossRef
48.
go back to reference Rosenstock IM, Strecher VJ, Becker MH (1988) Social learning theory and the health belief model. Health Educ Q 15(2):175–183 Summer.CrossRef Rosenstock IM, Strecher VJ, Becker MH (1988) Social learning theory and the health belief model. Health Educ Q 15(2):175–183 Summer.CrossRef
49.
go back to reference Potter R, Hee SW, Griffiths F, Dodd K, Hoverd E, Underwood et al (2019) Development and validation of a telephone classification interview for common chronic headache disorders. J Headache Pain 20:2.CrossRef Potter R, Hee SW, Griffiths F, Dodd K, Hoverd E, Underwood et al (2019) Development and validation of a telephone classification interview for common chronic headache disorders. J Headache Pain 20:2.CrossRef
50.
go back to reference Carnes D, Homer K, Underwood M, Pincus T, Rahman A, Taylor SJ (2013) Pain management for chronic musculoskeletal conditions: the development of an evidence-based and theory-informed pain self-management course. BMJ Open 3(11):e003534.CrossRef Carnes D, Homer K, Underwood M, Pincus T, Rahman A, Taylor SJ (2013) Pain management for chronic musculoskeletal conditions: the development of an evidence-based and theory-informed pain self-management course. BMJ Open 3(11):e003534.CrossRef
51.
go back to reference Taylor SJ, Carnes D, Homer K, Kahan BC, Hounsome N, Eldridge S et al (2016) Novel three-day, community-based, nonpharmacological group intervention for chronic musculoskeletal pain (COPERS): a randomised clinical trial. PLoS Med 13(6):e1002040.CrossRef Taylor SJ, Carnes D, Homer K, Kahan BC, Hounsome N, Eldridge S et al (2016) Novel three-day, community-based, nonpharmacological group intervention for chronic musculoskeletal pain (COPERS): a randomised clinical trial. PLoS Med 13(6):e1002040.CrossRef
Metadata
Title
Development of an education and self-management intervention for chronic headache – CHESS trial (Chronic Headache Education and Self-management Study)
Authors
Shilpa Patel
Rachel Potter
Manjit Matharu
Dawn Carnes
Stephanie J. C. Taylor
Vivien Nichols
Tamar Pincus
Martin Underwood
Harbinder Sandhu
On behalf of the CHESS team
Publication date
01-12-2019
Publisher
Springer Milan
Published in
The Journal of Headache and Pain / Issue 1/2019
Print ISSN: 1129-2369
Electronic ISSN: 1129-2377
DOI
https://doi.org/10.1186/s10194-019-0980-5

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