MIGRAINE IN PRIMARY CARE ADVISORS Migraine Action Association Northampton, 13 June 2003 10.30-3.30 pm Guidelines for the development of the specialist

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MIGRAINE IN PRIMARY CARE ADVISORSMigraine Action Association

Northampton, 13 June 2003 10.30-3.30 pm

Guidelines for the development of the specialist headache patient

Programme

• Dr Andrew Dowson: Current status of the MIPCA / MAA patient project

• Ms Ann Turner: Finalisation of the MIPCA / MAA patient checklist

• Dr Bill Laughey: Finalisation of the MIPCA / MAA headache diary

Discussion session:• Roles of the specialist headache patient• Setting up specialist headache patient

services• Dr Andrew Dowson: Conclusions

Objectives

• Review and finalise the MIPCA / MAA patient checklist

• Review and finalise the MIPCA / MAA headache diary

• Discuss the role of the specialist headache patient

• Discuss the accreditation process• Next steps

– Nationwide meetings

Outputs

• Academic article

• MIPCA newsletter for GP

• Slide set for educational use

Current status of the MIPCA / MAA patient project

Dr Andrew Dowson

Where we stand at present

New MIPCA guidelines for migraine management in primary care

• MIPCA diagnostic algorithm for headache

• Management tailored to each patient’s needs

• MIPCA algorithm for migraine• ‘10 Commandments’ of headache• Primary care headache team

Careful diagnosis

• MIPCA has developed a simple but comprehensive scheme for the differential diagnosis of headache subtypes

• Diagnosis can then be confirmed with additional questions

Patient presenting with headache

Migraine/CDH

low

High

Q1. What is the impact of the headache on the sufferer’s daily life?

ETTH (50%)

Q2. How many days of headache does the patient have every month?

> 15 15

CDH (2-4%)

Q3. For patients with chronic daily headache, on how may days per week does the patient take analgesic medications?

<2 2

No medication overuse

Medication overuse

Migraine (15%)

Q4. For patients with migraine, does the patient experience reversible sensory symptoms associated with their attacks?

With aura Without aura

Yes No

Exclude sinister Headache (<0.1%)

Consider short-lasting Headaches (<0.1%)

Dowson AJ et al. Curr Med Res Opin 2002;18:414-39

• Behavioural therapy recommended for all• Acute therapy recommended for all• Prophylactic therapy recommended for

certain patients• Complementary therapies may be useful as

adjunctive therapy

Management individualised for each patient

Follow-up procedures

• Instigate proactive long-term follow-up procedures

• Monitor the outcome of therapy– Headache diaries– Impact questionnaires (MIDAS/HIT)

• Make appropriate treatment decisions

Detailed history, patient education and buy-inDiagnostic screening and differential diagnosisAssess illness severity

Attack frequency and durationPain severityImpact (MIDAS or HIT questionnaires)Non-headache symptomsPatient history and preferences

Intermittentmild-to-moderate migraine

(+/- aura)

Intermittentmoderate-to severe migraine

(+/- aura)

Aspirin/NSAID (large dose)Aspirin/paracetamol plus anti-emetic

Oral triptan

Nasal spray/subcutaneous triptan

Initial consultation

Initial treatment

Rescue

Rescue

Behavioural/complementary therapies

Copyright MIPCA 2002, all rights reserved

Aspirin/NSAID (large dose)Aspirin/paracetamol plus anti-emetic

Paracetamol plus isometheptane

Oral triptan

Initial treatment

Follow-up treatment

Oral triptanAlternative oral triptan

Nasal spray/subcutaneous triptan

Rescue

If unsuccessful

Consider prophylaxis +acute treatment for

breakthrough migraineattacks

Frequent headache(i.e. 4 attacks per month)

Consider referralChronic daily

Headache (CDH)?

Migraine

If unsuccessful

If unsuccessful

Initial treatment


If management unsuccessful

Implementation of guidelines

• Primary care headache team– GP, practice nurse, ancillary staff and sometimes

pharmacist (core team)– Pharmacist – Community nurses– Optician – Dentist – Complementary practitioners– Specialist physician (additional resource)

Associate team members

Pharmacist

Community nurse

Optician

Dentist

Complementary practitioner

Patient

Primary care physician

Practice nurse

Physician with expertise in headache:

GP; PCT; specialist

Ancillarystaff

Primary care Specialist care

Associate team Core team


Patient checklist

Use of patient checklist

Pre-consultation• Identification of headache as an issue by the

patient / doctor / nurse / pharmacist• Making a special appointment to see the

doctor about your headache• Completion of the patient checklist by the

patient • Bring completed checklist to consultation• Use by the headache team to initiate

management

Content of patient checklist

• Headache features– Aid to diagnosis

• Headache symptoms– Description and severity

• Medication use– Effectiveness and tolerability– OTC– Prescription

Issues with patient checklist

• Is it too long?– Briefer version needed?

• Need for validation– Road test with a group of patients?– Publishing of data will help endorse use

Headache diary

Headache diary

• Suitable for use in primary care

• Patient-held long-term diary

• Comprehensive and definitive

• When to use:– Baseline assessments– Treatment choice– Follow-up

Headache diary - content

• Patient details and appointment record• Daily diary:

– Headache and other symptoms– Burden– Medications used– Other relevant information

• Monthly analysis• Yearly calendar• Self-rating of headache management

Patient guidelines

Pre-consultation

• First medical contact for headache– Opportunistic or specific– GP, nurse, pharmacist– Other healthcare professional

• e.g. dentist, optician, gynaecologist• Patient support group

– Migraine Action Association

Pre-consultation

Patients’ actions

Patient checklist / diary

Nurse

Doctor

Contacts

Pharmacist

Make appointment to see doctor/nurse

Pre-consultation

Other healthcare professional

Migraine ActionAssociation

The first consultation

• Meet with the practice nurse to evaluate checklist / diary– Complete headache history questionnaire

• Agree terms of mutual respect and working in partnership with the doctor

• Talk to the doctor about:– Headache features– Medications used and their effects– Your expectations of treatment

• Ask for information• Commit to, and take charge of your own

management• Agree targets and procedures• Talk to the practice specialist headache patient

Diagnostic procedures

• Provide full and accurate information

• Agree to complete a headache diary and/or an impact questionnaire if asked to do so

• Patient needs to be motivated and accept a joint effort is required

Initial management

• Provide full and accurate information

• Agree to complete a headache diary and/or an impact questionnaire if asked to do so

• Agree targets and keep expectations realistic

Initial treatments

• Take your medications as prescribed• Keep a record of treatment efficacy and any

side effects– Headache diary

• Consider lifestyle alterations if suggested • Also use complementary therapies if you

wish but keep your doctor informed and tell your therapist about any medication you are taking

First headache consultation

(Screening, diagnosis, management)

Patients’ actions

Headache diary

Headache history

Impact questionnaire

Specialist patient

Nurse

Doctor

Contacts

Patient checklist / diary

The first consultation

Make appointment for follow-up

Roles of the healthcare professionals at the 1st consultation

• Nurse– Screening (checklist, history, impact)– Provision of advice (lifestyle and non-

prescription therapies)

• GP– Diagnosis– Management

Follow-up

• Make and attend follow-up appointments• Ask questions if unsure of anything• Complete headache diaries and impact

questionnaires as requested• Be aware that the headache may change over

time• Be honest about treatment effects and your

preferences• Do not overuse medications• Review with the specialist patient

Follow-up

Patients’ actions

Headache diary


Specialist patient

Nurse

Doctor

Contacts

Headache diary


Follow-up

Make further follow-up

appointments

Patient / professional responsibilities:Pre-consultation

Patient• Identification of headache as

an issue by the patient / doctor / nurse / pharmacist

• Make a special appointment to see the doctor about your headache

• Complete the patient checklist that the practice nurse gives you

• Take time to prepare what you want to say

Doctor / nurse• Hold special headache

consultations• Hold, explain and give out

patient checklist form• Arrange for a specialist

patient to be available

Patient / professional responsibilities:The first consultation

Patient• Meet with the practice nurse to

evaluate checklist– Complete headache history

questionnaire• Agree terms of mutual respect and

working in partnership with the doctor

• Talk to the doctor about:– Headache features– Medications used and their effects– Your expectations of treatment

• Ask for information• Commit to, and take charge of your

own management• Agree targets and procedures• Talk to the practice specialist

headache patient

Doctor / nurse• Review patient checklist and

complete headache history questionnaire

• Give out headache diary and impact questionnaire

• Provide information, education and guidance

• Agree terms of mutual respect and working in partnership

• Allow sufficient time for consultation

• Communicate effectively with the patient

• Set targets and procedures• Diagnosis• Management strategy• Prescribe treatments• Refer to a specialist patient

Patient / professional responsibilities:Diagnostic procedures

Patient• Provide full and

accurate information• Agree to complete a

headache diary and/or an impact questionnaire if asked to do so

Doctor• Conduct diagnostic

screening• Confirm diagnosis• Listen to what the

patient tells you

Patient / professional responsibilities:Initial management

Patient• Provide full and accurate

information• Agree to complete a

headache diary and/or an impact questionnaire if asked to do so

• Agree targets and keep expectations realistic

Doctor

• Assess illness severity accurately

• Provide therapy appropriate to the patient’s individual needs and preferences

• Set targets and discuss expected outcomes

• Provide sufficient treatment for at least 1 month

Patient / professional responsibilities:Treatments

Patient• Take your medications as

prescribed• Keep a record of treatment

efficacy and any side effects• Consider lifestyle alterations

if suggested• Also use complementary

therapies if you wish but keep your doctor informed and tell your therapist about any medications you are taking

Doctor• Prescribe acute medication

and behavioural therapies to all patients

• Prescribe additional prophylaxis if warranted

• Take account of the patient’s lifestyle needs

• Advise of expected side effects

• Allow patients to use complementary therapies

Patient / professional responsibilities:Follow-up

Patient• Make and attend follow-up

appointments• Ask questions if unsure of

anything• Complete headache diaries

and impact questionnaires as requested

• Be aware that the headache may change over time

• Be honest about treatment effects and your preferences

• Do not overuse medications• Review with the specialist

patient

Doctor / nurse• Organise regular follow-up

consultations• Review and give out follow-

up assessment tools– Headache diaries– Impact questionnaires

• Adapt management to changes in the illness or the patient’s circumstances

• Monitor therapy regularly and switch if necessary

• Beware of CDH developing

Finalisation of the MIPCA / MAA headache diary

Dr Bill Laughey

The MIPCA diary project

• Aim: to produce one or more diaries suitable for use in primary care for all patients with headache

• Project started in 2002

• Project leaders– Dr Bill Laughey – Dr Sue Lipscombe– Ms Ann Turner

Who are the diaries for?

• The patient

• The doctor / health professional

• Both

What is the diary for?

• Recording data– Triggers, patterns, results of medication,

frequency of medication taken

• To make the patient feel the healthcare professional is interested

• To help the healthcare professional make lifestyle and medication suggestions

• To be a patient-held record of their personal headache history

When should a diary be used?

• Initial evaluation of the patient– Baseline assessments– Helping the choice of initial medications

• In follow-up– To record the progression of the headache– To monitor the response to therapy– To help in the choice of appropriate

medications

Headache diary

• Beneficial for the prospective management of migraine

• Type of diary which can be used– Patient-held long-term diary for continual use,

containing basic information on patterns of headache

– Can also be used over a specific timescale for intense monitoring

• Data from the diary can be used to individualise follow-up treatment decisions

MIPCA diary

• Basic information• Appointment record• Day-by-day diary• Monthly analysis• Yearly calendar for month-by-month analysis• Informative leaflet on headaches (use MAA

document in their 2003 diary)

• Produced as a plastic-covered booklet that individual pages can be inserted into

Basic information

Name: . . . . . . . . . . . . . . Date of birth . . . . . .

Month: . . . . . . . . . . . . . . Year: . . . . . . . . . . . . .

Regular medication (headache): . . . . . . . . . . . . . . . . . .

(prescription/ non-prescription)

Dose: . . . . . . . . Date of last prescription: . . . . . . . . . . .

Regular medication (non-headache): . . . . . . . . . . . . . . . .

Appointment record

Patient: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Doctor/Nurse . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Practice Tel no: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Your next appointment is:Date: . . . . . . . . . . . . . . . . . . . . . . . . . . Time: . . . . . . . . . . . . . . . . . . .Date: . . . . . . . . . . . . . . . . . . . . . . . . . . Time: . . . . . . . . . . . . . . . . . . .Date: . . . . . . . . . . . . . . . . . . . . . . . . . . Time: . . . . . . . . . . . . . . . . . . .Date: . . . . . . . . . . . . . . . . . . . . . . . . . . Time: . . . . . . . . . . . . . . . . . . .Date: . . . . . . . . . . . . . . . . . . . . . . . . . . Time: . . . . . . . . . . . . . . . . . . .

Please tell us in good time if you cannot attend.Thank you

(monitor for drop outs from care)

Daily diary: Core questions

Day 1 2 3 4 5, etc

Monthly analysis

Headache present (Y/N)

Start time (am / pm)

Headache duration (h)

Peak severity (mild / mod / mod-sev / sev / excruciating)

Medications taken for headache (list and dose)

Effectiveness of medications (excellent / good / reasonable / poor / nil)

Daily diary: Generic headache questions

Day 1 2 3 4 5, etc Monthly analysis

Presence of non-headache symptoms (list)

Presence of factors that trigger the headache (list)

Time lost from normal activities (h)

Side effects of medications (list)

Menstrual period present (Y/N)

Other illnesses (list)

Other relevant information (list)

Yearly calendar

Factor Jan Feb Mar Apr May

Total number of headaches

Days with headache

Ave duration of headache

Ave severity of headache

Days with impaired function

Days of medication

Total dose

Total number of tablets

Best medication

Headache-free days

Normal function days

Self-rating of headache management

Rate your relief medication

Question Yes No

1. Does your medication allow you to function normally within 2 hours of dosing?

2. Does your medication give some degree of relief in at least 2 headaches out of 3?

3. Are you satisfied with your relief medication?

4. Do you have no bothersome side effects?

If you answered No to any of these questions, please see your doctor

Rate your preventative medication

Question Yes No

1. Has your preventative medication at least halved the number of headaches you have per month?

2. Are you satisfied with your preventative medication?

If you answered No to any of these questions, please see your doctor

Rate the impact of your headache

Question Yes No

1. Does your headache significantly interfere with your work and/or your leisure time?

2. Does your headache significantly interfere with your sense of emotional well-being?

3. Do you have any other concerns which you think you should mention to your doctor?

If you answered Yes to any of these questions, please see your doctor

Next steps

• Production of finalised diary• Testing of the diary in the clinic

– Reliability / validity / clinical utility

• Publication of results• Production of finalised diary

– Sponsorship?

• Distribution and PR– Medical and general media

Aspirations for diary

• Sustainable – year or more

• Comprehensive – daily, monthly, yearly

• Adaptable – e.g. photocopy more sheets

• Provide Information – more than a record

Information content of diary

• About this diary

• About MAA

• About MIPCA

• Migraine and headache information

• How to get the most from your GP

• Useful resources

Daily record suggestion

• Headache yes/no• Migraine yes/no• Severity• Nausea/Vomiting • Dislike Light, Noise, Smell• Aura: yes/no• Medication name and amount• Medication effective: yes/no• Period: yes/no• Notes: e.g. Triggers

Issues relating to the diary

• Too complicated for the average patient?• To complicated to complete during a

headache?• Monthly and annual analyses will need to

completed by a GP / nurse• Problems with self-rating

– Treatments may differ with different situations

Discussion session:

Roles of the specialist headache patientSetting up specialist headache patient

services

Defining the roles of the specialist headache patient - 1

• Mentor for newly diagnosed headache patients– Practical support

• Encourage diary keeping• Exchange ideas for treatment (acute and preventative)

• Role in the clinic service– Triage agency

Defining the roles of the specialist headache patient - 2

• Developing networks of care– Holding patient information sheets

• Development of local strategies– Management– Research– Audit

Implementation of a specialist headache patient service

• Accreditation • Development of patient groups / meetings

– How best to conduct patient meetings– Small meetings in surgeries?

• Development of a course / syllabus– Via MIPCA / MAA?

• Dissemination– Media– Training

Expert Patient Programme


• Department of Health led initiative – not disease specific

• Pilot phase 2002-2004• Mainstreamed NHS 2007• 2 senior trainers UK wide (Stanford

University-trained assessors/quality management of courses)

• 2 trainers per PCT (DOH aim)• Volunteer tutors (delivering in community)


• Recruit volunteer tutors(must have long term condition)

• 4-day residential training course• Must deliver 2 community based courses• Must be assessed by lead trainers• Courses consist of 6 x two and half hour

sessions• Generic courses• 7th session condition specific


• Currently 500 volunteers UK wide

(although mainly England)• Includes Arthritis Care, Endometriosis

Society, MS Society, Parkinson’s Disease Society

• 2 tutors attached to each PCT• Each course delivered by 2 tutors


Training delivered:• Overview of self-

management• Chronic health conditions• Relaxation/cognitive

symptom management• Feedback/problem solving• Anger/fear/frustration• Fitness/exercise• Better breathing• Fatigue• Nutrition• Living wills/power of

attorney

• Community resources• Communication• Medication• Making treatment decisions• Depression• Informing the health and

social care team• Working with your health

and social care professionals

• Future plans


Key benefits of training:• Reduced severity of symptoms such as levels of

pain• Reduced levels of depression, fatigue and anxiety• Better medication compliance and reduction in

medication intake such as use of painkillers• Reduced visits to GPs, A&E and Outpatients• Reduction in length of stay in hospital• Better communication with professionals• Improvement in lifestyle• Enhanced quality of professional-patient

relationships and of consultations


Key benefits of training• Improvement in lifestyle and behaviours

e.g. relaxation, exercise, diet• Improved life control and activity• Improved resourcefulness and life

satisfaction• Greater self-efficacy, independence and

mobility• Participants may find employment or

become more active in the community


Five-core self management issues:

• Problem-solving• Decision-making• Resource utilisation• Developing effective partnerships with care

professionals• Taking action


CostsGeneric self-management programme

• EPP recommend using established deliverers e.g. Arthritis Care for training

• £2500 per group of 10-18 on 4-day residential course to train as tutors

• Must then deliver 2 courses in community for sufferers of long term conditions

• LMCA approximate total cost of training and delivering courses 2 Tutors x 2 courses = £7000


“You can break the pain cycle”

• One day course of approximately four and half hours.Group size as before 10-18

• Aims to teach self-management of pain only• Often used as taster for full course; or for

participants who cannot attend the full course

Cost = £1000


Empowering the migraine and headache patient

• Is the Department of Health programme appropriate for migraine/headache patients?

• Do we need to develop an alternative programme that is disease-specific and may encompass the relevant elements of the EPP programme?


The way forward-suggestions

• Develop and deliver a pilot scheme of 7 one day courses at locations throughout the country that are a combination of education on headache management, elements of the generic self-management programme and awareness raising of the Expert Patient Programme

• The courses will aim to give each participant information on managing their headache/migraine more effectively but may also encourage them to enrol in a generic Expert Patient course and possibly to become an Expert Patient tutor.

Cost of 7 one day courses would be approximately £30K


The way forward - suggestions

• Buy into the EPP or courses delivered by e.g. Arthritis Care to develop our ‘own’ tutors who in turn would deliver courses in their community

• Encourage members to access courses already being delivered through EPP and PCTs and which are freely available (MAA could do this via website and newsletter)

• Develop and deliver our own disease-specific courses

Documents

MIGRAINE IN PRIMARY CARE ADVISORS Migraine Action Association Northampton, 13 June 2003 10.30-3.30 pm Guidelines for the development of the specialist