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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
Copyright MIPCA 2002, all rights reserved
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
Copyright MIPCA 2002, all rights reserved
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
Impact questionnaire
Specialist patient
Nurse
Doctor
Contacts
Headache diary
Impact questionnaire
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
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)
Expert Patient Programme
• 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
Expert Patient Programme
• 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
Expert Patient Programme
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
Expert Patient Programme
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
Expert Patient Programme
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
Expert Patient Programme
Five-core self management issues:
• Problem-solving• Decision-making• Resource utilisation• Developing effective partnerships with care
professionals• Taking action
Expert Patient Programme
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
Expert Patient Programme
“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
Expert Patient Programme
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?
Expert Patient 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
Expert Patient Programme
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