Background
Domain A: | Diagnostic accuracy, therefore asking whether diagnosis were made according to the IHS criteria, documented during the first visit and reviewed during the follow-ups and supported by the diagnostic diaries. |
Domain B: | Issues of the individualized management including waiting time, use of diaries and instruments of headache related disability in treatment plans. |
Domain C: | Availability and utilization of urgent and specialist referral pathways. |
Domain D: | Patient’s education and reassurance |
Domain E: | Convenience, comfort and welcoming of the clinic |
Domain F: | Patient’s satisfaction |
Domain G: | Equity and efficiency of the headache care including access to care, wastage of resources, rate of technical investigations and costs. |
Domain H: | Outcome measures including clinical parameters but also measures of disability and quality of life. |
Domain I: | Safety of care |
Methods
Ethics approval
Study settings and participating centres
No | Country | City | Centre name | Description | Levela
|
---|---|---|---|---|---|
1 | Austria | Linz | Headache Medical Center Linz Seilerstätte | Headache service run by one headache-experienced neurologist with link to the department of neurogeriatric medicine in the Hospital Barmherzige Schwester Linz, link to multidisciplinary approach (headache nurse, psychologist and physiotherapist) within the hospital. | 3 |
2 | Belgium | Ghent | Ghent University Hospital, Department of Neurology | Training hospital-based headache service run within the neurology department by one headache-experienced neurologist; most patients are seen by supervised residents (of whom there are up to 6). No multidisciplinary approach: the service has a study nurse but no psychologist or physiotherapist. | 3 |
3 | Denmark | Copenhagen | Danish Headache Centre, University of Copenhagen, Glostrup | Academic tertiary headache centre in a university hospital, and a national referral centre for patients with refractory or rare headache disorders and cranial neuralgias. Staffed by 7 headache-experienced neurologists, 3 psychologists, 3 physiotherapists and 4 study nurses. | 2 and 3 |
4 | Estonia | Tartu | Tartu University Clinics, Department of Neurology, Headache Clinic | Academic university-based clinic run by two physicians and two headache nurses. Options within the hospital for multidisciplinary care avaliable with limitations: physiotherapy must be paid for by patients (not covered by national insurance); specialist psychology (again to be paid for) is available from another clinic of the institution. | 3 |
5 | Georgia | Tbilisi | Aversi Clinic | Operated within the private sector as a stand-alone headache centre by 3 headache-experienced neurologists supported by a psychologist, physiotherapist and study nurse. | 2 |
6 | Germany | Munich | Upper Bavarian Headache Center, Hospital of the Ludwig-Maximilians-University (LMU) Munich, Campus Großhadern | Hospital-based headache service provided by 3 headache-experienced physicians supported by one psychologist, 3 physiotherapists and a study nurse. | 3 |
7 | Unna | Evangelisches Krankenhaus Unna, Department of Neurology | Hospital-based headache clinic run within the department of neurology by one headache-experienced neurologist supported by 3 psychologists, physiotherapists and a study nurse. | 2 | |
8 | Italy | Rome | Regional Referral Headache Centre, Sant’Andrea Hospital | Hospital-based headache service run by 4 headache-experienced physicians (2 internists, one rheumatologist, one psychiatrist) supported by one post-graduate internist trainee, 3 psychologists and 2 nurses. | 3 |
9 | Norway | Trondheim | Department of Neuroscience, Norwegian University of Science and Technology; Norwegian Advisory Unit on Headache, St Olavs University Hospital | University hospital-based service and national advisory centre run by two headache-experienced neurologists with support from a specialist nurse. Hospital provides all options for multidisciplinary care. | 3 |
10 | Portugal | Lisbon | Hospital Da Luz Headache Center | Private hospital-based service run by 2 headache-experienced neurologists. Hospital is not departmentalized: many specialties share space; 6 gynaecologists, a dentist, a maxillofacial surgeon, 2 physiatrists and 2 psychiatrists have special interests in headache, offering fast referral. Four physical therapists, a psychologist and a nurse also see headache patients. | 3 |
11 | Russian Federation | Moscow | Alexander Vein Headache Clinic | Private headache clinic employing 9 neurologists experienced in headache medicine, supported by 4 psychiatrists, 3 manual therapists, a biofeedback specialist and acupuncture specialists. The Clinic also runs a Botox headache service. | 2 and 3 |
12 | Russian Federation | Moscow | University Headache Clinic | Private university-based headache service and training centre run by 5 headache-experienced neurologists supported by 2 psychiatrists and 2 physiotherapists and nurses. | 3 |
13 | Serbia | Belgrade | Neurology Clinic Clinical Centre of Serbia, Faculty of Medicine, University of Belgrade | University-based headache service run by 2 headache specialists with part-time engagement, without the support of a trained nurse. | 3 |
14 | Turkey | Istanbul | Istanbul University, Department of Neurology | University-based headache service and training centre run by 5 headache experts supported by a psychologist, study nurse and nurse for assisting in interventional treatments. | 3 |
Study participants
Study instruments
Indicator | Measure | Application | |
---|---|---|---|
Domain A. Accurate diagnosis is essential for optimal headache care | |||
A1 | Patients are asked about the temporal profile of their headaches | a) Duration of presenting complaint is recorded in patient’s record (yes/no) b) Frequency or days/month of symptoms is recorded in patient’s record (yes/no) | Review of relevant fields in records of retrospective (random or consecutive) sample of patients (n = 50) |
A2 | Diagnosis is according to current ICHD criteria | a) Diagnosis is recorded in patient’s record (yes/no) b) Diagnostic record uses ICHD terminology (yes/no) | |
A3 | A working diagnosis is made at the first visit | Working diagnosis at first visit is recorded in patient’s record (yes/no) | |
A4 | A definitive diagnosis is made at first or subsequent visit | Definitive diagnosis is recorded in patient’s record or, if not, an appointment for review has been given (yes/no) | |
A5 | Diagnosis is reviewed during later follow-up | Diagnostic review during follow-up is routinely undertaken (yes/no) | Enquiry of doctors |
A6 | Diaries are used to support or confirm diagnosis | The service has a diagnostic diary available and doctors are aware of its availability (yes/no) | Enquiry of service manager and doctors into availability |
Domain B. Individualized management is essential for optimal headache care | |||
B1 | Waiting-list times for appointments are related to urgency of need | a) A formal triage system exists (yes/no) b) To expedite appointments in cases of perceived urgency (yes/no) | Enquiry of doctors, service manager and appointments administrator |
B2 | Sufficient time is allocated to each visit for the purpose of good management | a) Actual time (minutes) per visit is recorded by patient in exit questionnaire b) Satisfaction (yes/no) with actual time is recorded by patient in exit questionnaire c) HCPs express overall satisfaction (yes/no) | a/b) Review of questionnaires from prospective consecutive sample of patients (n = 50) c) Enquiry of HCPs |
B4 | Treatment plans include psychological approaches to therapy when appropriate | Access route to psychological therapies exists and doctors are aware of its availability (yes/no/not applicable) | Enquiry of service manager and doctors into availability |
B5 | Treatment plans reflect disability assessment | An instrument for disability assessment is available and HCPs are aware of its availability (yes/no) | Enquiry of service manager and doctors into availability |
B6 | Patients are followed up to ascertain optimal outcome | a) The service permits follow-up as needed (yes/no) b) A follow-up diary and/or calendar is available (yes/no) | Enquiry of service manager and HCPs |
Domain C. Appropriate referral pathways are essential for optimal headache care | |||
C1 | Referral pathway is available from primary to specialist care | A usable pathway exists and doctors and appointments administrator are aware of its existence (yes/no) | Enquiry of service manager, doctors and appointments administrator into availability |
C2 | Urgent referral pathway is available when necessary | A usable pathway exists and doctors and appointments administrator are aware of its existence (yes/no) | Enquiry of service manager, doctors and appointments administrator into availability |
Domain D. Education of patients about their headaches and their management is essential for optimal headache care | |||
D1 | Patients are given the information they need to understand their headache and its management | a) Information leaflets are available (yes/no) and doctors and appointments administrator are aware of their existence (yes/no) b) Doctors provide patients with information (yes/no) c) Information was understandable (yes/no) d) Amount of information was about right (yes/no) | a) Enquiry of service manager, doctors and appointments administrator into availability b) Review of questionnaires from prospective consecutive sample of patients (n = 50) c/d) Review of questionnaires from prospective consecutive sample of patients (n = 50) |
D2 | Patients are given appropriate reassurance | Satisfaction (yes/no) with reassurance given is recorded by patient in exit questionnaire | Review of questionnaires from prospective consecutive sample of patients (n = 50) |
Domain E. Convenience and comfort are part of optimal headache care | |||
E1 | The service environment is clean and comfortable | a) Satisfaction (yes/no) with cleanliness and comfort is recorded by patient in exit questionnaire b) HCPs are satisfied with cleanliness and comfort (yes/no) | a) Review of questionnaires from prospective consecutive sample of patients (n = 50) b) Enquiry of HCPs |
E2 | The service is welcoming | Satisfaction (yes/no) with welcome is recorded by patient in exit questionnaire | Review of questionnaires from prospective consecutive sample of patients (n = 50) |
E3 | Waiting times in the clinic are acceptable | a) Actual waiting time (minutes) per visit is recorded by patient in exit questionnaire b) Satisfaction (yes/no) with waiting time is recorded by patient in exit questionnaire c) HCPs are satisfied with waiting times (yes/no) | a/b) Review of questionnaires from prospective consecutive sample of patients (n = 50) c) Enquiry of HCPs |
Domain F. Achieving patient satisfaction is part of optimal headache care | |||
F1 | Patients are satisfied with their management | Satisfaction (yes/no) with overall management is recorded by patient in exit questionnaire | Review of questionnaires from prospective consecutive sample of patients (n = 50) |
Domain G. Optimal headache care is efficient and equitable | |||
G1 | Procedures are followed to ensure resources are not wasted | A protocol to limit wastage exists (yes/no) | Enquiry of service manager |
G2 | Costs of the service are measured as part of a cost-effectiveness policy | A record of input costs exists (yes/no) | Enquiry of service manager |
G3 | There is equal access to headache services for all who need it | A policy to ensure equal access exists (yes/no) | Enquiry of service manager and HCPs |
Domain H. Outcome assessment is essential in optimal headache care | |||
H1 | Outcome measures are based on self-reported symptom burden (headache frequency, duration and intensity) | An outcome measure (HURT or similar) is available and HCPs are aware of its existence (yes/no) | Enquiry of service manager and HCPs |
H2 | Outcome measures are based on self-reported disability burden | An outcome measure (HALT or similar) is available and HCPs are aware of its existence (yes/no) | |
H3 | Outcome measures are based on self-reported quality of life | An outcome measure (WHOQoL or similar) is available and HCPs are aware of its existence (yes/no) | |
Domain I. Optimal headache care is safe | |||
I1 | Systems are in place to be aware of serious adverse eventsa
| A system or protocol exists and HCP are aware of its existence (yes/no) | Enquiry of service manager and HCPs |
Procedure
Data management and analysis
Highlighted problems and feedback from centres
Results
Headache centre | Austria Linz | Belgium Ghent | Denmark Copenhagen | Estonia Tartu | Georgia Tbilisi | Germany Munich | Germany Unna | Italy Rome | Norway Trondheim | Portugal Lisbon | Russia Moscow AV | Russia Moscow U | Serbia Belgrade | Turkey Istanbul | |
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Staff | Manager, n | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 | 1 |
Administative staff, n | 1 | 3 | 1 | 1 | 2 | 2 | 1 | 1 | 0 | 8 | 2 | 3 | 4 | 1 | |
Doctors, n | 1 | 7 | 4 | 2 | 2 | 3 | 1 | 2 | 2 | 4 | 3 | 5 | 3 | 2 | |
Other HCPs, n | 1 | 0 | 16 | 2 | 2 | 4 | 2 | 3 | 1 | 3 | 1 | 4 | 0 | 2 | |
Patients | Patients, n | 58 | 50 | 51 | 50 | 50 | 53 | 50 | 51 | 30 | 52 | 50 | 50 | 50 | 50 |
Mean age (years) ± SD | 38.8 ± 16.6 | 40.2 ± 15,3 | 46.3 ± 15.6 | 39.8 ± 14.7 | 35.5 ± 13.2 | 40.6 ± 15.4 | 41.2 ± 14.9 | 42.8 ± 13.9 | 42.8 ± 14.4 | 36.7 ± 10.9 | 42.8 ± 12.9 | 34.9 ± 10.5 | 44.4 ± 13.4 | 38.8 ± 10.2 | |
Mean duration of headache, years ± SD | 13.4 ± 11.7 | 10.5 ± 12.1 | 12.6 ± 14.4 | 11.3 ± 11.1 | 6.8 ± 6.3 | 15.6 ± 14.1 | 12.7 ± 14.2 | 16.3 ± 12.6 | 17.6 ± 16.9 | 17.5 ± 13.2 | 13.3 ± 12.6 | 11.3 ± 9.3 | 11.6 ± 11.7 | 11.6 ± 7.7 | |
Records reviewed, n | 58 | 50 | 50 | 50 | 50 | 50 | 49 | 51 | 34 | 51 | 50 | 50 | 50 | 50 | |
Diagnoses, n | |||||||||||||||
Migraine | 36 | 36 | 17 | 26 | 34 | 44 | 39 | 36 | 27 | 41 | 30 | 41 | 22 | 38 | |
TTH | 3 | 1 | 7 | 14 | 4 | 0 | 2 | 4 | 0 | 6 | 14 | 4 | 12 | 5 | |
Trigeminal neuralgia | 4 | 1 | 3 | 0 | 2 | 0 | 1 | 0 | 0 | 0 | 0 | 0 | 2 | 4 | |
Cluster headache | 2 | 3 | 7 | 0 | 2 | 1 | 2 | 0 | 2 | 1 | 3 | 0 | 4 | 1 | |
MOH | 3 | 0 | 6 | 1 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 6 | 0 | |
Other | 10 | 8 | 8 | 8 | 8 | 0 | 5 | 0 | 1 | 4 | 3 | 5 | 4 | 2 | |
Missing | 0 | 1 | 2 | 1 | 0 | 3 | 1 | 11 | 0 | 0 | 0 | 0 | 0 | 0 |
Headache centre | Austria Linz | Belgium Ghent | Denmark Copenhagen | Estonia Tartu | Georgia Tbilisi | Germany Munich | Germany Unna | Italy Rome | Norway Trondheim | Portugal Lisbon | Russia Moscow AV | Russia Moscow U | Serbia Belgrade | Turkey Istanbul |
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
A1a. Duration of complaint recorded | 100 | 88 | 100 | 100 | 72 | 78 | 98 | 92 | 100 | 100 | 56 | 100 | 100 | 94 |
A1b. Frequency of symptoms recorded | 100 | 100 | 94 | 100 | 78 | 76 | 100 | 100 | 100 | 100 | 68 | 100 | 100 | 96 |
A2a. Diagnosis recorded | 100 | 90 | 100 | 100 | 92 | 98 | 100 | 100 | 100 | 100 | 96 | 100 | 100 | 98 |
A2b. ICHD terminology used | 100 | 92 | 100 | 96 | 92 | 96 | 100 | 90 | 100 | 100 | 98 | 100 | 92 | 98 |
A3. Working diagnose at first visit recorded | 100 | 98 | 94 | 100 | 64 | 98 | 100 | 100 | 100 | 100 | 98 | 100 | 100 | 80 |
A4. Definitive diagnosis or appointment for review | 100 | 98 | 98 | 96 | 86 | 98 | 100 | 88 | 56 | 100 | 98 | 100 | 100 | 90 |
A5. Routinely diagnostic review during follow-up (doctors) | 100 | 100 | 100 | 100 | 100 | 100 | 100 | 100 | 100 | 100 | 100 | 0 | 100 | 100 |
A6. Diagnostic diaries available (manager + doctors) | 100 | 100 | 100 | 100 | 100 | 100 | 100 | 100 | 33 | 80 | 100 | 100 | 100 | 100 |
B1a. Formal triage system exists (manager + HCPs) | 100 | 90 | 67 | 0 | 0 | 100 | 100 | 75 | 100 | 100 | 67 | 100 | 88 | 100 |
B1b. It expedites appointments of urgent cases (manager + HCPs) | 100 | 100 | 80 | 50 | 0 | 100 | 100 | 100 | 100 | 92 | 67 | 56 | 100 | 100 |
B2a. Time per visit (minutes), mean ± SD | 25.5 ± 13.5 | 23.0 ± 8.0 | 20.2 ± 2.2 | 15.0 ± 5.5 | 18.6 ± 9.5 | 30.0 ± 13.8 | 12.5 ± 5.0 | 21.0 ± 4.2 | 26.2 ± 12.0 | 22.6 ± 15.9 | 31.3 ± 14.2 | 28.0 ± 16.7 | 24.0 ± 5.2 | 15.0 ± 5.6 |
B2b. Satisfaction with time per visit (patients) | 91 | 98 | 90 | 100 | 100 | 96 | 82 | 98 | 100 | 96 | 100 | 100 | 98 | 82 |
B2c. Satisfaction with time per visit (HCPs) | 100 | 83 | 65 | 50 | 75 | 86 | 100 | 100 | 100 | 85 | 100 | 100 | 33 | 50 |
B4. Access route to psychological therapies exists (manager + doctors) | 100 | 25 | 100 | 0 | 40 | 100 | 100 | 40 | 0 | 50 | 100 | 100 | 50 | 100 |
B5. Instrument for disability assessment available (manager + HCPs) | 100 | 38 | 81 | 20 | 60 | 38 | 25 | 100 | 75 | 49 | 0 | 60 | 50 | 100 |
B6a. Follow-up service of every patient who needs it (manager + HCPs) | 100 | 75 | 90 | 100 | 100 | 50 | 75 | 100 | 25 | 87 | 100 | 100 | 100 | 100 |
B6b. Follow-up diary/calender available (manager + HCPs) | 100 | 100 | 100 | 100 | 100 | 100 | 75 | 100 | 100 | 79 | 100 | 100 | 100 | 100 |
C1. Referral pathway exists (manger + HCPs) | 100 | 73 | 100 | 100 | 100 | 100 | 100 | 100 | 100 | 84 | 17 | 100 | 88 | 100 |
C2. Urgent referral pathway exists (manager + HCPs) | 100 | 80 | 83 | 100 | 80 | 33 | 100 | 100 | 100 | 84 | 33 | 67 | 88 | 100 |
D1a. Information leaflets available (HCPs) | 100 | 50 | 100 | 100 | 100 | 63 | 100 | 100 | 75 | 37 | 80 | 100 | 50 | 40 |
D1b. Doctor provides patient with information (patients) | 100 | 100 | 90 | 96 | 100 | 100 | 94 | 100 | 97 | 100 | 100 | 100 | 98 | 98 |
D1c. Information given understandable (patients) | 100 | 100 | 98 | 100 | 100 | 100 | 98 | 98 | 100 | 98 | 100 | 100 | 98 | 98 |
D1d. Amount of information about right (patients) | 100 | 98 | 89 | 96 | 92 | 98 | 85 | 98 | 97 | 94 | 98 | 98 | 94 | 82 |
D2. Patients were given reassurance (patients) | 100 | 98 | 59 | 90 | 100 | 89 | 100 | 98 | 100 | 100 | 100 | 98 | 98 | 96 |
E1a. Service environment clean and comfortable (HCPs) | 100 | 100 | 20 | 0 | 100 | 100 | 100 | 100 | 100 | 100 | 75 | 100 | 67 | 100 |
E1b. Service environment clean and comfortable (patients) | 100 | 98 | 84 | 98 | 100 | 92 | 96 | 100 | 100 | 100 | 100 | 100 | 92 | 80 |
E2. Satisfaction with welcome (patients) | 98 | 98 | 100 | 98 | 100 | 96 | 100 | 100 | 100 | 98 | 100 | 100 | 98 | 100 |
E3a. Waiting time (minutes), mean ± SD | 6.1 ± 1.2 | 17.0 ± 1.5 | 13.5 ± 1.3 | 13.3 ± 0.5 | 14.8 ± 0.2 | 12.6 ± 1.2 | 15.1 ± 1.2 | 18.2 ± 0.7 | 6.2 ± 1.3 | 15.6 ± 3.8 | 4.8 ± 0.7 | 4.4 ± 0.2 | 42.6 ± 5.4 | 33.1 ± 5.4 |
E3b. Satisfaction with waiting time (patients) | 100 | 88 | 85 | 78 | 92 | 96 | 88 | 92 | 97 | 67 | 100 | 98 | 70 | 72 |
E3c. Satisfaction with waiting time (HCPs) | 100 | 17 | 50 | 25 | 25 | 100 | 100 | 60 | 0 | 85 | 100 | 100 | 0 | 50 |
F1. Satisfaction with overall management (patients) | 93 | 98 | 98 | 100 | 100 | 100 | 100 | 0,98 | 100 | 100 | 100 | 96 | 100 | 98 |
G1. Protocol to limit wastage exists (manager) | 0 | 0 | 100 | 100 | 0 | 0 | 0 | 100 | 100 | 0 | 0 | 100 | 100 | 100 |
G2. Record of input costs exists (manager) | 0 | 0 | 100 | 100 | 100 | 0 | 0 | 100 | 100 | 0 | 100 | 100 | 0 | 0 |
G3. Policy to ensure equal access exists (manager + HCPs) | 100 | 63 | 67 | 80 | 60 | 25 | 100 | 50 | 50 | 50 | 40 | 0 | 75 | 100 |
H1. HURT or similar (manager + HCPs) | 100 | 13 | 76 | 80 | 0 | 50 | 75 | 50 | 50 | 75 | 60 | 100 | 75 | 100 |
H2. HALT or similar (manager + HCPs) | 100 | 25 | 70 | 80 | 0 | 57 | 0 | 50 | 50 | 75 | 40 | 70 | 75 | 40 |
H3. WHOQoL or similar (manager + HCPs) | 100 | 0 | 76 | 80 | 40 | 57 | 0 | 50 | 0 | 63 | 20 | 100 | 25 | 0 |
I1. Protocol for reporting serious adverse events exists (manager + HCPs) | 0 | 13 | 90 | 60 | 100 | 0 | 0 | 83 | 25 | 0 | 0 | 60 | 75 | 100 |
Discussion
-
Do waiting-list times for appointments actually reflect urgency of need?
-
Do treatment plans follow evidence-based guidelines according to diagnosis?
-
Are patients not over-investigated (special investigations of concern include MRI, CT, EEG, Doppler, evoked potentials, skull and neck xrays)?
-
Are patients not over-treated (over-treatment may mean excessive use of drugs likely to induce medication overuse headache (MOH), overdosage with potentially harmful drugs such as ergotamine or steroids, use of prophylactics for infrequent headache, use of prophylactics for the wrong diagnosis, or use of non-evidence-based treatments that are unlikely to be effective and may jeopardize safety)?