Health atlas for chronic diseases

Annually, approximately 28,000 patients had repeated contact with the health service due to epilepsy. Of these, approximately 4,900 were children aged 0–17 and 5,800 were elderly aged 65 and over. There were approximately the same number of men and women in the sample and the average age was 42 years.

Overall, the number of patients per 1,000 inhabitants varied very little between the referral areas. For children and the elderly, however, there was some variation. For children, the patient rate varied from 5.6 per 1,000 children for residents in the referral areas Fonna and Innlandet to 3.2 per 1,000 children for residents in the referral area Lovisenberg, i.e. with a factor of 1.75. For the elderly, the patient rate varied by a factor of 1.8 – from 8.2 per 1,000 elderly for residents in the referral area Lovisenberg to 4.6 per 1,000 elderly for residents in the referral area Fonna.

The vast majority of patients in the sample had contacts in both the general practitioner and specialist healthcare services during the period. The proportion of patients who had contacts only in the general practitioner service varied by a factor of 2.2 – from 19.2% in the referral area Østfold to 8.6% in the referral areas Diakonhjemmet and Nordland. Nationally, the proportion of patients who had contacts only in the general practitioner service was higher for the elderly (19.7%, compared with 14.3% for the entire patient sample) and very low for children (2.6%).

Patients with epilepsy often need help with more than seizure control. Additional challenges such as side effects of medication, other chronic diseases or congenital conditions, functional impairments and psychosocial challenges are common. A survey of patients with epilepsy and their relatives in 2017 showed that many need more information about their own illness. Thorough information and an individually adapted and holistic treatment are important for coping with everyday life with epilepsy. Adequate follow-up both at the GP and in the specialist health service and good cooperation between them provide a basis for coping and for well-adapted treatment.

The patients in the sample received an average of 2.5 contacts per year at a specialist or general practitioner. Around half of the contacts were with a specialist. There was little variation between the referral areas in overall usage of consultations with a general practitioner or specialist. The proportion of follow-up consultations between the general practitioner and specialist health services varied somewhat between the referral areas. The proportion of all consultations that were carried out with a specialist varied from 36% for residents in the referral area Finnmark to 57% for residents in the referral areas Lovisenberg and Diakonhjemmet.

The proportion of follow-up consultations between the general practitioner and the specialist health service was somewhat different for children and the elderly than for the patient population as a whole. Children had fewer follow-ups with general practitioners (on average 0.9 contacts per year) and more with specialists (on average 2.4 contacts per year), while the elderly had fewer follow-ups with specialists (on average 0.7 contacts per year). For the elderly, there was considerable geographical variation in overall use of follow-up consultations with either a general practitioner or a specialist.

If epilepsy is suspected, the patient must be referred to a specialist. This will involve an EEG examination and in some cases also an MRI examination. Epilepsy is usually treated with drugs to prevent seizures. There are a number of different drugs, and it may be necessary to both try different drugs and to adjust the dosage before achieving good seizure control with an acceptable level of side effects. According to the Norwegian Knowledge-based guideline on epilepsy, all patients with chronic epilepsy should have an annual check-up with a specialist, in addition to follow-ups with a GP. The frequency of check-ups must otherwise be adapted to the individual's needs.

There was little variation in the usage of specialist contacts for the patient group as a whole (see also separate results for children and the elderly). The vast majority of specialist consultations for epilepsy were given in hospitals. The variation in the usage of specialist contacts is largely due to the variation in the average number of contacts per patient - from 1 to 1.5 contacts per year. The low number of contacts per patients in certain referral areas indicates that not all patients receive an annual check-up with a specialist, as recommended in the guideline.

Medication is an important part of the follow-up in the specialist healthcare service for patients with epilepsy. About a third of epilepsy patients, however, do not become seizure-free with such treatment. In the guideline, it is recommended that patients who do not achieve satisfactory seizure control with drug treatment should be considered for epilepsy surgery. Surgery is the only potentially curative treatment for epilepsy. The guideline estimates a need for 50–125 epilepsy operations annually.

The specialized hospital for epilepsy at Oslo University Hospital states that, in the period 2019–2021, there were approximately 135 patients per year that was considered for surgery. Only a small proportion of these received surgery, around 25–35 patients.

Children with epilepsy will usually be followed up by a paediatrician, while adult patients are followed up by a neurologist. This may be a reason for differences in the amount of services children and adults with epilepsy receive in the specialist health service.

The number of specialist consultations per 1,000 children was twice as high for children in the referral area Nordland as for children in the referral area Førde. However, the number of specialist consultations per 1,000 children varied widely from year to year, which may indicate a significant element of random variation. Nationally, the rate was higher in 2020 and 2021 than in 2019.

The average number of contacts per patient also varied quite a bit - from less than 2 contacts per year for children living in the referral areas Telemark and Førde to 3.1 contacts per year for children living in the referral area Lovisenberg. Overall, we believe that there are grounds to ask the question of whether the observed variation may be the result of different practices for the examination, diagnosis and treatment of epilepsy in children.

Epilepsy in the elderly is often related to other diseases, for example many develop epilepsy in connection with a stroke. Epilepsy can also manifest itself differently in the elderly population, which can lead to the epilepsy not being detected (Nakken et al. 2013 ). Usage of specialist consultations varied widely for the age group 65 years and older. The number of specialist consultations per 1,000 elderly was 3.8 times higher in the referral area Lovisenberg compared to the referral area Fonna.

The average number of contacts per patient also varied widely, from 1.1 contacts per year for elderly residents in the referral area Lovisenberg to 0.5 contacts per year for those in the referral areas of Vestfold, Fonna, UNN and St. Olav. This means that many elderly patients with epilepsy did not receive the minimum of one annual follow-up in the specialist health service as recommended in the Norwegian Knowledge-based guideline on epilepsy.

There is also a considerable geographical variation both with visits to general practitioners and with either general practitioners or specialists overall. The geographical variation in the usage of specialist consultations for the elderly with epilepsy is considered unwarranted. We believe that the observed variation in the usage of healthcare services for the elderly with epilepsy could be a result of different practices for the examination, diagnosis and treatment of epilepsy in the elderly.

An epileptic seizure will often lead to emergency admission to hospital, especially if the person has no history of epilepsy. Many patients will be able to become seizure-free through the use of medication, but for some patients the epilepsy is more difficult to regulate and these may need repeated emergency admissions for epileptic seizures. In rare cases, a patient may have a prolonged epileptic seizure, or several seizures with short intervals between them. This condition is called status epilepticus and requires prompt medical attention because it can be damaging to the brain and potentially fatal.

For the country as a whole, there were an average of 4,200 emergency admissions per year associated with epileptic seizures. Use of emergency admissions for epileptic seizures was twice as high for patients who live in the referral area Førde compared to the referral area Vestfold. If the referral area Førde, which had the highest rate, is disregarded the variation was more moderate. In several referral areas, including the referral area with the highest rate (Førde), there were significant changes in the rate from year to year. This indicates a significant element of random variation. Overall, we do not believe that there is sufficient grounds for characterizing the observed geographical variation in the use of emergency admissions for epileptic seizures as unwarranted.

Annually, approximately 58,000 patients had repeated contact with the health service due to migraine, corresponding to 12% of the estimated number of patients with migraine in Norway.

The patient sample consisted of approximately 80% women. We thus found that there were four times as many women as men in our sample, which is interesting in light of the assumption that twice as many women as men have migraines. The average age of the sample was 40 years.

The patient rate was stable during the period, with approximately 14 patients per 1,000 inhabitants per year nationally. The criteria for the selection (see patient selection description) means that patients with only one contact are not included in the results. There was a large increase in patients with single contacts in 2020, which is probably due to CGRP inhibitors, which are preventive drugs against migraine, becoming available with a reimbursable prescription. A specialist in neurology or a doctor at a public hospital can apply for this benefit (reimbursable prescription).

There was little geographical variation in the patient rate. The rate was lowest for residents in the referral area of Bergen, with a rate of around 11 per 1,000 inhabitants, and highest for Sørlandet with a rate of 17 per 1,000 inhabitants.

Nationally, the majority of patients (61%) received services only from general practitioners. There was large geographical variation in the annual proportion of patients in the migraine sample who had follow-up in the specialist health service. About 25% of the patients who lived in the referral area UNN had at least one contact in the specialist health service, compared to 55% of the patients living in the referral area Førde.

The severity of migraine varies, and this is probably part of the explanation for why only a small proportion of patients with migraine are followed up regularly in the health service. It is natural that less severe migraines are treated by general practitioners, but since the occurrence of severe migraines is assumed to be the same, this does not explain the geographical variation in the proportion of patients in the specialist healthcare service.

An overall measure of the burden of disease in a population is loss of life years and loss of health, also called disability adjusted life years (DALY). For Norway, migraine accounts for approximately 37,000 DALYs annually. In comparison, the corresponding figures for breast cancer and depression were 12,000 and 33,000 respectively (Ti store folkehelseutfordringer i Norge, FHI 2018). Migraine therefore contributes significantly to the burden of disease in the Norwegian population, even though the number of patients who are followed up with repeated contacts in the health service is relatively low, and the use of specialist health services is very limited.

The number of consultations per year with a diagnosis of migraine in the specialist health service increased from around 14,000 in 2019 to around 24,000 in 2021. Use of specialist consultations varied between referral areas, with an average of 2.5 times more consultations per 1,000 inhabitants for residents in the referral area Helgeland compared to UNN.

Patients with migraine residing in the referral areas UNN, Finnmark and Fonna received an average of 0.2 specialist consultations per patient. For residents of the referral area Helgeland, the corresponding figure was 0.5. Nationally, each patient in the migraine sample received an average of 0.3 specialist consultations per year.

The large increase in the use of specialist consultations during the period, also during the pandemic, may be due to the fact that new, preventive drugs against migraine became available with a reimbursable prescription late in 2019. Only a specialist in neurology or a doctor at a public hospital can apply for such benefits (reimbursable prescription). Note that the increase in specialist consultations was not the same in all referral areas, so that the geographical variation in the use of specialist consultations was higher in 2021 than in 2019.

Migraine attacks occur with different frequency and severity in different patients, and treatment and follow-up must therefore be adapted to the individual. The incidence and severity of migraine are assumed to be similar across Norway, and therefore cannot explain the variation in the use of specialist consultations.

There was high geographical variation in the use of specialist healthcare services during the period, and the variation is considered unwarranted. At the same time, the variation may reflect different speeds in the introduction of new treatment, and it is therefore possible that this variation will even out over time.

Botulinum toxin and CGRP inhibitors are preventive treatments offered on reimbursable prescription to patients with severe migraine, who have tried several different preventive treatments without sufficient effect or with unacceptable side effects.

Annually, approximately 5,400 patients with migraine were treated at least once with botulinum toxin in the specialist health service. The average age was 43 years, and 90% of those treated were women.

Around 2,500 patients were treated annually with botulinum toxin in a public hospital and around 2,900 were treated by specialists.

There was large geographical variation in the use of botulinum toxin. 17% of patients in the migraine sample living in the referral area Førde were treated with botulinum toxin, compared with 2% in Stavanger. Nationally, the proportion was around 9%.

Specialists in private practice under public funding contracts who specialize in neurology are very unevenly distributed in Norway. The proportion of patients treated by a specialist in private practice under a public funding contract therefore varies widely, from no patients living in the referral area Helgeland to 96% of patients living in the referral area Diakonhjemmet. Nationally, 53% of patients were treated by a specialist in private practice under a public funding contract.

Treatment with botulinum toxin can also be given by neurologists in private practice without a public funding contract, and data on this is not included in this report. Patients who are treated by neurologists in private practice without a public funding contract buy the drug on a reimbursable prescription, but the patient must pay for the consultation. The price for a consultation with specialists in such private practices is four to five times higher than a corresponding consultation in a public hospital or with a specialist in private practice under a public funding contract. Botulinum toxin is given 3–4 times per years, and the cost of the treatment will therefore be significant for the patient. If patients living in some referral areas have to pay significantly more for their treatment than patients living in other areas, the service is not equitable, and such treatment cannot therefore compensate for the lack of provision in publicly funded health services.

Some GPs also treat migraine patients with botulinum toxin, but unlike specialists in private practice under a public funding contract, the GPs do not have a specific tariff for such treatment, and this treatment is therefore difficult to identify in the data. We have investigated the extent of activity that is likely to be treatment with botulinum toxin at GPs, and it appears that the number of patients treated by GPs is very limited. An extract of the number of patients who obtained a prescription for botulinum toxin from the Prescription Register supports this assumption, and we therefore conclude that it is very unlikely that treatment by a general practitioner evens out the geographical variation in the use of botulinum toxin for migraine that is found in the specialist health service.

CGRP inhibitors became available by reimbursable prescription in late 2019. It is therefore possible that areas with low use of botulinum toxin had high use of CGRP inhibitors. However, an extract from the Prescription Register shows that there was also a high geographical variation in the use of CGRP inhibitors in the period, and that the use of these drugs does not equalize the geographical variation in the use of botulinum toxin. In 2020, the rate of use of CGRP inhibitors was about twice as high for residents in the referral area of Health South-East as in the referral area of Health North. Health North and Health West therefore both had the lowest proportion of patients treated with botulinum toxin, and the lowest proportion of patients treated with CGRP inhibitors.

About 12,000 of the people in the migraine sample were on sick leave each year with a diagnosis of migraine in the period 2019–2021. The average age of people who were on sick leave was 39 years, and 83% were women. On average, these patients were on sick leave five times per year, of which three had migraine as the primary diagnosis.

Nationally, 20% of people in the migraine sample reported sick every year. The proportion of people on sick leave varied from 18% for residents in the referral areas of Sørlandet and Nordland to 25% in Bergen.

Self-certification (short sick leave without submitting a sick note from a health professional) sick days due to migraine are not included in this report, but it is estimated that around 2 million days of absence per year from work and studies are due to migraines. Migraine occurs most frequently in people of working age, and the societal costs associated with this absence are therefore in addition to the disease's burden on the individual patient and the patient's family.

The significant number of sick leaves indicates that many people with severe migraines, mainly women, suffer greatly from the illness.

In the period 2019–2021, approximately 14,000 MS patients were in contact with a general practitioner and/or in the specialist health service annually. The patient sample consisted of 69% women and 31% men. The average age for both sexes was 52 years.

Annually, an average of 2.4 patients were treated per 1,000 inhabitants for MS in the referral area of ​​Finnmark, compared to 4.4 per 1,000 inhabitants in Møre og Romsdal. It is assumed that the incidence of MS is higher in Møre og Romsdal than elsewhere in the country, but the reason for this is not known. The patient rate was stable from year to year, also during the pandemic.

Most patients received services both from a general practitioner and from the specialist health service. 97% of the patients either received all their services in the specialist healthcare service or both from the general practitioner and the specialist healthcare service. About 1,000 patients annually received all their services in the specialist health service. These patients had an average age of 48 years, which is lower than the average age for the entire sample.

The proportion of patients who were followed up by only GP or emergency room doctor varied from 1% in the referral area Helgeland to around 6% in the referral area Østfold. Nationally, there were approximately 500 such patients per year, and the average age was 64 years, which is higher than the average age in for the entire sample. It is possible that these are patients who, due to a stable disease or poor state of health, would have little benefit from treatment in the specialist health service, but the reason why some patients with MS are exclusively treated by a general practitioner is not known.

The proportion of patients with MS who were treated with high-efficacy therapy varied from about 30% of patients living in the referral areas Østfold, UNN og Nordland to just above 50% of patients in the referral area of ​​Bergen. The proportion of patients receiving high-efficacy therapy increased for most referral areas in the period, but there was still high geographical variation in 2021, where around 35% of patients living in the referral areas of Finnmark and UNN were receiving high-efficacy therapy, compared to just below 60% in the referral area Bergen. The variation is considered unwarranted.

It is recommended to give high-efficacy disease-limiting treatment to most MS patients, as such treatment slows down loss of function and gives less risk of progressive disease (www.tidsskriftet.no). In the past, less effective treatment was recommended for certain patient groups, partly because high-efficacy therapy can cause serious side effects, and late changes in practice according to new guidelines may be an explanation for the geographical variation in the use of high-efficacy drugs.

High-efficacy therapy for MS is very expensive, and health economic assessments are the reason why the drugs available for use in the treatment of MS are limited. It was largely the same medicines that were used from 2019 to 2021, but it varied from year to year which medicines were used the most.

Rituximab, which was the most used high-efficacy drug in 2021, costs 1/20 of the price of other high-efficacy drugs used against MS. However, Rituximab is not approved for use against MS, and is therefore used outside the approved indication. The drug has been in use for several years, both as a treatment for MS and other conditions.

The proportion of patients treated with Rituximab varied widely between the referral areas. 75% of patients living in the referral area of Bergen were being treated with Rituximab, compared to around 15% of patients living in the referral areas of Vestre Viken and Østfold.

Disagreement in the professional community about the use of Rituximab outside the approved indication is probably an important reason for this variation.

MS patients may, for example, need to be admitted urgently when the disease debuts, during attacks where the disease worsens or due to infections.

In the period 2019–2021, there were on average around 2,300 emergency admissions per year with a diagnosis of MS, which gives a rate of 0.5 per 1,000 inhabitants nationally. In some areas the annual variation was large. For areas with few admissions per year, this may be due to elements of random variation. The pandemic may also have had an impact on the number of emergency admissions. Variation in the use of high-efficacy therapy can also have an impact on the emergency admission rate, but this has not been examined further in the atlas.

The rate of emergency admissions must be seen in connection with the occurrence of disease. If the incidence of MS is higher in some areas, higher rates of emergency admissions are to be expected. Since there is uncertainty about whether there is geographical variation in the incidence of MS in Norway, it is difficult to assess the variation in the rate of emergency admissions. However, there was also geographical variation in the number of admissions per patient, and this variation cannot be explained by geographical variation in the incidence of the disease.

Annually, more than 11,600 patients were treated for Parkinson's disease in the general practitioner and specialist healthcare service in the period 2019–2021. This is higher than what is most often mentioned as an estimate in Norway (7,000 – 8,000). Men made up approximately 61% of this patient population and the average age was 74 years. Women with Parkinson's disease were on average almost two years older than men.

There were markedly fewer patients with Parkinson's disease in Finnmark than elsewhere in the country. It is unclear whether this is due to a lower incidence or other causes. The population in Finnmark is partly served by neurologists from The University Hospital of Northern Norway in Tromsø commuting to Finnmark Hospital on a regular basis. Questions can be raised as to whether limited capacity for examination and diagnosis affects how many patients are diagnosed in Finnmark.

Most of the patients received services both in the general practitioner and in the specialist health service. Around 92% of the patients received either all their services in the specialist healthcare service or services in both the general practitioner and specialist healthcare service. Close to 1,000 patients annually received all their services in the general practitioner service. There was a slightly lower proportion of men (58%) and a somewhat higher average age for both men (75.8 years) and women (77.1 years) among the patients who were exclusively followed up in the general practitioner service.

There was a relatively large geographical variation in the number of patients who were only followed up in the general practitioner service - 4% of patients living in the referral area of ​​Bergen compared to 12% of patients living in the referral area of ​​St. Olav's hospital. These can be patients with a stable disease and functioning medication and patients who will benefit little from treatment in the specialist health service due to prominent Parkinson's or other diseases. The variation between the referral areas in the proportion of patients who are exclusively followed up in the general practitioner service over time may, however, indicate that varying patient composition does not provide the full answer, and that patients with Parkinson's disease are given somewhat different follow-up in the referral areas.

Treatment and follow-up of patients with Parkinson's disease is complicated and resource-intensive because the disease manifests itself differently from patient to patient, and because drug treatment is challenging with a number of different treatment options. Medication must be tailored to individual adaptations and adjusted for changes in symptoms. It is necessary for Parkinson's patients to be monitored regularly in the specialist health service at least 1–2 times a year (Helsedirektoratet 2017).

In total, there were over 18,300 specialist consultations annually with a diagnosis of Parkinson's disease in Norway in the period 2019–2021. Use of specialist consultations related to Parkinson's disease varied between the referral areas, with 2.7 times more consultations per 1,000 inhabitants in Diakonhjemmet and Nord-Trøndelag than in Finnmark. In Finnmark we found fewer patients than in the rest of the country and the variation in the use of specialist consultations per 1,000 inhabitants was significantly lower when this referral area is disregarded.

Patients living in the referral area of ​​Finnmark received an average of around one specialist consultation a year, while patients living in the referral areas of Telemark, Innlandet and Sørlandet received an average of around two consultations a year. This means that Parkinson's patients in all parts of the country receive on average follow-up in the specialist health service at least 1–2 times a year, as the recommendations indicate. There are nevertheless some patients who, for various reasons, are only followed up in the general practitioner service, or are treated less often than once a year in the specialist health service, and the variation in the number of contacts in the specialist health service per patient is significant.

Specialists in private practice under a public funding contract supplemented the supply of neurological specialist health services in some parts of the country, but not all. Specialists in such private practice accounted for a total of 19% of consultations nationwide. For residents in the referral area of ​​Sørlandet, specialists in private practice handled 63% of specialist consultations for Parkinson's disease, while residents of Finnmark, Stavanger and Nordland received services exclusively in the public hospitals.

The geographical variation between the referral areas is large and the number of contacts per patient varies. There is therefore reason to question whether the services offered to, and the follow-up of, patients with Parkinson's disease is equitably distributed in the specialist health service.

Parkinson's disease is gradually progressive and causes symptoms that are difficult to regulate. There is therefore a need for regular follow-up in the health service. The GP has the overall responsibility for the medical treatment and health service provision and can initiate treatment and follow-up measures in collaboration with specialists and other specialist groups. Regular exercise/physical treatment, for example, has been shown to provide a better level of function and an increased quality of life (www.parkinson.no).

In total, there were over 26,400 consultations with a GP (97%) or in the emergency department (3%) annually in the period 2019–2021. Patients with Parkinson's disease living in the referral area Diakonhjemmet received an average of 7.6 consultations with a GP/on-call doctor per 1,000 inhabitants. This consitutes 73% more than the 4.4 consultations per 1,000 inhabitants for residents of Telemark. Residents in the referral area Akershus received the most frequent follow-up in the general practitioner service (2.6 consultations per patient). Residents in Telemark, who had the most specialist consultations per patient, received the fewest consultations in the general practitioner service. They received an average of 1.8 consultations with a GP/on-call doctor per patient.

Just under half of all patients with Parkinson's disease received annual physiotherapy through municipal services (registered in NRPHC), but these figures are uncertain.

Parkinson's disease causes a number of motor and non-motor problems of varying severity, but within a few years most patients experience a significant disease burden and reduced quality of life. The effect of symptom-relieving drugs decreases over time, with subsequent fluctuations in symptoms. Follow-up both with a GP and in hospital is necessary for a well-tailored individual treatment (Helsedirektoratet 2017, www.parkinson.no).

Norwegian Parkinson's patients received 10.5 consultations annually in an outpatient clinic, with a specialist in private practice under a public funding contract or with a GP/on-call doctor per 1,000 inhabitants in the period 2019–2021. Residents in the referral area Diakonhjemmet had 13.1 consultations per 1,000 inhabitants, which is 93% more than that of residents of Finnmark, where the rate was 6.8 consultations per 1,000 inhabitants.

Looking at the number of consultations per patient, residents of the referral area Finnmark received one consultation less annually (3.3 consultations per patient) than residents of the referral area Sørlandet (4.3 consultations per patient). Nationally, Norwegian Parkinson's patients received 3.9 consultations per patient annually, of which 41% were in the hospitals' outpatient clinics or with specialist in private practice under a public funding contract and 59% with a GP/on-call doctor.

There is also variation in the proportion of follow-up that was given in the specialist health service, from 55% in Telemark to 30% in Finnmark.

Younger patients with Parkinson's disease received more consultations in an outpatient clinic, with a specialist in private practice under a public funding contract or with a GP/on-call doctor than older patients in the period 2019–2021. This is believed to be connected with the initiation of treatment. From around 55 to 70 years of age, the number of consultations per patient is relatively stable, then the frequency of consultation gradually falls with increasing age. The figures have not been adjusted for mortality as such information was not available for this atlas. There is no systematic variation between the genders when it comes to how many consultations the patients received.