The future of biological treatment at home – support of the healthcare professionals and healthcare system is essential

In Slovenia, all the latest therapies are available for most therapeutic areas, including for the treatment of multiple sclerosis. “In Slovenia, all medicines for multiple  sclerosis are available; for the last two years also for patients with primary  form of multiple sclerosis and since last month for secondary progressive  multiple sclerosis, so the therapy can be individualized. In addition, we are  making efforts to establish two trends: early initiation of high-efficacy  treatments when disability is still low. Modern forms of treatment allow for a  longer life period without disability and major health problems. Subcutaneous  injectable medicines given in a prolonged interval relieve the healthcare  system,” said neurologist Assoc.  Prof. Dr Uroš Rot, head of the Department of Neurology, Division of Neurology, University Medical Centre Ljubljana. According to him, modern biological therapies bring positive effects to the treatment and life of patients with multiple sclerosis: “Decades  ago, half of patients with relapsing remitting multiple sclerosis needed  walking aids after 15 years; their share now is only 10 to 15%. There is an  increasing number of minimally affected patients; more and more patients are  able to work fully, have families and enjoy hobbies. Of course, modern  treatments can also have serious side effects. In hundreds of patients with  multiple sclerosis, some serious side effects can be observed. Another negative  issue are frequent check-ups. But, all in all, they benefit the patient,” stressed Prof. Dr Rot.

New forms of treatments are on their way and will provide even better patient management, including for multiple sclerosis. As many as 85% of Slovenian neurologists treating multiple sclerosis patients who participated in the survey¹ on managing patients with multiple sclerosis believe that the introduction of effective therapy self-administered at home is reasonable for their patients. As the main advantages of home therapy, Prof. Dr Rot draws attention to fewer doctor’s appointments and fewer contacts in healthcare institutions, which is currently very important, as we strive to limit the spread of infection. “Moreover,  some of our patients have so far received as many as 150 therapeutic infusions,  and accessing their vasculature has proven to be difficult,” added Prof. Dr Rot.

As demonstrated by the results of a survey² among patients with multiple sclerosis, the most important points of treatment for patients are the absence of relapses and drug adverse effects, while home administration of treatment is ranked third.

Requirement for  self-administration of treatment: good education of patients

The requirement for introducing self-administration of treatment in all areas where possible at the discretion of the doctor is mostly the good education of patients. During the epidemic, telemedicine has played an important role in broadening the use of treatments that can be self-administered, but has not reached its full potential.

The most commonly used methods are phone calls and e-mail communication, and also teleconferences to demonstrate how to correctly administer a medicine. At the Department of Neurological Diseases, University Medical Centre Maribor, the “MS hotline” has been used for more than five years. “Patients with multiple sclerosis  accepted it gladly, since it allows them to quickly obtain answers to their  questions and dilemmas. It was particularly helpful while the epidemic control  measures were in force and people were afraid to come to the hospital and  wanted a remote consultation,” said Melita  Kokol, RN, medical head of nursing at the department. Prof. Dr Rot pointed out that a phone call or a teleconference cannot replace physical examination of a patient the doctor does not know yet or when the neurological status must be assessed. However, he believes that for stable and well-managed patients with routine control check-ups, one of the two check-ups per year could be done remotely. In some areas, web apps are being successfully used for monitoring patients.

A visit to a healthcare  institution – a burden for the entire family

For many patients, particularly those with chronic diseases, regular visits to healthcare institutions, especially frequent, are a significant issue. “Getting my treatment  is a logistical problem for the entire family, for which we have to prepare a  month in advance, since my parents need to adjust their working hours. If they  cannot take me, I must call and of course pay for a cab or call someone else.  It would be much easier if I could administer the medicine myself, at home,  than being dependent on others adjusting their lives,” says Taja Habič, who lives with multiple  sclerosis. “The treatments should be  brought closer to patients as much as possible, including self-administration.  Where this is not possible, the Multiple Sclerosis Association of Slovenia can  help, e.g. by providing transport with the Association’s vans. Patients could  also receive support from the personal assistants many patients with multiple  sclerosis have – of course, if this is a simple administration, since personal  assistants do not have medical education,” said Pavel Kranjc, president of the Multiple Sclerosis Association of Slovenia, who believes that patient support programs are a good solution.

In many areas, patients have been self-administering treatment for many years. Erika  Lobenwein, who has been coping with rheumatoid arthritis since childhood, says that only at the age of 35, when she started receiving biological treatments, did she understand what an approximation of a normal life was: “Living with a biological treatment that I  administer at home myself is even better, since before that, parents had to  take me to Ljubljana every month or even twice a month to receive my therapy.”

People with severe  problems are thrilled to learn how to self-administer treatment

In the area of rheumatology, treatment with medicines that allow self-administration at home began in 2004. “The patients were thrilled. It was not difficult to reach out to those  who had been coping with the disease for a long time and were in severe pain  and ask them to learn how to self-administer treatment. In recent years, they  have been asking whether there is a possibility of a non-injectable therapy,  but when we explain that the needle is practically invisible, they opt for this  kind of treatment and usually have no particular problems. We want them to be independent  when administering treatment – even if they are older than 80, we encourage  them to learn how to self-administer the medicine and remain independent for as  long as possible. Today, I spoke with a patient who cried out of happiness when  she learned that she would be able to self-administer her biological  treatment,” said the rheumatologist  Prof. Dr Matija Tomšič from the Department of Rheumatology, Division of Internal Medicine, University Medical Centre Ljubljana. He is surprised by the reservations expressed by some patients regarding the potential drug adverse effects, without first asking where an untreated disease leads.

According to neurologist  Chief Phys. Prof. Dr Bojana Žvan from the Department of Vascular Neurology and Intensive Neurological Therapy, Division of Neurology, University Medical Centre Ljubljana, new biological treatments are a true revolution in the treatment of migraine. “For over a year,  we have been practicing self-administration of migraine treatment with a pen,  and I have seen no patients resisting such treatment. After the first  administration, which takes place at the doctor’s office where the patients  learn how to handle and administer the medicine correctly, they administer the  treatment themselves. Among my patients, there is only one who goes to the  community healthcare center to receive the injection. New biological treatments  have changed the treatment paradigm and constitute new hope both for the  patients and us therapists. Migraine is not just a headache; in Slovenia, 14%  of people suffer from it, and is not just a medical but also a social problem,  since at least a half of patients are completely handicapped during the  migraine period,” emphasized Prof. Dr Žvan. According to Melita Kokol, at the Department of Neurological Diseases, University Medical Centre Maribor, they have also noticed that what patients with migraine want the most are effective medicines, so they have not observed any complications either in accepting the new form of administration or in learning how to inject the medicine correctly. “Pens are easy to  use, as they contain the prepared medicine, while injection therapy requires  slightly more skills: the medicine must be diluted, transferred into a syringe  and deaerated, a needle must be fitted and the treatment administered  correctly,” explained Melita Kokol. Administration using a pen and injection are very different and difficult to compare. Judging by the developments, the future of biological treatments lies in the pharmaceutical form of pens.

In all areas where patients self-administer treatments, special attention is dedicated to patient education regarding the correct handling and administration of medicines and monitoring the potential side effects, as well as subsequent continuous monitoring of patients. The most frequent concern regarding medicines for self-administration is ensuring compliance and adherence, as shown by the survey¹ conducted among the neurologists treating multiple sclerosis.

“After being educated  under the supervision of a nurse, the patients self-administer the medicine,  and if the nurse deems them good at it, they administer the next dose  themselves at home. Otherwise, they come to the nurse again to receive the  injection. This is followed by check-ups, first every three and then every six  months, and later – if the disease is well-managed – once yearly. During this  time, they receive a call from the nurse every three months to check up on them  and assess whether the disease is stable, and the doctor prescribes the  medicine and sets a date for the next appointment,” Prof. Dr Tomšič described the system of patient education and supervision, which they had introduced before the epidemic. During the epidemic, they have maintained this method of work: “Both to the satisfaction of patients who do  not have to travel across Slovenia and to the satisfaction of nurses and  doctors who have patients under control all the time.”

The Health Insurance  Institute of Slovenia listened to the providers

Their experience with financing the new method of work has been good. “Together with the Health  Insurance Institute of Slovenia, we re-evaluated the outpatient part of our  work and agreed on a new payment system, which was introduced in 2020. A phone  call between the patient and a nurse office is considered an examination, since  it is documented, the report is recorded and the invoice to HIIS is issued,” explained Prof. Dr Tomšič. Awaiting epidemiological measures, the University Clinic of Respiratory and Allergic Diseases Golnik also taught some patients, e.g. those with urticaria, how to self-administer medicine in the form of pen. “The health insurance company listened to  the providers who had explained how patients could be managed despite the  restrictions. The archaic forms of payments made out to the healthcare  system – i.e. payment only if the patient was sitting in the waiting room – can  be replaced by being paid if the patient is contacted and is well managed,” said pneumologist, allergologist and  immunologist Prof. Dr Mitja Košnik, head of the Clinic’s research department.

All participants of the press conference predict that the future of treatment is the optimization of the entire healthcare system towards patient individualization, including modern treatment allowing for self-administration of medicines at home. They are convinced that some elements of telemedicine also bring new options for better patient management, but they will not be suitable for all patients. Videoconferences seem to be a suitable way of management in some areas, e.g. migraine treatment, where the patients already have a Telemigraine program available. One of the ways to ensure higher adherence is the use of web apps, which has spread to different therapeutic areas and helps patients in ensuring regular administration of medicines.

Patient qualification and technical equipment will play an important role, with younger patients usually having an advantage. “Nevertheless, some patients need social  contact allowing them to trust the doctor more and confide in them about their  distress. We must take this into account and thus build a trustful relationship  leading to the best treatment outcomes,” concluded Pavel Kranjc, President of the Multiple Sclerosis Association of Slovenia.

It is therefore essential that all healthcare system stakeholders make adjustments in order to ensure better patient management, with treatment being adapted to their needs as much as possible and contributing to higher quality of life.