Researchers from the Institute of Social Health at Sts Cyril and Methodius Faculty of Theology at Palacký University Olomouc have studied the effects of Lyme disease, also known as borreliosis. They investigated three dozen people who have undergone the disease and focussed primarily on the experiences of patients who evaluated the course of the illness, the intricacies of the diagnosis, and the possibilities of both conventional and experimental treatment. Videos, patients’ experiences, and resources for physicians and patients are posted on www.hovoryozdravi.cz. The research was carried out thanks to a project supported by the Technology Agency of the Czech Republic (TACR).
“The issue of Lyme disease is an extremely interesting one. This disease (whose causative agent, the spirochete Borrelia burgdorferi sensu lato, is a close relative of Treponema palidum, the causative agent of syphilis) is sometimes referred to as “the great new imitator”. This multisystemic disease can attack a wide range of tissues and organs and thus mimic the symptoms of other diseases. What makes the disease tricky is that its manifestations are varied, often non-specific, and fluctuate in intensity. The specific symptoms of the initial phase are absent in many patients, and diagnosing the disease on the basis of other symptoms and antibodies persisting in the blood for a long time is often difficult,” said researcher Veronika Navrátilová.
Borreliosis: a disease with a significant socio-economic impact
The disease can be successfully treated with antibiotics in most cases. However, it turns out that 5–20% of patients continue to have health problems even after treatment. They end up on sick leave or even on partial or full disability pension. If borreliosis is not treated by a timely and appropriate response, it is non-fatal but nonetheless a disabling disease.
Cases of borreliosis with complications are a complex and not yet fully understood issue. Patients often find themselves in a tricky situation – they often feel very sick, but doctors cannot objectively find anything other than antibodies to borreliosis. “Indirect diagnostics cannot give an unequivocal answer as to whether there is an ongoing infection or just lasting antibodies,” Navrátilová pointed out.
Veronika Navrátilová studied sociology at Palacký University Olomouc. In addition to her alma mater, she taught at the Department of Medical Ethics and Humanities at the Second Faculty of Medicine of Charles University. She gained experience in qualitative research at the Confess Research agency in Prague. She is currently studying in the doctoral programme of the Institute of Social Health (OUSHI, a research institute at Sts Cyril and Methodius Faculty of Theology). She is interested in the sociology of health, illness, and medicine, and in qualitative research focussing on the experiences of doctors and patients.
The clarification of those cases where treatment does not work or post-treatment syndrome develops after the disease is gone has been the subject of many scientific studies in recent years. Some infections (including borreliosis) appear to trigger immunopathological processes that cause long-term health problems.
“The question whether something called ‘chronic borreliosis’ exists is still very controversial. Societies for infectious diseases around the world are generally opposed to the term; however, entire alternative communities of doctors and patient groups are forming to convince the authorities otherwise and to enforce adequate care for people affected by this disease,” Navrátilová added.
What does it mean to have borreliosis? (Un)complicated diagnoses and health problems
The researchers analysed data from 39 interviews with respondents who were contacted at professional and patient conferences, through specialised Lyme disease outpatient clinics at infectious disease wards in hospitals, as well as through various discussion forums and social media groups bringing together people with borreliosis.
“Our research focussed both on cases of ‘uncomplicated’ borreliosis and on patients who describe themselves as ‘chronic’. We recorded the experiences of people with a variety of disease courses and manifestations, with varying lengths of time before diagnosis was made, and varying levels of successful treatment. We spoke to people who had tried other options in addition to standard treatment and had been treated even by private doctors or abroad. Some of our respondents have won their battle with the disease and are enjoying full health. Others, however, are still struggling with persistent health problems, some even with the fear that life will never be the same as it was before the disease. We believe that those people too should have somewhere to turn for help and support in the hope of a full recovery or at least alleviation of debilitating health issues,” said Navrátilová.
A module on Lyme disease, presenting topics that research has shown to be relevant to patients, will be a source of information not only for patients and their families, but also for medical students, general practitioners, and other professionals. The module will include three hundred video and audio clips – excerpts from interviews obtained as part of the research – which will be posted on the website www.hovoryozdravi.cz. Subsequently, the team will present the research results to the professional community in articles submitted to medical journals.
“The main contribution of our research is that we have looked at a serious and relatively common disease, for which medicine still does not have clear-cut solutions, through the eyes of patients. We have thus learnt how they perceive the illness, what they believe, and what they need. This information is crucial for the increasingly implemented ‘patient-centred design’ of medical care. We hope that patients will find the research outputs helpful by sharing their experiences. And last but not least, our research will convey information to both existing and future doctors about what it is like to have borreliosis, how patients really feel, and what they have to face. Our data can help doctors in how to deal with patients, how to inform them about the disease, how to support them. So this is something that we – sociologists and psychologists who are involved in this kind of research – can contribute to,” Navrátilová concluded.
The research was carried out within the TACR project No. TL02000257 “Life quality support for people with Lyme disease”. Interviews with 39 patients were conducted from April 2019 to September 2020. The application guarantors of the project were the Department of Immunology at the UP Faculty of Medicine and Dentistry, University Hospital Olomouc, and the patients’ association Borelioza.cz. The expert guarantor of the project was Professor of Immunology Evžen Weigl.
Lyme disease is the most common tick-borne infection in the Czech Republic and the most common disease transmitted from animals to humans in Europe, Asia, and North America. It is caused by the bacterium Borrelia burgdorferi sensu lato. The infection is not only transmitted by adult ticks but also in their younger developmental stages. Transmission by insects and other arthropods has not yet been proven. The likelihood of infection increases with the length of time the tick feeds on the blood. Research shows that at least 24 hours of the tick being attached is required for transmission to occur. The exact incidence of borreliosis in the country is unknown; in many cases recovery occurs without the need to prescribe special treatment. In total, 4–5 thousand cases are reported annually. The most common and most typical manifestation of the disease is migratory erythema – a characteristic spot on the skin, most often localised around the site of the tick’s attachment. In addition to skin manifestations, borreliosis can often affect the musculoskeletal and nervous systems; rarely even the eyes and heart may be affected. There is no effective vaccine against borreliosis on the market to date. However, a new vaccine was recently developed and successfully tested in several countries, and the results are promising.
The website hovoryozdravi.cz (i.e. Talking About Health) was created thanks to collaboration between the Institute of Social Health and the Health Experiences Research Group at the University of Oxford based on DIPEx research. This method is based on in-depth qualitative interviews. The site presents patients’ experiences and provides reliable and scientifically validated information about health problems. They publish research findings on ageing, breast cancer, palliative care, epilepsy in children, and hearing impairment in children.