Acceptance of diagnosis and management satisfaction of patients with "suspected Lyme borreliosis" after 12 months in a multidisciplinary reference center: a prospective cohort study.

INTRODUCTION: Because patients with a "suspicion of Lyme borreliosis (LB)" may experience medical wandering and difficult care paths, often due to misinformation, multidisciplinary care centers were started all over Europe a few years ago. The aim of our study was to prospectively identify the factors associated with the acceptance of diagnosis and management satisfaction of patients, and to assess the concordance of the medical health assessment between physicians and patients 12 months after their management at our multidisciplinary center. METHODS: We included all adults who were admitted to the Tick-Borne Diseases Reference Center of Paris and the Northern Region (TBD-RC) (2017-2020). A telephone satisfaction survey was conducted 12 months after their first consultation. It consisted of 5 domains and 13 items rated between 0 (lowest) and 10 (highest grade): (1)Reception; (2)Care and quality of management; (3)Information/explanations given to the patients; (4)Current medical condition and acceptance of the final diagnosis; (5)Overall appreciation. Factors associated with diagnosis acceptance and management satisfaction at 12 months were identified using logistic regression models. The concordance of the health status as assessed by doctors and patients was calculated using a Cohen's kappa test. RESULTS: Of the 569 patients who consulted, 349 (61.3%) answered the questionnaire. Overall appreciation had a median rating of 9 [8;10] and 280/349 (80.2%) accepted their diagnoses. Patients who were "very satisfied" with their care paths at TBD-RC (OR = 4.64;CI95%[1.52-14.16]) had higher odds of diagnosis acceptance. Well-delivered information was strongly associated with better satisfaction with the management (OR = 23.39;CI95%[3.52-155.54]). The concordance between patients and physicians to assess their health status 12 months after their management at TBD-RC was almost perfect in the groups of those with confirmed and possible LB (κ = 0.99), and moderate in the group with other diagnoses (κ = 0.43). CONCLUSION: Patients seemed to approve of this multidisciplinary care organization for suspected LB. It helped them to accept their final diagnoses and enabled a high level of satisfaction with the information given by the doctors, confirming the importance of shared medical decisions, which may help to reduce health misinformation. This type of structure may be useful for any disease with a complex and controversial diagnosis.

Multidisciplinary Management of Suspected Lyme Borreliosis: Clinical Features of 569 Patients, and Factors Associated with Recovery at 3 and 12 Months, a Prospective Cohort Study.

Introduction. Because patients with a suspicion of Lyme borreliosis (LB) may have experienced difficult care paths, the Tick-Borne Diseases Reference Center (TBD-RC) was started in 2017. The aim of our study was to compare the clinical features of patients according to their final diagnoses, and to determine the factors associated with recovery in the context of multidisciplinary management for suspected LB. Methods. We included all adult patients who were seen at the TBD-RC (2017-2020). Four groups were defined: (i) confirmed LB, (ii) possible LB, (iii) Post-Treatment Lyme Disease Syndrome (PTLDS) or sequelae, and (iv) other diagnoses. Their clinical evolution at 3, 6, and 9-12 months after care was compared. Factors associated with recovery at 3 and at 9-12 months were identified using logistic regression models. Results. Among the 569 patients who consulted, 72 (12.6%) had confirmed LB, 43 (7.6%) possible LB, 58 (10.2%) PTLDS/sequelae, and 396 (69.2%) another diagnosis. A favorable evolution was observed in 389/569 (68.4%) at three months and in 459/569 (80.7%) at 12 months, independent of the final diagnosis. A longer delay between the first symptoms and the first consultation at the TBD-RC (p = 0.001), the multiplicity of the diagnoses (p = 0.004), and the inappropriate prescription of long-term antibiotic therapy (p = 0.023) were negatively associated with recovery, reflecting serial misdiagnoses. Conclusions. A multidisciplinary team dedicated to suspicion of LB may achieve a more precise diagnosis and better patient-centered medical support in the adapted clinical sector with a shorter delay, enabling clinical improvement and avoiding inappropriate antimicrobial prescription.

Methodological Quality Assessment with the AGREE II Scale and a Comparison of European and American Guidelines for the Treatment of Lyme Borreliosis: A Systematic Review.

BACKGROUND: Most European and American countries recently updated their guidelines on Lyme borreliosis (LB). The aim of this study was to provide a comparative overview of existing guidelines on the treatment of LB in Europe and America and to assess the methodological quality of their elaboration. METHODS: A systematic search was carried out in MEDLINE, Google Scholar, and the national databases of scientific societies from 2014 to 2020. Quality was assessed by two independent reviewers using the Appraisal of Guidelines for Research and Evaluation II (AGREE II) tool. RESULTS: Twelve guidelines were included. The scores for the AGREE II domains (median ± IQR) were: overall assessment 100 ± 22, scope and purpose 85 ± 46, stakeholder involvement 88 ± 48, rigour of development 67 ± 35, clarity of presentation 81 ± 36, applicability 73 ± 52 and editorial independence 79% ± 54%. Cohen's weighted kappa showed a high agreement (K = 0.90, 95%CI 0.84-0.96). Guidelines were quite homogeneous regarding the recommended molecules (mostly doxycycline in the first intention and ceftriaxone in the second intention), their duration (10 to 28 days), and their dosage. The differences were due to the lack of well-conducted comparative trials. The International Lyme and Associated Diseases Society (ILADS) guidelines were the only ones to suggest longer antibiotics based on an expert consensus. CONCLUSION: European and American guidelines for the treatment of LB were quite homogeneous but based on moderate- to low-evidence studies. Well-conducted comparative trials are needed to assess the best molecules, the optimal duration and the most effective doses.

Perceptions, Representations, and Experiences of Patients Presenting Nonspecific Symptoms in the Context of Suspected Lyme Borreliosis.

BACKGROUND: Some subjective symptoms may be reported at all stages of Lyme borreliosis (LB) and may persist for several months after treatment. Nonspecific symptoms without any objective manifestation of LB are sometimes attributed by patients to a possible tick bite. The aim of our study was to explore the perceptions, representations, and experiences that these patients had of their disease and care paths. METHODS: We performed a qualitative study through individual interviews (October 2017-May 2018), based on grounded theory, following the COREQ checklist. A balanced sample of patients with diverse profiles was recruited at consultations with general practitioners and infectious disease physicians. RESULTS: Twelve patients were interviewed. Data saturation was reached at the twelfth interview. For codes, 293 were identified, and classified into 5 themes: (1) the experience of disabling nonspecific symptoms, especially pain, causing confusion and fear, (2) long and difficult care paths for the majority of the patients, experienced as an obstacle course, (3) a break with the previous state of health, causing a negative impact on every sphere of the patient's life, (4) empowerment of the patients and the self-management of their disease, and (5) the strong expression of a desire for change, with better listening, greater recognition of the symptoms, and simpler care paths. CONCLUSIONS: This study allows for the understanding of a patient's behaviours and the obstacles encountered, the way they are perceived, and the necessary solutions. The patients' expectations identified here could help physicians better understand the doctor-patient relationship in these complex management situations, which would reduce the burden of the disease. The current development of specialised reference centres could help meet the patients' demands and those of family physicians.