Lyme borreliosis and medical wandering: what do patients think about multidisciplinary management? A qualitative study in the context of scientific and social controversy.

INTRODUCTION: To answer to patients' medical wandering, often due to "unexplained symptoms" of "unexplained diseases" and to misinformation, multidisciplinary care centers for suspected Lyme borreliosis (LB), such as the 5 Tick-Borne Diseases (TBDs) Reference Centers (TBD-RC), were created a few years ago in France, the Netherlands and Denmark. Our study consisted of a comprehensive analysis of the satisfaction of the patients managed at a TBD-RC for suspected LB in the context of scientific and social controversy. METHODS: We included all adults who were admitted to one of the TBD-RC from 2017 to 2020. A telephone satisfaction survey was conducted 12 months after their first consultation. It consisted of 5 domains, including 2 free-text items: "What points did you enjoy?" and "What would you like us to change or to improve?". In the current study, the 2 free-items were analyzed with a qualitative method called reflexive thematic analysis within a semantic and latent approach. RESULTS: The answer rate was 61.3% (349/569) and 97 distinctive codes from the 2-free-text items were identified and classified into five themes: (1) multidisciplinarity makes it possible to set up quality time dedicated to patients; (2) multidisciplinarity enables seamless carepaths despite the public hospital crisis compounded by the COVID-19 pandemic; (3) multidisciplinarity is defined as trust in the team's competences; (4) an ambivalent opinion and uncertainty are barriers to acceptance of the diagnosis, reflecting the strong influence of the controversy around LB; and (5) a lack of adapted communication about TBDs, their management, and ongoing research is present. CONCLUSION: The multidisciplinary management for suspected LB seemed an answer to medical wandering for the majority of patients and helped avoid misinformation, enabling better patient-centered shared information and satisfaction, despite the context of controversy.

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.

Factors associated with fear of COVID-19 infection in people living with HIV / Facteurs associés à la crainte de l'infection par la COVID-19 chez des personnes vivant avec le VIH

INTRODUCTION: People living with HIV (PLHIV) who may have experienced biographical disruptions in their life trajectory may have a vulnerability to risk that differs from the general population, particularly in the context of an infectious health crisis. This study aimed to understand the factors associated with concerns about being infected with COVID-19 among PLHIV during the first period of the health crisis. METHODS: This was an online cross-sectional study using an online self-administered questionnaire in the context of the COVID-19 epidemic in France among a population of PLHIV. The recruitment was done via social networks and through various actors in the fight against HIV. The self-questionnaire was available from July 2020 to September 2020. RESULTS: The ACOVIH study collected 249 responses, 202 men and 47 women, with a mean age of 46.6 ± 12.9 years. The most represented socio-professional categories were employees (n=73.29%), followed by managers, professionals and artists (n=59.24%). The PLHIV most worried about being infected by COVID-19 had a level of education lower than or equal to the baccalaureate, family difficulties related to HIV and a deterioration in the relationship of trust with the HIV medical team. CONCLUSION: Feelings of anxiety can have a health and psychosocial impact on PLHIV. It is necessary to consider these negative factors by proposing adapted support and by carrying out preventive actions aiming in particular at improving the literacy of the PLHIV.

Introduction: Les personnes vivant avec le VIH (PVVIH) ayant déjà vécu des perturbations biographiques dans leur trajectoire de vie peuvent avoir une vulnérabilité accrue aux risques, particulièrement dans le cadre d'une crise sanitaire infectieuse. La présente étude (« Adaptations à la COVID-19 lorsque l'on vit avec le VIH ¼ [ACOVIH]) vise à appréhender les facteurs associés à l'inquiétude d'être infecté par la COVID-19 chez les PVVIH durant la première période de la crise sanitaire. Méthodes: Il s'agissait d'une étude transversale en ligne par questionnaire autoadministré conduite dans le contexte épidémique de la COVID-19 sur le territoire français auprès d'une population de PVVIH. Les participants ont été recrutés via les réseaux sociaux et par le biais de divers acteur·trice·s de la lutte contre le VIH. L'autoquestionnaire était disponible de juillet 2020 à septembre 2020. Résultats: L'étude ACOVIH a recueilli 249 réponses, 202 hommes et 47 femmes, d'un âge moyen de 46,6 ± 12,9 ans. Les catégories socioprofessionnelles les plus représentées étaient les employés (n = 73, 29 %), suivis des cadres et des professions intellectuelles et artistiques (n = 59, 24 %). Les PVVIH les plus inquiètes à l'idée d'être infectées par la COVID-19 ont un niveau d'études inférieur ou égal au baccalauréat, des difficultés familiales en lien avec le VIH et une dégradation de la relation de confiance vis-à-vis de l'équipe médicale VIH. Conclusion: Le sentiment d'inquiétude peut avoir un impact sanitaire et psychosocial chez les PVVIH. Il est nécessaire de considérer ces facteurs négatifs en proposant un accompagnement adapté et en menant des actions préventives visant notamment à améliorer la littératie des PVVIH.

A Qualitative Study of Barriers and Facilitators to Adherence to Secondary Prevention Medications Among French Patients Suffering from Stroke and Transient Ischemic Attack.

PURPOSE: Secondary prevention medications (SPM) reduce the risk of ischemic stroke (IS) and transient ischemic attack (TIA) recurrence. However, approximately one-third of patients are estimated to be non-adherent. This qualitative study aimed to explore barriers and facilitators to adherence to SPM after IS or TIA. PATIENTS AND METHODS: Thirty-six face-to-face semi-structured interviews were conducted with 14 TIA patients and 22 IS patients who self-administered their treatment 12 months after IS/TIA. A thematic analysis was performed. RESULTS: Major facilitators to good adherence to SPM were the fear of stroke recurrence and the high level of trust in the prescribing physician. Barriers included a perceived lack and/or inappropriate timing of information about SPM, practical difficulties of taking some SPM (eg, inadequate packaging) and of implementing routines into their daily life. CONCLUSION: Information on SPM is inadequate in terms of quantity and timing both during the acute IS/TIA period and over the long term. Providing more tailor-made information at an opportune moment, in particular by promoting discussion with their general practitioner (GP) throughout the course of illness and recovery, is essential to ensure that patients are not left alone in the decision-making process regarding adherence to SPM.

The quality of life of long-term remission patients in the Vivrovaire study: The impact of ovarian cancer on patient trajectory.

Objectives: In this study, we explored how ovarian cancer (OC) survivors give meaning to their cancer experience and how the latter has an impact on their quality of life (QOL).Participants: The sample comprised 16 OC patients participating in the French study Vivrovaire in Lyon who were in long-term remission.Methods: We employed a qualitative approach, based on semi-structured interviews. Using ATLAS.ti software, we performed a thematic analysis of the collected data.Findings: Three main OC-related themes emerged: body and physical issues; social life evolutions; participant retrospective perception of OC experience.Interpretation: Our results underline the need to take into account the various dimensions of patient identity when studying OC survivors' QOL and to consider intra-individual QOL evolutions from a temporal perspective.Implications for Psychosocial Providers: Helping patients acquire a sound understanding of their illness experience is an enormous challenge for OC healthcare.

Becoming adherent to a preventive treatment for HIV: a qualitative approach.

The clinical trial ANRS-IPERGAY investigated the efficacy of sexual activity-based (i.e. on demand) HIV pre-exposure prophylaxis (PrEP). Using a qualitative method, we analysed the role of adherence as one of the main elements for PrEP effectiveness and its associated determinants. Data were collected in various French ANRS-IPERGAY sites during the double-blind (2012-2014) and open-label study (2015-2016) phases, through two individual interviews per participant, collective interviews and focus groups. A total of 83 participants participated in the present study. Our analysis included 32 individual interviews (with 16 participants), 13 collective interviews (n = 45) and 8 focus groups (n = 33). We investigated adherence to on-demand pill-intake schedule, focusing especially on PrEP integration into daily life. PrEP intake was regulated through coping strategies to simplify implementation and avoid stigmatizing reactions. We considered self-care and pharmaceuticalization of prevention as specific features of sexual activity-based PrEP. As PrEP is a prophylaxis for seronegative people, it is contributing to the emergence of a new identity in the HIV field. Health-care professionals should take into account the practical implementation of PrEP schedules into daily life, assist PrEP users in personal management of pill intake and, more generally, improve adherence to the prophylaxis.

[Prevention and management of Lyme disease: On complexity and the need to take into consideration various psycho-social factors]. / Prévention et prise en charge de la maladie de Lyme : de la complexité et de la nécessité d'intégrer divers déterminants psychosociaux.

OBJECTIVE: This paper aims to present a psychosocial analysis on the scientific literature concerning Lyme disease prevention and care. METHODS: We performed a literature review on Lyme disease, especially on prevention and care, both through physicians and patients' perspective. RESULTS: A total of 31 documents were included in our literature review. Literature shows that the acceptability of preventive measures, which is relatively poor, has to be associated with the behavioral nature, and not medical one, of these interventions. Moreover, the Lyme disease care is characterized by a condition of uncertainty - especially because of the controversy about the existence of the chronical form and the treatment to adopt - provoking important consequences on patient's quality of life. That is why the acknowledgment of profane knowledge's legitimacy is strongly demanded by patients, especially through the research of an empowered condition in the relation with the physicians. In this sense, the construction of a solid relation between caregiver and patient seems to be essential. CONCLUSIONS: The invisibility of most symptoms, the patient's subjective experience and the social representations about Lyme disease show the need and the contribution of a psychosocial approach, in order to better understand the life experience of this uncertain condition and, more in general, of this disease.

Community-Based Care in the ANRS-IPERGAY Trial: The Challenges of Combination Prevention.

ANRS-IPERGAY was a community-based randomized trial investigating the efficacy of sexual activity-based HIV pre-exposure prophylaxis (PrEP) in a population of males and transgender females who had sex with men and were at high risk of HIV infection. We qualitatively analyzed the support provided to participants by community-based health workers (CBHW) throughout the trial's double-blind and open-label extension phases. In particular, we showed that the relationship between participants and CBHW strongly influenced self-managed pill intake. The delicate construction of this relationship, balanced between trust and dependence, played an important role in PrEP adherence. CBHW had to deal with various issues surrounding participants' feelings of empowerment regarding their role in the trial, as well as related tensions between various logics and rationalities. They were essential to participants' continued involvement.

Pleasure and PrEP: Pleasure-Seeking Plays a Role in Prevention Choices and Could Lead to PrEP Initiation.

Pleasure-seeking plays a role in prevention (means choices and use), and in the sexual quality of life of men who have sex with men (MSM). Since HIV is a major threat to MSM health, new means of prevention, like pre-exposure prophylaxis (PrEP), must meet the needs of MSM to be fully efficient. Using a psychosocial approach, we examined how pleasure-seeking plays a role in participation of MSM in "ANRS-IPERGAY," a community-based trial on sexual health which included sexual on-demand PrEP. Thirteen semistructured collective interviews were conducted with 45 participants. First, we analyzed participants' search for new prevention means due to previous failures in condom use. We found that participants perceived condoms as a barrier-both materially and symbolically-to pleasure and desire, causing anxiety and stress considering sexual intercourse. Second, we explored representations and attitudes concerning pleasure within the context of PrEP. We found that PrEP allowed participants to freely choose their desired sexual positions and to better enjoy intimacy. Third, we studied the sexual quality of life for PrEP users in ANRS-IPERGAY and found an improvement. Thanks to the community-based design of the trial, this new prevention tool became a means to develop agency and empowerment for participants, not only in negotiating individual prevention but also in opposing the normative and stigmatizing discourse on sexuality and HIV. In conclusion, pleasure-seeking appears to be an essential element of sexual fulfillment that needs to be integrated as a positive notion in the study of HIV prevention.

Does Quality of Life and Sexual Quality of Life in HIV Patients Differ Between Non-treated HIV Controllers and Treated Patients in the French ANRS VESPA 2 National Survey?

People living with HIV who spontaneously control the virus without antiretroviral treatment are called HIV Controllers and their status places them at the limits of bio-clinical normality. The objective of this study was to investigate an unexplored field: HIV Controllers' quality of life (QOL). Using quantitative methods, we compared the QOL of untreated (by definition) HIV Controllers in the ANRS CO18 HIV Controller cohort study, with the QOL of treated patients in the French national survey ANRS VESPA 2. In particular, the physical, social, mental and sexual dimensions of QOL were examined. Results highlight that perceiving oneself to be ill or healthy is linked to stigma and to a lack of self-identification with a social group. Some components of the QOL were significantly impaired in HIV controllers. This study is the first to investigate this field.