Symptom severity is a major determinant of cannabis-based products use among people with multiple sclerosis.

AIMS AND OBJECTIVES: We aimed to identify correlates of cannabinoid-based products (CBP) use in patients with multiple sclerosis (MS) in France and Spain. BACKGROUND: MS is responsible for a wide range of symptoms, including pain. Access to CBP differs according to local legislation. The French context is more restrictive than the Spanish one, and no data regarding cannabis use among MS patients has yet been published. Characterizing MS patients who use CBP constitutes a first step toward identifying persons most likely to benefit from them. DESIGN: An online cross-sectional survey was submitted to MS patients who were members of a social network for people living with chronic diseases and were living in France or Spain. METHODS: Two study outcomes measured therapeutic CBP use and daily therapeutic CBP use. Seemingly unrelated bivariate probit regression models were used to test for associations between the outcomes and patients' characteristics while accounting for country-related differences. STROBE guidelines were followed in reporting this study. RESULTS: Among 641 study participants (70% from France), the prevalence of CBP use was similar in both countries (23.3% in France vs. 20.1% in Spain). MS-related disability was associated with both outcomes, with a gradient observed between different degrees of disability. MS-related pain level was associated with CBP use only. CONCLUSIONS: CBP use is common in MS patients from both countries. The more severe the MS, the more participants turned to CBP to alleviate their symptoms. Easier access to CBP should be ensured for MS patients in need of relief, especially from pain. RELEVANCE TO CLINICAL PRACTICE: This study highlights the characteristics of MS patients using CBP. Such practices should be discussed by healthcare professional with MS patients.

Integrating Quality of Life in the Care Pathway of Cancer Patients Undergoing Immunotherapy Treatment: Descriptive, Cross-sectional Survey of an Online Patient Community's Experiences and Expectations.

BACKGROUND: New cancer treatments, such as immune checkpoint inhibitors (ICIs), can improve survival and health-related quality of life (HRQoL) in patients with cancer. Although long-term monitoring of HRQoL has been shown to improve survival, integration of HRQoL into everyday practice remains poorly documented. OBJECTIVE: This study describes experiences and expectations of patients treated with ICIs regarding a discussion of HRQoL with health care professionals (HCPs) in cancer management. METHODS: This cross-sectional study was conducted in an online patient community (Carenity) in France. Patients treated with ICIs for cancer, included between September 2018 and January 2019, completed a questionnaire to assess the involvement of HCP in a discussion of HRQoL and when and what was discussed. RESULTS: Of 82 patients included (mean age: 56.9 years, 95% CI 54.2-59.6; 46 [56%] male; 34 [41%] with lung cancer), 62 (76%) reported discussing HRQoL at least once with HCPs, mainly general practitioners (54/82, 66%), oncologists (53/82, 65%), and hospital nurses (50/82, 61%). Around half (45/82, 55%) of the patients were satisfied with these discussions. Discussions with the oncologist were at the patient's initiative (34/53, 64%). Discussions occurred primarily during follow-up visits (40/62, 65%), when adverse events occurred (30/62, 48%), and at treatment initiation (27/62, 32%). The most discussed dimensions were symptoms (48/62, 77%) and physical well-being (43/62, 69%). With respect to expectations, 54/82 (66%) patients considered oncologists as the most important HCPs for discussing HRQoL. These discussions were desirable throughout the care pathway, particularly at diagnosis (63/82, 77%) and when treatment was initiated (75/82, 92%) or changed (68/82, 83%). All HRQoL dimensions were considered important to discuss. CONCLUSIONS: With only around half of the patients satisfied with HRQoL discussions, impactful HRQoL integration in clinical practice is critical. According to patients, this integration should involve mainly oncologists and general practitioners, should happen at every step of the care pathway, and should be extended to dimensions that are currently rarely addressed.

Patient knowledge of gut microbiota and acceptability of fecal microbiota transplantation in various diseases.

BACKGROUND: Fecal microbiota transplantation (FMT) is now evaluated in various diseases. However, large-scale population treatment may encounter feasibility issues in terms of acceptance. We aim to evaluate patient knowledge of gut microbiota and the acceptability of FMT in various diseases. METHODS: Patients of Carenity's French online community were invited by email to participate in a questionnaire. The following parameters were assessed: patient's principal illness and duration, demographic data, therapeutics, dietary habits, knowledge of gut microbiota, probiotics and FMT, and its acceptability. KEY RESULTS: In total, 877 patients participated in the online questionnaire: 156 with inflammatory bowel disease (17.8%), 127 with rheumatoid arthritis (14.5%), 222 with ankylosing spondylitis (25.3%), 52 with lupus (5.9%), 64 with psoriasis (7.3%), 61 with obesity (7%), and 195 with type 2 diabetes (22.2%). Characteristics of participating patients were similar to those of the entire cohort (n = 23084). Overall, 47.1% (n = 413/877) of patients knew what the microbiota is with no difference among diseases. Knowledge was reported to be developed by patients themselves (203/413; 49.2%) without involving a healthcare professional. If proposed by a healthcare professional, 37.2% (326/877) reported being interested or very interested in undergoing FMT. Factors associated with good acceptability of FMT were the male sex (OR: 1.63, CI95% [1.14 to 2.32]), previous knowledge of FMT (OR: 4.16, CI95% [2.92 to 5.96]), and previous knowledge of gut microbiota (OR: 1.54, CI95% [1.05 to 2.24]). CONCLUSION AND INFERENCES: Knowledge of gut microbiota is still limited in patients' communities and mainly developed by patients themselves, impacting FMT acceptability.

Patient Satisfaction with Once-Daily Single-Tablet Darunavir, Cobicistat, Emtricitabine, and Tenofovir Alafenamide (DRV/c/FTC/TAF): A Real-World Study of Patient Self-Reported Outcomes in HIV-1-Diagnosed Adults.

PURPOSE: Human immunodeficiency virus (HIV)-1 infection remains a concern. As patient adherence to antiretroviral therapy is essential to avoid drug resistance and virologic failure, greater understanding of patient treatment satisfaction may help facilitate ongoing medication use. PATIENTS AND METHODS: An online survey was conducted through the Carenity US HIV platform (04/07/2020-05/26/2020). Eligible respondents were adults with HIV-1 registered on the platform who were receiving darunavir/cobicistat/emtricitabine/tenofovir alafenamide (DRV/c/FTC/TAF) and living in the United States. This descriptive study assessed patient satisfaction with DRV/c/FTC/TAF and HIV-related symptoms at baseline and follow-up (4-6 weeks). Two HIV patient-reported outcomes tools were completed at both time points: the HIV Treatment Satisfaction Questionnaire (HIVTSQs; range: 0-60 points [higher score indicates greater satisfaction]) and the HIV Symptom Distress Module (HIV-SDM; range: 0-80 points [lower score indicates lower distress]). RESULTS: Of 100 respondents from across the United States who completed the survey at baseline, mean age was 39 years, 69 were male, 48 were Caucasian, 76 were HIV treatment-experienced, and 24 were HIV treatment-naïve. Of baseline respondents, 46 completed the follow-up survey. In the overall population, treatment discontinuation between baseline and follow-up was low (6.5%: 3/46 respondents at follow-up). Mean total HIVTSQs score at baseline was 50.2 with the highest proportion of respondents satisfied regarding their willingness to continue DRV/c/FTC/TAF (79%) and to recommend DRV/c/FTC/TAF to other patients (76%). Among all baseline respondents, mean total HIV-SDM score was 23.5. On average, respondents experienced 10.7 overall symptoms (grades 1-4) and 3.8 bothersome symptoms (grades 3-4). Both satisfaction rate and occurrence of symptoms with DRV/c/FTC/TAF were stable between baseline and follow-up. CONCLUSION: DRV/c/FTC/TAF therapy was associated with high patient satisfaction and patients taking DRV/c/FTC/TAF had a moderate HIV symptom burden. Patient experience and health-related quality of life during HIV therapy are important metrics that may help healthcare providers increase patient adherence.

Unsupervised clustering analysis of data from an online community to identify lupus patient profiles with regards to treatment preferences.

OBJECTIVE: Lupus is a chronic complex autoimmune disease. Non-adherence to treatment can affect patient outcomes. Considering patients' preferences into medical decisions may increase acceptance to their medication. The PREFERLUP study used unsupervised clustering analysis to identify profiles of patients with similar treatment preferences in an online community of French lupus patients. METHODS: An online survey was conducted in adult lupus patients from the Carenity community between August 2018 and April 2019. Multiple Correspondence Analysis (MCA) was used with three unsupervised clustering methods (hierarchical, kmeans and partitioning around medoids). Several indicators (measure of connectivity, Dunn index and Silhouette width) were used to select the best clustering algorithm and choose the number of clusters. RESULTS: The 268 participants were mostly female (96%), with a mean age of 44.3 years 83% fulfilled the American College of Rheumatology (ACR) self-reported diagnostic criteria for systemic lupus erythematosus. Overall, the preferred route of administration was oral (62%) and the most important feature of an ideal drug was a low risk of side-effects (32%). Hierarchical clustering identified three clusters. Cluster 1 (59%) comprised patients with few comorbidities and a poor ability to identify oncoming flares; 84% of these patients desired oral treatments with limited side-effects. Cluster 2 (13%) comprised younger patients, who had already participated in a clinical trial, were willing to use implants and valued the compatibility of treatments with pregnancy. Cluster 3 (28%) comprised patients with a longer lupus duration, poorer control of the disease and more comorbidities; these patients mainly valued implants and injections and expected a reduction of corticosteroid intake. CONCLUSIONS: Different profiles of lupus patients were identified according to their drug preferences. These clusters could help physicians tailor their therapeutic proposals to take into account individual patient preferences, which could have a positive impact on treatment acceptance and then adherence. The study highlights the value of data acquired directly from patient communities.

Chronic patients' satisfaction and priorities regarding medical care, information and services and quality of life: a French online patient community survey.

BACKGROUND: The French healthcare system is evolving to meet the challenges of an aging population, the growing prevalence of chronic diseases, the development of new technologies and the increasing involvement of patients in the management of their disease. The aim of this study is to assess the satisfaction and priorities of chronic patients regarding medical care, information and services and their quality of life. METHODS: A cross-sectional study was conducted from February to March 2018 via the French Carenity platform. Adult patients enrolled in type 1 diabetes, heart failure or obesity communities were invited to answer an online questionnaire. A numeric scale from 0 (meaning not satisfied) to 5 was used to evaluate patients' satisfaction. Patients' priorities were assessed using a ranking question. Patients' satisfaction and priorities have been combined in a matrix to identify patients' expectations. RESULTS: Sixty-seven respondents of each condition answered a questionnaire. The most important and least satisfactory items about medical care are availability and active listening from healthcare providers, as well as access to coordinated and multidisciplinary care. Regarding information and services, respondents mostly expect connected medical devices, in addition to lifestyle and dietary measures. As for the quality of life, respondents fear that their chronic condition will keep impacting their daily mood and ability to do physical activities. CONCLUSIONS: This study shows that chronic patients want to be more actively involved in their care pathway. Patient training and therapeutic patient education programs could help them manage their chronic conditions within a patient-centred healthcare system.

Economic Burden of the Out-of-Pocket Expenses for People with Multiple Sclerosis in France.

BACKGROUND: People with chronic diseases in France frequently incur out-of-pocket expenses (OOPE) related to their medical care. OBJECTIVE: The objective of this study was to evaluate OOPE incurred by people with multiple sclerosis (MS) with respect to direct non-medical and medical expenditure. METHODS: Data were collected through a web-based survey using an online patient community platform (Carenity). The survey questionnaire contained 87 questions (numerical response or Likert scale) and took less than 30 min to complete. Participants rated their disability on a ten-point scale. RESULTS: In total, 376 patients, with a mean age of 48.3 years (95% confidence interval [CI] 47.2-49.5), participated in the survey. Participants estimated that they spent an average of €127 each month on OOPE for their MS, principally on physician consultations (mean annual expenditure of €75 by 183 participants), non-physician consultations (€358 by 135 participants) and non-prescription medication (mean expense of €67 per pharmacy visit by 234 patients). In total, 77% of participants who needed adaptations to their home or vehicle because of their MS contributed to the cost. No obvious relationship between OOPE and self-rated disability was observed. A total of 61.4% of participants reported that they had to choose between spending money on MS care or on their family and social life. CONCLUSIONS: Most patients with MS incurred significant OOPE linked to consultations, non-prescription medications or home equipment and medical equipment. These outlays could lead to dilemmas when choosing between spending on MS care or family or social life.