Background:Involving patients affected with rheumatoid arthritis or ankylosing spondylitis in clinical trials may be highly challenging: in a worldwide context of competitive rheumatoid arthritis and ankylosing spondylitis clinical research, patient engagement is key to optimize medical research and increase participation rates.Objectives:The aim of this study was to identify patients’ motivations for and hindrances to joining a trail in order to increase participation rate by implementing tailored services and information.Methods:An online questionnaire was submitted from August 2017 to October 2017 to Carenity’s French members affected with rheumatoid arthritis or ankylosing spondylitis.Results:136 patients affected with rheumatoid arthritis (n = 55, 40%, mean age = 55 y/o, 71% of women) or ankylosing spondylitis (n = 81, 60%, mean age = 48 y/o, 80% of women) participated in the study. 10 patients (7%) already participated in a clinical trial.Non-participants (n=126) exposed the incentives that may increase participation rate: reimbursing the expenses related to the clinical trial can improve their motivation (median weight on motivation to join a trial = 10/10) as well as a better medical follow-up (8.0/10) or leveraging the trial’s investigator notoriety (8.0/10). Patients’ healthcare practitioners could be leveraged as well: their favorable opinion turns patients on to clinical trials (7.0/10). On the contrary, a doctor’s negative opinion may strongly deter patients from joining a trial (median weight on reluctance to join a trial = 8.0/10). Communication should aim at reassuring them about side effects (9.0/10), potential risks for their health (8.0/10) and more generally the risk that the new treatment would not be better than their current one (8.0/10). Logistic challenges should also be taken into account: the trip between patients’ home and the site of the clinical trial is perceived as an important burden (8.0/10).Implementing tailored services and information would be an efficient way to reassure patients and increase their willingness to participate. 81% of non-participants would be enticed to participate if they had access to a website to exchange with healthcare professionals or to follow the results of the trial. 79% would be interested in participants’ testimonials and 74% in a 24-hour phone helpline. Spreading and clarifying information before the trial is also critical: 6/10 patients who participated in a clinical trial did not understand clearly if they will have out-of-pocket costs and 5/10 patients were also unclear on the terms and conditions for leaving the clinical trial.Informing patients via convenient channels is key: 88% of participants and non-participants think that an online patient community is a relevant medium to convey information about clinical trials and 81% of non-participants would like to have access to an information brochure about the trial process.Conclusion:This real-world study allowed to identify concrete levers to reassure patients affected with rheumatoid arthritis ...

Immune-checkpoint inhibitors (ICI) are emerging as the standard of care for many cancers. However, HRQoL of patients treated with ICI in the real-world remain largely unknown. Social media is increasingly used by patients to express their views about their illness and treatment experience. The objective was to assess the conceptual similarity between cancer generic HRQoL measures and cancer patients' experience described in social media. Methods: Patient messages were retrieved from 19 different French social media sources between Jan-2011 and Aug-2018. Messages of interest were extracted using automatic processes and manual searches. Extracted messages were analysed by two independent reviewers. HRQoL statements were classified according to predefined HRQoL dimensions in the European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30 and FACT-G. Results: Overall, 137 ICI-treated patients posted HRQoL-related messages on social media. Cited dimensions of HRQoL were global health (115 patients), symptoms (76; mean: 2.1 per patient), emotion (49), role ( 22), physical functioning (13), professional situation (2) and cognitive state (2). Both the QLQ-C30 and FACT-G cover global health dimension expressed by patients in their messages. A total of 13 symptoms were identified from messages; the QLQ-C30 captured 5, whereas the FACT-G captured 3. Ten themes related to emotional functioning were identified, 2 were covered by the QLQ-C30 and 3 by the FACT-G. Seven themes were retrieved describing patients' role; the QLQ-C30 captured 5, whereas the FACT-G captured 3. In terms of physical functioning, 4 themes were identified; the QLQ-C30 captured all themes, whereas the FACT-G captured 1. Conclusions: Conceptual similarity between HRQoL themes from social media and the most commonly used generic HRQoL measures was generally suboptimal. Careful interpretation is required due to the relatively low sample size. A larger study on social media would be needed to assess correlation with tumor specific questionnaires of HRQoL.

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.

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