Perceived emotional and informational support for cancer: Patients’ perspectives on interpersonal versus media sources

This study examined cancer patients’ (N = 355, 65.4 % female, Mage = 54.35, SDage = 11.25) perceived emotional and informational support from a variety of interpersonal and media sources. We recruited patients from cancer patient association websites and online cancer forums and asked them to report to what extent they received support from interpersonal and media sources. Patients rated professional sources (e. g., oncologists) and personal sources (e. g., family) as nearly equal sources of emotional support; however, professional sources were rated as significantly greater sources of informational support. Although family and oncologists were the most mentioned interpersonal sources of support, they were also the most mentioned disappointing sources. Of the media sources, online interaction sources (e. g., online support groups) were rated as nearly equivalent sources of emotional support as interpersonal sources. That patients perceived emotional support, not only informational support, from various media sources is promising since interpersonal sources can be disappointing to some patients.

AB0665 SWITCHING INTRAVENOUS ABATACEPT AND TOCILIZUMAB TO SUBCUTANEOUS INJECTIONS DURING THE COVID-19 PANDEMIC: A FRENCH EXPERIENCE

Background:The COVID-19 pandemic requires measures to reduce patient exposure to the risk of contamination, in particular by limiting hospital admissions and promoting lockdown. In order to respond to these healthcare measures, patients were offered to replace intravenous infusions (IV) of abatacept (ABT) and tocilizumab (TCZ) to subcutaneous injections (SC).Objectives:To assess the outcome of patients who switched from IV ABT or TCZ to SC during the COVID-19 pandemic.Methods:A survey was conducted in December 2020 in partnership with the national AFP-RIC patient association to assess the outcome and satisfaction of patients who switched from ABT or TCZ IV to SC during the first wave of COVID-19 pandemic.We also analysed the outcome of patients who switched from IV ABT or TCZ to SC in the rheumatology department of Cochin Hospital during the lockdown in April/may 2020. Articular activity parameters (swollen joint count, pain joint count, visual analogic pain scale, CRP, DAS-28 activity score) were assessed at medical visits before and 6 months after switching from IV to SC.The data collected from the AFP-RIC patient association and the rheumatology department of Cochin Hospital were then aggregated and analyzed by Chi-square and Wilcoxon tests.Results:81 patients responded to the survey carried out by AFP-RIC patient association, including 29 treated with IV ABT (n=15, 52%) or TCZ (n=14, 48%). 17/29 (59%) were offered to switch from IV to SC, 14/17 patients (82%) accepted and 7 patients were still receiving ABT or TCZ SC injections in December 2020. In the rheumatology department of Cochin hospital, 71 patients were scheduled in April/May 2020 to receive IV ABT or TCZ, and 27 (38%) switched to SC. After 6 months, 19 patients (70%) had maintained SC injections, were satisfied with this injection route of administration and their articular activity parameters were unchanged (Table 1).Table 1.Course of Disease parameters evaluated in the 19 patients who maintained abatacept or tocilizumab SC injections in the Rheumatology department of Cochin HospitalParameter, mean(SD)Inclusion visitSwitch to SC(n=19)6 month visit (n=19)P-valueDAS282.3 (1.2)2.3 (0.7)0.62Tender joint count2.5 (3.5)1.3 (1.7)0.49Swollen joint count1.3 (2.5)0.9 (0.6)0.35Patient Global Health (cm)3.2 (1.9)2.6 (1.8)0.60CRP (mg/L)3.2 (4.1)5.2 (4.9)0.56CRP: C-Reactive Protein, SD: Standard DeviationThe combined analysis of these two populations included 41 patients (33 rheumatoid arthritis, RA, 7 juvenile idiopathic arthritis, JIA and 1 polymyalgia rheumatica) who switched to SC ABT or TCZ. 26/41 (63.5%) patients maintained SC injections and IV was re-established in 15/41 (36.5%). Reasons for returning to IV were poor tolerance of SC injections (n=6, 40%), worsening symptoms (n=11, 73%), patient preference to see a rheumatologist in hospital (n=10, 67%) and the high number of SC injections (n=2, 13%). The proportion of patients returning to IV was higher in RA patients compared to patients with JIA (42% vs. 14%, p = 0.08). Age and disease duration were not significantly different between patients who maintained SC injections and those who returned to IV (respectively p=0.97 and p=0.63).Conclusion:Our study suggests that switching from IV ABT or TCZ to SC is an acceptable procedure during the COVID-19 pandemic, especially for patients with JIA.Acknowledgements:Association AFP-RIC (Angélique Hochedé, Cyrielle Beller, Sandrine Rollot) and the members of the association for their help in the conduction of the surveyDisclosure of Interests:None declared.

Developing recommendations for the diagnosis and treatment of Lyme disease: the role of the patient's perspective in a controversial environment

Context The Ministry of Health in Québec requested the National Institute of Excellence in Health and Social Services to produce clinical and implementation recommendations for the prophylaxis, diagnosis, and treatment of Lyme disease. Objectives (i) Describe the process of trialing different modalities of patient engagement as a means to integrate a diversity of patient perspectives and (ii) Describe the learning process of INESSS regarding the integration of the patient perspective. Methodology All documents were analyzed, and a survey with all advisory committee members and semi-structured interviews with stakeholders were conducted. Each interview was transcribed verbatim and imported into QDA miner software for the purposes of analysis. Data analysis was carried out concurrently with data collection to allow for an iterative approach between data collection and analysis. Results Five methods to integrate the perspectives of patients were used: (i) interviews with patients, (ii) inclusion of patient partners within the advisory committee, (iii) literature review, (iv) focus groups with one patient association, and (v) feedback from patient associations on recommendations intended for decision makers and other targeted stakeholders. The patient partners influenced decisions by sharing their experiential knowledge. The patient interviews and the literature review added an in-depth perspective on the disease and experience with the healthcare system. The patient association members shared their perspectives and helped disseminate the recommendation to sustain a practice change. Conclusion The combination of methods to collect and integrate patients’ knowledge and patient associations’ perspectives helped develop a comprehensive understanding of a controversial object of evaluation.

OP0319-PARE SEE ME HEAR ME: AN ANCA-ASSOCIATED VASCULITIS PATIENT CO-CREATION INITIATIVE

Background:ANCA-associated Vasculitis (AAV) is a rare, severe small vessel vasculitis that affects multiple organs with a high acute mortality risk. As every patient presents differently, diagnosis is often delayed. Although treatments exist, responses vary, and remission is often not achieved or sustained. From the time of initial diagnosis onwards, patients suffer from an impaired quality of life. Coping with pain, fatigue, ongoing symptoms and combating challenges becomes a complex task and patients may be challenged in how best to communicate these emotions with health care professionals. We aimed to develop an initiative with Art and Voice, that would seek to empower people living with AAV and their carers in feeling understood, seen and heard in a meaningful way. This would invite a collective understanding of ‘how people make sense of key life experiences and what it means to them’ by creating a common language to address poorly addressed issues.Objectives:This project aims to provide a voice to patients to express personal experiences and complexity of everyday living and empower people to feel in control of their own health through an online platform. It should also allow practitioners to gain new awareness about issues faced by their patients, to better understand the relationships between caring and curing, hearing and listening.Methods:We collaborated with 10 patient association groups representatives, 17 AAV patients and 9 of their carers across 7 European countries. A series of workshops were set up to discuss issues faced and aid the subsequent production of a range of materials designed to provide clear, comprehensive content that would help individuals cope with the physical and emotional impact of AAV from diagnosis to living with it. This work was supported by a digital artist who is a rheumatologist living with vasculitis.Results:The co-creation of patient information materials featuring real life patients was successful and led to the development of a creative initiative called SEE ME.HEAR ME with an online platformwww.myancavasculitis.com. This includes: (1) an awareness programme featuring artwork created by the digital artist and advised by the patients which captures the essence of AAV from the patients view (see Figure). (2) a series of first-hand patient and carer stories capturing their authentic voice on ‘what it is like to live with the disease’. (3) extensive written content designed to fill information gaps around AAV diagnosis, investigations and treatment and what to expect during clinical follow up. The platform supports patients in asking questions and seeking information while signposting them to their own healthcare professional for advice and their local country patient association for support.Table 1.Sensitivities and specificities of examinations in gout and calcium pyrophosphate deposition diseaseConclusion:People with AAV need support throughout life, the profound psychosocial influence from illness makes the lived experience, challenging. SEE ME. HEAR ME online patient platform aims to generate awareness around AAV, improve physician and patient dialog, and enhance people’s experiences of living and coping with the disease. In addition it provides support for carers and giving valuable insights to friends, family and the general public about what the lived experience with AAV looks like.Acknowledgments:We wish to thank all European patients and patient association leads who worked on this projectDisclosure of Interests:Shanali Perera Consultant of: Vifor Pharma, Dijana krafcsik Employee of: Vifor Pharma, Peter Rutherford Shareholder of: Vifor Pharma, Employee of: Vifor Pharma, Baxter Healthcare

AB0779 DOES DACTYLITIS/ENTESITIS PREDICT THE RESPONSE TO A SPECIFIC BIOLOGICAL TREATMENT IN PSORIATIC ARTHRITIS?

Background:Spondylarthritis are diseases with a pathophysiological focus in enthesis with a different extent of synovial component. In the event of therapeutic failure with DMARDs, the clinician may consider biological therapy with anti-TNF drugs or other targets such as IL23 Despite this, most patients receive first-line anti-TNFs. Given that IL19 and IL23 activity is recognized at the level of the enthesis.Objectives:To evaluate whether the presence of dactylitis/entesitis could be useful in the choice of a particular biological therapy.Methods:A secondary analysis of a previous study was performed based on an electronic survey completed by patients with PsoA and distributed among members of the patient association “Acción Psoriasis”. Records from 191 respondents who had received at least one biological therapy were included. Patients were grouped according to the presence or absence of dactylitis or enthesitis. The rate of need to progress to the next therapeutic biologic line was compared.Results:61 patients reported dactylitis and 155 enthesitis. Distribution of treatments in patients with dactylitis: 33 patients received an anti-TNF-alpha, 11 Secukinumab and 12 Ustekinumab. 15 patients in the group receiving an anti-TNF-alpha had to substitute another treatment within 2 years (45.4%). 3 patients in each of the remaining groups had to substitute treatment within 2 years (27.2% and 25%, respectively). Compared to those receiving anti-TNF-alpha therapy, patients treated with Secukinumab or Ustekinumab had greater therapeutic persistence at 2 years (P<0.001, in both cases). Distribution of treatments in patients with enthesitis (not including dactylitis): 115 received an antiTNF-alpha, 25 received Secukinumab and 18 received Ustekinumab. 38 patients who received an anti-TNF-alpha had to substitute it within 2 years (24.5%). 4 patients who received Secukinumab and 3 who received Ustekinumab had to substitute their treatments in less than 2 years (16% and 16.6%, respectively). Compared to patients receiving anti-TNF-alpha therapy, patients treated with Secukinumab and Ustekinumab had a higher proportion of therapeutic persistence at 2 years (P<0.05 for both cases).Conclusion:The presence of dactylitis more than enthesitis, is associated with a higher proportion of therapeutic persistence in those patients treated with anti-IL17 or anti-IL23 therapies. Although there are multiple factors that condition the choice of biological therapies in patients with PsoA, the presence of enthesitis and dactilitis (understood as polyenthesitis) should be considered among the most important ones.Disclosure of Interests:None declared

Use of eHealth by rheumatoid arthritis patients: an observational, cross sectional, multicenter study (Preprint)

BACKGROUND The use of eHealth tools (the Internet, mobile applications, connected devices) in chronic diseases and in the field of rheumatoid arthritis (RA) is growing. eHealth may improve the overall quality of care of patients suffering from chronic diseases. OBJECTIVE The main objective of this study was to describe the use of eHealth by RA patients in France. The secondary objectives were to identify associations between demographic and disease characteristics and eHealth tools use and also to assess patients’ expectations for eHealth. METHODS We conducted a cross-sectional, multicenter study. Patients with RA according to the ACR / EULAR 2010 criteria were recruited in 5 University Hospitals (Bordeaux, Clermont-Ferrand, Limoges, Montpellier and Toulouse). Patients completed an anonymous self-questionnaire including demographic data, assessment of the use of eHealth (access, support, frequency of use, type of use, reason for use). The rheumatologist in charge of each patient completed an independent medical questionnaire collecting the disease characteristics, the activity of RA and the treatments. Data was collected between December 2018 and July 2019. RESULTS The questionnaires were completed by 575 patients, with an average age of 62±13 years, 78% of whom were women. 473 (82%) patients had access to eHealth through a computer (n=402 (86%)), a tablet (n=188 (40%)) or a smartphone (n=221 (47%)). Among them, 170 (37%) used the Internet for health in general and 134 (29%) specifically for RA. Regarding the use of eHealth for RA, all patients used it to learn about the pathology and 89 (66%) as a tool to help monitoring RA. Most of them (n=87, (70%)) had a paper file, 24/125 patients (19%) used a digital tool (spreadsheet n=10 or mobile application n=9 or website n=5) and 31 patients (25%) did not use any tools to monitor their RA. Few patients (12%) used numeric reminders of treatments. A specific application for RA was used by 27 patients (21%) using eHealth. Age, level of study, employment, treatment, comorbidities, membership of a patient association and patient education program were associated with the use of eHealth for RA in univariate analysis. In multivariate analysis, membership in a patient association (OR: 5.8 [3.0-11.2]), bDMARDs use (OR: 0.6 [0.4-1]) and comorbidities (OR: 0.7 [0.6-0.8]) remained associated with the use of eHealth for RA. According to patients, recommendation by a doctor (n=225, 68%), ease of use (n=105, 32%) and data security (n=69, 21%) were the factors that would favor the use of eHealth. CONCLUSIONS To date, few patients have used eHealth for their disease. The use of a reliable and validated eHealth tool in RA could therefore be promoted by rheumatologists and could optimize the therapeutic adherence. CLINICALTRIAL

Association of Patients' Organisations in the federation of Bosnia and Herzegovina: Social Participation Concept

The civil sector should identify an appropriate form of representation through which the interests of all categories of patients will be expressed. The easiest way to achieve this goal is through Supreme Patient Association consisted of representatives from registered associations whose legally confirmed purpose is the exercise of patients' rights. The Association mission must be the policy of protecting the rights of all patients and patients’ groups, while fulfillment of the obligation to protect the rights of the patients and the monitoring of the implementation of the Act would be its primary responsibility. The Initiative Committee should make an effort to gather representatives of existing patients’ associations and other stakeholders, and guide them to form the umbrella association. At the same time, there needs to be made a clear distinction in terms of difference in respect to roles of the future founder. In short, the tasks of this association can be divided into three areas: raising awareness; encouraging authorities to respect the principles of equal protection of patients' rights; and collecting data on the state of patient rights protection. In conclusion, it logically seems completely clear and justified: 1. existence of one supreme/umbrella association, 2. collection of relevant data in a methodologically correct manner by authorized bodies and from the entire territory for which the umbrella association was established; and 3. to inform the base on conclusions of analysies concernig particular issues - both for a specific location and for the entire territory (either the municipality; the canton; the federation).