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- Mosor, E, et al.
(författare)
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Young people's perspectives on patient-reported outcome measures in inflammatory arthritis: results of a multicentre European qualitative study from a EULAR task force
- 2021
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Ingår i: RMD open. - : BMJ. - 2056-5933. ; 7:1
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Tidskriftsartikel (refereegranskat)abstract
- Although patient-reported outcome measures (PROMs) are increasingly used in clinical practice and research, it is unclear whether these instruments cover the perspective of young people with inflammatory arthritis (IA). The aims of this study were to explore whether PROMs commonly used in IA adequately cover the perspective of young people from different European countries.MethodsA multinational qualitative study was conducted in Austria, Croatia, Italy and the Netherlands. Young people with either rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), Still’s disease, psoriatic arthritis (PsA) or spondyloarthritis (SpA), aged 18–35 years, participated in semistructured focus group interviews. Thematic analysis was used and data saturation was defined as no new emergent concepts in at least three subsequent focus groups.ResultsFifty-three patients (21 with RA/JIA/Still’s, 17 with PsA, 15 with SpA; 72% women) participated in 12 focus groups. Participants expressed a general positive attitude towards PROMs and emphasised their importance in clinical practice. In addition, 48 lower level concepts were extracted and summarised into 6 higher level concepts describing potential issues for improvement. These included: need for lay-term information regarding the purpose of using PROMs; updates of certain outdated items and using digital technology for data acquisition. Some participants admitted their tendency to rate pain, fatigue or disease activity differently from what they actually felt for various reasons.ConclusionsDespite their general positive attitude, young people with IA suggested areas for PROM development to ensure that important concepts are included, making PROMs relevant over the entire course of a chronic disease.
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- Seidler, Y, et al.
(författare)
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KNOWING WHAT TO DO WITH THE DATA - A QUALITATIVE STUDY ON CHALLENGES OF USING SMARTPHONE-BASED EPROS IN RHEUMATOID ARTHRITIS
- 2022
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Ingår i: ANNALS OF THE RHEUMATIC DISEASES. - : BMJ. - 0003-4967 .- 1468-2060. ; 81, s. 1081-1081
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- Using patient-reported outcomes (PROs) has a long tradition in rheumatology, and PRO measurement is included in many composite indices evaluating disease progression and treatment response [1]. However, little is known about patients´ and health professionals´ (HPs) perceptions of using digitally collected PROs, the so-called ePROs, with a personal smartphone app.ObjectivesTo identify main challenges in utilising ePROs for management and treatment of rheumatoid arthritis from patients’ and HPs’ perspectives.MethodsWe interviewed 25 people with rheumatoid arthritis (RA) and 17 HPs (nurses, rheumatologists, and physiotherapists) from Austria and Denmark. We used the RheumaBuddy app as a practical example to illustrate the digital data collection and the feedback that patients would get from entering their self-reported outcomes. Interviews were recorded and transcribed. We applied a qualitative thematic analysis to identify major themes using a procedure of rigorous coding. Analysis was done by two researchers, and conflicts were solved by consensus. Ethical approval was obtained in both countries.ResultsThree main themes emerged: 1) Being simple yet comprehensive; 2) Resources to interpret, use and act upon the collected data; and 3) Being reminded of the disease. Within the first theme, many valued the intuitiveness and simplicity of ePROs, especially when used as a monitoring tool in between clinical visits. HPs were concerned about not to overwhelm the patients with too many questions. On the other hand, the short ePROs asked in the app were not comprehensive enough to capture psychosocial and lifestyle aspects of the disease which were considered important both by patients and HPs. Within the second theme, patients and HPs expressed that ePROs could be the basis for shared decision making. Nevertheless, some patients had clearer ideas on making use of the feedback they could get from their self-reported data than the others. Participants from Denmark, who experienced a higher level of digital health maturity in official institutions, expressed more proactive use of the data than participants from Austria who were on average younger than their Danish counterparts. One patient in Austria even asserted having no idea what to do with the collected data but believed that the “doctor will make good use of it”. HPs in both countries, however, indicated that they needed more resources, skills, and time to make sense of the ePRO data and act accordingly. Under the third theme, patients considered the collection of ePROs to be very important when pain and disease activity were high. HPs, on the other hand, were more concerned that the regular collection of ePROs might constantly remind patients that they are living with the disease.ConclusionThe potential adoption of ePROs in practice depends on both patients and HPs’ motivations and ideas to use the feedback they would get from the collected data. This might be influenced by the level of digital health maturity of a country, as well as available resources. In addition, ePROs need to be intuitive and simple, but at the same time comprehensive and reliable enough so that they can be used for shared decision making. Challenges remain for the ePROs to be used as supporting and empowering tools, and not as reminders of the disease and pain.Table 1.Demographic data of the participants (N=42)DemographicAustriaDenmarkTotalDataPatientHPPatientHPPatientHPN14101172517Women (%)10(71)6(60)7(64)5(71)17(68)11(65)Men (%)4(29)4(40)4(36)2(29)8(32)6(35)AgeMean (Range)54(30-76)41(29-63)65(37-77)47(31-59)60(30-77)44(29-63)References[1]T Stamm, I Parodis, and P Studenic. Patient-reported outcomes with anifrolumab in patients with systemic lupus erythematosus, Lancet Rheumatol, (2022), in Press.AcknowledgementsWe would like to express our particular thank you to all those who have taken part in the interview study and for their valuable inputs.Disclosure of InterestsYuki Seidler: None declared, Tanja Schjødt Jørgensen Speakers bureau: AbbVie, Pfizer, Roche, Novartis, UCB, Biogen and Eli Lilly., Consultant of: AbbVie, Pfizer, Roche, Novartis, UCB, Biogen and Eli Lilly, Paul Studenic: None declared, Helga Radner Speakers bureau: Gilead, Merck Sharp, Pfizer, Abbvie, Consultant of: Gilead, Merck Sharp, Pfizer, Abbvie, Thomas Nygaard: None declared, Nadine Weibrecht: None declared, Nikolas Popper Speakers bureau: Roche, Consultant of: dwh GmbH (as CSO), Lars Erik Kristensen Speakers bureau: Pfizer, AbbVie, Amgen, UCB, Gilead, Biogen, BMS, MSD, Novartis, Eli Lilly, and Janssen pharmaceuticals, Consultant of: Pfizer, AbbVie, Amgen, UCB, Gilead, Biogen, BMS, MSD, Novartis, Eli Lilly, and Janssen pharmaceuticals, Grant/research support from: IIT research grants from Novo, UCB, Eli Lilly; Novartis and Abbvie, Tanita-Christina Wilhelmer: None declared, James Rickmann: None declared, Erika Mosor: None declared, Valentin Ritschl: None declared, Tanja Stamm Speakers bureau: AbbVie, Novartis, Roche, Sanofi, and Takeda., Consultant of: AbbVie and Sanofi Genzyme., Grant/research support from: AbbVie and Roche.
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4. |
- Studenic, P, et al.
(författare)
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RHEUMABUDDY4.0 LEADING THE PATH TO A PATIENT-DRIVEN ELECTRONIC SUPPORT AND MONITORING TOOL
- 2022
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Ingår i: ANNALS OF THE RHEUMATIC DISEASES. - : BMJ. - 0003-4967 .- 1468-2060. ; 81, s. 1801-1802
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Konferensbidrag (övrigt vetenskapligt/konstnärligt)abstract
- The use of health apps has become more popular in recent years, but it is still a small and rather unregulated market. Few apps have been designed in collaboration with patients and these mostly address patient reported symptoms. Some clinical registries have already developed patient apps to complete patient-reported outcome measures (PROMs) on smartphones, which normally would have been collected during an outpatient visit and have shown interchangeability. The next step would be providing a patient app offering possibilities not only of individual disease tracking, but to provide automated peer support, health information and behavioural advice.ObjectivesWe aimed to further develop and validate RheumaBuddy, a health app for patients with rheumatoid arthritis (RA), from a standard monitoring app to an intelligent health app tailored to the needs of the user that provides transparency to all important stakeholders in Rheumatology care.MethodsThis is an international interdisciplinary project between Austrian and Danish partners funded by the EUREKA program. Rheumatologists, health scientists, digital data experts and patients with RA joined forces in a 4 phase-program, running from 2020 to 2023. Phase 1 continues to develop the app in a co-creation approach in several iterations with patients. Phase 2 concerns developing an automated learning algorithm based on user data to identify patient strata and connect these with helpful non-pharmacological interventions. Phase 3 connects healthcare system data on diagnosis, medication prescription, healthcare facility usage with a large clinical RA database. By that we develop patient pathways that correlate high granularity data with system resources to retrieve results on socioeconomic impact. In phase 4 a randomised clinical trial will evaluate the effect of the developed RB4.0 on clinical disease activity and quality of life.ResultsCurrently, RB is regularly being used by more than 3100 patients in 35 countries and 8 languages throughout Europe. The current RheumaBuddy version offers logging of symptoms using Likert scale questions, a joint mannequin to mark painful body parts and a peer-support forum. Additionally, the user can anytime display his/her entries over time in a graphical report and also share data with the healthcare provider. This version is extended with tracking of sleep, working hours and other behaviours. A consultation compass function helps the patient to reflect on goals and issues before the rheumatologist visit.Within this project, we already established a first version of a Recommender System (RS), which computes correlations between user entries (e.g. between a user’s mood and pain), thus providing individual feedback. Through integration of information obtained from the app with claims data and clinical data from a RA registry, patterns can be identified and translated into different case models that concern the impact of common RA symptoms. By mapping these scenarios with evidence based behaviour and lifestyle advice, the “virtual coach” (advanced RS) will be developed and integrated into the RB4.0 system. During continuous data collection on app users, similarities in user behaviour can be identified, and similar entry patterns can be grouped. This will allow users to exchange and learn from each other regarding certain difficult situations (ex. “life-hack”) etc.We are creating a comprehensive system in providing feedback to both clinical and psychosocial aspects of coping and disease management, as well as everyday practicalities for living with a chronic disease. Figure 1 displays these aspects, contributing the empowerment of patients.Figure 1.RB4.0 shall support people living with RA in dealing with disease impactConclusionRheumaBuddy4.0 will provide RA patients the means to improve their quality of life on an individual level, better understand their needs and therapy which could support overcoming barriers of successful shared decision making to achieve better outcomes.Disclosure of InterestsPaul Studenic: None declared, Tanja Stamm Speakers bureau: AbbVie, Novartis, Roche, Sanofi, and Takeda, Consultant of: AbbVie and Sanofi Genzyme, Grant/research support from: AbbVie and Roche, Yuki Seidler: None declared, Andreas Dam Speakers bureau: Gilead, Galapagos, BMS, Roche, Takeda, Merck, Consultant of: Gilead, Galapagos, BMS, Roche, Takeda, Merck, Nadine Weibrecht: None declared, Günther Zauner: None declared, Thomas H Jakobsen: None declared, Rebekka L. Hansen: None declared, Nikolas Popper Speakers bureau: Roche, Consultant of: as CSO of dwh GmbH, Tanita-Christina Wilhelmer: None declared, Helga Radner Speakers bureau: Gilead, Merck Sharp, Pfizer, Abbvie, Consultant of: Gilead, Merck Sharp, Pfizer, Abbvie, Romualdo Ramos: None declared, James Rickmann: None declared, Christoph Urach: None declared, Lars Erik Kristensen Speakers bureau: AbbVie, Pfizer Janssen, Novartis, Galapagos, UCB, Biogen and Eli Lilly, Consultant of: AbbVie, Pfizer, Janssen, Novartis, Galapagos, UCB, Biogen and Eli Lilly, Grant/research support from: IIT grants from UCB, Biogen, Eli Lilly, Novartis, Tanja Schjødt Jørgensen Speakers bureau: AbbVie, Pfizer, Roche, Novartis, UCB, Biogen and Eli Lilly, Consultant of: AbbVie, Pfizer, Roche, Novartis, UCB, Biogen and Eli Lilly
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