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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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