Unmet Information Needs of Patients with Rheumatic Diseases: Results of a Cross-Sectional Online Survey Study in Germany

Becker, Christian; Diener, Matthias; Hueber, Axel J.; Henes, Jörg; Krusche, Martin; Ignatyev, Yuriy; May, Susann; Erstling, Ulrike; Elling-Audersch, Corinna; Knitza, Johannes; Muehlensiepen, Felix

doi:10.3390/ijerph19127071

Cited by 6 publications

(2 citation statements)

References 21 publications

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“…High search interest was for general disease and treatment information, which is in line with previous research [ 20 , 21 ]. Particularly, the genetic trait HLA B27 was searched very often.…”

Section: Discussionsupporting

confidence: 73%

Analyzing web searches for axial spondyloarthritis in Germany: a novel approach to exploring interests and unmet needs

et al. 2023

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Axial spondyloarthritis (axSpA) is an underdiagnosed condition with a high disease burden. Due to delayed diagnosis and limited access to specialist care, conventional health data might not sufficiently capture the perspective of affected individuals. The aim of this study was to assess public interest, unmet needs, and disease burden of axSpA in Germany through the analysis of thematic, geographic, and temporal patterns in national web search data. Google Ads Keyword Planner was used to identify axSpA-related keywords and their monthly search volume in Germany between January 2017 and December 2020. Identified keywords were qualitatively categorized into six categories. Overall, 265 axSpA-related keywords with a search volume of 3,881,490 queries were identified. Nearly 81% of the total search volume was assigned to the category terms and definition, while 19% referred to either outcomes, symptoms, diagnosis, management, or causes. In the category outcomes, prognostic outcomes like “life expectancy” generated more searches than physical manifestations like “pain”. Less populated cities showed significantly more searches per 100,000 inhabitants than larger cities. Searches were seasonally stable with a Germany-wide peak in July 2017. This study provides an overview of public interest in axSpA based on web search data in Germany. The identified search patterns could be used to guide public health campaigns and optimize axSpA management in Germany.

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Section: Discussionsupporting

confidence: 73%

Analyzing web searches for axial spondyloarthritis in Germany: a novel approach to exploring interests and unmet needs

et al. 2023

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“…To enable optimal SDM and treatment, patients need to become experts of their disease and receive adequate structured education [6]. Due to the limited available time for medical staff with the patients, this need for information is currently not met in clinical routine [7][8][9].…”

Section: Introductionmentioning

confidence: 99%

Digitally-supported patient-centered asynchronous outpatient follow-up in rheumatoid arthritis - an explorative qualitative study

Stenzel

Hadaschik

May

et al. 2022

BMC Health Serv Res

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Objective A steadily increasing demand and decreasing number of rheumatologists push current rheumatology care to its limits. Long travel times and poor accessibility of rheumatologists present particular challenges for patients. Need-adapted, digitally supported, patient-centered and flexible models of care could contribute to maintaining high-quality patient care. This qualitative study was embedded in a randomized controlled trial (TELERA) investigating a new model of care consisting of the use of a medical app for ePRO (electronic patient-reported outcomes), a self-administered CRP (C-reactive protein) test, and joint self-examination in rheumatoid arthritis (RA) patients. The qualitative study aimed to explore experiences of RA patients and rheumatology staff regarding (1) current care and (2) the new care model. Methods The study included qualitative interviews with RA patients (n = 15), a focus group with patient representatives (n = 1), rheumatology nurses (n = 2), ambulatory rheumatologists (n = 2) and hospital-based rheumatologists (n = 3). Data was analyzed by qualitative content analysis. Results Participants described current follow-up care as burdensome. Patients in remission have to travel long distances. Despite pre-scheduled visits physicians lack questionnaire results and laboratory results to make informed shared decisions during face-to-face visits. Patients reported that using all study components (medical app for ePRO, self-performed CRP test and joint self-examination) was easy and helped them to better assess their disease condition. Parts of the validated questionnaire used in the trial (routine assessment of patient index data 3; RAPID3) seemed outdated or not clear enough for many patients. Patients wanted to be automatically contacted in case of abnormalities or at least have an app feature to request a call-back or chat. Financial and psychological barriers were identified among rheumatologists preventing them to stop automatically scheduling new appointments for patients in remission. Rheumatology nurses pointed to the potential lack of personal contact, which may limit the holistic care of RA-patients. Conclusion The new care model enables more patient autonomy, allowing patients more control and flexibility at the same time. All components were well accepted and easy to carry out for patients. To ensure success, the model needs to be more responsive and allow seamless integration of education material. Trial registration The study was prospectively registered on 2021/04/09 at the German Registry for Clinical Trials (DRKS00024928).

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Healthcare utilization and unmet needs of patients with antisynthetase syndrome: An international patient survey

Weiss,

Holzer,

Muehlensiepen

et al. 2023

Rheumatol Int

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Antisynthease syndrome (ASSD) is a rare, complex and understudied autoimmune disease. Internet-based studies can overcome barriers of traditional on-site research and are therefore very appealing for rare diseases. The aim of this study was to investigate patient-reported symptoms, diagnostic delay, symptoms, medical care, health status, working status, disease knowledge and willingness to participate in research of ASSD patients by conducting an international web-based survey. The multilingual questionnaire was created by an international group of rheumatologists and patients and distributed online. 236 participants from 22 countries completed the survey. 184/236 (78.0%) were female, mean age (SD) was 49.6 years (11.3) and most common antisynthetase antibody was Jo-1 (169/236, 71.6%). 79/236 (33.5%) reported to work full-time. Median diagnostic delay was one year. The most common symptom at disease onset was fatigue 159/236 (67.4%), followed by myalgia 130/236 (55.1%). The complete triad of myositis, arthritis and lung involvement verified by a clinician was present in 42/236 (17.8%) at disease onset and in 88/236 (37.3%) during the disease course. 36/236 (15.3%) reported to have been diagnosed with fibromyalgia and 40/236 (16.3%) with depression. The most reported immunosuppressive treatments were oral corticosteroids 179/236 (75.9%), followed by rituximab 85/236 (36.0%). 73/236 (30.9%) had received physiotherapy treatment. 71/236 (30.1%) reported to know useful online information sources related to ASSD. 223/236 (94.5%) were willing to share health data for research purposes once a year. Our results reiterate that internet-based research is invaluable for cooperating with patients to foster knowledge in rare diseases.

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Unmet Information Needs of Patients with Rheumatic Diseases: Results of a Cross-Sectional Online Survey Study in Germany

Cited by 6 publications

References 21 publications

Analyzing web searches for axial spondyloarthritis in Germany: a novel approach to exploring interests and unmet needs

Analyzing web searches for axial spondyloarthritis in Germany: a novel approach to exploring interests and unmet needs

Digitally-supported patient-centered asynchronous outpatient follow-up in rheumatoid arthritis - an explorative qualitative study

Healthcare utilization and unmet needs of patients with antisynthetase syndrome: An international patient survey

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