Electronic patient-reported outcome measures using mobile health technology in rheumatology: A scoping review.

OBJECTIVE: This scoping review aims to characterize the current literature on electronic patient-reported outcome measures (ePROMs) in rheumatology and assess the feasibility and utility of ePROMs and mobile health technology in the management of rheumatic disease. INTRODUCTION: Patient-reported outcome measures (PROMs) are commonly used in rheumatology as they are important markers of disease activity and overall function, encourage shared decision-making, and are associated with high rates of patient satisfaction. With the widespread use of mobile devices, there is increasing interest in the use of mobile health technology to collect electronic PROMs (ePROM). INCLUSION CRITERIA: All primary studies that involve the collection of ePROMs using mobile devices by individuals with a rheumatic disease were included. Articles were excluded if ePROMs were measured during clinic appointments. METHODS: A scoping review was performed using Medline, Embase, PsycINFO, and CINAHL with index terms and key words related to "patient-reported outcome measures", "rheumatic diseases", and "mobile health technology". RESULTS: A total of 462 records were identified after duplicates were removed. Of the 70 studies selected for review, 43% were conference proceedings and 57% were journal articles, with the majority published in 2016 or later. Inflammatory arthritis was the most common rheumatic disease studied. Generic ePROMs were used over three times more often than disease-specific ePROMs. A total of 39 (56%) studies directly evaluated the feasibility of ePROMs in clinical practice, 19 (27%) were clinical trials that used ePROMs as study endpoints, 9 (13%) were focus groups or surveys on smartphone application development, and 3 (4%) did not fit into one defined category. CONCLUSION: The use of ePROMs in rheumatology is a growing area of research and shows significant utility in clinical practice, particularly in inflammatory arthritis. Further research is needed to better characterize the feasibility of ePROMs in rheumatology and their impact on patient outcomes.

Digital health technologies: opportunities and challenges in rheumatology.

The past decade in rheumatology has seen tremendous innovation in digital health technologies, including the electronic health record, virtual visits, mobile health, wearable technology, digital therapeutics, artificial intelligence and machine learning. The increased availability of these technologies offers opportunities for improving important aspects of rheumatology, including access, outcomes, adherence and research. However, despite its growth in some areas, particularly with non-health-care consumers, digital health technology has not substantially changed the delivery of rheumatology care. This Review discusses key barriers and opportunities to improve application of digital health technologies in rheumatology. Key topics include smart design, voice enablement and the integration of electronic patient-reported outcomes. Smart design involves active engagement with the end users of the technologies, including patients and clinicians through focus groups, user testing sessions and prototype review. Voice enablement using voice assistants could be critical for enabling patients with hand arthritis to effectively use smartphone apps and might facilitate patient engagement with many technologies. Tracking many rheumatic diseases requires frequent monitoring of patient-reported outcomes. Current practice only collects this information sporadically, and rarely between visits. Digital health technology could enable patient-reported outcomes to inform appropriate timing of face-to-face visits and enable improved application of treat-to-target strategies. However, best practice standards for digital health technologies do not yet exist. To achieve the potential of digital health technology in rheumatology, rheumatology professionals will need to be more engaged upstream in the technology design process and provide leadership to effectively incorporate the new tools into clinical care.

Real world data in rheumatology.

Real world data plays an important role in rheumatology, allowing us to gain deeper insights into disease progression and treatment outcomes, including safety. It takes us beyond the conclusions of a clinical trial and allows us to "test" outcomes in an uncontrolled, real-life environment. However, in order to generate trustworthy conclusions it is important that the provenance of and methodological considerations for handling real-world data are considered. This is increasingly true in this new era of big data, where not only the methods of handing such large datasets are critical, but also the ethics surrounding their collection and use. This overview summarises the key role real-world data has played in rheumatology, highlights key methodological challenges in analysing real-world data, and presents challenges for the future in order to continue to generate reliable scientific output using real-world data.

German Mobile Apps in Rheumatology: Review and Analysis Using the Mobile Application Rating Scale (MARS).

BACKGROUND: Chronic rheumatic diseases need long-term treatment and professional supervision. Mobile apps promise to improve the lives of patients and physicians. In routine practice, however, rheumatology apps are largely unknown and little is known about their quality and safety. OBJECTIVE: The aim of this study was to provide an overview of mobile rheumatology apps currently available in German app stores, evaluate app quality using the Mobile Application Rating Scale (MARS), and compile brief, ready-to-use descriptions for patients and rheumatologists. METHODS: The German App Store and Google Play store were systematically searched to identify German rheumatology mobile apps for patient and physician use. MARS was used to independently assess app quality by 8 physicians, 4 using Android and 4 using iOS smartphones. Apps were randomly assigned so that 4 apps were rated by all raters and the remaining apps were rated by two Android and two iOS users. Furthermore, brief app descriptions including app developers, app categories, and features were compiled to inform potential users and developers. RESULTS: In total, 128 and 63 apps were identified in the German Google Play and App Store, respectively. After removing duplicates and only including apps that were available in both stores, 28 apps remained. Sixteen apps met the inclusion criteria, which were (1) German language, (2) availability in both app stores, (3) targeting patients or physicians as users, and (4) clearly including rheumatology or rheumatic diseases as subject matter. Exclusion criteria were (1) congress apps and (2) company apps with advertisements. Nine apps addressed patients and 7 apps addressed physicians. No clinical studies to support the effectiveness and safety of apps could be found. Pharmaceutical companies were the main developers of two apps. Rheuma Auszeit was the only app mainly developed by a patient organization. This app had the highest overall MARS score (4.19/5). Three out of 9 patient apps featured validated questionnaires. The median overall MARS score was 3.85/5, ranging from 2.81/5 to 4.19/5. One patient-targeted and one physician-targeted app had MARS scores >4/5. No significant rater gender or platform (iOS/Android) differences could be observed. The overall correlation between app store ratings and MARS scores was low and inconsistent between platforms. CONCLUSIONS: To our knowledge, this is the first study that systematically identified and evaluated mobile apps in rheumatology for patients and physicians available in German app stores. We found a lack of supporting clinical studies, use of validated questionnaires, and involvement of academic developers. Overall app quality was heterogeneous. To create high-quality apps, closer cooperation led by patients and physicians is vital.

"Seeing Pain Differently": A Qualitative Investigation Into the Differences and Similarities of Pain and Rheumatology Specialists' Interpretation of Multidimensional Mobile Health Pain Data From Children and Young People With Juvenile Idiopathic Arthritis.

BACKGROUND: In contrast to the use of traditional unidimensional paper-based scales, a mobile health (mHealth) assessment of pain in children and young people (CYP) with juvenile idiopathic arthritis (JIA) enables comprehensive and complex multidimensional pain data to be captured remotely by individuals. However, how professionals use multidimensional pain data to interpret and synthesize pain reports gathered using mHealth tools is not yet known. OBJECTIVE: The aim of this study was to explore the salience and prioritization of different mHealth pain features as interpreted by key stakeholders involved in research and management of pain in CYP with JIA. METHODS: Pain and rheumatology specialists were purposively recruited via professional organizations. Face-to-face focus groups were conducted for each specialist group. Participants were asked to rank order 9 static vignette scenarios created from real patient mHealth multidimensional pain data. These data had been collected by a researcher in a separate study using My Pain Tracker, a valid and acceptable mHealth iPad pain communication tool that collects information about intensity, severity, location, emotion, and pictorial pain qualities. In the focus groups, specialists discussed their decision-making processes behind each rank order in the focus groups. The total group rank ordering of vignette scenarios was calculated. Qualitative data from discussions were analyzed using latent thematic analysis. RESULTS: A total of 9 pain specialists took part in 1 focus group and 10 rheumatology specialists in another. In pain specialists, the consensus for the highest pain experience (44%) was poorer than their ranking of the lowest pain experiences (55%). Conversely, in rheumatology specialists, the consensus for the highest pain experience (70%) was stronger than their ranking of the lowest pain experience (50%). Pain intensity was a high priority for pain specialists, but rheumatology specialists gave high priority to intensity and severity taken together. Pain spread was highly prioritized, with the number of pain locations (particular areas or joints) being a high priority for both groups; radiating pain was a high priority for pain specialists only. Pain emotion was challenging for both groups and was only perceived to be a high priority when specialists had additional confirmatory evidence (such as information about pain interference or clinical observations) to validate the pain emotion report. Pain qualities such as particular word descriptors, use of the color red, and fire symbols were seen to be high priority by both groups in interpretation of CYP pain reports. CONCLUSIONS: Pain interpretation is complex. Findings from this study of specialists' decision-making processes indicate which aspects of pain are prioritized and weighted more heavily than others by those interpreting mHealth data. Findings are useful for developing electronic graphical summaries which assist specialists in interpreting patient-reported mHealth pain data more efficiently in clinical and research settings.

Digital health: a new dimension in rheumatology patient care.

The new digital health innovations have opened up several opportunities to help the clinicians, patients and other caregivers of rheumatology healthcare system in maximizing efficiencies resulting in better patient outcomes. In the global context, digital health technology has the potential to bridge the distance gap between all the key stakeholders involved in rheumatology health care. In this review, we update on the recent advances in the field of digital health and highlight unique features of these technologies which would help in routine care. Application of technology in any form to enable, facilitate or enhance the quality of care is the foundation of digitised care. The components could be smartphone apps, sensors, video, social media platforms or messenger platforms, wearables or a combination of these enabling healthcare delivery and overcoming the constraints of distance, location and time. Digital therapeutics have started evolving and an important step in this direction is the involvement of FDA in the approval process. Speciality specific apps, personalised patient education as per disease status, remote specialist consultations or virtual health coach to guide on lifestyle modifications are some of the developments which have been facilitated by increased digitization in all walks of life. Assisted care with the help of robots rendering care in the hospitals or an intelligent robot guiding a patient by voice and visual sense at home are already at the threshold of entering the mainstream of patient care. Wearable devices equipped with powerful sensors are coming handy in keeping a watch on patient symptoms all the time and providing useful insights on disease progression, clinical response or complications. In chronic care such as rheumatology the implications, possibilities and benefits seem unprecedented. Real time data analytics and artificial intelligence are helping the clinicians, healthcare systems and policy makers optimise the resources and improve patient outcomes. Digitization of healthcare has gained momentum in the recent years and it is envisaged that it could be a catalyst to change, bridge the quality of care and most important democratise the healthcare access across the globe. However, more data, efficacy and objective results are needed which would be fulfilled by ongoing observational studies, clinical trials, systematic review and meta-analysis to further establish the role of digital health in the realms of patient care.

Diffusion and applications of musculoskeletal ultrasound in Italian Rheumatology Units.

The Musculoskeletal Ultrasound Study Group of the Italian Society of Rheumatology (SIR) was founded during the 68th SIR Congress, on November 2011. The request of activation of this group was based on the increasing interest and the widespread diffusion of ultrasound in the scientific rheumatology community and on the solid experience of some Italian rheumatologists in the field. The aims of the Study Group are to stimulate the applications and use of ultrasound in the clinical practice at the level of the Italian rheumatology units and, in addition, to develop research projects at a national level...

Situation of Spanish echography in Spanish rheumatology 2012.

OBJECTIVE: To know the situation of ultrasound in Spanish rheumatology. METHODS: A National survey addressed to all rheumatology units in hospitals with at least 200 beds. The questionnaire studied: a) the availability and the model of the ultrasound equipment, b) the degree of training, c) the purpose and areas of ultrasound examination, d) the usefulness, and e) the relevance of ultrasound in the training of residents. RESULTS: 169 units of the 234 surveyed physicians answered the questionnaire. The availability of ultrasound equipment was high (90%), 38.7% of rheumatologists use ultrasound, although half of the units had a rheumatologist especially dedicated to performing them. Training plans have enabled the incorporation of ultrasound, but there are areas that could be improved. The utility in routine clinical practice was scored at 7.8 (0-10), and ultrasound was integrated in the diagnostic and therapeutic decisions. There is a broad consensus on the need to include ultrasound in the training of residents. Administration is adding ultrasound to the portfolio of specialty services. CONCLUSIONS: In just 15 years, ultrasound has become available in 90% of rheumatology units from being previously inexistent. Its use is extensive, integrated into clinical practice and linked to the decision making processes. Training plans have been effective, but areas for improvement were identified, and there is a broad consensus on the need to integrate ultrasound in residents' training.

What the practising rheumatologist needs to know about the technical fundamentals of ultrasonography.

A transducer generates ultrasound waves and emits them into the body. Boundaries in or between tissues reflect the waves, and the transducer receives the reflected waves. A computer converts the information into images that are displayed on a monitor. Image resolution is greater with higher frequencies, and penetration is greater with lower frequencies. Linear probes with frequencies between 5 and 20 MHz are mainly used for musculoskeletal ultrasound. Image quality and resolution have improved significantly. Tissue harmonic imaging and cross-beam technology aid in differentiating between anatomical structures, although borders appear artificially thickened. Three-dimensional ultrasound provides additional coronary planes, and contrast agents increase the sensitivity for synovial blood flow in inflamed joints. This chapter provides further information regarding which ultrasound technology is the best for purchase by a rheumatology unit, how to organize ultrasound clinics, and how best to perform ultrasonography in daily practice, including the most important indications for ultrasound in rheumatology.

Ultrasound imaging for the rheumatologist. XVIII. Ultrasound measurements.

One of the largest challenges to the field of musculoskeletal ultrasonography is attempting to accurately quantify the changes seen in chronic arthritis. With advances in ultrasound technology, researchers have been increasingly exploring ways of more accurately assessing these changes and attempting to reach consensus with agreed scoring systems. This review presents the main scoring systems developed for quantifying sonographic findings indicative of synovitis and joint damage in patients with rheumatoid arthritis. Further investigation is required to attain international consensus on such scoring systems and to evaluate their impact on therapeutic decision-making.

Technology insight: tools for research, diagnosis and clinical assessment of treatment in idiopathic inflammatory myopathies.

Idiopathic inflammatory myopathies, known collectively as myositis, are chronic diseases that cause disability, mainly from muscle weakness, despite the use of immunosuppressive therapies. An improved outcome requires increased knowledge of the key molecular pathways that cause symptoms in muscles and other organs. Technological advances offer promise for improving our understanding of disease mechanisms, and some tools will be helpful in diagnosis and the assessment of therapeutic success. The application of new tools depends on their validation in longitudinal studies using clinical outcome measures combined with assessments of molecular events in affected organs. Clinical outcome measures and definitions of improvement have been developed and validated through the International Myositis Assessment and Clinical Studies collaboration. Some imaging techniques, such as MRI and magnetic resonance spectroscopy of muscles, and high-resolution CT of lungs, can assess changes in local inflammatory activity, among many other aspects of pathology. Changes in protein and gene expression patterns in repeated biopsies from affected organs (muscle, skin and lungs) provide molecular information and allow increasingly precise disease classifications and therapeutic evaluation, but are to date only research tools. This Review focuses on advances in diagnostic and outcome tools and their roles in clinical practice and clinical research in patients with polymyositis and dermatomyositis.

The PedsQL as a patient-reported outcome in children and adolescents with fibromyalgia: an analysis of OMERACT domains.

BACKGROUND: Fibromyalgia is a chronic health condition characterized by widespread musculoskeletal pain, multiple tender points on physical examination, generalized muscular aching, stiffness, fatigue, nonrestorative sleep pattern, cognitive dysfunction, and mood disturbance. Recently, the Outcome Measures in Rheumatoid Arthritis Clinical Trials (OMERACT) Fibromyalgia Syndrome Workshop ranked and prioritized the domains that should be consistently measured in fibromyalgia clinical trials, specifically, pain, generic health-related quality of life, fatigue, sleep quality, and physical function. The focus of these deliberations was exclusively on adult patients, and to our knowledge, these domains have not been previously tested within a multidimensional framework in children and adolescents with fibromyalgia. METHODS: An analysis to determine the feasibility, reliability, and validity of the PedsQL 4.0 (Pediatric Quality of Life Inventory) Generic Core Scales, PedsQL Multidimensional Fatigue Scale, and PedsQL Rheumatology Module Pain and Hurt Scale as patient-reported outcome (PRO) measures for pediatric patients with fibromyalgia. The PedsQL Scales were completed by 59 families in a pediatric rheumatology clinic in a large children's hospital. RESULTS: The PedsQL evidenced minimal missing responses (0.53% patient self-report, 0.70% parent proxy-report), achieved excellent reliability for the Generic Core Scales Total Scale Score (alpha = 0.88 patient self-report, 0.87 parent proxy-report), the Multidimensional Fatigue Scale Total Scale Score (alpha = 0.94 patient self-report, 0.94 parent proxy-report), and acceptable reliability for the 4-item Rheumatology Module Pain and Hurt Scale (alpha = 0.68 patient self-report, 0.75 parent proxy-report). The PedsQL Generic Core Scales and Multidimensional Fatigue Scale significantly distinguished between pediatric patients with fibromyalgia and healthy children. Pediatric patients with fibromyalgia self-reported severely impaired physical and psychosocial functioning, significantly lower on most dimensions when compared to pediatric cancer patients receiving cancer treatment, and significantly lower on all dimensions than pediatric patients with other rheumatologic diseases. Patients with fibromyalgia self-reported significantly greater pain and fatigue than pediatric patients with other rheumatologic conditions, and generally more fatigue than pediatric patients receiving treatment for cancer. CONCLUSION: The results demonstrate the excellent measurement properties of the PedsQL Scales in fibromyalgia. These PedsQL Scales measure constructs consistent with the recommended OMERACT Fibromyalgia Syndrome Workshop domains. The findings highlight the severely impaired HRQOL of pediatric patients with fibromyalgia. Regular monitoring of pediatric patients with fibromyalgia will help identify children and adolescents at risk for severely impaired HRQOL. These PedsQL Scales are appropriate outcome measures for clinical trials and health services research for pediatric patients with fibromyalgia.

Development of a Smiling Touchscreen multimedia program for HRQoL assessment in subjects with varying levels of literacy.

OBJECTIVE: As low literacy affects the assessment of health-related quality of life (HRQoL) in several ways (e.g., subject eligibility and cost of administration), better approaches to HRQoL assessment in subjects with varying literacy levels are needed. METHODS: We developed a multimedia touchscreen program (the Smiling Touchscreen, ST) to administer HRQoL instruments to subjects with varying levels of Chinese language and computer literacy, using an iterative process where patients' input on design, clarity of instructions, and user-friendliness were repeatedly gathered and incorporated in development. The ST thus has several user-friendly features for low-literacy subjects (e.g., presentation of individual items using visual and auditory stimuli, voice-text synchronization, and visual analog scale with a touch and drag function), which we evaluated using qualitative and quantitative methods. RESULTS: The ST was well accepted by subjects (n = 66, 76% female, median [interquartile] age: 49.0 [40.0, 56.0]) with high (n = 43) or low (n = 23) literacy, 98% of whom found it easy or very easy to use, and 85% found the voice-text synchronization feature useful. In low-literacy subjects without computer experience (30%), none reported any difficulties using the ST. The median (interquartile) time spent to complete the ST (four Instruction and Practice screens, 24 questions, one visual analog scale) for high- and low-literacy groups was 13.9 (9.6, 23.9) and 23.2 (15.8, 26.5) minutes, respectively. Among subjects expressing a preference (n = 47), 21 (47%) favored the ST over interviewer- or self-administration. CONCLUSION: The ST is well accepted by subjects with varying literacy levels, including those without computer experience. It is thus a promising new approach for HRQoL assessment among subjects with varying literacy levels.

Do visual analogue scale (VAS) derived standard gamble (SG) utilities agree with Health Utilities Index utilities? A comparison of patient and community preferences for health status in rheumatoid arthritis patients.

BACKGROUND: Assessment of Health Related Quality of Life (HRQL) has become increasingly important and various direct and indirect methods and instruments have been devised to measure it. In direct methods such as Visual Analog Scale (VAS) and Standard Gamble (SG), respondent both assesses and values health states therefore the final score reflects patient's preferences. In indirect methods such as multi-attribute health status classification systems, the patient provides the assessment of a health state and then a multi-attribute utility function is used for evaluation of the health state. Because these functions have been estimated using valuations of general population, the final score reflects community's preferences. The objective of this study is to assess the agreement between community preferences derived from the Health Utilities Index Mark 2 (HUI2) and Mark 3 (HUI3) systems, and patient preferences. METHODS: Visual analog scale (VAS) and HUI scores were obtained from a sample of 320 rheumatoid arthritis patients. VAS scores were adjusted for end-aversion bias and transformed to standard gamble (SG) utility scores using 8 different power conversion formulas reported in other studies. Individual level agreement between SG utilities and HUI2 and HUI3 utilities was assessed using the intraclass correlation coefficient (ICC). Group level agreement was assessed by comparing group means using the paired t-test. RESULTS: After examining all 8 different SG estimates, the ICC (95% confidence interval) between SG and HUI2 utilities ranged from 0.45 (0.36 to 0.54) to 0.55 (0.47 to 0.62). The ICC between SG and HUI3 utilities ranged from 0.45 (0.35 to 0.53) to 0.57 (0.49 to 0.64). The mean differences between SG and HUI2 utilities ranged from 0.10 (0.08 to 0.12) to 0.22 (0.20 to 0.24). The mean differences between SG and HUI3 utilities ranged from 0.18 (0.16 to 0.2) to 0.28 (0.26 to 0.3). CONCLUSION: At the individual level, patient and community preferences show moderate to strong agreement, but at the group level they have clinically important and statistically significant differences. Using different sources of preference might alter clinical and policy decisions that are based on methods that incorporate HRQL assessment. VAS-derived utility scores are not good substitutes for HUI scores.

Physician control of needle and syringe during aspiration-injection procedures with the new reciprocating syringe.

OBJECTIVE: To evaluate physician control of needle and syringe during aspiration-injection syringe procedures by comparing the new reciprocating procedure syringe to a traditional conventional syringe. METHODS: Twenty-six physicians were tested for their individual ability to control the reciprocating and conventional syringes in typical aspiration-injection procedures using a novel quantitative needle-based displacement procedure model. Subsequently, the physicians performed 48 clinical aspiration-injection (arthrocentesis) procedures on 32 subjects randomized to the reciprocating or conventional syringes. Clinical outcomes included procedure time, patient pain, and operator satisfaction. Multivariate modeling methods were used to determine the experimental variables in the syringe control model most predictive of clinical outcome measures. RESULTS: In the model system, the reciprocating syringe significantly improved physician control of the syringe and needle, with a 66% reduction in unintended forward penetration (p < 0.001) and a 68% reduction in unintended retraction (p < 0.001). In clinical arthrocentesis, improvements were also noted: 30% reduction in procedure time (p < 0.03), 57% reduction in patient pain (p < 0.001), and a 79% increase in physician satisfaction (p < 0.001). The variables in the experimental system--unintended forward penetration, unintended retraction, and operator satisfaction--independently predicted the outcomes of procedure time, patient pain, and physician satisfaction in the clinical study (p < or = 0.001). CONCLUSION: The reciprocating syringe reduces procedure time and patient pain and improves operator satisfaction with the procedure syringe. The reciprocating syringe improves physician performance in both the validated quantitative needle-based displacement model and in real aspiration-injection syringe procedures, including arthrocentesis.