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

PLoS ONE ◽  
2021 ◽  
Vol 16 (7) ◽  
pp. e0253615
Author(s):  
Jaclyn Shelton ◽  
Sierra Casey ◽  
Nathan Puhl ◽  
Jeanette Buckingham ◽  
Elaine Yacyshyn
Keyword(s):  
Rheumatic Disease ◽  
Outcome Measures ◽  
Mobile Health ◽  
Scoping Review ◽  
Inflammatory Arthritis ◽  
Health Technology ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Mobile Health Technology ◽  
Patient Reported

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.

scholarly journals Clinical Significance and Diagnostic Value of Pain Extent Extracted from Pain Drawings: A Scoping Review

Diagnostics ◽  
2020 ◽  
Vol 10 (8) ◽  
pp. 604
Author(s):  
Marco Barbero ◽  
Marcos J. Navarro-Santana ◽  
María Palacios-Ceña ◽  
Ricardo Ortega-Santiago ◽  
Corrado Cescon ◽  
...  
Keyword(s):  
Cohort Studies ◽  
Outcome Measures ◽  
Scoping Review ◽  
Methodological Quality ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Cross Sectional ◽  
Patient Reported ◽  
Pain Drawings ◽  
Pain Extent

The current scoping review aimed to map current literature investigating the relationship between pain extent extracted from pain drawings with clinical, psychological, and psycho-physiological patient-reported outcome measures in people with pain. Electronic databases were searched for cross-sectional cohort studies that collected pain drawings using digital technology or a pen-on-paper approach and assessed for correlations between pain extent and clinical, psychological or psycho-physical outcomes. Data were extracted by two different reviewers. The methodological quality of studies was assessed using the Newcastle–Ottawa Quality Assessment Scale. Mapping of the results included: 1, description of included studies; 2, summary of results; and 3, identification of gaps in the existing literature. Eleven cross-sectional cohort studies were included. The pain disorders considered were heterogeneous, ranging from musculoskeletal to neuropathic conditions, and from localized to generalized pain conditions. All studies included pain and/or pain-related disability as clinical outcomes. Psychological outcomes included depression and anxiety, kinesiophobia and catastrophism. Psycho-physical measures included pressure or thermal pain thresholds. Ten studies were considered of high methodological quality. There was heterogeneity in the associations between pain extent and patient-reported outcome measures depending on the pain condition. This scoping review found that pain extent is associated with patient-reported outcome measures more so in patients presenting with musculoskeletal pain, e.g., neck pain or osteoarthritis, rather than for those with neuropathic pain or headache.

AB1255 AGREEMENT BETWEEN PATIENT-REPORTED OUTCOME MEASURES COLLECTED VIA A SMARTPHONE APPLICATION VS A TOUCHSCREEN SOLUTION IN AN OUTPATIENT CLINIC AMONG PATIENTS WITH INFLAMMATORY ARTHRITIS: A RANDOMISED, WITHIN-PARTICIPANT TRIAL

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1919-1920
Author(s):  
L. Uhrenholt ◽  
R. Christensen ◽  
L. Dreyer ◽  
A. Mortensen ◽  
E. M. Hauge ◽  
...  
Keyword(s):  
Confidence Interval ◽  
Outcome Measures ◽  
Outpatient Clinic ◽  
Inflammatory Arthritis ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
University Hospital ◽  
Patient Reported ◽  
The Mean ◽  
Equivalence Margin

Background:Patient-reported outcome measures (PROMs) are essential to understand the patient’s perception of arthritis activity. In Demark, PROMs are registered on a touchscreen in the outpatient clinic. However, some patients find it inconvenient due to e.g. waiting in queue, lack of privacy, uncomfortable seating position, reduced upper limb strength and dexterity with seeing the touchscreen due to deformity of the cervical spine. The widespread use of smartphones makes it possible for patients to register PROMs via an application (app) on their own device.Objectives:The primary aim is to evaluate the agreement (i.e. similarity) between the two devices assessed by the Health Assessment Questionnaire Disability Index (HAQ-DI) status among patients with inflammatory arthritis.Methods:The study was a randomised, crossover, agreement trial (NCT03486613) conducted at Aalborg University Hospital, Denmark. Participants were recruited through an invitation on the touchscreen in the outpatient clinic. Patients with an established diagnosis (≥ 12 months) of rheumatoid arthritis (RA), psoriatic arthritis (PsA) or axial spondyloarthritis (axSpA) and experience with the PROM questionnaires (≥ 3 previous registrations) were enrolled and randomised in ratio 1:1 (stratified by diagnosis) to PROM registration through the DANBIO app and the touchscreen in random order. Figure 1A and 1B shows the two devices.The sample size calculation was based on a prespecified equivalence margin of ±0.11 HAQ-DI points (i.e. ≤ half of the minimal important difference of 0.22 points) yielding a power of 99.2% for 60 enrolled patients. There was a wash-out period of 1-2 days between the two device registrations to minimise the potential carryover effect.A paired t-test was used to calculate the mean HAQ-DI score for the two devices and the difference in HAQ-DI score with a 95% confidence interval (CI). A Bland-Altman plot was used to assess limits of agreement (LoA).Results:60 patients (20 with RA, 20 with PsA and 20 with axSpA) were randomised of whom 51.7% were male. Mean age was 53.7 years (range 22-77) and mean disease duration was 12.5 years (range 1.0-34.8).Mean HAQ-DI was 0.608 (95%CI 0.437;0.779) for the DANBIO app and 0.614 (95%CI 0.446;0.783) for the touchscreen (Table 1). Agreement between scores obtained with the two devices is illustrated with Bland-Altman plots in figure 2A and 2B. The paired mean difference of HAQ-DI between the two devices was -0.006 (95%CI -0.0424; 0.030); thus the 95% confidence interval for the mean difference was within the prespecified equivalence margin of ±0.11 HAQ-DI points.Table 1.HAQ-DI scores, difference and LoA for the two devices.App, mean (SD)Touchscreen, mean (SD)Difference, mean (95%CI)LoAMissing valuesHAQ-DI (0-3)0.608 (0.656)0.614 (0.646)-0.006 (-0.042;0.030)-0.277;0.2641Conclusion:The current study showed no statistical or clinically important difference in HAQ-DI measurement captured by a smartphone app or outpatient touchscreen. Therefore, we feel confident that the two devices perform similarly enough to be used interchangeably in patients with inflammatory arthritis.Disclosure of Interests:Line Uhrenholt Speakers bureau: Abbvie, Eli Lilly and Novartis (not related to the submitted work), Robin Christensen: None declared, Lene Dreyer: None declared, Annette Mortensen Speakers bureau: MSD and Eli Lilly (not related to the submitted work)., Ellen-Margrethe Hauge Speakers bureau: Fees for speaking/consulting: MSD, AbbVie, UCB and Sobi; research funding to Aarhus University Hospital: Roche and Novartis (not related to the submitted work)., Niels Steen Krogh: None declared, Mikkel Kramme Abildtoft: None declared, Peter C. Taylor Grant/research support from: Celgene, Eli Lilly and Company, Galapagos, and Gilead, Consultant of: AbbVie, Biogen, Eli Lilly and Company, Fresenius, Galapagos, Gilead, GlaxoSmithKline, Janssen, Nordic Pharma, Pfizer Roche, and UCB, Salome Kristensen: None declared

Patient-Reported Outcome Measures to Inform Care of People With Dementia—A Systematic Scoping Review

2020 ◽  
Author(s):  
Darshini R Ayton ◽  
Madeleine L Gardam ◽  
Elizabeth K Pritchard ◽  
Rasa Ruseckaite ◽  
Joanne Ryan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Outcome Measures ◽  
Scoping Review ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
System Level ◽  
Patient’S Perspective ◽  
Patient Reported ◽  
The Impact

Abstract Background and Objectives Patient-reported outcome measures (PROMs) captures the patient’s perspective regarding quality of life, daily functioning, symptom severity, and overall health, and how these may be impacted by health care or other interventions. PROMs are used in clinical quality registries (CQRs) for a number of diseases to assess the patient’s perspective of the impact of clinical care on quality-of-life. This scoping review aimed to identify dementia-specific PROMs, determine how the PROMs are being used, and whether they are used within dementia registries. Research Design and Methods Three electronic databases were searched using Medical Subject Heading terms for dementia, quality of life, and patient-reported outcomes. Data were extracted on the PROMs used and the methods and mode of administering the PROM. Results Seven dementia-specific PROMs were identified, however none were used in a dementia registry. All the PROMs were used at the patient level to identify patient needs and health service impacts. Three PROMs were also used at a system level to examine difference in care models. The majority of the PROMs were administered via a researcher or clinician and were predominantly completed by a proxy. Discussion and Implications PROMs provide an opportunity for a patient with dementia to share experiences and perspectives of care. A number of dementia-specific PROMs exist, yet none are used in dementia registries and the majority of studies utilize PROMs via a proxy. The use of PROM for patients with dementia, particularly in the context of dementia registries, requires further exploration and consideration.

scholarly journals Young people’s perspectives on patient-reported outcome measures in inflammatory arthritis: results of a multicentre European qualitative study from a EULAR task force

RMD Open ◽  
2021 ◽  
Vol 7 (1) ◽  
pp. e001517
Author(s):  
Erika Mosor ◽  
Paul Studenic ◽  
Alessia Alunno ◽  
Ivan Padjen ◽  
Wendy Olsder ◽  
...  
Keyword(s):  
Clinical Practice ◽  
Young People ◽  
Qualitative Study ◽  
Focus Groups ◽  
Outcome Measures ◽  
Inflammatory Arthritis ◽  
Positive Attitude ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported

IntroductionAlthough 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.

scholarly journals Patient-reported outcome measures for retinoblastoma: a scoping review

2020 ◽  
Vol 4 (1) ◽  
Author(s):  
Ana Janic ◽  
Sylvie Bowden ◽  
Sarah Levy ◽  
Jennifer Stinson ◽  
Helen Dimaras
Keyword(s):  
Outcome Measures ◽  
Scoping Review ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported
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