scholarly journals International Dermatology Outcome Measures (IDEOM): Report from the 2020 Annual Meeting

Dermatology ◽  
2021 ◽  
pp. 1-8
Author(s):  
Alison H. Kohn ◽  
Afsaneh Alavi ◽  
April W. Armstrong ◽  
Folawiyo Babalola ◽  
Amit Garg ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Annual Meeting ◽  
Outcome Measures ◽  
Pyoderma Gangrenosum ◽  
Actinic Keratosis ◽  
Hidradenitis Suppurativa ◽  
Outcome Measurements ◽  
Dermatological Disease ◽  
Patient Reported ◽  
The Impact

<b><i>Background:</i></b> The International Dermatology Outcome Measures (IDEOM) initiative is a non-profit organization that aims to develop evidence-based outcome measurements to evaluate the impact of treatments for patients with dermatological disease. IDEOM includes all key stakeholders in dermatology (patient, physician, industry, insurer, and government) during the process of developing such outcome measurements. <b><i>Summary:</i></b> Here, we provide an update of IDEOM activities that were presented at the 2020 IDEOM Virtual Annual Meeting (October 23–24, 2020). During the meeting, multiple IDEOM workgroups (psoriasis, psoriatic arthritis, hidradenitis suppurativa, acne, pyoderma gangrenosum, and actinic keratosis) shared their progress to date, as well as future directions in developing and validating Patient-Reported Outcome Measures. Updates on demonstrating efficacy in clinicals trials by the US Food and Drug Administration are also summarized. <b><i>Key Messages:</i></b> In this report, we summarize the work presented by each IDEOM workgroup (psoriasis, psoriatic arthritis, hidradenitis suppurativa, acne, pyoderma gangrenosum, and actinic keratosis) at the 2020 IDEOM Virtual Annual Meeting.

Prologue: 2015 Annual Meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA)

2016 ◽  
Vol 43 (5) ◽  
pp. 949-951 ◽  
Author(s):  
Wolf-Henning Boehncke ◽  
Dafna D. Gladman ◽  
Philip S. Helliwell
Keyword(s):  
Psoriatic Arthritis ◽  
Annual Meeting ◽  
Outcome Measures ◽  
Psoriasis Patient ◽  
Round Table ◽  
Psoriatic Disease ◽  
The Past ◽  
Patient Reported ◽  
The Status ◽  
Patient Groups

The 2015 Annual Meeting of the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) was held in Stockholm, Sweden, and attended by rheumatologists, dermatologists, and representatives of biopharmaceutical companies and patient groups. In this prologue, we introduce the articles that summarize that meeting. As in previous years, GRAPPA members held a Trainees Symposium, providing an opportunity for trainees to discuss their research in psoriatic disease with experts in the field. Two dermatology sessions were held: an update on the International Dermatology Outcome Measures group; and a description of a new tool, the Comprehensive Assessment of the Psoriasis Patient, to more accurately assess the full burden of plaque psoriasis and its subtypes. Four distinct plenary sessions were held to update members on the status of the Outcome Measures in Rheumatology (OMERACT) initiative. GRAPPA’s patient research partners discussed their 2 years of involvement in GRAPPA activities and were active in several sessions before and during the 2015 annual meeting. New work was presented toward developing a patient-reported instrument to measure flare in psoriatic disease, and the status of GRAPPA’s multiple research and continuing education programs in psoriasis and PsA was summarized. Finally, a Presidential Round Table was held in which the past, current, and incoming presidents reflected on GRAPPA’s history and provided insights about its future.

Trends in Hidradenitis Suppurativa Disease Severity and Quality of Life Outcome Measures: A Systematic Review (Preprint)

2021 ◽  
Author(s):  
Jalal Maghfour ◽  
Torunn Elise Sivesind ◽  
Cory A. Dunnick ◽  
Robert Paul Dellavalle
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Disease Severity ◽  
Outcome Measures ◽  
Hidradenitis Suppurativa ◽  
Life Quality ◽  
Clinical Score ◽  
Validity And Reliability ◽  
Patient Reported

BACKGROUND While there has been an increase in the number of randomized, controlled trials (RCTs) evaluating treatment efficacy for HS, instrument measurements of disease severity and quality of life (QoL) are varied, making compilation of data and comparison between studies a challenge for clinicians. OBJECTIVE The aim of this review is to evaluate trends in disease severity scales and patient reported outcome measures used in RCTs assessing treatment interventions among HS patients. METHODS A primary systematic literature review was conducted in August 2020. PubMed/MEDLINE, Embase, Web of Science, and Cochrane databases were used to identify all articles published from January 1964 to July 2020. The study was prospectively registered with PROSPERO (ID: 209582). Twenty-five articles were included in the systematic review. RESULTS Sartorius and modified Sartorius scores (n=8), and Hidradenitis Suppurativa Clinical score (HiSCs) (n=8) were the most commonly used instruments for disease severity. Participants’ pain, followed by Dermatology Life Quality Index (DLQI), were the most common QoL measures used in the reviewed studies. CONCLUSIONS Heterogeneity of data characterizing both the validity and reliability of existing outcome measures hinders interpretation and translation of the results from RCTs into clinical practice. Many of the QoL measures identified were not specific to HS and may not be representative of all factors impacting patients.

Psoriatic arthritis

2013 ◽  
pp. 890-900
Author(s):  
Laura C. Coates ◽  
Philip S. Helliwell
Keyword(s):  
Psoriatic Arthritis ◽  
Skin Condition ◽  
Patient Reported Outcome ◽  
New Drugs ◽  
Screening Tools ◽  
North Americans ◽  
The Metabolic Syndrome ◽  
Patient Reported ◽  
Chronic Skin ◽  
The Impact

Psoriasis is a chronic skin condition affecting about 3% of Europeans and North Americans. About 15% of people afflicted with psoriasis will develop psoriatic arthritis—cutaneous risk factors for this are psoriasis of the nails, scalp, and flexures. Since most cases of arthritis develop in people with psoriasis, new screening tools, both clinical and imaging, are available. Some genetic factors may also explain susceptibility and severity. Historically, five clinical subgroups have been described but these may be simplified to axial and peripheral involvement, the latter dividing into oligo- and polyarticular patterns. The importance of these clinical subdivisions is still under debate and research but it is clear that there is marked heterogeneity in all manifestations of this disease. In recent times the importance of extra-articular features has gained prominence such that the metabolic syndrome and cardiovascular morbidity are now seen as important features of ’psoriatic disease’. The diverse changes seen in bone on imaging reflect both the underlying pathogenic mechanisms and the ways in which the disease progresses. Recent work with animal models and immunohistochemistry has further advanced our understanding of these features. In the biologic era renewed interest in psoriatic arthritis has stimulated research into outcome assessment and permitted clearer understanding of how these new drugs work on the different aspects of the disease. In addition, improved recognition of the impact of the disease on the person has stimulated the development of new patient-reported outcome tools.

scholarly journals The Impact of Patient Interactive Systems on the Management of Pain in an Inpatient Hospital Setting: A Systematic Review

2019 ◽  
Vol 10 (04) ◽  
pp. 580-596 ◽  
Author(s):  
Raniah N. Aldekhyyel ◽  
Caitlin J. Bakker ◽  
Michael B. Pitt ◽  
Genevieve B. Melton
Keyword(s):  
Pain Management ◽  
Outcome Measures ◽  
User Satisfaction ◽  
Hospital Setting ◽  
Interactive Systems ◽  
Management Systems ◽  
Interactive System ◽  
Inpatient Setting ◽  
Patient Reported ◽  
The Impact

Background While some published literature exists on the use of interactive patient care systems, the effectiveness of these systems on the management of pain is unclear. To fill this gap in knowledge, we aimed to understand the impact and outcomes of pain management patient interactive systems in an inpatient setting. Methods A systematic literature review was conducted across seven databases, and results were independently screened by two researchers. To extract relevant data, critical appraisal forms were developed and each paper was examined by two experts. Information included patient interactive system category, patient population and number of participants/samples, experiment type, and specific outcome measures. Results Out of 58 full-text articles assessed for eligibility, 18 were eligible and included in the final qualitative synthesis. Overall, there were two main types of pain management interactive systems within the inpatient setting (standalone systems and integrated platform systems). While systems were diverse especially for integrated platforms, most reported systems were entertainment distraction systems. Reports examined a variety of outcome measures, including changes in patient-reported pain levels, patient engagement, user satisfaction, changes in clinical workflow, and changes in documentation. In the 13 systems measuring pain scores, 12 demonstrated a positive impact on pain level scores. Conclusion Pain management systems appear to be effective in lowering patient level scores, but research comparing the effectiveness and efficacy of one type of interactive system versus another in the management of pain is needed. While not conclusive, pain management systems integrated with other technology platforms show potentially promising effects with improving patient communication, education, and self-reporting.

Psoriatic arthritis

2013 ◽  
Author(s):  
Laura C. Coates ◽  
Philip S. Helliwell
Keyword(s):  
Psoriatic Arthritis ◽  
Skin Condition ◽  
Patient Reported Outcome ◽  
New Drugs ◽  
Screening Tools ◽  
North Americans ◽  
The Metabolic Syndrome ◽  
Patient Reported ◽  
Chronic Skin ◽  
The Impact

Psoriasis is a chronic skin condition affecting about 3% of Europeans and North Americans. About 15% of people afflicted with psoriasis will develop psoriatic arthritis—cutaneous risk factors for this are psoriasis of the nails, scalp, and flexures. Since most cases of arthritis develop in people with psoriasis, new screening tools, both clinical and imaging, are available. Some genetic factors may also explain susceptibility and severity. Historically, five clinical subgroups have been described but these may be simplified to axial and peripheral involvement, the latter dividing into oligo- and polyarticular patterns. The importance of these clinical subdivisions is still under debate and research but it is clear that there is marked heterogeneity in all manifestations of this disease. In recent times the importance of extra-articular features has gained prominence such that the metabolic syndrome and cardiovascular morbidity are now seen as important features of 'psoriatic disease'. The diverse changes seen in bone on imaging reflect both the underlying pathogenic mechanisms and the ways in which the disease progresses. Recent work with animal models and immunohistochemistry has further advanced our understanding of these features. In the biologic era renewed interest in psoriatic arthritis has stimulated research into outcome assessment and permitted clearer understanding of how these new drugs work on the different aspects of the disease. In addition, improved recognition of the impact of the disease on the person has stimulated the development of new patient-reported outcome tools.

Appraisal of Candidate Instruments for Assessment of the Physical Function Domain in Patients with Psoriatic Arthritis

2020 ◽  
Vol 48 (1) ◽  
pp. 58-66 ◽  
Author(s):  
Ying Ying Leung ◽  
Ana-Maria Orbai ◽  
Alexis Ogdie ◽  
Pil Hojgaard ◽  
Richard Holland ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Physical Function ◽  
Outcome Measures ◽  
Physical Functioning ◽  
Working Group ◽  
Short Form ◽  
Outcome Measurement ◽  
Patient Reported Outcome Measures ◽  
Measurement Information ◽  
Patient Reported

Objective.Numerous patient-reported outcome measures (PROM) exist for the measurement of physical function for psoriatic arthritis (PsA), but only a few are validated comprehensively. The objective of this project was to prioritize PROM for measuring physical function for potential incorporation into a standardized outcome measurement set for PsA.Methods.A working group of 13 members including 2 patient research partners was formed. PROM measuring physical function in PsA were identified through a systematic literature review and recommendations by the working group. The rationale for inclusion and exclusion from the original list of existing PROM was thoroughly discussed and 2 rounds of Delphi exercises were conducted to achieve consensus.Results.Twelve PROM were reviewed and discussed. Six PROM were prioritized: Health Assessment Questionnaire (HAQ) and 4 modifications (HAQ-Disability Index, HAQ-Spondyloarthritis, modified HAQ, multidimensional HAQ), Medical Outcomes Study 36-item Short Form survey physical functioning domain, and the Patient-Reported Outcomes Measurement Information System (PROMIS) physical functioning module.Conclusion.Through discussion and Delphi exercises, we achieved consensus to prioritize 6 physical function PROM for PsA. These 6 PROM will undergo further appraisal using the Outcome Measures in Rheumatology (OMERACT) Filter 2.1.

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