scholarly journals A Multicenter Nominal Group Study to Rank Outcomes Important to Patients, and Their Representation in Existing Composite Outcome Measures for Psoriatic Arthritis

2017 ◽  
Vol 44 (10) ◽  
pp. 1445-1452 ◽  
Author(s):  
William Tillett ◽  
Emma Dures ◽  
Sarah Hewlett ◽  
Philip S. Helliwell ◽  
Oliver FitzGerald ◽  
...  

Objective.To rank outcomes identified as important to patients with psoriatic arthritis (PsA) and examine their representation in existing composite measures.Methods.Seven nominal group technique (NGT) meetings took place at 4 hospital sites. Two sorting rounds were conducted to generate a shortlist of outcomes followed by a group discussion and final ranking. In the final ranking round, patients were given 15 points each and asked to rank their top 5 outcomes from the shortlist. The totals were summed across the 7 NGT groups and were presented as a percentage of the maximum possible priority score.Results.Thirty-one patients took part: 16 men and 15 women; the mean age was 54 years (range 24–77; SD 12.2), the mean disease duration was 10.3 years (range 1–40; SD 9.2), and mean Health Assessment Questionnaire was 1.15 (range 0–2.63; SD 0.7). The highest-ranked outcomes that patients wished to see from treatment were pain with 93 points (20.0%), fatigue 62 (13.3%), physical fitness 33 (7.1%), halting/slowing damage 32 (6.9%), and quality of life/well-being 29 (6.2%). Reviewing existing composite measures for PsA demonstrated that no single measure adequately identifies all these outcomes.Conclusion.Pain and fatigue were ranked as the outcomes most important to patients receiving treatment for PsA and are not well represented within existing composite measures. Future work will focus on validating composite measures modified to identify outcomes important to patients.

2017 ◽  
Vol 44 (10) ◽  
pp. 1522-1528 ◽  
Author(s):  
Ana-Maria Orbai ◽  
Maarten de Wit ◽  
Philip J. Mease ◽  
Kristina Callis Duffin ◽  
Musaab Elmamoun ◽  
...  

Objective.To include the patient perspective in accordance with the Outcome Measures in Rheumatology (OMERACT) Filter 2.0 in the updated Psoriatic Arthritis (PsA) Core Domain Set for randomized controlled trials (RCT) and longitudinal observational studies (LOS).Methods.At OMERACT 2016, research conducted to update the PsA Core Domain Set was presented and discussed in breakout groups. The updated PsA Core Domain Set was voted on and endorsed by OMERACT participants.Results.We conducted a systematic literature review of domains measured in PsA RCT and LOS, and identified 24 domains. We conducted 24 focus groups with 130 patients from 7 countries representing 5 continents to identify patient domains. We achieved consensus through 2 rounds of separate surveys with 50 patients and 75 physicians, and a nominal group technique meeting with 12 patients and 12 physicians. We conducted a workshop and breakout groups at OMERACT 2016 in which findings were presented and discussed. The updated PsA Core Domain Set endorsed with 90% agreement by OMERACT 2016 participants included musculoskeletal disease activity, skin disease activity, fatigue, pain, patient’s global assessment, physical function, health-related quality of life, and systemic inflammation, which were recommended for all RCT and LOS. These were important, but not required in all RCT and LOS: economic cost, emotional well-being, participation, and structural damage. Independence, sleep, stiffness, and treatment burden were on the research agenda.Conclusion.The updated PsA Core Domain Set was endorsed at OMERACT 2016. Next steps for the PsA working group include evaluation of PsA outcome measures and development of a PsA Core Outcome Measurement Set.


2019 ◽  
Vol 4 (3) ◽  
pp. 180-187 ◽  
Author(s):  
Gregory A. Aarons ◽  
Kendal Reeder ◽  
Christopher J. Miller ◽  
Nicole A. Stadnick

AbstractIntroduction:Scientific endeavors are increasingly carried out by teams of scientists. While there is growing literature on factors associated with effective science teams, little is known about processes that facilitate the success of dissemination and implementation (D&I) teams studying the uptake of healthcare innovations. This study aimed to identify strategies used by D&I scientists to promote team science.Methods:Using a nominal group technique, a sample of 27 D&I scholars responded to the question, “What strategies have you or others used to promote team science?” Participants were asked to individually respond and then discuss within a small group to determine the group’s top three strategies. Through a facilitated consensus discussion with the full sample, a rank-ordered list of three strategies was determined.Results:A total of 126 individual responses (M = 9; SD = 4.88) were submitted. Through small group discussion, six groups ranked their top three strategies to promote team science. The final ranked list of strategies determined by the full sample included: (1) developing and maintaining clear expectations, (2) promoting and modeling effective communication, and (3) establishing shared goals and a mission of the work to be accomplished.Conclusions:Because of its goal of translating knowledge to practice, D&I research necessitates the use of team science. The top strategies are in line with those found to be effective for teams in other fields and hold promise for improving D&I team cohesion and innovation, which may ultimately accelerate the translation of health innovations and the improvement of care quality and outcomes.


2007 ◽  
Vol 31 (3) ◽  
pp. 85-88 ◽  
Author(s):  
Kimberley Barlow ◽  
Stephen Miller ◽  
Kingsley Norton

Aims and MethodTo ascertain the views of people with personality disorder on their clinical interactions with professionals, to identify potential solutions to problematic interactions and to compile guidelines on how professionals could improve their interactions with these service users. Qualitative methodology was employed, comprising a modified nominal group technique with two iterative groups and ranking by importance the issues and themes raised.ResultsThere were 13 service users from three separate personality disorder services who actively participated in a group discussion and iterative process. Collectively they indicated considerable areas of deficiency in the quality of their interaction and communication with professionals. These deficits were defined clearly enough to allow the construction of guidelines aimed at preventing or remedying such deficiencies.ConclusionsThe contribution of those people with personality disorder who took part in this study was sufficiently thoughtful to allow the development of guidelines that might help staff improve their interactions with such service users. From these guidelines, further training tools are being developed, which will be evaluated in the future. However, because not all those approached chose to participate, the views expressed might not be representative of this group as a whole.


2015 ◽  
Vol 42 (6) ◽  
pp. 1041-1043 ◽  
Author(s):  
Philip J. Mease ◽  
Jane J. Park ◽  
Amit Garg ◽  
Dafna D. Gladman ◽  
Philip S. Helliwell

Rheumatologists are trained to determine the presence of musculoskeletal inflammation through history, physical examination, and if needed, laboratory tests and imaging. However, primary care clinicians, dermatologists, surgeons, and others who may initially see patients with musculoskeletal pain are not necessarily able to make the distinction between inflammatory (e.g., rheumatoid arthritis or psoriatic arthritis) and noninflammatory disease (osteoarthritis, traumatic or degenerative tendonitis, back pain, or fibromyalgia). If such clinicians could more readily suspect and identify possible inflammatory musculoskeletal disease, it would lead to more timely diagnosis and triage to rheumatologists for diagnosis and appropriate management. The Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) has been developing evidence-based, practical and reliable criteria that can be used by clinicians to identify inflammatory musculoskeletal disease. The research initiative involves a sequential process of expert clinician nominal group technique, patient focus groups, and Delphi exercises to identify core definitive features of inflammatory disease. The goal is to develop simple clinical criteria (history and physical examination elements) to identify inflammatory arthritis, enthesitis, dactylitis, and spondylitis and distinguish these from degenerative, mechanical, or other forms of these conditions, to achieve more timely and accurate diagnosis and referral of patients with inflammatory arthritis.


2019 ◽  
Vol 17 (1) ◽  
Author(s):  
Ivan Foeldvari ◽  
Jens Klotsche ◽  
Gabriele Simonini ◽  
Clive Edelsten ◽  
Sheila T. Angeles-Han ◽  
...  

Abstract Background JIA-associated uveitis (JIAU) is a serious, sight-threatening disease with significant long-term complications and risk of blindness, even with improved contemporary treatments. The MIWGUC was set up in order to propose specific JIAU activity and response items and to validate their applicability for clinical outcome studies. Methods The group consists of 8 paediatric rheumatologists and 7 ophthalmologists. A consensus meeting took place on November 2015 in Barcelona (Spain) with the objective of validating the previously proposed measures. The validation process was based on the results of a prospective open, international, multi-centre, cohort study designed to validate the outcome measures proposed by the initial MIWGUC group meeting in 2012. The meeting used the same Delphi and nominal group technique as previously described in the first paper from the MIWGUC group (Arthritis Care Res 64:1365–72, 2012). Patients were included with a diagnosis of JIA, aged less than 18 years, and with active uveitis or an uveitis flare which required treatment with a disease-modifying anti-rheumatic drug. The proposed outcome measures for uveitis were collected by an ophthalmologist and for arthritis by a paediatric rheumatologist. Patient reported outcome measures were also measured. Results A total of 82 patients were enrolled into the validation cohort. Fifty four percent (n = 44) had persistent oligoarthritis followed by rheumatoid factor negative polyarthritis (n = 15, 18%). The mean uveitis disease duration was 3.3 years (SD 3.0). Bilateral eye involvement was reported in 65 (79.3%) patients. The main findings are that the most significant changes, from baseline to 6 months, are found in the AC activity measures of cells and flare. These measures correlate with the presence of pre-existing structural complications and this has implications for the reporting of trials using a single measure as a primary outcome. We also found that visual analogue scales of disease activity showed significant change when reported by the ophthalmologist, rheumatologist and families. The measures formed three relatively distinct groups. The first group of measures comprised uveitis activity, ocular damage and the ophthalmologists’ VAS. The second comprised patient reported outcomes including disruption to school attendance. The third group consisted of the rheumatologists’ VAS and the joint score. Conclusions We propose distinctive and clinically significant measures of disease activity, severity and damage for JIAU. This effort is the initial step for developing a comprehensive outcome measures for JIAU, which incorporates the perspectives of rheumatologists, ophthalmologists, patients and families.


2013 ◽  
Vol 40 (8) ◽  
pp. 1442-1445 ◽  
Author(s):  
Philip J. Mease ◽  
Amit Garg ◽  
Dafna D. Gladman ◽  
Philip S. Helliwell

Dermatologist and primary care clinicians are in an ideal position to identify the emergence of psoriatic arthritis (PsA) in patients with psoriasis. Yet these clinicians are not well trained to distinguish inflammatory musculoskeletal disease from other more common problems such as osteoarthritis, traumatic or degenerative tendonitis and back pain, or fibromyalgia. A simple set of clinical criteria to identify inflammatory disease would aid recognition of PsA. At its 2012 annual meeting, the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) discussed development of evidence-based, practical, and reliable definitions of inflammatory arthritis, enthesitis, dactylitis, and spondylitis. This project will be a sequential process of expert clinician nominal-group technique, patient surveys and focus groups, and Delphi exercises to identify core features of inflammatory disease, testing these in a small group of patients with and without inflammatory disease, and finally validating these criteria in larger groups of patients.


2011 ◽  
Vol 38 (3) ◽  
pp. 540-545 ◽  
Author(s):  
PHILIP S. HELLIWELL ◽  
OLIVER FITZGERALD ◽  
C. VIBEKE STRAND ◽  
PHILIP J. MEASE

A composite measure is one way of incorporating an assessment of all relevant clinical outcomes into one single measure. By definition it incorporates several dimensions of disease status often by combining these different domains into a single score. Such instruments are well established in rheumatoid arthritis (RA), and these RA-specific measures have successfully been adopted for use in clinical trials involving patients with psoriatic arthritis (PsA). However, the need for a more PsA-specific composite measure has led to a number of proposals, which, for the large part, incorporate only peripheral articular disease activity. New indices that combine the diverse clinical manifestations of PsA are now under development. These issues were discussed at the 2009 annual meeting of GRAPPA (Group for Research and Assessment of Psoriasis and Psoriatic Arthritis) in Stockholm, Sweden, and are summarized here.


2021 ◽  
Author(s):  
Eileen Brobbin ◽  
Jacklyn Dunne ◽  
Laura Hermann ◽  
Andreas Kimergård ◽  
Kim Donoghue

Abstract Background: Randomised controlled trials (RCTs) are considered the gold standard research design for assessing the efficacy of health care treatments and are essential for improving knowledge and outcomes. However, the challenges of running RCTs in the alcohol addiction field are rarely discussed. The Nominal Group Technique (NGT) is a method designed to encourage contributions and elicit agreement on what to prioritise. This paper aims to identify challenges of alcohol addiction RCTs and solutions to these challenges using the NGT.Method: Six researchers from the Addictions Department, King’s College London, experienced in running alcohol addiction trials as trial managers, principal investigators and chief investigators, took part in a two-round decision conference, which involved impartial facilitation, on-the-spot modelling and interactive group discussion according to the NGT. The data generated from the first session was viewed and refined in the second session to create a priority list of challenges and solutions for future alcohol addiction RCTs.Results: The model produced a range of challenges when conducting alcohol addiction RCTs and solutions, which were rated according to priority by experts. After refinement of the model, these were categorised into five themes including: Staff, Recruitment, Follow ups, Governance and Funding. Each of these contained challenges and solutions when conducting alcohol addiction RCTs.Conclusion: The challenges to running alcohol addiction RCTs were discussed by a group experienced in this area in order to promote discussion and solutions. The process of sharing experiences and ideas allows for furthering knowledge to improve the running of alcohol addiction RCTs. There were some challenges that were discussed where no solutions were known or thought of. Current research activity should be more open to discussing and sharing challenges and possible solutions to improve research outcomes.


2012 ◽  
Vol 39 (2) ◽  
pp. 398-403 ◽  
Author(s):  
PHILIP S. HELLIWELL ◽  
OLIVER FITZGERALD ◽  
PHILIP J. MEASE

Composite disease outcome measures have been used in rheumatology for some time, but a disease-specific composite measure for psoriatic arthritis (PsA) has not yet been validated. Currently, instruments developed for use in rheumatoid arthritis are employed in PsA and include the American College of Rheumatology response criteria (ACR20, 50, and 70) and the Disease Activity Score for 28 and 44 joints (DAS28 and DAS44); however, these instruments do not cover the full spectrum of psoriatic disease. A composite measure is one way of incorporating an assessment of all relevant clinical outcomes into one single measure. By definition, it incorporates several dimensions of disease status, often by combining these different domains into a single score, which in the case of PsA includes joints, skin, entheses, dactylitis, and axial disease. New indices that combine these diverse clinical manifestations of PsA are under development and, in some cases, in the validation phase. The Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) established the GRAPPA Composite Exercise (GRACE) project to compare existing and emerging composite measures and to develop a new index. At the GRAPPA 2010 meeting, initial results from this project were presented, and existing and new candidate measures were compared.


2018 ◽  
Vol 52 (2) ◽  
Author(s):  
Hilton Y. Lam ◽  
Carlos Primero D. Gundran ◽  
Jaifred Christian F. Lopez ◽  
Emelia B. Santamaria ◽  
Anna Cristina A. Tuazon ◽  
...  

Background. Despite the implementation of policies related to disaster risk reduction and management in the Philippines, the response after Typhoon Haiyan in November 2013 was hampered by operational challenges. Objective. The purpose of this study was to document disaster response experiences of Typhoon Haiyan from field level emergency medical service (EMS) responders, a key component of the disaster response, specifically the enabling factors and hindrances to disaster medical response activities, including their self-perceived level of preparedness in these activities. Methods. In this mixed-methods study, 52 respondents identified enabling factors and hindrances to their disaster response and their corresponding self-perceived level of preparedness. In a subsequent focus group discussion, the researchers used the nominal group technique to process the respondents’ experiences. Results. The respondents identified factors that enabled or hindered their response activities such as coordination, stress debriefing, infrastructure, and preparedness. Furthermore, an average of 33% of the respondents said they were adequately prepared to deliver the necessary medical services during the disaster response, thus validating previous studies on preparedness and disaster response operations. Conclusion. The government should critically examine its cluster approach to disaster response and consider an integrated, inclusive, and proactive approach in disaster planning.


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