The use of qualitative methods to inform Delphi surveys in core outcome set development

Keeley, Thomas; Williamson, Paula; Callery, Peter; Jones, Laura; Mathers, Jonathan; Jones, Janet; Young, Bridget; Calvert, Melanie

doi:10.1186/s13063-016-1356-7

Cited by 129 publications

(150 citation statements)

References 29 publications

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“…Qualitative research was conducted to identify domains directly from patients to include their perspective at the inception of the process (16). Two focus group studies were conducted: one international (16 focus groups with 89 patients in total in Australia, Brazil, France, Netherlands, Singapore and US) and one multicenter study in the UK (8 focus groups with 41 patients).…”

Section: Summary Of Research Conducted In Preparation For Omeract 2016mentioning

confidence: 99%

Updating the Psoriatic Arthritis (PsA) Core Domain Set: A Report from the PsA Workshop at OMERACT 2016

Orbai

Wit²,

Mease³

et al. 2017

J Rheumatol

112

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Objectives The current psoriatic arthritis (PsA) Core Domain Set defines core domains to be measured in randomized controlled trials (RCTs) and longitudinal observational studies (LOS) and was published in 2006. At the Outcome Measures in Rheumatology (OMERACT) meeting in 2014, researchers, clinicians and patients unanimously voted for updating the PsA Core Domain Set to include the patient perspective in accordance with OMERACT Filter 2.0. Herein we report the proceedings of the PsA Workshop at the OMERACT meeting in 2016 including studies presented in the plenary, results of breakout group discussions, and final voting and endorsement of the 2016 updated PsA Core Domain Set. Methods We conducted research to develop the updated PsA Core Domain Set. At OMERACT 2016 this work was presented, discussed in breakout groups and the updated PsA core domain set was voted on and endorsed by OMERACT participants. Results The updated PsA Core Domain Set includes: musculoskeletal disease activity, skin disease activity, fatigue, pain, patient global, physical function, health related quality of life and systemic inflammation which are recommended for all RCTs and LOS). Economic cost, emotional well-being, participation and structural damage are important but not required in all RCTs and LOS. Independence, sleep, stiffness and treatment burden 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 available outcome measures for each of the core domains and development of a PsA core outcome measurement set.

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Section: Summary Of Research Conducted In Preparation For Omeract 2016mentioning

confidence: 99%

Updating the Psoriatic Arthritis (PsA) Core Domain Set: A Report from the PsA Workshop at OMERACT 2016

Orbai

Wit²,

Mease³

et al. 2017

J Rheumatol

112

View full text Add to dashboard Cite

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“…Further, we did not pilot the survey with patients beforehand. Given that the concept of ‘outcomes/endpoints’ can be obscure,15 some patients may have misunderstood the purpose of the Delphi survey, or the wording of certain domains and definitions, which could have resulted in unreliable ratings from them. Another limitation is that the sample size for some of the stakeholder groups was small (eg, in round one, only 13 participants worked as a researcher only, and in round two, only 12 participants worked as a clinician only).…”

Section: Discussionmentioning

confidence: 99%

Identifying a core set of outcome domains to measure in clinical trials for shoulder disorders: a modified Delphi study

et al. 2016

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ObjectiveTo achieve consensus on the most important outcome domains to measure across all clinical trials for shoulder disorders.MethodsWe performed an online modified Delphi study with an international, multidisciplinary and multistakeholder panel. A literature review and the OMERACT Filter 2.0 framework was used to generate a list of potential core domains, which were presented to patients, clinicians and researchers in two Delphi rounds. Participants were asked to judge the importance of each potential core domain and provide a rationale for their response. A core domain was defined a priori as a domain that at least 67% of participants considered core.ResultsIn both rounds, 335 individuals were invited to participate (268 clinicians/researchers and 67 patients); response rates were 27% (n=91) and 29% (n=96), respectively. From a list of 41 potential core domains, four domains met our criteria for inclusion: ‘pain’, ‘physical functioning’, ‘global assessment of treatment success’ and ‘health-related quality of life’. Two additional domains, ‘sleep functioning’ and ‘psychological functioning’, met the criteria for inclusion by some, but not all stakeholder groups. There was consensus that ‘number of deaths’ was not a core domain, but insufficient agreement on whether or not several other domains, including ‘range of motion’ and ‘muscle strength’, were core domains.ConclusionsBased on international consensus from patients, clinicians and researchers, ‘pain’, ‘physical functioning’, ‘global assessment of treatment success’ and ‘health-related quality of life’ were considered core outcome domains for shoulder disorder trials. The value of several other domains needs further consideration.

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“…The patients’ perspective is essential in gaining this understanding. Qualitative research is a well-known methodology to collect and analyze in-depth information from patients, particularly on their health status that may help inform development of core outcome sets [15]. Recently, there has been an increase in qualitative research published on the patient perspective following critical illness [16–20].…”

Section: Introductionmentioning

confidence: 99%

Patient outcomes after critical illness: a systematic review of qualitative studies following hospital discharge

et al. 2016

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BackgroundThere is growing interest in patient outcomes following critical illness, with an increasing number and different types of studies conducted, and a need for synthesis of existing findings to help inform the field. For this purpose we conducted a systematic review of qualitative studies evaluating patient outcomes after hospital discharge for survivors of critical illness.MethodsWe searched the PubMed, EMBASE, CINAHL, PsycINFO, and CENTRAL databases from inception to June 2015. Studies were eligible for inclusion if the study population was >50 % adults discharged from the ICU, with qualitative evaluation of patient outcomes. Studies were excluded if they focused on specific ICU patient populations or specialty ICUs. Citations were screened in duplicate, and two reviewers extracted data sequentially for each eligible article. Themes related to patient outcome domains were coded and categorized based on the main domains of the Patient Reported Outcomes Measurement Information System (PROMIS) framework.ResultsA total of 2735 citations were screened, and 22 full-text articles were eligible, with year of publication ranging from 1995 to 2015. All of the qualitative themes were extracted from eligible studies and then categorized using PROMIS descriptors: satisfaction with life (16 studies), including positive outlook, acceptance, gratitude, independence, boredom, loneliness, and wishing they had not lived; mental health (15 articles), including symptoms of post-traumatic stress disorder, anxiety, depression, and irritability/anger; physical health (14 articles), including mobility, activities of daily living, fatigue, appetite, sensory changes, muscle weakness, and sleep disturbances; social health (seven articles), including changes in friends/family relationships; and ability to participate in social roles and activities (six articles), including hobbies and disability.ConclusionICU survivors may experience positive emotions and life satisfaction; however, a wide range of mental, physical, social, and functional sequelae occur after hospital discharge. These findings are important for understanding patient-centered outcomes in critical care and providing focus for future interventional studies aimed at improving outcomes of importance to ICU survivors.Electronic supplementary materialThe online version of this article (doi:10.1186/s13054-016-1516-x) contains supplementary material, which is available to authorized users.

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The use of qualitative methods to inform Delphi surveys in core outcome set development

Cited by 129 publications

References 29 publications

Updating the Psoriatic Arthritis (PsA) Core Domain Set: A Report from the PsA Workshop at OMERACT 2016

Updating the Psoriatic Arthritis (PsA) Core Domain Set: A Report from the PsA Workshop at OMERACT 2016

Identifying a core set of outcome domains to measure in clinical trials for shoulder disorders: a modified Delphi study

Patient outcomes after critical illness: a systematic review of qualitative studies following hospital discharge

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