scholarly journals A Patient-reported Outcome Measure for Effect of Glucocorticoid Therapy in Adults with Inflammatory Diseases Is Needed: Report from the OMERACT 2016 Special Interest Group

2017 ◽  
Vol 44 (11) ◽  
pp. 1754-1758 ◽  
Author(s):  
Rachel J. Black ◽  
Joanna C. Robson ◽  
Susan M. Goodman ◽  
Elizabeth Hoon ◽  
Lana Y.H. Lai ◽  
...  
Keyword(s):  
Interest Group ◽  
Special Interest ◽  
Research Agenda ◽  
Outcome Measure ◽  
Age Groups ◽  
Patient Reported Outcome ◽  
Special Interest Group ◽  
Duration Of Treatment ◽  
Patient Reported Outcome Measure ◽  
Patient Reported

Objective.The need for a standardized instrument to measure the effect of glucocorticoid (GC) therapy has been well documented in the literature. The aim of the first GC Special Interest Group was to define a research agenda around the development of a patient-reported outcome measure (PROM) in this area.Methods.The results of a background literature search and the preliminary results of a pilot survey and 2 qualitative studies were presented to facilitate the development of a research agenda.Results.It was agreed that there was a need for a data-driven PROM that identified both positive and negative effects of GC therapy to be used across all inflammatory indications for systemic GC use in adults. A research agenda was developed, consisting of further qualitative work to assess the effect of GC across different groups including various indications for GC use, different age groups, different dosages, and duration of treatment.Conclusion.There was agreement on the need for a PROM in this area and a research agenda was set.

scholarly journals Patient-reported Outcomes and Adult Patients’ Disease Experience in the Idiopathic Inflammatory Myopathies. Report from the OMERACT 11 Myositis Special Interest Group

2014 ◽  
Vol 41 (3) ◽  
pp. 581-592 ◽  
Author(s):  
Helene Alexanderson ◽  
Maria Del Grande ◽  
Clifton O. Bingham ◽  
Ana-Maria Orbai ◽  
Catherine Sarver ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Interest Group ◽  
Special Interest ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Special Interest Group ◽  
Idiopathic Inflammatory Myopathies ◽  
Inflammatory Myopathies ◽  
Emotional Life ◽  
Patient Reported

The newly formed Outcome Measures in Rheumatology (OMERACT) Myositis Special Interest Group (SIG) was established to examine patient-reported outcome measures (PROM) in myositis. At OMERACT 11, a literature review of PROM used in the idiopathic inflammatory myopathies (IIM) and other neuromuscular conditions was presented. The group examined in more detail 2 PROM more extensively evaluated in patients with IIM, the Myositis Activities Profile, and the McMaster-Toronto Arthritis Patient Preference Disability Questionnaire, through the OMERACT filter of truth, discrimination, and feasibility. Preliminary results from a qualitative study of patients with myositis regarding their symptoms were discussed that emphasized the range of symptoms experienced: pain, physical tightness/stiffness, fatigue, disease effect on emotional life and relationships, and treatment-related side effects. Following discussion of these results and following additional discussions since OMERACT 11, a research agenda was developed. The next step in evaluating PROM in IIM will require additional focus groups with a spectrum of patients with different myositis disease phenotypes and manifestations across a range of disease activity, and from multiple international settings. The group will initially focus on dermatomyositis and polymyositis in adults. Qualitative analysis will facilitate the identification of commonalities and divergent patient-relevant aspects of disease, insights that are critical given the heterogeneous manifestations of these diseases. Based on these qualitative studies, existing myositis PROM can be examined to more thoroughly assess content validity, and will be important to identify gaps in domain measurement that will be required to develop a preliminary core set of patient-relevant domains for IIM.

Confirmatory Psychometric Evaluation of the Axillary Sweating Daily Diary: A Vaildated Patient-Reported Outcome Measure to Assess Axillary Hyperhidrosis Sweating Severity

2017 ◽  
Vol 1 ◽  
pp. s94 ◽  
Author(s):  
Dee Anna Glaser ◽  
Adelaide A Hebert ◽  
Sheri Fehnel ◽  
Dana DiBenedetti ◽  
Lauren Nelson ◽  
...  
Keyword(s):  
Outcome Measure ◽  
Daily Diary ◽  
Psychometric Evaluation ◽  
Patient Reported Outcome ◽  
Axillary Hyperhidrosis ◽  
Patient Reported Outcome Measure ◽  
Patient Reported

Abstract Not AvailableDisclosure: Study supported by Dermira.

scholarly journals Buccal mucosal graft urethroplasty for radiation-induced urethral strictures: an evaluation using the extended Urethral Stricture Surgery Patient-Reported Outcome Measure (USS PROM)

2020 ◽  
Vol 38 (11) ◽  
pp. 2863-2872 ◽  
Author(s):  
Malte W. Vetterlein ◽  
◽  
Luis A. Kluth ◽  
Valentin Zumstein ◽  
Christian P. Meyer ◽  
...  
Keyword(s):  
Radiation Therapy ◽  
Urethral Stricture ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Patient Reported Outcome Measure ◽  
Urethral Strictures ◽  
Buccal Mucosal Graft ◽  
Surgery Patient ◽  
Patient Reported ◽  
Radiation Induced

Abstract Objectives To evaluate objective treatment success and subjective patient-reported outcomes in patients with radiation-induced urethral strictures undergoing single-stage urethroplasty. Patients and methods Monocentric study of patients who underwent single-stage ventral onlay buccal mucosal graft urethroplasty for a radiation-induced stricture between January 2009 and December 2016. Patients were characterized by descriptive analyses. Kaplan–Meier estimates were employed to plot recurrence-free survival. Recurrence was defined as any subsequent urethral instrumentation (dilation, urethrotomy, urethroplasty). Patient-reported functional outcomes were evaluated using the validated German extension of the Urethral Stricture Surgery Patient-Reported Outcome Measure (USS PROM). Results Overall, 47 patients were available for final analyses. Median age was 70 (IQR 65–74). Except for two, all patients had undergone pelvic radiation therapy for prostate cancer. Predominant modality was external beam radiation therapy in 70% of patients. Stricture recurrence rate was 33% at a median follow-up of 44 months (IQR 28–68). In 37 patients with available USS PROM data, mean six-item LUTS score was 7.2 (SD 4.3). Mean ICIQ sum score was 9.8 (SD 5.4). Overall, 53% of patients reported daily leaking and of all, 26% patients underwent subsequent artificial urinary sphincter implantation. Mean IIEF-EF score was 4.4 (SD 7.1), indicating severe erectile dysfunction. In 38 patients with data regarding the generic health status and treatment satisfaction, mean EQ-5D index score and EQ VAS score was 0.91 (SD 0.15) and 65 (SD 21), respectively. Overall, 71% of patients were satisfied with the outcome. Conclusion The success rate and functional outcome after BMGU for radiation-induced strictures were reasonable. However, compared to existing long-term data on non-irradiated patients, the outcome is impaired and patients should be counseled accordingly.

scholarly journals Post-stroke fatigue: an exploratory study with patients and health professionals to develop a patient-reported outcome measure

2021 ◽  
Vol 5 (1) ◽  
Author(s):  
Ingrid Johansen Skogestad ◽  
Marit Kirkevold ◽  
Petra Larsson ◽  
Christine Råheim Borge ◽  
Bent Indredavik ◽  
...  
Keyword(s):  
Future Development ◽  
Health Professionals ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Stroke Survivors ◽  
Structured Interviews ◽  
Post Stroke ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
Initial Hospital

Abstract Background Post-stroke fatigue (PSF) is commonly reported and described as disabling by patients recovering from stroke. However, a major challenge is how to accurately diagnose and assess PSF. Therefore, the aim of this study was to explore PSF as it is experienced by stroke survivors and described by health professionals to guide future development of a PSF-specific PROM. Methods Individual semi-structured interviews were conducted with stroke survivors experiencing PSF (n = 9) and three focus groups were conducted with health professionals (n = 16). Data were analyzed through inductive content analysis. Results The analysis revealed four themes illustrating the experience and descriptions of PSF: 1) PSF characteristics, 2) interfering and aggravating factors, 3) management, and 4) PSF awareness, which refers to stroke survivors first becoming aware of PSF after their initial hospital admission. Conclusion This study highlights the complexity and multidimensionality of PSF. The results from this study will guide future development of a PSF-PROM and support its content validity.

scholarly journals Development of a patient-reported outcome measure for neck pain in military aircrew: qualitative interviews to inform design and content

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e039488
Author(s):  
Anna Dowling ◽  
Ellen Slungaard ◽  
Nicola R Heneghan
Keyword(s):  
Neck Pain ◽  
Outcome Measure ◽  
Physical Symptoms ◽  
Patient Reported Outcome ◽  
Direct Access ◽  
Specific Patient ◽  
Concept Elicitation ◽  
Patient Reported Outcome Measure ◽  
Patient Reported ◽  
The Impact

IntroductionThe prevalence of flight-related neck pain is 70% in UK fast jet pilots; much higher than the general population. The Aircrew Conditioning Programme and direct access physiotherapy exist to minimise the impact on military capability, but a population specific patient-reported outcome measure (PROM) is required to investigate the effectiveness of these. We aimed to explore the experiences of flight-related neck pain to inform the content validity and development of a population specific PROM.MethodsQualitative semistructured interviews combining phenomenological and grounded theory methods, reported using Consolidated criteria for Reporting Qualitative research guidelines. A purposive sample of 10 fast jet pilots with neck pain was recruited. Concept elicitation interviews were audio recorded, transcribed verbatim along with field notes. Data analysis involved subject and methodological expertise used a concept elicitation approach.ResultsParticipants included 10 male fast jet pilots, age 34.7 years. Identified themes included: (1) physical symptoms associated with flying activities; (2) occupational effects revealed modifications of flying, or ‘suboptimal’ performance owing to neck pain; (3) psychological effects revealed feelings or worry and (4) social and activity effects showed impact on out of work time.ConclusionPopulation-specific occupational, psychological and social factors should be considered alongside physical symptoms when managing neck pain in military aircrew. Findings support the development of a PROM specifically designed for military aircrew with neck pain.

Correlation between nasal mucosal temperature change and the perception of nasal patency: a literature review

2021 ◽  
Vol 135 (2) ◽  
pp. 104-109
Author(s):  
R Tjahjono ◽  
N Singh
Keyword(s):  
Temperature Change ◽  
Outcome Measure ◽  
Patient Reported Outcome ◽  
Subjective Perception ◽  
Nasal Patency ◽  
Patient Reported Outcome Measure ◽  
Physical Measurements ◽  
Pubmed Database ◽  
Patient Reported ◽  
The Impact

AbstractBackgroundThe mechanism of nasal airflow sensation is poorly understood. This study aimed to examine the role of nasal mucosal temperature change in the subjective perception of nasal patency and the methods by which it can be quantified.MethodMedline and PubMed database searches were performed to retrieve literature relevant to the topic.ResultsThe primary mechanism producing the sensation of nasal patency is thought to be the activation of transient receptor potential melastatin family member 8 (‘TRPM8’), a thermoreceptor that is activated by nasal mucosal cooling. Computational fluid dynamics studies have demonstrated that increased airflow and heat flux are correlated with better patient-reported outcome measure scores. Similarly, physical measurements of the nasal cavity using temperature probes have shown a correlation between lower nasal mucosal temperatures and better patient-reported outcome measure scores.ConclusionNasal mucosal temperature change may be correlated with the perception of improved nasal patency. Future research should quantify the impact of mucosal cooling on the perception of nasal airway obstruction.

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