Development of a patient-reported outcome measure for arm and hand function in Duchenne muscular dystrophy (UL-PROM DMD)

2015 ◽  
Vol 25 ◽  
pp. S227
Author(s):  
K. Klingels ◽  
A. Mayhew ◽  
E. Mazzone ◽  
M. Main ◽  
V. Decostre ◽  
...  
Keyword(s):  
Duchenne Muscular Dystrophy ◽  
Muscular Dystrophy ◽  
Outcome Measure ◽  
Hand Function ◽  
Patient Reported Outcome ◽  
Patient Reported Outcome Measure ◽  
Patient Reported

753-P: A Clinical Mixed-Methods Study of the Perceived Benefits of Using the Danish Diabetes Patient Reported Outcome Measure and Dialogue Support Tool in Routine Outpatient Diabetes Care

Diabetes ◽  
2020 ◽  
Vol 69 (Supplement 1) ◽  
pp. 753-P
Author(s):  
SOREN E. SKOVLUND ◽  
LISE TROELSEN ◽  
LISE MELLERGAARD NØRGAARD ◽  
PERNILLE H. KJAER ◽  
ANNA PIETRASZEK ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Diabetes Care ◽  
Outcome Measure ◽  
Diabetes Patient ◽  
Patient Reported Outcome ◽  
Mixed Methods Study ◽  
Perceived Benefits ◽  
Support Tool ◽  
Patient Reported Outcome Measure ◽  
Patient Reported

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.

Towards an Asthma Patient-Reported Outcome Measure for use in Digital Remote Monitoring

2021 ◽  
pp. 1-9
Author(s):  
Robert S. Rudin ◽  
Nabeel Qureshi ◽  
Dinah Foer ◽  
Anuj K. Dalal ◽  
Maria O. Edelen
Keyword(s):  
Remote Monitoring ◽  
Outcome Measure ◽  
Asthma Patient ◽  
Patient Reported Outcome ◽  
Patient Reported Outcome Measure ◽  
Patient Reported

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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