A Patient-reported Outcome Measure of Functional Vision for Children and Young People Aged 8 to 18 Years With Visual Impairment

BackgroundPatient-reported outcome measures (PROMs) are increasingly used in paediatric ophthalmology. However, little is known about the distribution of PROM scores among children and young people with visual impairment.AimTo investigate the distributions and predictors of scores on the VQoL_CYP (measuring vision-related quality of life) and FVQ_CYP (measuring functional vision).MethodsChildren and young people aged 8–18 years, with visual impairment/blindness (logarithm of the minimum angle of resolution (LogMAR) worse than 0.48 in the better eye, and/or eligible visual field restriction) completed the VQoL_CYP and FVQ_CYP at home or Great Ormond Street Hospital, London, UK. Associations between VQoL_CYP and FVQ_CYP scores and sociodemographic and clinical factors were analysed using multiple linear regression models.ResultsAmong 93 participants, VQoL_CYP scores ranged from 36.6 to 78.2 (mean=57.9, SD=8.1). FVQ_CYP scores ranged from 23.5 to 70.3 (mean=48.3, SD=10.1). Only 0.4% of the variation in VQoL_CYP scores was explained, with no associations with the variables of interest. By contrast, 21.6% of the variation in FVQ_CYP scores was explained, with a gradient of worse acuity (p<0.001) and female gender (p=0.04) associated with worse self-rated functional vision. Age, ethnicity, time of onset and stability/progression of visual impairment were not associated.DiscussionSelf-rated vision-related quality of life and functional vision are not readily predicted from sociodemographic or clinical characteristics that ophthalmologists measure/record. Routine use of PROMs in clinical practice can offer important insights. Use in research can provide valuable measures of effectiveness of interventions. The reference values provided will aid interpretation in both settings.

Download Full-text

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 ◽

10.2337/db20-753-p ◽

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

Download Full-text

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

SKIN The Journal of Cutaneous Medicine ◽

10.25251/skin.1.supp.93 ◽

2017 ◽

Vol 1 ◽

pp. s94 ◽

Cited By ~ 1

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.

Download Full-text

Faculty Opinions recommendation of Development and preliminary validation of a patient-reported outcome measure for swallowing after total laryngectomy (SOAL questionnaire).

Faculty Opinions – Post-Publication Peer Review of the Biomedical Literature ◽

10.3410/f.718003655.793475260 ◽

2013 ◽

Author(s):

Paul Pracy

Keyword(s):

Total Laryngectomy ◽

Outcome Measure ◽

Patient Reported Outcome ◽

Patient Reported Outcome Measure ◽

Preliminary Validation ◽

Patient Reported

Download Full-text

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

World Journal of Urology ◽

10.1007/s00345-020-03102-5 ◽

2020 ◽

Vol 38 (11) ◽

pp. 2863-2872 ◽

Cited By ~ 2

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.

Download Full-text

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

Journal of Patient-Reported Outcomes ◽

10.1186/s41687-021-00307-z ◽

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.

Download Full-text