Development, Use, and Interpretation of Patient-Reported Outcomes for Clinical Decision Making in Ophthalmology

Miskala, Päivi H.

doi:10.1001/jamaophthalmol.2016.0820

Cited by 2 publications

(2 citation statements)

References 6 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Although treatment efficacy in ophthalmology is primarily evaluated from the clinician perspective [ 13 – 15 , 17 ], it is increasingly recognized that patients are best positioned to describe the impact of treatment on their disease [ 18 ]. Patients also provide unique and important insights regarding treatment effects on health-related quality of life (HRQoL) and other concepts that are distal to signs and symptoms of disease [ 18 , 19 ]. Patient perceptions of symptoms or HRQoL can also complement observed clinician-reported outcomes and provide further evidence of treatment efficacy in clinical trials [ 18 ].…”

Section: Introductionmentioning

confidence: 99%

Development and Preliminary Validation of an Instrument to Measure Symptoms and Impacts in Patients with Proliferative Diabetic Retinopathy

et al. 2023

View full text Add to dashboard Cite

Introduction Following a review of patient-reported outcome (PRO) instruments in the literature, existing PRO instruments may not adequately capture the experience of receiving treatment for proliferative diabetic retinopathy (PDR). Therefore, this study aimed to develop a de novo instrument to comprehensively assess the patient experience of PDR. Methods This qualitative, mixed-methods study comprised item generation for the Diabetic Retinopathy-Patient Experience Questionnaire (DR-PEQ), content validation in patients with PDR, and preliminary Rasch measurement theory (RMT) analyses. Adult patients with diabetes mellitus and PDR who received aflibercept and/or panretinal photocoagulation within 6 months of study initiation were eligible for participation. The preliminary DR-PEQ comprised four scales: Daily Activities, Emotional Impact, Social Impact, and Vision Problems. DR-PEQ items were generated using existing knowledge of patient experiences in PDR and conceptual gaps identified from existing PRO instruments. Patients indicated the level of difficulty conducting daily activities and frequency experiencing emotional impacts, social impacts, and vision problems attributed to diabetic retinopathy and its treatment in the past 7 days. Content validity was evaluated in two rounds of in-depth, semi-structured patient interviews. Measurement properties were investigated via RMT analyses. Results The preliminary DR-PEQ comprised 72 items. Overall, mean (SD) patient age was 53.7 (14.7) years. Forty patients completed the first interview; of these, 30 completed the second interview. Patients reported that the DR-PEQ was easily understood and relevant to their experience. Minor revisions, including removal of the Social Impact scale and addition of a Treatment Experience scale, were implemented to generate 85 items spanning four scales: Daily Activities, Emotional Impact, Vision Problems, and Treatment Experience. RMT analyses provided preliminary evidence that the DR-PEQ performed as intended. Conclusion The DR-PEQ evaluated a broad spectrum of symptoms, functional impacts, and treatment experiences relevant to patients with PDR. Additional analyses are warranted to evaluate psychometric properties in a larger patient population. Supplementary Information The online version contains supplementary material available at 10.1007/s12325-023-02447-8.

show abstract

Section: Introductionmentioning

confidence: 99%

Development and Preliminary Validation of an Instrument to Measure Symptoms and Impacts in Patients with Proliferative Diabetic Retinopathy

et al. 2023

View full text Add to dashboard Cite

show abstract

“…At present, Patient Reported Outcome Measurements (PROM) have gained great significance, 1 as an effective and simple mechanism to collect information on the burden of disease from a patient's point of view. 2 This kind of instruments allows for a reliable determination of how much subjective alteration patients feel about their quality of life (QoL), according to the disease they suffer.…”

Section: Introductionmentioning

confidence: 99%

<p>Both Subjective Emotional Distress and Visual Handicap Correlate with Belin ABCD Classification in the Worse Eye as Measured with the “Keratoconus End-Points Assessment Questionnaire” (KEPAQ)</p>

Balparda¹,

Herrera-Chalarca

Silva-Quintero

et al. 2020

OPTH

View full text Add to dashboard Cite

Background: Keratoconus is a disease characterized by progressive corneal distortion and quality of vision. So far, no study using disease-specific scales has evaluated whether different stages of the disease correlate with higher quality of life (QoL) compromise. Methods: A total of 114 patients with a confirmed diagnosis of Keratoconus were included in this retrospective study. All patients underwent a clinical and a Pentacam evaluation. They were also administered the "Keratoconus End-Points Assessment Questionnaire" (KEPAQ). Belin ABCD criteria were used for Keratoconus classification. "Better eye" was defined as the eye with the lowest maximum keratometry value. Spearman Rank Order Correlation was used to determine the correlation between the different Belin criteria and the KEPAQ scores in both subscales. Results: Mean age was 28.13 ± 11.57 years, with 39.47% of patients being male. Mean score for the KEPAQ-E was 2.33 ± 3.40 Logit, while for the KEPAQ-F, it was 1.85 ± 3.61 Logit. Criteria A (anterior elevation), B (posterior elevation) and D (visual acuity) in the worse eye correlated significantly with a greater decrease in QoL (p < 0.05 for all correlations). No correlation could be found regarding the better eye. Conclusion: A greater corneal distortion in the worse eye, as determined by Belin ABCD, is associated with a greater decrease in patient's QoL. Surgical improvement of the worse eye should probably be performed before surgery of the better eye, as it may provide a better response regarding the quality of life improvement.

show abstract

Development, Use, and Interpretation of Patient-Reported Outcomes for Clinical Decision Making in Ophthalmology

Cited by 2 publications

References 6 publications

Development and Preliminary Validation of an Instrument to Measure Symptoms and Impacts in Patients with Proliferative Diabetic Retinopathy

Development and Preliminary Validation of an Instrument to Measure Symptoms and Impacts in Patients with Proliferative Diabetic Retinopathy

<p>Both Subjective Emotional Distress and Visual Handicap Correlate with Belin ABCD Classification in the Worse Eye as Measured with the “Keratoconus End-Points Assessment Questionnaire” (KEPAQ)</p>

Contact Info

Product

Resources

About