Development and validation of a Patient‐Reported Outcome in systemic sclerosis: the Hand scleroDerma lived Experience Scale (HAnDE Scale)

2021 ◽  
Author(s):  
J. Sibeoni ◽  
B. Dunogué ◽  
A. Dupont ◽  
D. Haiddar ◽  
N. Benmostefa ◽  
...  
Keyword(s):  
Systemic Sclerosis ◽  
Lived Experience ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Development And Validation

scholarly journals Patient-reported outcome measures in systemic sclerosis–related interstitial lung disease for clinical practice and clinical trials

2020 ◽  
Vol 5 (2_suppl) ◽  
pp. 48-60
Author(s):  
Lesley Ann Saketkoo ◽  
Mary Beth Scholand ◽  
Matthew R. Lammi ◽  
Anne-Marie Russell
Keyword(s):  
Clinical Practice ◽  
Systemic Sclerosis ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
Outcome Measures ◽  
Symptom Burden ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Science Methodology

Systemic sclerosis (SSc) is a progressive vasculopathic, fibrosing autoimmune condition, portending significant mortality; wherein interstitial lung disease (ILD) is the leading cause of death. Although lacking a definitive cure, therapeutics for (SSc-ILD) that stave progression exist with further promising primary and adjuvant compounds in development, as well as interventions to reduce symptom burden and increase quality of life. To date, there has been a significant but varied history related to systemic sclerosis–related interstitial lung disease trial design and endpoint designation. This is especially true of endpoints measuring patient-reported perceptions of efficacy and tolerability. This article describes the underpinnings and complexity of the science, methodology, and current state of patient-reported outcome measures used in (SSc-ILD) systemic sclerosis–related interstitial lung disease in clinical practice and trials.

Development and validation of a patient-reported outcome measurement in acute pancreatitis: the PAN-PROMISE study

Pancreatology ◽  
2019 ◽  
Vol 19 ◽  
pp. S7
Author(s):  
Enrique de-Madaria ◽  
Claudia Sánchez-Marin ◽  
Irene Carrillo ◽  
Serge Chooklin ◽  
Rafael Mejuto ◽  
...  
Keyword(s):  
Acute Pancreatitis ◽  
Outcome Measurement ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Development And Validation

scholarly journals Voice-Related Patient-Reported Outcome Measures: A Systematic Review of Instrument Development and Validation

2017 ◽  
Vol 60 (1) ◽  
pp. 62-88 ◽  
Author(s):  
David O. Francis ◽  
James J. Daniero ◽  
Kristen L. Hovis ◽  
Nila Sathe ◽  
Barbara Jacobson ◽  
...  
Keyword(s):  
Systematic Review ◽  
Treatment Effectiveness ◽  
A Priori ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Measurement Properties ◽  
Exclusion Criteria ◽  
Patient Reported ◽  
Development And Validation ◽  
Key Terms

Purpose The purpose of this study was to perform a comprehensive systematic review of the literature on voice-related patient-reported outcome (PRO) measures in adults and to evaluate each instrument for the presence of important measurement properties. Method MEDLINE, the Cumulative Index of Nursing and Allied Health Literature, and the Health and Psychosocial Instrument databases were searched using relevant vocabulary terms and key terms related to PRO measures and voice. Inclusion and exclusion criteria were developed in consultation with an expert panel. Three independent investigators assessed study methodology using criteria developed a priori. Measurement properties were examined and entered into evidence tables. Results A total of 3,744 studies assessing voice-related constructs were identified. This list was narrowed to 32 PRO measures on the basis of predetermined inclusion and exclusion criteria. Questionnaire measurement properties varied widely. Important thematic deficiencies were apparent: (a) lack of patient involvement in the item development process, (b) lack of robust construct validity, and (c) lack of clear interpretability and scaling. Conclusions PRO measures are a principal means of evaluating treatment effectiveness in voice-related conditions. Despite their prominence, available PRO measures have disparate methodological rigor. Care must be taken to understand the psychometric and measurement properties and the applicability of PRO measures before advocating for their use in clinical or research applications.

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