scholarly journals Systematic collection of patient reported outcome research data: A checklist for clinical research professionals

2016 ◽  
Vol 48 ◽  
pp. 21-29 ◽  
Author(s):  
Leslie Wehrlen ◽  
Mike Krumlauf ◽  
Elizabeth Ness ◽  
Damiana Maloof ◽  
Margaret Bevans
Keyword(s):  
Clinical Research ◽  
Outcome Research ◽  
Patient Reported Outcome ◽  
Research Data ◽  
Patient Reported ◽  
Research Professionals ◽  
Systematic Collection

scholarly journals Piloting a web-based systematic collection and reporting of patient-reported outcome measures and patient-reported experience measures in chronic heart failure

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e037754
Author(s):  
Francesca Pennucci ◽  
Sabina De Rosis ◽  
Claudio Passino
Keyword(s):  
Heart Failure ◽  
Chronic Heart Failure ◽  
Outcome Measures ◽  
Health Workers ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Population Characteristics ◽  
Web Based ◽  
Patient Reported ◽  
Systematic Collection

ObjectivesTo evaluate the feasibility of a digital and continuous collection and reporting of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) for chronic heart failure (CHF).DesignA single-site pilot study was settled for evaluating the feasibility of the intervention, both using qualitative and quantitative data (ie, workshop, surveys).SettingThe pilot has been implemented in a Tuscan specialised hospital (Italy).Participants162 patients were involved. Inclusion criteria were: a previous diagnosis of HF, age ≥18 years, absence of cognitive impairment or active tumours, ability to provide informed consent to study participation.InterventionThe continuous collection and reporting of PROMs and PREMs has been designed and implemented in 2018. PREMs questionnaires for patients were developed, while Kansas City Cardiomyopathy Questionnaire-12 was used for assessing PROMs. Questionnaires are administered at specific time points: discharge; 30 days, 7 and 12 months after the discharge. Enrolment of patients, administration and real-time reporting of questionnaires are carried on through a digital platform.Outcome measuresEnrolment, response and drop-out rates were considered to assess the feasibility of the intervention. Qualitative data were collected during meetings and workshops with health workers. The representativeness of the recruited sample with respect to the population characteristics was also evaluated.ResultsThe system has been successfully implemented during 2018. Response rates have been consistently above 50%, demonstrating patients’ transversal willingness to participate. All the involved stakeholders acknowledged the feasibility of the design. The recruited sample is significantly different in terms of age and educational level compared with the overall population characteristics.ConclusionIt is possible to run a web-based systematic collection and reporting system for CHF patient-reported data. Systematic collection and reporting of PROMs and PREMs data allows professionals to increasingly assume CHF patient perspective in their daily work. Limitations will be used to improve the system.

scholarly journals Interviewing to develop Patient-Reported Outcome (PRO) measures for clinical research: eliciting patients’ experience

2014 ◽  
Vol 12 (1) ◽  
pp. 15 ◽  
Author(s):  
Anne Brédart ◽  
Alexia Marrel ◽  
Linda Abetz-Webb ◽  
Kathy Lasch ◽  
Catherine Acquadro
Keyword(s):  
Clinical Research ◽  
Patient Reported Outcome ◽  
Patient Reported ◽  
Patients Experience

Reply to “The Problem of Collinearity in Mental Health and Patient Reported Outcome Research”

2021 ◽  
Vol 46 (2) ◽  
pp. e3-e6
Author(s):  
Angela P. Presson ◽  
Tom H. Greene ◽  
Zhining Ou ◽  
Chong Zhang ◽  
Andrew R. Tyser ◽  
...  
Keyword(s):  
Mental Health ◽  
Outcome Research ◽  
Patient Reported Outcome ◽  
Patient Reported

Interpreting Patient-reported Outcome Scores for Clinical Research and Practice

Medical Care ◽  
2019 ◽  
Vol 57 ◽  
pp. S8-S12 ◽  
Author(s):  
Qiuling Shi ◽  
Tito R. Mendoza ◽  
Charles S. Cleeland
Keyword(s):  
Clinical Research ◽  
Patient Reported Outcome ◽  
Research And Practice ◽  
Patient Reported ◽  
Outcome Scores

scholarly journals The use of patient-reported outcome research in modern ophthalmology: impact on clinical trials and routine clinical practice

2019 ◽  
Vol Volume 10 ◽  
pp. 9-24 ◽  
Author(s):  
Tasanee Braithwaite ◽  
Melanie Calvert ◽  
Alastair Gray ◽  
Konrad Pesudovs ◽  
Alastair Denniston
Keyword(s):  
Clinical Trials ◽  
Clinical Practice ◽  
Outcome Research ◽  
Patient Reported Outcome ◽  
Routine Clinical Practice ◽  
Patient Reported

scholarly journals Implementation of quality measures and patient-reported outcomes in an epilepsy clinic

Neurology ◽  
2019 ◽  
Vol 93 (22) ◽  
pp. e2032-e2041 ◽  
Author(s):  
Lidia M.V.R. Moura ◽  
Brandon Magliocco ◽  
John P. Ney ◽  
Eric M. Cheng ◽  
Gregory J. Esper ◽  
...  
Keyword(s):  
Mental Health ◽  
Quality Improvement ◽  
Outcome Measurement ◽  
Quality Measures ◽  
Patient Reported Outcome ◽  
Care Quality ◽  
Measurement Information ◽  
Physical And Mental Health ◽  
Patient Reported ◽  
Systematic Collection

ObjectiveTo see if systematic collection of patient-reported epilepsy quality measures can identify opportunities to improve care, and to examine the associations between these measures and physical and mental health.MethodsWe developed a patient-reported questionnaire for medication adherence, seizure frequency, medication side effects, and driving that included the Patient-Reported Outcome Measurement Information System–10 (PROMIS-10) (physical and mental health). We offered it to all adult patients seen twice in an epilepsy clinic (January 2017–January 2018). The questionnaire was available on the web as well as a tablet provided at appointment check-in. We used the first completed questionnaire to explore the relationship between patient-reported care quality and measures of physical and mental health.ResultsA total of 610 unique patients (15% of the total encounters) completed a survey. Respondents were comparable to nonrespondents. Respondents reported gaps in care or opportunities for quality improvement in 48.4% (n = 295) of the encounters. Of patients who reported at least 1 seizure per month over the previous 3 months, 55.2% (n = 100) reported problems with adherence, 30.0% (n = 131) reported having problems believed to be adverse reactions to anticonvulsants, and 15.2% (n = 41) reported driving. In addition, respondents who reported either seizures over the recent 3 months, nonadherence to treatment due to cost, or anticonvulsant-associated adverse effects had consistently worse physical and mental health (all p < 0.05).ConclusionsSystematic collection of epilepsy quality measures endorsed by the American Academy of Neurology can identify opportunities for quality improvement. Measures of epilepsy care quality predict outcomes that matter to patients.

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