Patient-Reported Outcomes in Clinical Care: Patient and Physician Perspectives

2010 ◽  
Vol 06 (01) ◽  
pp. 19
Author(s):  
Agnes Czimbalmos ◽  
Andrew Bottomley ◽  
◽  

The aim of this article is to review the application of patient-reported outcomes (PROs) in clinical care and consider its benefits, challenges and potential improvements. Previous studies demonstrated that health-related quality of life (HRQoL) data provide information to clinicians on patient health status, QoL, symptoms and wellbeing, along with any changes in these, and helps clinicians judge the needs of patients and tailor treatments accordingly. In addition, the benefits of the application of HRQoL tools include the involvement of patients in informed decision-making in terms of their treatment or care, higher patient satisfaction with healthcare services, improved patient–clinician relationships and better communication. In many studies, health professionals have expressed their interest in using these measures but feel they need to better understand them. Despite the wide use of information-gathering questionnaires and their promising results, it is still a challenge to predict the full value of these measures in clinical care. This article addresses these major concerns.


2019 ◽  
Vol 37 (27_suppl) ◽  
pp. 311-311
Author(s):  
Meggan Davis ◽  
Erik Winters ◽  
Lisa Acomb ◽  
Matt Palmgren ◽  
Kerry K McMillen ◽  
...  

311 Background: Adoption of Electronic Patient Reported Outcomes (ePROs) as part of clinical care is aided by the ability to respond to feedback and develop solutions founded on data. This requires access to usage, volume, response, and system performance data, yet with limited resources the infrastructure needed to store and analyze these data is often an afterthought. The Seattle Caner Care Alliance followed an iterative process to create dashboards featuring content-specific metrics while improving the underlying infrastructure of patient-generated data collected via the ePRO program. Methods: For each dashboard, the project team followed 7 steps: 1) Clarify the purpose. 2) Brainstorm requirements with content-specific stakeholders. 3) Create initial drafts for review, testing, and validation. 4) Validate that metrics are clear and provide value. 5) Update dashboards and review with stakeholders. 6) Perform technical clean-up and improvement to data infrastructure. 7) Iterate until all stakeholders approve. Results: 27 data tables were linked to create four content-specific dashboards: Overall Key Performance Indicators (KPI), an experimental dashboard, and responses to chemotherapy symptom and distress screening surveys. The KPI dashboard featured completion rate, adoption rate, survey and intervention volumes with the ability to filter by ePRO type, diagnosis, and intervention. The experimental dashboard allowed the project team to test data points, visualizations and methodologies before creating dashboards or updating data structures. Chemotherapy symptom and distress screening dashboards displayed interventions by symptom or concern, severity, referrals, and response distribution. Conclusions: Data collected via an ePRO program offers an opportunity for improvement during implementation and ongoing program development. An iterative approach to analyzing these data and creating dashboards that engaged stakeholders and focused on data quality was an effective way to untangle a complex web of patient-generated data and to support program improvement. Future ePRO implementation would benefit from the inclusion of a flexible data development approach as part of planning and design.


Hematology ◽  
2015 ◽  
Vol 2015 (1) ◽  
pp. 501-506 ◽  
Author(s):  
Sarah Dobrozsi ◽  
Julie Panepinto

Abstract Patient-reported outcome (PRO) measurement plays an increasingly important role in health care and understanding health outcomes. PROs are any report of a patient's health status that comes directly from the patient, and can measure patient symptoms, patient function, and quality-of-life. PROs have been used successfully to assess impairment in a clinical setting. Use of PROs to systematically quantify the patient experience provides valuable data to assist with clinical care; however, initiating use of PROs in clinical practice can be daunting. Here we provide suggestions for implementation of PROs and examples of opportunities to use PROs to tailor individual patient therapy to improve patient outcomes, patient–physician communication, and the quality of care for hematology/oncology patients.


2018 ◽  
Vol 3 (5) ◽  
pp. 160-167 ◽  
Author(s):  
Anne Lübbeke

Since improving the patient’s condition is the ultimate goal of clinical care and research, this review of research methodology focuses on outcomes in the musculoskeletal field. This paper provides an overview of conceptual models, different types of outcomes and commonly assessed outcomes in orthopaedics as well as epidemiological and statistical aspects of outcomes determination, measurement and interpretation. Clinicians should determine the outcome(s) most important to patients and/or public health in collaboration with the patients, epidemiologists/statisticians and other stakeholders. Key points in outcome choice are to evaluate both the benefit and harm of a health intervention, and to consider short- and longer-term outcomes including patient-reported outcomes. Outcome estimation should aim at identifying a clinically important difference (not the same as a statistically significant difference), at presenting measures of effects with confidence intervals and at taking the necessary steps to minimize bias. Cite this article: EFORT Open Rev 2018;3 DOI: 10.1302/2058-5241.3.170064


Author(s):  
Pamela Hinds ◽  
Laura Pinheiro ◽  
Molly McFatrich ◽  
Mia Waldron ◽  
Justin Baker ◽  
...  

Background Collecting symptom, function and adverse event (AE) data directly from children and adolescents undergoing cancer care is more comprehensive and accurate than relying solely on their caregivers or clinicians for their interpretations. We developed the Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE) measurement system with input from children, parents, and clinicians. Here we report how we determined the recommended Ped-PRO-CTCAE item scoring approach. Methods Scoring approaches compared were 1) at the AE attribute (frequency, severity, interference) using ordinal and dichotomous measures, 2) a weighted composite AE item score by AE attribute (0.5 - frequency; 1.0 - severity; 1.5 - interference), and 3) overall number of AEs endorsed. Associations of each AE attribute, AE item score and overall AE score with the PROMIS® Pediatric measures of anxiety, depressive symptoms, and fatigue were examined. The ability of the overall Ped-Pro-CTCAE AE score to identify patients with PROMIS symptom T-scores worse than reference population scores was assessed. Clinician preference for score information display was elicited through interviews. Results The diverse scoring approaches yielded similar outcomes, including positive correlations of the Ped-PRO-CTCAE attributes, AE item score, and the overall AEs score with the PROMIS Pediatric measures. Clinicians preferred the most granular display of scoring information (actual score reported by the child and corresponding descriptive term). Conclusions Although three scoring approaches yielded similar results, we recommend the AE attribute level of one score per Ped-Pro-CTCAE AE attribute for its simplicity of use in clinical care and research.


2021 ◽  
Vol 18 ◽  
pp. 147997312110435
Author(s):  
Michael E Hyland ◽  
Joseph W Lanario ◽  
Andrew Menzies-Gow ◽  
Adel H Mansur ◽  
James W Dodd ◽  
...  

Background The sensitivity of patient-reported outcomes (PROs) to detect the effects of treatment change depends on the match between the change in items of the PRO and the change that takes place in a sample of people. The aim of this study is to compare the sensitivity of different PROs in detecting changes following the initiation of biologic treatment in asthma. Methods: Patients starting a biologic treatment as part of clinical care completed the Asthma Control Questionnaire (ACQ-6), the Severe Asthma Questionnaire (SAQ and SAQ-global scores) and the EQ5D (EQ-5D-5L and EQ5D-VAS) at baseline. They completed the ACQ-6, SAQ, SAQ-global and a retrospective global rating of change (GRoC) scale at weeks 4, 8 and 16 and completed the EQ-5D-5L and EQ5D-VAS at week 16. The SAQ-global and EQ5D-VAS differ but both are single item 100-point questions. Sensitivity was measured by Cohen’s D effect size at each of the three time points. Results: 110 patients were recruited. Depending on the time of assessment, effect size varied between 0.45 and 0.64 for the SAQ, between 0.50 and 0.77 for the SAQ-global; between 0.45 and 0.69 for ACQ-6; between 0.91 and 1.22 for GRoC; 0.32 for EQ-5D-5L and 0.49 for EQ5D-VAS. Conclusion: The sensitivity to change of a questionnaire varies with the time of measurement. The three asthma-specific prospective measures (SAQ, SAQ-global and ACQ-6) have similar sensitivity to change. The single-item EQ5D-VAS was less sensitive than the asthma specific measures and less sensitive than the single-item SAQ-global. The EQ-5D-5L was least sensitive.


BMJ Open ◽  
2018 ◽  
Vol 8 (8) ◽  
pp. e021900 ◽  
Author(s):  
Chatree Chai-Adisaksopha ◽  
Mark W Skinner ◽  
Randall Curtis ◽  
Neil Frick ◽  
Michael B Nichol ◽  
...  

ObjectiveTo assess the psychometric properties of the Patient Reported Outcomes, Burdens and Experiences (PROBE) questionnaire.MethodsThis study was a cross-sectional, multinational study. Participants were enrolled if they were more than 10 years old and people with haemophilia A or B or people without a bleeding disorder. Participants were invited through non-governmental patient organisations in 21 countries between 01/27/2016 and 02/23/2017. The following psychometric properties: missing data, floor and ceiling effects, exploratory factor analysis and internal consistency reliability were examined. A PROBE Score was derived and assessed for its convergent and known groups validity.ResultsThe study analysed the data on 916 participants with median age of 37.0 (IQR 27.0 to 48.0) years, 74.8% male. In the domain assessing patient-reported outcomes (PROs), more than 15% of participants presented a ceiling effect for all items but two, and a floor effect for one item. Factor analysis identified three factors explaining the majority of the variance. Cronbach’s alpha coefficient indicated good internal consistency reliability (0.84). PROBE items showed moderate to strong correlations with corresponding EuroQol five dimension 5-level instrument (EQ-5D-5L) domains. The PROBE Score has a strong correlation (r=0.67) with EQ-5D-5L utility index score. The PROBE Score has a known groups validity among various groups.ConclusionsThe results of this study suggest that PROBE is a valid questionnaire for evaluating PROs in people with haemophilia as well as control population. The known-group property of PROBE will allow its use in future clinical trials, longitudinal studies, health technology assessment studies, routine clinical care or registries. Additional studies are needed to test responsiveness and sensitivity to change.Trial registration numberNCT02439710; Results.


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