scholarly journals Fifteen Years’ Use of Patient-Reported Outcome Measures at the Group and Patient Levels: Trend Analysis

10.2196/15856 ◽  
2019 ◽  
Vol 21 (9) ◽  
pp. e15856 ◽  
Author(s):  
Niels Henrik I Hjollund
Keyword(s):  
Text Messaging ◽  
Response Rates ◽  
Patient Reported Outcome ◽  
Health Data ◽  
Generic Model ◽  
Clinical Use ◽  
Patient Identification ◽  
General Data Protection Regulation ◽  
Use Of Resources ◽  
Patient Reported

Background Since 2004, we have collected patient-reported outcome (PRO) data from several Danish patient populations for use at the group and patient levels. Objective The aim of this paper is to highlight trends during the last 15 years with respect to patient inclusion, the methods for collection of PRO data, the processing of the data, and the actual applications and use of the PRO measurements. Methods All PRO data have been collected using the AmbuFlex/WestChronic PRO system, which was developed by the author in 2004 and has been continuously updated since. The analysis of trends was based on a generic model applicable for any kind of clinical health data, according to which any application of clinical data may be divided into four processes: patient identification, data collection, data aggregation, and the actual data use. Data for analysis were generated by a specific application in the system and transferred for analysis to the R package. Results During the 15-year period, 78,980 patients within 28 different groups of chronic and malignant illnesses have answered 260,433 questionnaires containing a total of 13,538,760 responses. Several marked changes have taken place: (1) the creation of cohorts for clinical epidemiological research purposes has shifted towards cohorts defined by clinical use of PRO data at the patient level; (2) the development of AmbuFlex, where PRO data are used as the entire basis for outpatient follow-up instead of fixed appointments, has undergone exponential growth and the system is currently in use in 47 International Statistical Classification of Diseases and Related Health Problems groups, covering 16,000 patients and 94 departments throughout Denmark; (3) response rates (up to 92%) and low attrition rates have been reached in group level projects, and there are even higher response rates in AmbuFlex where the patients are individually referred; (4) The answering method has shifted, as while in 2005 a total of 66.5% of questionnaires were paper based, this is the case for only 4.3% in 2019; and (5) the approach methods for questionnaires and reminders have changed dramatically from letter, emails, and short message service text messaging to a national, secure electronic mail system through which 93.2% of the communication to patients took place in 2019. The combination of secure email and web-based answering has resulted in a low turnaround time in which half of responses are now received within 5 days. Conclusions The demand for clinical use of PRO measurements has increased, driven by a wish among patients as well as clinicians to use PRO to promote better symptom assessment, more patient-centered care, and more efficient use of resources. Important technological changes have occurred, creating new opportunities, and making PRO collection and use cheaper and more feasible. Several legal changes may constitute a barrier for further development as well as a barrier for better utilization of patients’ questionnaire data. The current legal restrictions on the joint use of health data imposed by the European Union’s General Data Protection Regulation makes no distinction between use and misuse, and steps should be taken to alleviate these restrictions on the joint use of PRO data.

scholarly journals Fifteen Years’ Use of Patient-Reported Outcome Measures at the Group and Patient Levels: Trend Analysis (Preprint)

2019 ◽  
Author(s):  
Niels Henrik I Hjollund
Keyword(s):  
Text Messaging ◽  
Response Rates ◽  
Patient Reported Outcome ◽  
Health Data ◽  
Generic Model ◽  
Clinical Use ◽  
Patient Identification ◽  
General Data Protection Regulation ◽  
Use Of Resources ◽  
Patient Reported

BACKGROUND Since 2004, we have collected patient-reported outcome (PRO) data from several Danish patient populations for use at the group and patient levels. OBJECTIVE The aim of this paper is to highlight trends during the last 15 years with respect to patient inclusion, the methods for collection of PRO data, the processing of the data, and the actual applications and use of the PRO measurements. METHODS All PRO data have been collected using the AmbuFlex/WestChronic PRO system, which was developed by the author in 2004 and has been continuously updated since. The analysis of trends was based on a generic model applicable for any kind of clinical health data, according to which any application of clinical data may be divided into four processes: patient identification, data collection, data aggregation, and the actual data use. Data for analysis were generated by a specific application in the system and transferred for analysis to the R package. RESULTS During the 15-year period, 78,980 patients within 28 different groups of chronic and malignant illnesses have answered 260,433 questionnaires containing a total of 13,538,760 responses. Several marked changes have taken place: (1) the creation of cohorts for clinical epidemiological research purposes has shifted towards cohorts defined by clinical use of PRO data at the patient level; (2) the development of AmbuFlex, where PRO data are used as the entire basis for outpatient follow-up instead of fixed appointments, has undergone exponential growth and the system is currently in use in 47 International Statistical Classification of Diseases and Related Health Problems groups, covering 16,000 patients and 94 departments throughout Denmark; (3) response rates (up to 92%) and low attrition rates have been reached in group level projects, and there are even higher response rates in AmbuFlex where the patients are individually referred; (4) The answering method has shifted, as while in 2005 a total of 66.5% of questionnaires were paper based, this is the case for only 4.3% in 2019; and (5) the approach methods for questionnaires and reminders have changed dramatically from letter, emails, and short message service text messaging to a national, secure electronic mail system through which 93.2% of the communication to patients took place in 2019. The combination of secure email and web-based answering has resulted in a low turnaround time in which half of responses are now received within 5 days. CONCLUSIONS The demand for clinical use of PRO measurements has increased, driven by a wish among patients as well as clinicians to use PRO to promote better symptom assessment, more patient-centered care, and more efficient use of resources. Important technological changes have occurred, creating new opportunities, and making PRO collection and use cheaper and more feasible. Several legal changes may constitute a barrier for further development as well as a barrier for better utilization of patients’ questionnaire data. The current legal restrictions on the joint use of health data imposed by the European Union’s General Data Protection Regulation makes no distinction between use and misuse, and steps should be taken to alleviate these restrictions on the joint use of PRO data.

scholarly journals DELIVERY OF COMMON KNEE PATIENT-REPORTED OUTCOME INSTRUMENTS BY AUTOMATED MOBILE PHONE TEXT MESSAGING IN PEDIATRIC SPORTS MEDICINE

2019 ◽  
Vol 7 (3_suppl) ◽  
pp. 2325967119S0004
Author(s):  
Xochitl Mellor ◽  
Matthew J. Buczek ◽  
J. Todd Lawrence ◽  
Theodore J. Ganley ◽  
Alexander J. Adams ◽  
...  
Keyword(s):  
High School Students ◽  
Mobile Phone ◽  
Sports Medicine ◽  
Text Messaging ◽  
Text Message ◽  
Patient Reported Outcome ◽  
Message Delivery ◽  
School Students ◽  
Patient Demographics ◽  
Patient Reported

Background: Patient-reported outcome (PRO) instruments measure a patient’s health status in a variety of domains, including physical, mental and social well-being. The delivery of such instruments has become an integral part of healthcare, commonly employed to assess treatment efficacy and outcomes in sports medicine. With the proliferation of mobile phones, administration of PROs across patient-friendly platforms (e.g. apps, text messaging) may increase completion rates, particularly among younger patients. The purpose of this study was to validate the collection of common knee PROs with text messaging in sports medicine, by correlating text messaging responses with traditional paper delivery in adolescents and young adults. Methods: Patients presenting to a hospital-based pediatric orthopaedic sports medicine clinic with a knee injury were enrolled in this prospective investigation. Patients were excluded if they were undergoing a same-day office procedure, underwent surgery within the previous 90 days, and/or had no access to a mobile phone. Paper versions of the Pediatric International Knee Documentation Committee (Pedi-IKDC) Subjective Knee Evaluation Form and the Pediatric Functional Activity Brief Scale (Pedi-Fab Scale) questionnaires were completed during the patients’ initial clinic visit. Over the next 72 hours, the patients subsequently completed the mobile phone portion of the study outside of the clinic (Figure 1), which included text message delivery of the Pedi-IKDC and Pedi-Fab Scale, assigned in a random order. Correlations between paper and text message delivery of the two PROs were assessed. Secondary analyses were conducted to examine overall completion time and associations between patient demographics and text compliance. Results: Of the 91 patients (Age M=16.0 ±2.0 years; 48% female) initially enrolled in the study, 55 (60.4%) completed the text Pedi-Fab Scale, 48 (52.7%) completed the text Pedi-IKDC, and 39 (42.9%) completed both PROs. Among the evaluable sample, the intraclass correlation coefficient (ICC) between the paper and mobile phone delivery of the Pedi-Fabs was 0.95 (95% CI, 0.91-0.97). The ICC between the paper and mobile phone delivery of the Pedi-IKDC was 0.96 (95% CI, 0.93-0.98). Average Pedi-Fab scores on paper (M=12.7) and mobile phone (M=12.3) were not significantly different (p=0.52). Similarly, average Pedi-IKDC scores on paper (M=68.8) and mobile phone (M=67.7) were not significantly different (p=0.41). A Bland-Altman plot and linear regression revealed there was no proportional bias between the mean and difference for the Pedi-Fab scores (p=0.55) and Pedi-IKDC scores (p=0.56). The average completion time for the text delivered Pedi-Fab and Pedi-IKDC were 102±224 minutes and 159±155 minutes, respectively. For Pedi-Fab, there were no patient demographics that were significantly associated with text completion. However, high school students (p=0.025), female sex (p=0.036), and race (p=0.002), were significantly associated with the text completion of Pedi-IKDC. In addition, order of the delivery of the questionnaires and paper scores were not associated with text completion for either survey. Conclusion: Text message delivery using mobile phones permits valid assessment of Pedi-IKDC and Pedi-Fabs scores in this prospective observational study. Questionnaire delivery by automated text messaging allows asynchronous response and may increase compliance among high school students while also reducing the labor cost of collecting PROs.

scholarly journals Feasibility of Collecting Multiple Patient-Reported Outcome Measures Alongside the Dutch Arthroplasty Register

2019 ◽  
Vol 7 (4) ◽  
pp. 484-492
Author(s):  
Claire Tilbury ◽  
Claudia S Leichtenberg ◽  
Bart L Kaptein ◽  
Lennard A Koster ◽  
Suzan H M Verdegaal ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Short Form ◽  
Response Rates ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Participation Rates ◽  
Arthroplasty Register ◽  
Patient Reported ◽  
Lost To Follow Up

Background: Compliance rates with patient-reported outcome measures (PROMs) collected alongside arthroplasty registries vary in the literature. We described the feasibility of a routinely collected set PROMs alongside the Dutch Arthroplasty Register. Methods: The longitudinal Leiden Orthopaedics Outcomes of OsteoArthritis Study is a multicenter (7 hospitals), observational study including patients undergoing total hip or total knee arthroplasty (THA or TKA). A set of PROMs: Short Form-12, EuroQol 5 Dimensions, Hip/Knee injury and Osteoarthritis Outcome Score, Oxford Hip/Knee Score was collected preoperatively and at 6, 12, 24 months, and every 2 years thereafter. Participation rates and response rates were recorded. Results: Between June 2012 and December 2014, 1796 THA and 1636 TKA patients were invited, of whom 1043 THA (58%; mean age 68 years [standard deviation, SD: 10]) and 970 TKA patients (59%; mean age 71 years [SD 9.5]) participated in the study. At 6 months, 35 THA/38 TKA patients were lost to follow-up. Response rates were 90% for THA (898/1000) and 89% for TKA (827/932) participants. At 1 and 2 years, 8 and 18 THA and 17 and 11 TKA patients were lost to follow-up, respectively. The response rates among those eligible were 87% (866/992) and 84% (812/972) for THA and 84% (771/917) and 83% (756/906) for TKA patients, respectively. The 2-year questionnaire was completed by 78.5% of the included THA patients and by 77.9% of the included TKA patients. Conclusions: About 60% of patients undergoing THA or TKA complete PROMs preoperatively, with more than 80% returning follow-up PROMs. To increase the participation rates, more efforts concerning the initial recruitment of patients are needed.

scholarly journals Patient-Reported Outcome Coordinator Did Not Improve Quality of Life Assessment Response Rates: A Report from the Children's Oncology Group

PLoS ONE ◽  
2015 ◽  
Vol 10 (4) ◽  
pp. e0125290 ◽  
Author(s):  
Donna Johnston ◽  
Robert Gerbing ◽  
Todd Alonzo ◽  
Richard Aplenc ◽  
Rajaram Nagarajan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Response Rates ◽  
Patient Reported Outcome ◽  
Life Assessment ◽  
Improve Quality ◽  
Oncology Group ◽  
Quality Of Life Assessment ◽  
Patient Reported

PTU-225 Strategies to improve response rates to patient reported outcome measures in a surgical rct

Gut ◽  
2015 ◽  
Vol 64 (Suppl 1) ◽  
pp. A161.3-A162
Author(s):  
J Wood ◽  
H Bruhn ◽  
JA Cook ◽  
A McDonald ◽  
J Norrie ◽  
...  
Keyword(s):  
Outcome Measures ◽  
Response Rates ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Reported

scholarly journals Evaluating cancer patient–reported outcome measures: Readability and implications for clinical use

Cancer ◽  
2019 ◽  
Vol 125 (8) ◽  
pp. 1350-1356 ◽  
Author(s):  
Janet K. Papadakos ◽  
Rebecca C. Charow ◽  
Christine J. Papadakos ◽  
Lesley J. Moody ◽  
Meredith E. Giuliani
Keyword(s):  
Cancer Patient ◽  
Outcome Measures ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Clinical Use ◽  
Patient Reported

scholarly journals Patient-Reported Outcome Measures of Utilizing Person-Generated Health Data in the Case of Simulated Stroke Rehabilitation: Development Method

10.2196/16827 ◽  
2020 ◽  
Vol 9 (5) ◽  
pp. e16827 ◽  
Author(s):  
Gerardo Luis Dimaguila ◽  
Kathleen Gray ◽  
Mark Merolli
Keyword(s):  
Health Care ◽  
Outcome Measures ◽  
Clinical Work ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Health Data ◽  
Health Conditions ◽  
Evidence Based ◽  
Development Method ◽  
Patient Reported

Background Person-generated health data (PGHD) are health data that people generate, record, and analyze for themselves. Although the health benefits of PGHD use have been reported, there is no systematic way for patients to measure and report the health effects they experience from using their PGHD. Patient-reported outcome measures (PROMs) allow patients to systematically self-report their outcomes of a health care service. They generate first-hand evidence of the impact of health care services and are able to reflect the real-world diversity of actual patients and management approaches. Therefore, this paper argues that a PROM of utilizing PGHD, or PROM-PGHD, is necessary to help build evidence-based practice in clinical work with PGHD. Objective This paper aims to describe a method for developing PROMs for people who are using PGHD in conjunction with their clinical care—PROM-PGHD, and the method is illustrated through a case study. Methods The five-step qualitative item review (QIR) method was augmented to guide the development of a PROM-PGHD. However, using QIR as a guide to develop a PROM-PGHD requires additional socio-technical consideration of the PGHD and the health technologies from which they are produced. Therefore, the QIR method is augmented for developing a PROM-PGHD, resulting in the PROM-PGHD development method. Results A worked example was used to illustrate how the PROM-PGHD development method may be used systematically to develop PROMs applicable across a range of PGHD technology types used in relation to various health conditions. Conclusions This paper describes and illustrates a method for developing a PROM-PGHD, which may be applied to many different cases of health conditions and technology categories. When applied to other cases of health conditions and technology categories, the method could have broad relevance for evidence-based practice in clinical work with PGHD.

Abstract 25: Accuracy of Patient Identification of Atrial Fibrillation in the Clinic Setting

2018 ◽  
Vol 11 (suppl_1) ◽  
Author(s):  
Jeffrey L Turner ◽  
Benjamin E Hardisty ◽  
Gagandeep Kaur ◽  
Rashmee U Shah ◽  
Mihail G Chelu ◽  
...  
Keyword(s):  
Atrial Fibrillation ◽  
Sinus Rhythm ◽  
Patient Reported Outcome ◽  
Clinic Visit ◽  
Patient Identification ◽  
Significant Difference ◽  
Patient Reported ◽  
Appropriate Therapy ◽  
Electrocardiogram Ecg ◽  
Atrial Rhythm

Background: Atrial fibrillation (AF) related symptoms are commonly reported but often difficult to directly correlate with arrhythmia. Given that symptoms largely drive management, correct patient awareness of AF is critical to implementation of appropriate therapy. Objective: To determine accuracy of patient identification of their own atrial rhythm. Methods: All AF patients in our center undergo patient reported outcome assessment with the Toronto AF Severity Scale (AFSS) immediately prior to clinic visit. Using the validated questions from the AFSS, we assessed if patients were able to accurately determine their rhythm (AF or not) compared to an electrocardiogram (ECG) during the same clinic visit. Results: We identified 254 unique patients (Table 1) with interpretable ECG and AFSS data available from the same visit. Based on ECG, 81% (n=206) were not in AF. 20 of these 206 patients (9.7%) incorrectly identified themselves in AF (Figure 1). Patients who incorrectly thought they were in AF were significantly older (p<0.05). Of the 48 (18.9%) that were in AF by ECG, 15 (31.2%) incorrectly identified themselves in sinus rhythm. There was no significant difference between sex, age or mean heart rate in patients in AF. Overall 14% (35 of 254) provided an assessment that was inconsistent with their ECG. Conclusion: Approximately one of ten patients incorrectly identified themselves as being in AF despite being in sinus rhythm. Without a standardized method to confirm if symptoms truly correlate with AF these patients may be at risk for unnecessary antiarrhythmic therapies. On the contrary, nearly a third of patients were unaware of AF which reemphasizes the incidence of asymptomatic AF.

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