scholarly journals PMH52 PATIENT-REPORTED OUTCOMES IN A VULNERABLE POPULATION: A PILOT STUDY CONDUCTED WITH A NOVEL PATIENT COMMUNITY

2009 ◽  
Vol 12 (7) ◽  
pp. A360
Author(s):  
EF Cascade ◽  
H Stephenson
2017 ◽  
Author(s):  
James Weatherall ◽  
Yurek Paprocki ◽  
Theresa M Meyer ◽  
Ian Kudel ◽  
Edward A Witt

BACKGROUND Few studies assessing the correlation between patient-reported outcomes and patient-generated health data from wearable devices exist. OBJECTIVE The aim of this study was to determine the direction and magnitude of associations between patient-generated health data (from the Fitbit Charge HR) and patient-reported outcomes for sleep patterns and physical activity in patients with type 2 diabetes mellitus (T2DM). METHODS This was a pilot study conducted with adults diagnosed with T2DM (n=86). All participants wore a Fitbit Charge HR for 14 consecutive days and completed internet-based surveys at 3 time points: day 1, day 7, and day 14. Patient-generated health data included minutes asleep and number of steps taken. Questionnaires assessed the number of days of exercise and nights of sleep problems per week. Means and SDs were calculated for all data, and Pearson correlations were used to examine associations between patient-reported outcomes and patient-generated health data. All respondents provided informed consent before participating. RESULTS The participants were predominantly middle-aged (mean 54.3, SD 13.3 years), white (80/86, 93%), and female (50/86, 58%). Use of oral T2DM medication correlated with the number of mean steps taken (r=.35, P=.001), whereas being unaware of the glycated hemoglobin level correlated with the number of minutes asleep (r=−.24, P=.04). On the basis of the Fitbit data, participants walked an average of 4955 steps and slept 6.7 hours per day. They self-reported an average of 2.0 days of exercise and 2.3 nights of sleep problems per week. The association between the number of days exercised and steps walked was strong (r=.60, P<.001), whereas the association between the number of troubled sleep nights and minutes asleep was weaker (r=.28, P=.02). CONCLUSIONS Fitbit and patient-reported data were positively associated for physical activity as well as sleep, with the former more strongly correlated than the latter. As extensive patient monitoring can guide clinical decisions regarding T2DM therapy, passive, objective data collection through wearables could potentially enhance patient care, resulting in better patient-reported outcomes.


2017 ◽  
Vol 104 (1) ◽  
pp. 245-253 ◽  
Author(s):  
Onkar V. Khullar ◽  
Mohammed H. Rajaei ◽  
Seth D. Force ◽  
Jose N. Binongo ◽  
Yi Lasanajak ◽  
...  

Author(s):  
Joan E. Broderick ◽  
Marcella May ◽  
Joseph E. Schwartz ◽  
Ming Li ◽  
Aaron Mejia ◽  
...  

Lupus ◽  
2020 ◽  
Vol 29 (13) ◽  
pp. 1781-1789
Author(s):  
Suhas K Ganguli ◽  
Joyce S Hui-Yuen ◽  
Meenakshi Jolly ◽  
Jane Cerise ◽  
Barbara Anne Eberhard

Objective To evaluate the reliability, validity, feasibility and psychometric performance of the Lupus Impact Tracker (LIT) as a patient reported outcome (PRO) measure tool in pediatric systemic lupus erythematosus (pSLE). Methods This is a prospective, observational, pilot study where patients aged between 12 and 25 years, fulfilling the 1997 ACR classification criteria for SLE, were enrolled. Over 3 consecutive, routine, clinical visits, the patients completed the LIT alongside the Patient-Reported Outcomes Measurement Information System-Short Forms (PROMIS-SFs), Childhood Health Assessment Questionnaire (CHAQ). Rheumatologists completed the Systemic Lupus Erythematosus Disease Activity Index 2000 (SLEDAI-2K) and the Systemic Lupus International Collaborating Clinics/American College of Rheumatology (SLICC-ACR) Damage Index. Demographic, clinical and laboratory data were also collected. Results Of 46 patients enrolled, 38 patients completed 2 visits and 31 completed all 3 visits. Seventy-eight percent were female, 33% African American, 28% Asian, 15% Caucasian and 17% Hispanic. The mean (SD) age was 17.2 (2.7) years, with a mean (SD) disease duration of 4.6 (3.1) years. The mean (SD) SLEDAI-2K at enrollment was 3.54 (2.96). In the 38 patients who completed two or more visits, intra-class correlation coefficient and Cronbach alpha were calculated to be 0.70 and 0.91 respectively, signifying good reliability of LIT. The LIT showed positive correlation with CHAQ-Disability Index and majority of the PROMIS-SFs parameters. Construct validity was established against clinical disease activity (SLEDAI-2K). Conclusion The preliminary results indicate that the LIT is a reliable and valid instrument to capture PRO in p-SLE. Prospective validation with a larger, multicenter cohort is the next step.


Author(s):  
Joseph J Kromka ◽  
Monique C Chambers ◽  
Adam Popchak ◽  
James Irrgang ◽  
MaCalus V Hogan

ObjectivesInjuries to the ankle are common, with a significant number of ligamentous injuries involving the syndesmosis. In syndesmotic injuries severe enough to require surgical fixation, the two leading techniques are rigid screw and suture button fixation. The literature has shown that both techniques are effective, but there remains debate on the optimum method of treatment. The goal of this study was to evaluate patient-reported outcomes for these repair methods in a population of athletes.MethodsThis study was a retrospective cross-sectional study of patients who had undergone rigid screw or suture button fixation for an injury to the ankle syndesmosis. Specifically, a subpopulation of athletes was examined as it was hypothesised that these high-demand patients would have higher patient-reported outcomes with ongoing suture button fixation. Study participants were identified through a search of the medical record and were recruited through mailed letters and phone calls. Participants completed patient-reported outcome questionnaires including the Activities of Daily Living and Sports Subscales of the Foot and Ankle Ability Measure (FAAM) survey, FAAM Sports Subscale survey, Veteran’s Rand 12-item Health Survey (VR-12) and a customised athletic activity questionnaire. These patient-reported outcomes were compared between those who underwent screw fixation and those who underwent suture button fixation.Results32 patients completed the study, with 17 of these designated as ‘athletes’ competing in strenuous sports activities that involve jumping, cutting and hard pivoting including football, soccer, basketball, volleyball and gymnastics at the high school level or above. Patients were on average 3.9 years post op (SD 2.2). With the numbers available, no difference in outcomes between patients with rigid screw or suture button fixation was observed in the study as a whole. In a subpopulation of athletes, patients who received suture button fixation had higher FAAM scores compared with those treated with rigid screw fixation (p=0.02). Still, in the subpopulation of athletes, no statistical difference was observed with the available numbers for the other patient-reported outcomes.ConclusionThis pilot study of outcomes in an athletic population suggests that athletic patients may benefit from suture button fixation and lays the groundwork for future work examining the use of suture button fixation in high-demand patients.Level of evidenceLevel III—Retrospective Comparative Study.


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