scholarly journals Response rate and costs for automated patient-reported outcomes collection alone compared to combined automated and manual collection

Author(s):  
Yvette Pronk ◽  
Peter Pilot ◽  
Justus M. Brinkman ◽  
Ronald J. van Heerwaarden ◽  
Walter van der Weegen
2019 ◽  
Vol 37 (15_suppl) ◽  
pp. e18312-e18312 ◽  
Author(s):  
Sidharth Anand ◽  
Anne Margaret Walling ◽  
Sarah F. DAmbruoso ◽  
Neil Wenger ◽  
Jennifer Singer ◽  
...  

e18312 Background: Establishing a system to monitor patient reported outcomes (“PRO”) has been demonstrated to be essential for a well-functioning cancer system. Studies have shown that routine collection of PROs allows providers to address medical issues earlier and impacts a patient’s overall survival. Unmet needs for symptom management are prevalent in the cancer population, especially patients with advanced cancer. Approximately 35% of UCLA Hematology-Oncology patients with advanced cancer in 2016 presented to Emergency Rooms for symptom-related complaints such as nausea, pain, constipation, dehydration, and fatigue. We hypothesize that the creation of an electronic PRO platform through EPIC MyChart will ensure patients receive timely evaluation of their symptoms, resulting in improved quality of life, and decreased ER and hospital utilization. Methods: We developed an innovative PRO platform through Epic MyChart along with a Best Practice Advisory alert system to identify patients at risk for worsening symptoms, ER visits, and inpatient admissions. We then built an electronic version of the Edmonson Symptoms Assessment System, which providers can push to patients through Epic MyChart, with results stored within the Flowsheets section of Epic. We also built a passive alert using Epic’s Best Practice Advisory (“BPA”) system, to notify providers when a patient’s MyChart ESAS Assessment Scores have exceeded a defined threshold. Results: Preliminary data from surveys sent to a series of advanced cancer patients seen in an outpatient palliative oncology clinic over 1 month, demonstrated a 100% response rate (6/7) surveys completed when sent one week prior to patient’s being seeing in clinic, and 17% response rate (1/6) when sent two to three weeks prior to clinic visit. The average total ESAS score reported was 40, with average individual score of 4/10 for any given symptom. Conclusions: We will implement this electronic PRO platform in multiple oncology clinics at UCLA, and measure provider and patient satisfaction, completion rates, and monitor outcomes such as ED visits and inpatient admissions. We hope this system will lead to an overall survival benefit. This project demonstrates the potential of developing innovative PRO platforms through Epic MyChart and the importance of clinical workflows in the implementation process.


2019 ◽  
Vol 24 (1) ◽  
pp. 96-103 ◽  
Author(s):  
Rebecca Y. Klinger ◽  
Claire Cunniff ◽  
Negmeldeen Mamoun ◽  
Mary Cooter ◽  
Nazish Hashmi ◽  
...  

Chronic pain after lung transplantation is a significant concern, in particular given the heterogeneity of the patient population and the challenges of achieving adequate pain control amid concerns related to complex immunosuppressant regimens and the possibility of respiratory depression. We undertook a patient-reported outcomes (PRO) survey administered via our electronic health care portal to examine the postoperative incisional pain prevalence in a cohort of lung transplant recipients at a single, high-volume center where bilateral thoracosternotomy is the preferred surgical approach. The Patient Reported Outcomes Measurement Information System (PROMIS) Global Health and Pain Intensity short forms were sent to a total of 173 lung transplant recipients who were more than 2 months postsurgery at the time of the study. A total of 64 patients responded to both PROMIS surveys (response rate 38%). In the cohort of survey respondents, we observed a chronic pain incidence of 58% after lung transplantation (median pain score 1/10) and an overall good quality of life score (median score 4/5); however, only 9.4% reported moderate-severe pain (pain score ≥5/10). Survey nonrespondents had higher rates of pretransplant opioid and psychiatric medication use compared with respondents. In this study, we demonstrated the feasibility of using an electronic PRO survey for assessing postoperative pain outcomes after lung transplantation. However, measuring pain outcomes using this type of tool highlights issues of response rate and potential selection bias. Larger studies are needed to adequately assess the risk and predictors of chronic pain after lung transplantation and its impact on quality of life.


2021 ◽  
Author(s):  
Olaf Neve ◽  
Peter Paul G. Van Benthem ◽  
Anne M. Stiggelbout ◽  
Erik F. Hensen

Abstract Background: Patient Reported Outcomes (PROs) are subjective outcomes of disease and/or treatment in clinical research. For effective evaluations of PROs, high response rates are crucial. This study assessed the impact of the delivery method on the patients’ response rate.Methods: A cohort of patients with a unilateral vestibular schwannoma (a condition with substantial impact on quality of life, requiring prolonged follow-up) was assigned to three delivery methods: email, regular mail, and hybrid. Patients were matched for age and time since the last visit to the outpatient clinic. The primary outcome was the response rate, determinants other than delivery mode were age, education and time since the last consultation. In addition, the effect of a second reminder by phone was evaluated. Results: In total 602 patients participated in this study. The response rates for delivery by email, hybrid, and mail were 45%, 58% and 60%, respectively. The response rates increased after a reminder by phone to 62%, 67% and 64%, respectively. A lower response rate was seen in association with a low level of education and longer time interval since last outpatient clinic visit.Conclusion: The response rate for PRO surveys is influenced by the delivery method. PRO surveys by regular mail yield the highest response rate, followed by hybrid and email delivery methods. Hybrid delivery combines good response rates with the ease of digitally returned questionnaires.


2016 ◽  
Vol 105 (2) ◽  
pp. e38
Author(s):  
Meredith L. Snook ◽  
Luke C. Henry ◽  
Joseph S. Sanfilippo ◽  
Anthony J. Zeleznik ◽  
Anthony P. Kontos

2021 ◽  
pp. 095646242110327
Author(s):  
Shivali Suri ◽  
Deborah Yoong ◽  
Duncan Short ◽  
Darrell HS Tan ◽  
Mark Naccarato ◽  
...  

Background: An optimal adherence to antiretroviral therapy (ART) is fundamental for suppression of HIV viral load and favourable treatment outcomes. Patient-reported outcomes (PROs) are effective tools for improving patient–provider communication and focusing providers’ awareness on current health problems. The objectives of this analysis were (1) to determine the feasibility of implementing an electronic screening tool to measure PROs in a Canadian HIV clinic to obtain information on ART adherence and related factors and (2) to determine the factors related to sub-optimal adherence. Methods: This implementation research with a convenience sample of 600 people living with HIV (PLWH) was conducted in a busy, academic, urban HIV clinic in Toronto, Canada. PLWH were approached to participate in PRO assessments just prior to their in-clinic appointments, including health-related domains such as mental health, housing, nutrition, financial stress and medication adherence, and responses were summarized on a single sheet available for providers to review. Feasibility of implementing PROs was assessed by quantifying response rate, completion rate, time taken and participation rate. Medication adherence was elicited by self-report of the percentage of prescribed HIV medications taken in the last month. Unadjusted and adjusted odds ratios were estimated from logistic regression models to identify factors associated with adherence of <95%. Results: Of the 748 PLWH invited to participate, 692 (participation rate: 92.5%) completed the PRO assessments as standard of care in clinic. Of these, 600 consented to the use of their PRO results for research and were included in this analysis. The average response rate to the ART-related questions was 96.8% and mean completion rate was 95.5%. The median time taken to complete the assessment was 12.0 (IQR = 8.4–17.3) min, adjusted 8.7 (IQR = 7.2–10.8) min. 445 (74.9%) of participants were male, and 153 (26.2%) reported dissatisfaction with ART. 105 (19.7%) of the PLWH reported ART adherence of <95%. Multivariable logistic regression identified the following risk factors for sub-optimal adherence: dissatisfaction with ART (OR = 2.30, 95% CI 1.38–3.83), not having a family doctor or not visiting a family doctor in last year (OR = 1.69, 95% CI 1.02–2.79). Conclusion: Collecting self-reported health information from PLWH through PROs in a busy urban clinic was feasible and can provide relevant information to healthcare providers on issues related to adherence. This has a potential to help in individualizing ambulatory care.


2016 ◽  
Vol 34 (24) ◽  
pp. 2866-2873 ◽  
Author(s):  
Lucio Crinò ◽  
Myung-Ju Ahn ◽  
Filippo De Marinis ◽  
Harry J.M. Groen ◽  
Heather Wakelee ◽  
...  

Purpose Phase I data (ASCEND-1) showed ceritinib efficacy in patients with ALK-rearranged non–small-cell lung cancer (NSCLC), regardless of brain metastases status and with or without prior therapy with an inhibitor of the ALK protein. Data are presented from a phase II trial (ASCEND-2) in which ceritinib efficacy and safety were evaluated in patients who had ALK-rearranged NSCLC previously treated with at least one platinum-based chemotherapy and who had experienced progression during crizotinib treatment as their last prior therapy. Patients and Methods Patients with advanced ALK-rearranged NSCLC, including those with asymptomatic or neurologically stable baseline brain metastases, received oral ceritinib 750 mg/d. Whole-body and intracranial responses were investigator assessed (according to RECIST version 1.1). Patient-reported outcomes were evaluated with the Lung Cancer Symptom Scale and European Organisation for Research and Treatment of Cancer surveys (the core-30 and the 13-item lung cancer–specific quality-of-life questionnaires). Results All 140 patients enrolled had received two or more previous treatment regimens, and all patients had received crizotinib. The median duration of exposure and the follow-up time with ceritinib were 8.8 months (range, 0.1 to 19.4 months) and 11.3 months (range, 0.1 to 18.9 months), respectively. Investigator-assessed overall response rate was 38.6% (95% CI, 30.5% to 47.2%). Secondary end points, all investigator assessed, included disease control rate (77.1%; 95% CI, 69.3% to 83.8%), time to response (median, 1.8 months; range, 1.6 to 5.6 months), duration of response (median, 9.7 months; 95% CI, 7.1 to 11.1 months), and progression-free survival (median, 5.7 months; 95% CI, 5.4 to 7.6 months). Of 100 patients with baseline brain metastases, 20 had active target lesions at baseline; investigator-assessed intracranial overall response rate was 45.0% (95% CI, 23.1% to 68.5%). The most common adverse events (majority, grade 1 or 2) for all treated patients were nausea (81.4%), diarrhea (80.0%), and vomiting (62.9%). Patient-reported outcomes showed a trend toward improved symptom burden. The global quality-of-life score was maintained during treatment. Conclusion Consistent with its activity in ASCEND-1, ceritinib treatment provided clinically meaningful and durable responses with manageable tolerability in chemotherapy- and crizotinib-pretreated patients, including those with brain metastases.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Olaf M. Neve ◽  
Peter Paul G. van Benthem ◽  
Anne M. Stiggelbout ◽  
Erik F. Hensen

Abstract Background Patient Reported Outcomes (PROs) are subjective outcomes of disease and/or treatment in clinical research. For effective evaluations of PROs, high response rates are crucial. This study assessed the impact of the delivery method on the patients’ response rate. Methods A cohort of patients with a unilateral vestibular schwannoma (a condition with substantial impact on quality of life, requiring prolonged follow-up) was assigned to three delivery methods: email, regular mail, and hybrid. Patients were matched for age and time since the last visit to the outpatient clinic. The primary outcome was the response rate, determinants other than delivery mode were age, education and time since the last consultation. In addition, the effect of a second reminder by telephone was evaluated. Results In total 602 patients participated in this study. The response rates for delivery by email, hybrid, and mail were 45, 58 and 60%, respectively. The response rates increased after a reminder by telephone to 62, 67 and 64%, respectively. A lower response rate was associated with lower level of education and longer time interval since last outpatient clinic visit. Conclusion The response rate for PRO varies by delivery method. PRO surveys by regular mail yield the highest response rate, followed by hybrid and email delivery methods. Hybrid delivery combines good response rates with the ease of digitally returned questionnaires.


2016 ◽  
Vol 29 (2) ◽  
pp. 174-175
Author(s):  
Meredith L. Snook ◽  
Luke C. Henry ◽  
Joseph S. Sanfilippo ◽  
Anthony J. Zeleznik ◽  
Anthony P. Kontos

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