scholarly journals Patient-reported outcomes in Alberta: rationale, scope, and design of a database initiative

2019 ◽  
Vol 26 (4) ◽  
Author(s):  
C. A. Cuthbert ◽  
L. Watson ◽  
Y. Xu ◽  
D. J. Boyne ◽  
B. R. Hemmelgarn ◽  
...  
Keyword(s):  
Cancer Care ◽  
Patient Reported Outcomes ◽  
Clinical Epidemiology ◽  
Clinical Care ◽  
Health Data ◽  
Data Repository ◽  
Services Research ◽  
Cancer Data ◽  
Administrative Health Data ◽  
Patient Reported

Background The collection of patient reported outcomes (pros) is a standard of care in many cancer organizations. In Alberta, pros have been integrated into routine clinical practice since 2012. This longitudinal collection of pros provides a wealth of data and a unique research opportunity to improve cancer care. The goal of this pro data initiative is to establish a robust repository of information for ongoing clinical care and research focused on pros. In this paper, we describe the rationale, scope, and design of this initiative.Implementation The initiative consists of pros and other administrative health data from the province of Alberta. Retrieval of health data from a variety of provincially governed sources will create a platform of information on pros, health outcomes, cancer data, other health conditions, and demographics. The aims of the initiative are to use the data to inform best practices at the point of care; to conduct health services research, particularly clinical epidemiology studies; and to evaluate a variety of pro-related outcomes.Discussion Because this effort represents our first to integrate routinely collected pros with other administrative health data, a unique and robust data repository will be created. The ability to integrate various types of data will provide a comprehensive mechanism to evaluate a variety of outcomes. Because cancer care in Alberta is governed by a single health care system, the data linkages will include population health and psychosocial cancer data. We anticipate that research related to this initiative will ultimately help to inform more patient-centred care.

Improving Cancer Care Through the Patient Experience: How to Use Patient-Reported Outcomes in Clinical Practice

2017 ◽  
pp. 695-704 ◽  
Author(s):  
Kathi Mooney ◽  
Donna L. Berry ◽  
Meagan Whisenant ◽  
Daniel Sjoberg
Keyword(s):  
Patient Experience ◽  
Cancer Care ◽  
Patient Reported Outcomes ◽  
Clinical Care ◽  
Population Data ◽  
Population Level ◽  
Clinical Work ◽  
Aggregated Data ◽  
Individual Level ◽  
Patient Reported

Poorly controlled symptoms are common and debilitating during cancer treatment and can affect functional status and quality of life, health care resource utilization, treatment adherence, and cancer survivorship. Historically, the patient experience, including symptoms during treatment, has not been tracked or documented in the patient health record. Measurement of patient-reported outcomes (PROs), including symptoms, is an essential component to cancer care focused on the illness impact to the patient and family. PROs can be useful at the individual level for monitoring and promoting symptom care both in the clinic and remotely and at the population level for aggregating population data for use in research and quality improvement initiatives. Implementation of PROs in cancer clinical care requires a carefully thought out process to overcome challenges related to integrating PROs into existing electronic health records and clinical work flow. Issues with implementing PRO collection may include making decisions about measurement tools, modes of delivery, frequency of measurement, and interpretation that are guided by a clarification of the purpose for collecting PROs. We focus on three aspects of PRO use: (1) improving care for individual patients, (2) analyzing aggregated data to improve care and outcomes overall, and (3) considerations in implementing PRO collection.

Creation of On-PROST: The Ontario patient-reported outcomes of symptoms and toxicity applied clinical research unit.

2012 ◽  
Vol 30 (34_suppl) ◽  
pp. 47-47
Author(s):  
Geoffrey Liu ◽  
Doris Howell ◽  
Andrea Perez Cosio ◽  
Monika K. Krzyzanowska ◽  
Madeline Li ◽  
...  
Keyword(s):  
Patient Reported Outcomes ◽  
Clinical Care ◽  
Population Level ◽  
Symptom Assessment ◽  
Research Unit ◽  
Assessment System ◽  
Services Research ◽  
Disease Treatment ◽  
Patient Reported ◽  
Specific Symptoms

47 Background: The 14 Ontario Regional Cancer Centers serve a catchment of 13 million people, centrally coordinated by Cancer Care Ontario. Since 2009, computer kiosks collect the Edmonton Symptom Assessment System (ESAS) patient reported outcomes (PROs). At specific centers, additional PROs such as the Distress Assessment and Response Tool (DART) have been integrated. On-PROST was created in 2011 to customize PROs for disease-, treatment- and phase-specific symptoms and toxicities, and to address core multidimensional impacts of cancer. On-PROST aims to improve patient experience and quality of care through routine collection of standardized sets of PROs for combined use in clinical care and research. Methods: On-PROST structure has five research pillars, each dependent on quality PROs: Health Services Research; Biomarker Research; Radiation Oncology; Palliative/Supportive Care; and the PROs-Cancer Core items. National/international partnerships are being established to develop, standardize and implement PROs relevant across the entire cancer continuum. Results: National consensus was generated for the implementation of the Canadian PROMs-Cancer Core. Key domains on physical, emotional and social health were included, and implementation testing has begun. In parallel, specific On-PROST sub-projects have focused on identifying, validating, and standardizing logic-based sets of PROs for disease-, treatment- and phase-specific symptoms and toxicities. On-PROST projects have focused on topics that complement existing research by other groups (PROMIS, PRO-CTCAE). Initial projects have included: (i) assessment of dysphagia and related symptoms in head and neck and esophageal cancer populations; (ii) short/long term sexual function in prostate and testicular cancers; (iii) a lung cancer radiogenetic toxicity study; and (iv) patient reported outcomes related to physical activity and other modifiable behaviors after cancer diagnosis. Conclusions: The multi-pronged structure of On-PROST will systematically collect disease-, treatment-, and phase-specific PROs at a population level.

Implementation of Electronic Patient-Reported Outcomes in Routine Cancer Care at an Academic Center: Identifying Opportunities and Challenges

2020 ◽  
Vol 16 (11) ◽  
pp. e1255-e1263
Author(s):  
Sahil Sandhu ◽  
Zoe King ◽  
Michelle Wong ◽  
Sean Bissell ◽  
Jessica Sperling ◽  
...  
Keyword(s):  
Cancer Care ◽  
Patient Reported Outcomes ◽  
Medical Center ◽  
Clinical Care ◽  
Qualitative Interviews ◽  
Academic Medical Center ◽  
Implementation Strategies ◽  
Ease Of Use ◽  
Validity And Reliability ◽  
Patient Reported

PURPOSE: Electronic patient-reported outcomes (ePROs) can help clinicians proactively assess and manage their patients’ symptoms. Despite known benefits, there is limited adoption of ePROs into routine clinical care as a result of workflow and technologic challenges. This study identifies oncologists’ perspectives on factors that affect integration of ePROs into clinical workflows. METHODS: We conducted semistructured qualitative interviews with 16 oncologists from a large academic medical center, across diverse subspecialties and cancer types. Oncologists were asked how they currently use or could imagine using ePROs before, during, and after a patient visit. We used an inductive approach to thematically analyze these qualitative data. RESULTS: Results were categorized into the following three main themes: (1) selection and development of ePRO tool, (2) contextual drivers of adoption, and (3) patient-facing concerns. Respondents preferred diagnosis-based ePRO tools over more general symptom screeners. Although they noted information overload as a potential barrier, respondents described strong data visualization and ease of use as facilitators. Contextual drivers of oncologist adoption include identifying target early adopters, incentivizing uptake through use of ePRO data to support billing and documentation, and emphasizing benefits for patient care and efficiency. Respondents also indicated the need to focus on patient-facing issues, such as patient response rate, timing of survey distribution, and validity and reliability of responses. DISCUSSION: Respondents identified several barriers and facilitators to successful uptake of ePROs. Understanding oncologists’ perspectives is essential to inform both practice-level implementation strategies and policy-level decisions to include ePROs in alternative payment models for cancer care.

scholarly journals Detection of adverse drug events in e-prescribing and administrative health data: a validation study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Bettina Habib ◽  
Robyn Tamblyn ◽  
Nadyne Girard ◽  
Tewodros Eguale ◽  
Allen Huang
Keyword(s):  
Administrative Data ◽  
Gold Standard ◽  
Adverse Drug Events ◽  
Study Drug ◽  
Health Data ◽  
Diagnostic Code ◽  
Administrative Health Data ◽  
Potential Ades ◽  
Patient Reported

Abstract Background Administrative health data are increasingly used to detect adverse drug events (ADEs). However, the few studies evaluating diagnostic codes for ADE detection demonstrated low sensitivity, likely due to narrow code sets, physician under-recognition of ADEs, and underreporting in administrative data. The objective of this study was to determine if combining an expanded ICD code set in administrative data with e-prescribing data improves ADE detection. Methods We conducted a prospective cohort study among patients newly prescribed antidepressant or antihypertensive medication in primary care and followed for 2 months. Gold standard ADEs were defined as patient-reported symptoms adjudicated as medication-related by a clinical expert. Potential ADEs in administrative data were defined as physician, ED, or hospital visits during follow-up for known adverse effects of the study medication, as identified by ICD codes. Potential ADEs in e-prescribing data were defined as study drug discontinuations or dose changes made during follow-up for safety or effectiveness reasons. Results Of 688 study participants, 445 (64.7%) were female and mean age was 64.2 (SD 13.9). The study drug for 386 (56.1%) patients was an antihypertensive, and for 302 (43.9%) an antidepressant. Using the gold standard definition, 114 (16.6%) patients experienced an ADE, with 40 (10.4%) among antihypertensive users and 74 (24.5%) among antidepressant users. The sensitivity of the expanded ICD code set was 7.0%, of e-prescribing data 9.7%, and of the two combined 14.0%. Specificities were high (86.0–95.0%). The sensitivity of the combined approach increased to 25.8% when analysis was restricted to the 27% of patients who indicated having reported symptoms to a physician. Conclusion Combining an expanded diagnostic code set with e-prescribing data improves ADE detection. As few patients report symptoms to their physician, higher detection rates may be achieved by collecting patient-reported outcomes via emerging digital technologies such as patient portals and mHealth applications.

scholarly journals The INTREST registry: protocol of a multicenter prospective cohort study of predictors of women’s response to integrative breast cancer treatment

BMC Cancer ◽  
2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Heidemarie Haller ◽  
Petra Voiß ◽  
Holger Cramer ◽  
Anna Paul ◽  
Mattea Reinisch ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Clinical Trial ◽  
Cohort Study ◽  
Cancer Treatment ◽  
Prospective Cohort Study ◽  
Cancer Care ◽  
Prospective Cohort ◽  
Breast Cancer Treatment ◽  
Cancer Data ◽  
Patient Reported

Abstract Background Cancer registries usually assess data of conventional treatments and/or patient survival. Beyond that, little is known about the influence of other predictors of treatment response related to the use of complementary therapies (CM) and lifestyle factors affecting patients’ quality and quantity of life. Methods INTREST is a prospective cohort study collecting register data at multiple German certified cancer centers, which provide individualized, integrative, in- and outpatient breast cancer care. Patient-reported outcomes and clinical cancer data of anticipated N = 715 women with pTNM stage I-III breast cancer are collected using standardized case report forms at the time of diagnosis, after completing neo−/adjuvant chemotherapy, after completing adjuvant therapy (with the exception of endocrine therapy) as well as 1, 2, 5, and 10 years after baseline. Endpoints for multivariable prediction models are quality of life, fatigue, treatment adherence, and progression-based outcomes/survival. Predictors include the study center, sociodemographic characteristics, histologic cancer and comorbidity data, performance status, stress perception, depression, anxiety, sleep quality, spirituality, social support, physical activity, diet behavior, type of conventional treatments, use of and belief in CM treatments, and participation in a clinical trial. Safety is recorded following the Common Terminology Criteria for Adverse Events. Discussion This trial is currently recruiting participants. Future analyses will allow to identify predictors of short- and long-term response to integrative breast cancer treatment in women, which, in turn, may improve cancer care as well as quality and quantity of life with cancer. Trial registration German Clinical Trial Register DRKS00014852. Retrospectively registered at July 4th, 2018.

Patient‐reported outcomes and personalised cancer care

2020 ◽  
Author(s):  
◽  
Bogda Koczwara ◽  
James Bonnamy ◽  
Peggy Briggs ◽  
Bena Brown ◽  
...  
Keyword(s):  
Cancer Care ◽  
Patient Reported Outcomes ◽  
Patient Reported

scholarly journals Engagement and Participant Experiences With Consumer Smartwatches for Health Research: Longitudinal, Observational Feasibility Study (Preprint)

2019 ◽  
Author(s):  
Anna L Beukenhorst ◽  
Kelly Howells ◽  
Louise Cook ◽  
John McBeth ◽  
Terence W O'Neill ◽  
...  
Keyword(s):  
Data Collection ◽  
Knee Osteoarthritis ◽  
Patient Reported Outcomes ◽  
Health Data ◽  
Self Report ◽  
Sensor Data ◽  
Battery Life ◽  
Activity Data ◽  
Technical Problems ◽  
Patient Reported

BACKGROUND Wearables provide opportunities for frequent health data collection and symptom monitoring. The feasibility of using consumer cellular smartwatches to provide information both on symptoms and contemporary sensor data has not yet been investigated. OBJECTIVE This study aimed to investigate the feasibility and acceptability of using cellular smartwatches to capture multiple patient-reported outcomes per day alongside continuous physical activity data over a 3-month period in people living with knee osteoarthritis (OA). METHODS For the KOALAP (Knee OsteoArthritis: Linking Activity and Pain) study, a novel cellular smartwatch app for health data collection was developed. Participants (age ≥50 years; self-diagnosed knee OA) received a smartwatch (Huawei Watch 2) with the KOALAP app. When worn, the watch collected sensor data and prompted participants to self-report outcomes multiple times per day. Participants were invited for a baseline and follow-up interview to discuss their motivations and experiences. Engagement with the watch was measured using daily watch wear time and the percentage completion of watch questions. Interview transcripts were analyzed using grounded thematic analysis. RESULTS A total of 26 people participated in the study. Good use and engagement were observed over 3 months: most participants wore the watch on 75% (68/90) of days or more, for a median of 11 hours. The number of active participants declined over the study duration, especially in the final week. Among participants who remained active, neither watch time nor question completion percentage declined over time. Participants were mainly motivated to learn about their symptoms and enjoyed the self-tracking aspects of the watch. Barriers to full engagement were battery life limitations, technical problems, and unfulfilled expectations of the watch. Participants reported that they would have liked to report symptoms more than 4 or 5 times per day. CONCLUSIONS This study shows that capture of patient-reported outcomes multiple times per day with linked sensor data from a smartwatch is feasible over at least a 3-month period. INTERNATIONAL REGISTERED REPORT RR2-10.2196/10238

scholarly journals Sleep Tracking and Exercise in Patients With Type 2 Diabetes Mellitus (Step-D): Pilot Study to Determine Correlations Between Fitbit Data and Patient-Reported Outcomes (Preprint)

2017 ◽  
Author(s):  
James Weatherall ◽  
Yurek Paprocki ◽  
Theresa M Meyer ◽  
Ian Kudel ◽  
Edward A Witt
Keyword(s):  
Physical Activity ◽  
Diabetes Mellitus ◽  
Type 2 Diabetes ◽  
Type 2 Diabetes Mellitus ◽  
Pilot Study ◽  
Patient Reported Outcomes ◽  
Sleep Problems ◽  
Health Data ◽  
Patient Reported

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.

scholarly journals Capturing PROMs in Oncology Through Consistent Nutrition Risk Identification: An Opportunity to Optimize Care by Embedding Patient Participation Facilitated by eHealth Tools

2021 ◽  
pp. 1-2
Author(s):  
Susana  Couto Irving 
Keyword(s):  
Outcome Measures ◽  
Patient Participation ◽  
Cancer Care ◽  
Clinical Care ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Risk Identification ◽  
Nutrition Status ◽  
Pancreatic Tumors ◽  
Patient Reported

Patient-reported outcome measures obtained via E-Health tools ease the assessment burden and encourage patient participation in cancer care (PaCC Study). <b>Background:</b> E-health based patient-reported outcome measures (PROMs) have the potential to automate early identification of both nutrition status and distress status in cancer patients while facilitating treatment and encouraging patient participation. This cross-sectional study assessed the acceptability, accuracy, and clinical utility of PROMs collected via E-Health tools among patients undergoing treatment for stomach, colorectal, and pancreatic tumors. <b>Results:</b> Eight-nine percent mostly, or completely, agreed that PROMs via tablets should be integrated in routine clinical care. Men were significantly more likely to require help completing the questionnaires than women (inv.OR = 0.51, 95% CI = (0.27, 0.95), p = 0.035). The level of help needed increased by 3% with each 1-year increase in age (inv. OR = 1.03, 95% CI = (1.01, 1.06), p = 0.013). On average, a patient tended to declare weight which was 0.84 kg inferior to their true weight (Bland and Altman 95 % CI = (–3.9, 5.6); SD: 2.41) and a height which was 0.95 cm superior to their true height (Bland and Altman 95 % CI = (−5, 3.1); SD 2.08). Patient-reported nutrition status was significantly associated with the professionally generated assessment (95% CI = (2.27, 4.15), p &#x3c; 0.001). As nutrition status declined, the distress score increased (95%CI = (0.88, 1.68), p &#x3c; 0.001). Of the patients, 48.8% who were both distressed and malnourished requested supportive care to address their problems. <b>Conclusion:</b> Patient-reported assessments utilizing E-health tools are an accurate and efficient method to encourage patient participation in cancer care while simultaneously ensuring that regular assessment of psycho-social and nutritional aspects of care are efficiently integrated in the daily clinical routine.

scholarly journals A PRO-cision Medicine Methods Toolkit to Address the Challenges of Personalizing Cancer Care Using Patient-Reported Outcomes

Medical Care ◽  
2019 ◽  
Vol 57 ◽  
pp. S1-S7 ◽  
Author(s):  
Claire Snyder ◽  
Michael Brundage ◽  
Yonaira M. Rivera ◽  
Albert W. Wu
Keyword(s):  
Cancer Care ◽  
Patient Reported Outcomes ◽  
Patient Reported
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