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.

The Use of Patient-reported Outcomes at an Individual Level – Benefits and Challenges

2010 ◽  
Vol 06 (01) ◽  
pp. 19
Author(s):  
Agnes Czimbalmos ◽  
Andrew Bottomley ◽  
◽  
Keyword(s):  
Patient Reported Outcomes ◽  
Clinical Care ◽  
Healthcare Services ◽  
Individual Level ◽  
Patient Health Status ◽  
Hrqol Data ◽  
Patient Reported ◽  
Patient Health ◽  
Related Quality ◽  
Health Related

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.

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 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.

scholarly journals Patient Experience in Home Respiratory Therapies: Where We Are and Where to Go

2019 ◽  
Vol 8 (4) ◽  
pp. 555 ◽  
Author(s):  
Cátia Caneiras ◽  
Cristina Jácome ◽  
Sagrario Mayoralas-Alises ◽  
José Ramon Calvo ◽  
João Almeida Fonseca ◽  
...  
Keyword(s):  
Clinical Research ◽  
Patient Experience ◽  
Clinical Care ◽  
Research Priorities ◽  
Specific Patient ◽  
Quality Healthcare ◽  
Body Of Knowledge ◽  
Number Of Patients ◽  
Patient Reported ◽  
System Sustainability

The increasing number of patients receiving home respiratory therapy (HRT) is imposing a major impact on routine clinical care and healthcare system sustainability. The current challenge is to continue to guarantee access to HRT while maintaining the quality of care. The patient experience is a cornerstone of high-quality healthcare and an emergent area of clinical research. This review approaches the assessment of the patient experience in the context of HRT while highlighting the European contribution to this body of knowledge. This review demonstrates that research in this area is still limited, with no example of a prescription model that incorporates the patient experience as an outcome and no specific patient-reported experience measures (PREMs) available. This work also shows that Europe is leading the research on HRT provision. The development of a specific PREM and the integration of PREMs into the assessment of prescription models should be clinical research priorities in the next several years.

scholarly journals Blood Pressure Trajectories Across the Life Course

2021 ◽  
Vol 34 (3) ◽  
pp. 234-241
Author(s):  
Norrina B Allen ◽  
Sadiya S Khan
Keyword(s):  
Blood Pressure ◽  
Measurement Errors ◽  
Clinical Care ◽  
Population Level ◽  
Cumulative Exposure ◽  
Older Adulthood ◽  
Individual Level ◽  
The Life Course ◽  
Level Group ◽  
Improve Health

Abstract High blood pressure (BP) is a strong modifiable risk factor for cardiovascular disease (CVD). Longitudinal BP patterns themselves may reflect the burden of risk and vascular damage due to prolonged cumulative exposure to high BP levels. Current studies have begun to characterize BP patterns as a trajectory over an individual’s lifetime. These BP trajectories take into account the absolute BP levels as well as the slope of BP changes throughout the lifetime thus incorporating longitudinal BP patterns into a single metric. Methodologic issues that need to be considered when examining BP trajectories include individual-level vs. population-level group-based modeling, use of distinct but complementary BP metrics (systolic, diastolic, mean arterial, mid, and pulse pressure), and potential for measurement errors related to varied settings, devices, and number of readings utilized. There appear to be very specific developmental periods during which divergent BP trajectories may emerge, specifically adolescence, the pregnancy period, and older adulthood. Lifetime BP trajectories are impacted by both individual-level and community-level factors and have been associated with incident hypertension, multimorbidity (CVD, renal disease, cognitive impairment), and overall life expectancy. Key unanswered questions remain around the additive predictive value of BP trajectories, intergenerational contributions to BP patterns (in utero BP exposure), and potential genetic drivers of BP patterns. The next phase in understanding BP trajectories needs to focus on how best to incorporate this knowledge into clinical care to reduce the burden of hypertensive-related outcomes and improve health equity.

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 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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