scholarly journals Design and feasibility of integrating personalized PRO dashboards into prostate cancer care

2015 ◽  
Vol 23 (1) ◽  
pp. 38-47 ◽  
Author(s):  
Andrea L Hartzler ◽  
Jason P Izard ◽  
Bruce L Dalkin ◽  
Sean P Mikles ◽  
John L Gore
Keyword(s):  
Prostate Cancer ◽  
Focus Groups ◽  
Cancer Care ◽  
Line Graphs ◽  
Patient Centered ◽  
Human Centered Design ◽  
Patient Reported ◽  
Related Quality ◽  
Centered Care ◽  
Health Related

Abstract Objective Patient-reported outcomes (PROs) are a valued source of health information, but prior work focuses largely on data capture without guidance on visual displays that promote effective PRO use in patient-centered care. We engaged patients, providers, and design experts in human-centered design of “PRO dashboards” that illustrate trends in health-related quality of life (HRQOL) reported by patients following prostate cancer treatment. Materials and Methods We designed and assessed the feasibility of integrating dashboards into care in 3 steps: (1) capture PRO needs of patients and providers through focus groups and interviews; (2) iteratively build and refine a prototype dashboard; and (3) pilot test dashboards with patients and their provider during follow-up care. Results Focus groups ( n = 60 patients) prioritized needs for dashboards that compared longitudinal trends in patients’ HRQOL with “men like me.” Of the candidate dashboard designs, 50 patients and 50 providers rated pictographs less helpful than bar charts, line graphs, or tables ( P < .001) and preferred bar charts and line graphs most. Given these needs and the design recommendations from our Patient Advisory Board ( n = 7) and design experts ( n = 7), we built and refined a prototype that charts patients’ HRQOL compared with age- and treatment-matched patients in personalized dashboards. Pilot testing dashboard use ( n = 12 patients) improved compliance with quality indicators for prostate cancer care ( P < .01). Conclusion PRO dashboards are a promising approach for integrating patient-generated data into prostate cancer care. Informed by human-centered design principles, this work establishes guidance on dashboard content, tailoring, and clinical use that patients and providers find meaningful.

scholarly journals Using Patient-Reported Measures to Improve Outcomes in Kidney Disease

2021 ◽  
pp. 1-6
Author(s):  
Sofia Mclaren ◽  
Manisha Jhamb ◽  
Mark Unruh
Keyword(s):  
Patient Centered Care ◽  
High Risk Population ◽  
Health Issues ◽  
Patient Centered ◽  
Patient Reported ◽  
Related Quality ◽  
Centered Care ◽  
Health Related ◽  
Poor Outcomes ◽  
Patient Reported Measures

Patients with CKD and ESRD are vulnerable to increased mortality rates and other poor outcomes. Among those with ESRD, their health-related quality of life (HRQOL) is shown little to no improvement as they undergo treatments such as dialysis and providers concurrently manage other health issues that complicate their already vulnerable state. This review synthesizes evidence demonstrating that a focus on measuring and monitoring patient-reported outcomes (PRO) such as pain and depression can improve HRQOL. Patient-centered care has the potential to create an efficient way for clinicians to address specific challenges facing patients. While there is an emerging literature assessing the use of PROs in kidney research, by examining relevant research in other disciplines it is possible to generate better ways to use PROs in this high-risk population. Electronic health records as well as various other electronic methods of communication between the clinician and patient may serve to accelerate the trajectory toward patient-centered care using PROs.

scholarly journals Patient-reported outcome measures as a new application in the Swedish Renal Registry: health-related quality of life through RAND-36

2019 ◽  
Author(s):  
Agneta A Pagels ◽  
Maria Stendahl ◽  
Marie Evans
Keyword(s):  
Age Groups ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Age Group ◽  
Patient Reported ◽  
Related Quality ◽  
Centered Care ◽  
Health Related ◽  
Impaired Health

AbstractBackgroundAlthough patient-reported outcome measures (PROMs) are gaining increased interest in developing health care quality and are a useful tool in person-centered care, their use in routine care is still limited. The aim of this study is to describe the implementation and initial results of PROMs via the Swedish Renal Registry (SRR) on a national level.MethodsAfter testing and piloting the electronic PROM application, nationwide measures were carried out in 2017 for completing the RAND-36 questionnaire online or by paper in a wide range of chronic kidney disease (CKD) patients (Stages 3–5, dialysis and transplantation) through the SRR. Cross-sectional results during the first year were analyzed by descriptive statistics and stratified by treatment modality.ResultsA total of 1378 patients from 26 of 68 renal units (39%) completed the questionnaire. The response rate for all participating hemodialysis units was 38.9%. The CKD patients had an impaired health profile compared with a Swedish general population, especially regarding physical functions and assessed general health (GH). Transplanted patients had the highest scores, whereas patients on dialysis treatment had the lowest scores. The youngest age group assessed their physical function higher and experienced fewer physical limitations and less bodily pain than the other age groups but assessed their GH and vitality (VT) relatively low. The oldest age group demonstrated the lowest health profile but rated their mental health higher than the other age groups. The older the patient, the smaller the difference compared with persons of the same age in the general population.ConclusionsNationwide, routine collection of PROMs is feasible in Sweden. However, greater emphasis is needed on motivating clinical staff to embrace the tool and its possibilities in executing person-centered care. CKD patients demonstrate impaired health-related quality of life, especially regarding limitations related to physical problems, GH and VT/energy/fatigue.

Using patient-reported outcomes for technology assessment (TA) and quality improvement (QI) in prostate cancer brachytherapy

2007 ◽  
Vol 25 (18_suppl) ◽  
pp. 5139-5139
Author(s):  
R. C. Chen ◽  
A. L. Zietman ◽  
A. V. D’Amico ◽  
I. Kaplan ◽  
J. A. Clark ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Patient Reported Outcomes ◽  
Standard Technique ◽  
Bowel Function ◽  
Ultrasound Guided ◽  
Score Change ◽  
Patient Centered ◽  
Symptom Index ◽  
Patient Reported ◽  
Centered Care

5139 Background: Despite their sensitivity, validity and increasing prominence in clinical reports, patient-reported outcomes have played little role in TA and QI. We used our validated disease-specific instrument to compare outcomes after alternative brachytherapy techniques for early prostate cancer, both experimental vs. standard technique and between implementations of the standard technique. Methods: One radiation oncologist performed experimental MRI-guided brachytherapy (MRB) on protocol and 2 performed standard ultrasound-guided brachytherapy (USB1 and USB2). We prospectively measured urinary and bowel function of 237 men before brachytherapy and at 1, 3 and 12 months after treatment. Each symptom index is scored from 0 (no dysfunction) to 100 (maximum dysfunction). We report outcomes both as mean change in scale score from baseline and as the distribution of functional categories, grouped by pretreatment functional level: normal, intermediate, and poor (severe dysfunction). Results: Among all patients, MRB caused less urinary obstruction/irritation at 3 months after treatment than ultrasound-guided brachytherapy (mean score change 9.2 vs. 23.6, p<.001). Significant differences in outcome also existed between USB1 and USB2 (19.5 vs. 29.0, p=.01). When baseline function was normal, 15% of MRB patients reported severe 3-month dysfunction, compared to 50% of USB1 and 71% of USB2 patients ( Table ). Outcomes of patients with pretreatment urinary dysfunction differed less. Preliminary results documenting inferior outcomes prompted modification of the USB2 brachytherapy technique, producing a trend toward improved outcomes in small patient numbers (mean score change: 30.4 vs. 22.8, p=.25). Bowel symptom outcomes varied less. Conclusions: Patient-reported outcomes can provide sensitive and valid indicators of TA and QI that may contribute to optimal patient-centered care. [Table: see text] No significant financial relationships to disclose.

PROeverywhere: Bridging the implementation gap of patient-reported outcomes with a mobile app.

2018 ◽  
Vol 36 (30_suppl) ◽  
pp. 203-203
Author(s):  
Kin Wai (Tony) Hung ◽  
Natasha Banerjee ◽  
Jeffrey M. Miller
Keyword(s):  
Cancer Care ◽  
Patient Reported Outcome ◽  
Mobile App ◽  
Patient Centered ◽  
Development Environment ◽  
Implementation Challenges ◽  
Memory Problems ◽  
Longitudinal Tracking ◽  
Patient Reported ◽  
Centered Care

203 Background: Patient reported outcome (PRO) data are critical for informing patient-centered care and have been shown to enhance our ability to communicate with patients, to control their symptoms, and to impact their survival. However, PRO data are not commonly collected in routine cancer care due to implementation challenges such as cost, technological rigidity of existing electronic health records, and misalignment of stakeholders’ incentives. Methods: In an effort to bridge the unmet needs of PRO collection and integration into routine cancer care, we aim to develop an effective, scalable, and sustainable symptom monitoring and management system that can be accessible worldwide. The system was developed using Xcode, the integrative development environment of Apple Inc., with the Swift programing language. Results: On Nov 28th, 2017, we launched a free, mobile PRO application on the Apple App Store – PROeverywhere. PROeverywhere is designed for reporting twelve common symptoms from the National Cancer Institute’s Common Terminology Criteria for Adverse Events. These symptoms include pain, fatigue, nausea/vomiting, appetite loss, diarrhea, constipation, shortness of breath, depression, anxiety, insomnia, memory problems, and neuropathy. Symptoms are reported in a 5-point scale – no symptom, mild, moderate, severe, and disabling. PROeverywhere has the functions to record symptoms, summarize the reporting in printout, and automatically store and analyze the input into graphical interpretations. Updates to PROeverywhere will be released in July 2018, with additional features that include longitudinal tracking dashboard, emoji scale, Spanish questionnaire, and “social networking” capability to connect users with potential to allow remote, real-time, reporting and monitoring. PROeverywhere is downloadable worldwide and securely powered by Google Firebase. Conclusions: PROeverywhere is developed to enable PRO data to be shared more easily and regularly in routine cancer care. Implementation of this free mobile application would allow for consistency in collection of PRO data with the potential to impact patient outcomes globally.

Health-related quality of life (HRQoL) patient-reported outcomes (PROs) and survival (OS) in metastatic castration-resistant prostate cancer (mCRPC) patients (pts).

2020 ◽  
Vol 38 (6_suppl) ◽  
pp. 53-53
Author(s):  
Lorente David ◽  
Rebeca Lozano ◽  
Guillermo de Velasco ◽  
Nuria Romero-Laorden ◽  
Elena Castro ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Cox Regression ◽  
Well Being ◽  
Castration Resistant Prostate Cancer ◽  
Kaplan Meier ◽  
Patient Reported ◽  
Trial Outcome Index ◽  
Related Quality ◽  
Health Related ◽  
Outcome Index

53 Background: HRQoL is a relevant endpoint in trials in advanced prostate cancer. An association between HRQoL and OS has been reported. The Functional Assessment of Cancer Therapy-Prostate (FACT-P) is a validated HRQoL PRO in mCRPC. Methods: We evaluated the association between FACT-P and OS in the COU-301 and COU-302 trials (abiraterone vs placebo in mCRPC pts). FACT-P scores, sub-scores (physical (PWB), emotional (EWB), functional (FWB), social (SWB) well-being, prostate cancer subscale (PCS) FACT-G and the Trial Outcome Index (TOI) were calculated. A decrease in 3 (PWB, EWB, SWB, FWB, PCS), 9 (FACT-G, TOI) or 10 (FACT-Total) points after 3 cycles was considered clinically relevant. The association between FACT-P and OS was evaluated with Kaplan-Meier, Cox-regression models and c-indices. Results: 2,177 pts (COU-301: 1,121 /COU-302: 1,056) had valid baseline (BL) FACT-P scores. Mean BL score was 106.6 (COU-301) and 122.3 (COU-302). BL total scores were associated with OS in both COU-AA-301 (p<0.001) and COU-302 (p<0.001), independent of treatment. All FACT-P sub-scores except SWB were associated with OS (Table). A decrease in FACTP scores was associated with decreased OS in COU-301 (19.6 vs 14.2m; HR: 1.8; p<0.001) and COU-302 (34.4 vs 27.7m; HR: 1.3; p=0.009) datasets. Conclusions: BL FACTP scores (except SWB subscale) are significantly associated with outcome. Early declines in HRQoL can be observed and are associated with worse outcome. Prospective evaluation of the significance of changes in HRQoL is needed. YODA Project 2018-3745.[Table: see text]

scholarly journals Patient-Centered Approach to Develop the Patient’s Preferences for Prostate Cancer Care (PreProCare) Tool

2019 ◽  
Vol 4 (1) ◽  
pp. 238146831985537 ◽  
Author(s):  
Ravishankar Jayadevappa ◽  
Sumedha Chhatre ◽  
Joseph J. Gallo ◽  
S. Bruce Malkowicz ◽  
J. Sanford Schwartz ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Decision Making ◽  
Focus Groups ◽  
Cancer Patients ◽  
Cancer Care ◽  
Assessment Tool ◽  
Preference Assessment ◽  
Localized Prostate Cancer ◽  
Advisory Group ◽  
Patient Centered

Objectives. To describe the development of our Patient Preferences for Prostate Cancer Care (PreProCare) tool to aid patient-centered treatment decision among localized prostate cancer patients. Methods. We incorporated patient and provider experiences to develop a patient preference elicitation tool using adaptive conjoint analysis. Our patient-centered approach used systematic literature review, semistructured patient interviews, and provider focus groups to determine the treatment attributes most important for decision making. The resulting computer-based PreProCare tool was pilot tested in a clinical setting. Results. A systematic review of 56 articles published between 1995 and 2015 yielded survival, cancer recurrence, side effects, and complications as attributes of treatment options. We conducted one-on-one interviews with 50 prostate cancer survivors and 5 focus groups of providers. Patients reported anxiety, depression, treatment specifics, and caregiver burden as important for decision making. Providers identified clinical characteristics as important attribute. Input from stakeholders’ advisory group, physicians, and researchers helped finalize 15 attributes for our PreProCare preference assessment tool. Conclusion. The PreProCare tool was developed using a patient-centered approach and may be a feasible and acceptable preference clarification intervention for localized prostate cancer patients. The PreProCare tool may translate into higher participant engagement and self-efficacy, consistent with patients’ personal values.

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