UK - Quality improvement: patient-reported outcomes and experiences now integrated with clinical data for the first time

2008 ◽  
Vol 21 (1) ◽  
Keyword(s):  
Quality Improvement ◽  
Clinical Data ◽  
Patient Reported Outcomes ◽  
Patient Reported ◽  
First Time

The Development and Initial Findings of A Study of a Prospective Adult Research Cohort with Inflammatory Bowel Disease (SPARC IBD)

2021 ◽  
Author(s):  
Laura E Raffals ◽  
Sumona Saha ◽  
Meenakshi Bewtra ◽  
Cecile Norris ◽  
Angela Dobes ◽  
...  
Keyword(s):  
Inflammatory Bowel Disease ◽  
Clinical Data ◽  
Bowel Disease ◽  
Patient Reported Outcomes ◽  
Data Entry ◽  
The United States ◽  
Predictors Of Response ◽  
Patient Reported ◽  
Inflammatory Bowel ◽  
Reported Data

Abstract Background Clinical and molecular subcategories of inflammatory bowel disease (IBD) are needed to discover mechanisms of disease and predictors of response and disease relapse. We aimed to develop a study of a prospective adult research cohort with IBD (SPARC IBD) including longitudinal clinical and patient-reported data and biosamples. Methods We established a cohort of adults with IBD from a geographically diverse sample of patients across the United States with standardized data and biosample collection methods and sample processing techniques. At enrollment and at time of lower endoscopy, patient-reported outcomes (PRO), clinical data, and endoscopy scoring indices are captured. Patient-reported outcomes are collected quarterly. The quality of clinical data entry after the first year of the study was assessed. Results Through January 2020, 3029 patients were enrolled in SPARC, of whom 66.1% have Crohn’s disease (CD), 32.2% have ulcerative colitis (UC), and 1.7% have IBD-unclassified. Among patients enrolled, 990 underwent colonoscopy. Remission rates were 63.9% in the CD group and 80.6% in the UC group. In the quality study of the cohort, there was 96% agreement on year of diagnosis and 97% agreement on IBD subtype. There was 91% overall agreement describing UC extent as left-sided vs extensive or pancolitis. The overall agreement for CD behavior was 83%. Conclusion The SPARC IBD is an ongoing large prospective cohort with longitudinal standardized collection of clinical data, biosamples, and PROs representing a unique resource aimed to drive discovery of clinical and molecular markers that will meet the needs of precision medicine in IBD.

Developing symptom management quality improvement reports with data from a registry-based patient reported outcomes (PRO) collection method.

2014 ◽  
Vol 32 (30_suppl) ◽  
pp. 180-180
Author(s):  
Tenbroeck Smith ◽  
Kathleen Castro ◽  
Alyssa Troeschel ◽  
Neeraj K. Arora ◽  
Kevin Stein ◽  
...  
Keyword(s):  
Quality Improvement ◽  
Health Professional ◽  
Symptom Management ◽  
Patient Reported Outcomes ◽  
Standards Of Care ◽  
Cancer Type ◽  
Cancer Centers ◽  
Quality Reporting ◽  
Management Quality ◽  
Patient Reported

180 Background: Symptom management is critical to quality cancer care, affecting treatment completion, functioning and quality of life. We describe the use of the Commission on Cancer’s Rapid Quality Reporting System (RQRS) to ascertain cases for PRO collection, identify key PRO quality indicators, and provide actionable symptom management quality improvement (QI) reports to community cancer centers (CCC). Methods: The Patient Reported Outcomes Symptoms & Side Effects Study used RQRS to sample patients (pt) 4-12 months from diagnosis with locoregional breast/colon from 17 National Cancer Institute Community Cancer Centers Program centers. Surveys were mailed with web option. Pts were asked if they talked to a health professional about pain (Talk about) and, separately, if the health professional gave advice about what to do if pain started, got worse, or came back (Advice). Similar questions were asked about fatigue and emotional distress (ED). QI reports were designed with CCC staff feedback and produced for each CCC providing crude and case-mix adjusted CCC-specific rates, and study-wide rates. Direct standardization methods were used to adjust CCC-specific rates for cancer type and education. Results: 2,487 eligible participants responded (RR=61%). This table shows overall study-wide estimates and the range of adjusted CCC-specific estimates for six key indicators. (See Table.) Conclusions: This pilot study shows the registry-based method for PRO collection was successful and has potential for wider dissemination. Study-wide, 20-45% of pts did not report discussing or getting advice about three common symptoms from their healthcare team. CCCs varied significantly on these indicators, suggesting room for improvement. Quality reports were well received by hospital staff, who report sharing them with clinicians, navigators and cancer committees. CCC-specific reports may promote efforts to improve care through professional/patient education and applying standards of care. [Table: see text]

scholarly journals OnabotulinumtoxinA for the treatment of idiopathic overactive bladder is effective and safe for repeated use

2017 ◽  
Vol 11 (5) ◽  
pp. 179 ◽  
Author(s):  
Kevin Carlson ◽  
Andrea Civitarese ◽  
Richard Baverstock
Keyword(s):  
Overactive Bladder ◽  
Patient Reported Outcomes ◽  
Efficacy And Safety ◽  
Clinical Registry ◽  
Safety Measures ◽  
Patient Reported ◽  
Before And After ◽  
Bladder Symptoms ◽  
Repeated Use ◽  
First Time

Introduction: The objective of this study was to compare efficacy and safety outcomes between patients receiving onabotulinumtoxinA (OnabotA) for the first time and those receiving a repeat injection.Methods: Data collected before and after OnabotA injection were extracted from a clinical registry. Patients were classified into either first or repeat injection subgroups. Efficacy was measured by the change in use of oral bladder medications, the number of voids per day or night, the frequency of urinary incontinence (UI) episodes, and patient-reported outcomes. Safety was measured by the number of self-reported complications. Differences in safety measures between the subgroups were tested.Results: The analysis included complete data from 81 patients; 30 (37%) receiving OnabotA for the first time, 51 (63%) receiving a repeat injection. Both subgroups reported significant reductions in the use of anticholinergics, more tolerable bladder symptoms, and improvements in patient-reported outcomes. Dry rates were similarly high in both groups (50% and 43%, respectively). There were no statistically significant differences between the subgroups in terms of their safety outcomes.Conclusions: OnabotA is equally as efficacious and safe for patients with overactive bladder receiving a repeat injection as it is for those receiving their first injection.

scholarly journals Using Electronic Data Collection Platforms to Assess Complementary and Integrative Health Patient-Reported Outcomes: Feasibility Project (Preprint)

2019 ◽  
Author(s):  
Jolie N Haun ◽  
Amy C Alman ◽  
Christine Melillo ◽  
Maisha Standifer ◽  
Julie McMahon-Grenz ◽  
...  
Keyword(s):  
Quality Improvement ◽  
Patient Reported Outcomes ◽  
Primary Care Providers ◽  
Quality Improvement Project ◽  
Care Providers ◽  
Secure Messaging ◽  
Web Based ◽  
Improvement Project ◽  
Integrative Health ◽  
Patient Reported

BACKGROUND The Veteran Administration (VA) Office of Patient-Centered Care and Cultural Transformation is invested in improving veteran health through a whole-person approach while taking advantage of the electronic resources suite available through the VA. Currently, there is no standardized process to collect and integrate electronic patient-reported outcomes (ePROs) of complementary and integrative health (CIH) into clinical care using a web-based survey platform. This quality improvement project enrolled veterans attending CIH appointments within a VA facility and used web-based technologies to collect ePROs. OBJECTIVE This study aimed to (1) determine a practical process for collecting ePROs using patient email services and a web-based survey platform and (2) conduct analyses of survey data using repeated measures to estimate the effects of CIH on patient outcomes. METHODS In total, 100 veterans from one VA facility, comprising 11 cohorts, agreed to participate. The VA patient email services (Secure Messaging) were used to manually send links to a 16-item web-based survey stored on a secure web-based survey storage platform (Qualtrics). Each survey included questions about patient outcomes from CIH programs. Each cohort was sent survey links via Secure Messaging (SM) at 6 time points: weeks 1 through 4, week 8, and week 12. Process evaluation interviews were conducted with five primary care providers to assess barriers and facilitators to using the patient-reported outcome survey in usual care. RESULTS This quality improvement project demonstrated the usability of SM and Qualtrics for ePRO collection. However, SM for ePROs was labor intensive for providers. Descriptive statistics on health competence (2-item Perceived Health Competence Scale), physical and mental health (Patient-Reported Outcomes Measurement Information System Global-10), and stress (4-item Perceived Stress Scale) indicated that scores did not significantly change over time. Survey response rates varied (18/100, 18.0%-42/100, 42.0%) across each of the 12 weekly survey periods. In total, 74 of 100 participants provided ≥1 survey, and 90% (66/74) were female. The majority, 62% (33/53) of participants, who reported the use of any CIH modality, reported the use of two or more unique modalities. Primary care providers highlighted specific challenges with SM and offered solutions regarding staff involvement in survey implementation. CONCLUSIONS This quality improvement project informs our understanding of the processes currently available for using SM and web-based data platforms to collect ePROs. The study results indicate that although it is possible to use SM and web-based survey platforms for ePROs, automating scheduled administration will be necessary to reduce provider burden. The lack of significant change in ePROs may be due to standard measures taking a biomedical approach to wellness. Future work should focus on identifying ideal ePRO processes that would include standardized, whole-person measures of wellness.

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