An international patient-centered outcome measurement set for colorectal cancer.

2017 ◽  
Vol 35 (4_suppl) ◽  
pp. 753-753
Author(s):  
Harvey J. Mamon ◽  
Jessica A. Zerillo ◽  
Maartje Gisele Schouwenburg ◽  
Annelotte van Bommel ◽  
Caleb Stowell ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Focus Group ◽  
Clinical Outcomes ◽  
Working Group ◽  
Outcome Measurement ◽  
Clinical Expertise ◽  
Patient Centered ◽  
Patient Reported ◽  
Acute Complications

753 Background: While there are tools to measure outcomes relevant to patients with colorectal cancer, none is universally accepted and none incorporates components of long-term clinical outcomes, acute complications, and patient-reported outcomes (PROs). Methods: The International Consortium for Health Outcomes Measurement convened an international multidisciplinary working group to develop a comprehensive patient-centered outcome measurement set for patients with all stages of colorectal cancer. The working group utilized a literature review, patient focus group and their own clinical expertise to reach consensus on outcomes and case mix factors through a modified Delphi process. Measurement tools were selected by International Society of Quality of Life Research standards. The final list of PROs was validated through a patient survey. Results: The 29 members of the working group included patient representatives and palliative care, nursing, pathology, medical oncology, colorectal surgery and radiation oncology specialists from academic and nonacademic practices in Europe, Australia, Asia and the USA. The international focus group included 11 patients with colorectal cancer treated with palliative and curative intents. The working group defined four clinical outcomes applicable to all and eight specific to subgroups, such as presence of ostomy for patients with rectal cancer and hospital admission in the last 30 days of life for patients with advanced disease. An algorithm for documenting acute complications was developed. The working group defined 11 PROs applicable to all and eight specific to subgroups, such as erectile dysfunction for patients who received radiotherapy/surgery and neuropathy for those who received chemotherapy. 276 colorectal cancer patients completed the validation survey. Conclusions: Through use of extensive patient input, the international multidisciplinary group developed a patient-centered outcome measurement set incorporating clinical outcomes, acute complications and PROs for patients with colorectal cancer. This comprehensive measurement set allows for standardized international comparison on quality of care outcomes and will be revised annually.

scholarly journals Patient-Reported Quality of Supportive Care Among Patients With Colorectal Cancer in the Veterans Affairs Health Care System

2014 ◽  
Vol 32 (8) ◽  
pp. 809-815 ◽  
Author(s):  
Michelle van Ryn ◽  
Sean M. Phelan ◽  
Neeraj K. Arora ◽  
David A. Haggstrom ◽  
George L. Jackson ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Supportive Care ◽  
Cancer Care ◽  
Quality Measurement ◽  
Veterans Affairs ◽  
Health Administration ◽  
Patient Centered ◽  
Patient Reported ◽  
The Impact

Purpose High-quality supportive care is an essential component of comprehensive cancer care. We implemented a patient-centered quality of cancer care survey to examine and identify predictors of quality of supportive care for bowel problems, pain, fatigue, depression, and other symptoms among 1,109 patients with colorectal cancer. Patients and Methods Patients with new diagnosis of colorectal cancer at any Veterans Health Administration medical center nationwide in 2008 were ascertained through the Veterans Affairs Central Cancer Registry and sent questionnaires assessing a variety of aspects of patient-centered cancer care. We received questionnaires from 63% of eligible patients (N = 1,109). Descriptive analyses characterizing patient experiences with supportive care and binary logistic regression models were used to examine predictors of receipt of help wanted for each of the five symptom categories. Results There were significant gaps in patient-centered quality of supportive care, beginning with symptom assessment. In multivariable modeling, the impact of clinical factors and patient race on odds of receiving wanted help varied by symptom. Coordination of care quality predicted receipt of wanted help for all symptoms, independent of patient demographic or clinical characteristics. Conclusion This study revealed substantial gaps in patient-centered quality of care, difficult to characterize through quality measurement relying on medical record review alone. It established the feasibility of collecting patient-reported quality measures. Improving quality measurement of supportive care and implementing patient-reported outcomes in quality-measurement systems are high priorities for improving the processes and outcomes of care for patients with cancer.

scholarly journals Patient-Reported Outcomes Measures: An Introduction for Clinicians

2019 ◽  
Vol 4 (1) ◽  
pp. 8-15 ◽  
Author(s):  
Kathryn Yorkston ◽  
Carolyn Baylor
Keyword(s):  
Instrument Development ◽  
Patient Reported Outcomes ◽  
Outcome Measurement ◽  
Communication Disorders ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Patient Centered ◽  
Outcomes Measures ◽  
Patient Reported ◽  
Measurement Tools

Patient-reported outcome measures contain information that comes directly from the patient without interpretation by anyone else. These measures are an important part of a clinicians' arsenal of assessment approaches and are critical in the development of patient-centered approaches to intervention. In this introduction to patient-reported outcome measurement tools, a history is provided of this approach to measurement and its place within the context of clinical research and practice. The process of instrument development and application will be reviewed, along with examples of measurement tools from the field of neurological communication disorders. This introduction is supplemented by references that provide interested readers with more detailed information.

scholarly journals P1062EXPANDED DIALYSIS (HDX): IS THERE AN IMPACT ON PATIENT REPORTED SYMPTOM?

2020 ◽  
Vol 35 (Supplement_3) ◽  
Author(s):  
Jarrin Penny ◽  
Fabio R Salerno ◽  
Lisa Hur ◽  
Christopher McIntyre
Keyword(s):  
Quality Of Life ◽  
Clinical Outcomes ◽  
Symptom Burden ◽  
Well Being ◽  
Response To Therapy ◽  
High Flux ◽  
Patient Reported ◽  
Dialysis Membranes ◽  
The Impact

Abstract Background and Aims High flux dialysis membranes sufficiently remove smaller sized uremic toxins however, the accumulation and retention of larger middle molecular weight toxins, which are associated with chronic inflammation, cardiovascular disease and suboptimal outcomes are poorly cleared. The recent advent of medium-cut-off dialysis membranes, labelled “expanded dialysis” (HDx) are permeable to molecules of larger size responsible for poor clinical outcomes. However, it remains unclear if HDx can directly impact the symptoms associated with hemodialysis (HD). Symptom burden plays a significant role in quality of life (QOL) and mortality rates in the HD population. The London Evaluation of Illness (LEVIL), an application-based platform has been developed to measure patient reported outcomes (PROM). In comparison to cross-sectional PROM’s, LEVIL more accurately represents the fluctuations in daily symptoms and the impact of intervention. LEVIL evaluates general well-being, energy, sleep, appetite, pain and breathing, all of which are outcomes of interest on symptom burden in chronic kidney disease. Our aim was to determine if HDx therapy had any effect on symtoms/QOL domains using LEVIL. Method 28 patients from two dialysis centers in London Ontario were consented to participate. Patients were required to be over 18 years of age and on conventional thrice weekly maintenance HD for at least three months. 23 participants completed study and analyzed (five lost for various reasons). Baseline (BL) symptom characteristics were obtained while using high flux membrane for two weeks. Symptoms continued to be measured throughout the 12 weeks of HDx therapy two-three times weekly using LEVIL. Laboratory biomarkers including beta-2 microglobulin and free-light chains were collected at baseline and after 12 weeks of HDx therapy. Results Patients were stratified into tertiles (high/middle/low) using mean values of BL symptoms scores in each domain (wellbeing, energy, sleep, appetite, pain, breathing). Those in the high BL group were labeled as “control”. Low and middle BL measures were further stratified into responders vs. non-responders (responders were considered to have a 50% increase in any symptom domain by ≥50%). Of those domains which responded to HDx, 76% also had low BL scores with 27% having middle BL scores. General wellbeing, energy and sleep were domains with the greatest response reaching statistical significance after eight weeks of therapy. HDx had limited effect on appetite, pain and breathing. Although stratification was per domain, overall, 74% of the population studied did respond in at least one domain, with some responding in as many as five. Conclusion HDx using Theranova (Baxter) shows the most benefit in domains with low BL measures. Additionally, not everyone who had low BL scores responded after 12 weeks of therapy, leaving us to question whether HDx may have a latent effect in some individuals/populations. Those who had no response to therapy in certain domains also had greater baseline quality of life respectively. This information may assist in decision making/rationale for the utilization and implementation of such therapy. Although more work is required to further stratify symptoms in relation to demographic/biochemical finding and clinical outcomes. It is evident that HDx improves patient reported symptoms and QOL.

scholarly journals P-131 An international patient-centered outcome measurement set for colorectal cancer

2016 ◽  
Vol 27 ◽  
pp. ii38
Author(s):  
J. Zerillo ◽  
M. Schouwenburg ◽  
A. van Bommel ◽  
C. Stowell ◽  
C. Van de Velde ◽  
...  
Keyword(s):  
Colorectal Cancer ◽  
Outcome Measurement ◽  
Patient Centered

scholarly journals Quality of life in a real-world study of patients with metastatic colorectal cancer treated with trifluridine/tipiracil

2020 ◽  
Vol 27 (5) ◽  
Author(s):  
W.Y. Cheung ◽  
P. Kavan ◽  
A. Dolley
Keyword(s):  
Quality Of Life ◽  
Colorectal Cancer ◽  
Metastatic Colorectal Cancer ◽  
Real World ◽  
Symptom Burden ◽  
Physical Symptom ◽  
Activity Impairment ◽  
Cross Sectional ◽  
Patient Reported

Background Quality of life (qol) is important for oncology patients, especially for those with late-stage disease. The present study was initiated to address the lack of published prospective data about the qol benefits of trifluri­dine/tipiracil (tfd/tpi) compared with best supportive care (bsc) in patients with refractory metastatic colorectal cancer (mcrc). Methods This prospective, cross-sectional, non-interventional study used multidimensional validated scales to evaluate patient-reported qol in two study cohorts of patients and also to measure differences in mcrc-related symptoms and pain in a real-world clinical setting. Results Our findings demonstrate that patients with refractory mcrc report better overall qol when treated with tfd/ tpi than with bsc alone. In that population, statistically significant differences in mean qol measures favoured tfd/tpi over bsc for physical symptom distress, psychological distress, activity impairment, overall valuation of life, and symptomatology. The overall better qol for patients receiving tfd/tpi implies that treatment was well tolerated and was associated with a lower symptom burden. No significant differences for pain were observed between the groups. Conclusions This study suggests that tfd/tpi is a well-tolerated option for the treatment of patients with refractory mcrc, showcasing the value of capturing real-world qol data in routine clinical practice.

scholarly journals Patients’ Experiences With Staphylococcus aureus and Gram-negative Bacterial Bloodstream Infections: A Qualitative Descriptive Study and Concept Elicitation Phase To Inform Measurement of Patient-reported Quality of Life

2020 ◽  
Author(s):  
Heather A King ◽  
Sarah B Doernberg ◽  
Julie Miller ◽  
Kiran Grover ◽  
Megan Oakes ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Staphylococcus Aureus ◽  
Bloodstream Infection ◽  
Bloodstream Infections ◽  
Patient Centered ◽  
Gram Negative ◽  
Concept Elicitation ◽  
Patient Reported ◽  
Disease Specific

Abstract Background Although Staphylococcus aureus and gram-negative bacterial bloodstream infections (SAB/GNB) cause substantial morbidity, little is known regarding patient perceptions’ of their impact on quality of life (QOL). Guidance for assessing QOL and disease-specific measures are lacking. We conducted a descriptive qualitative study to gain an in-depth understanding of patients’ experiences with SAB/GNB and concept elicitation phase to inform a patient-reported QOL outcome measure. Methods We conducted prospective one-time, in-depth, semi-structured, individual, qualitative telephone interviews 6– 8 weeks following bloodstream infection with either SAB or GNB. Patients were enrolled in an institutional registry (tertiary academic medical center) for SAB or GNB. Interviews were audio-recorded, transcribed, and coded. Directed content analysis identified a priori and emergent themes. Theme matrix techniques were used to facilitate analysis and presentation. Results Interviews were completed with 30 patients with SAB and 31 patients with GNB. Most patients were at or near the end of intravenous antibiotic treatment when interviewed. We identified 3 primary high-level concepts: impact on QOL domains, time as a critical index, and sources of variability across patients. Across both types of bloodstream infection, the QOL domains most impacted were physical and functional, which was particularly evident among patients with SAB. Conclusions SAB/GNB impact QOL among survivors. In particular, SAB had major impacts on multiple QOL domains. A combination of existing, generic measures that are purposefully selected and disease-specific items, if necessary, could best capture these impacts. Engaging patients as stakeholders and obtaining their feedback is crucial to conducting patient-centered clinical trials and providing patient-centered care.

Appraisal of Candidate Instruments for Assessment of the Physical Function Domain in Patients with Psoriatic Arthritis

2020 ◽  
Vol 48 (1) ◽  
pp. 58-66 ◽  
Author(s):  
Ying Ying Leung ◽  
Ana-Maria Orbai ◽  
Alexis Ogdie ◽  
Pil Hojgaard ◽  
Richard Holland ◽  
...  
Keyword(s):  
Psoriatic Arthritis ◽  
Physical Function ◽  
Outcome Measures ◽  
Physical Functioning ◽  
Working Group ◽  
Short Form ◽  
Outcome Measurement ◽  
Patient Reported Outcome Measures ◽  
Measurement Information ◽  
Patient Reported

Objective.Numerous patient-reported outcome measures (PROM) exist for the measurement of physical function for psoriatic arthritis (PsA), but only a few are validated comprehensively. The objective of this project was to prioritize PROM for measuring physical function for potential incorporation into a standardized outcome measurement set for PsA.Methods.A working group of 13 members including 2 patient research partners was formed. PROM measuring physical function in PsA were identified through a systematic literature review and recommendations by the working group. The rationale for inclusion and exclusion from the original list of existing PROM was thoroughly discussed and 2 rounds of Delphi exercises were conducted to achieve consensus.Results.Twelve PROM were reviewed and discussed. Six PROM were prioritized: Health Assessment Questionnaire (HAQ) and 4 modifications (HAQ-Disability Index, HAQ-Spondyloarthritis, modified HAQ, multidimensional HAQ), Medical Outcomes Study 36-item Short Form survey physical functioning domain, and the Patient-Reported Outcomes Measurement Information System (PROMIS) physical functioning module.Conclusion.Through discussion and Delphi exercises, we achieved consensus to prioritize 6 physical function PROM for PsA. These 6 PROM will undergo further appraisal using the Outcome Measures in Rheumatology (OMERACT) Filter 2.1.

scholarly journals Getting the measure of outcomes in clinical practice

2014 ◽  
Vol 20 (3) ◽  
pp. 165-171 ◽  
Author(s):  
Glyn Lewis ◽  
Helen Killaspy
Keyword(s):  
Outcome Measures ◽  
Outcome Measurement ◽  
Patient Reported Outcome Measures ◽  
Patient Reported Outcome ◽  
Quality Of Services ◽  
List Type ◽  
Regression To The Mean ◽  
Process Measures ◽  
Patient Reported

SummaryIt has been argued that the routine use of patient-reported outcome measures (PROMs) should be encouraged in order to improve the quality of services and even to determine payment. Clinician-rated outcome measures (CROMs), patient-reported experience measures (PREMs) and process measures also should be considered in evaluating healthcare quality. We discuss difficulties that the routine use of outcome measures might pose for psychiatric services. When outcome and experience measures are used to evaluate services they are difficult to interpret because of differences in case mix and regression to the mean. We conclude that PROMs and CROMs could be useful for monitoring the progress of individuals and that clinical audit still has an important role to play in improving the quality of services.LEARNING OBJECTIVESUnderstand the difference between process measurement and outcome measurement.Understand the limitation of using outcome measures to assess and promote quality of services.Understand the difficulties in assessing the psychometric properties and validity of outcome measures.

Improving Ambulation in Multiple Sclerosis

US Neurology ◽  
2009 ◽  
Vol 05 (01) ◽  
pp. 50
Author(s):  
Francois Bethoux ◽  
Keyword(s):  
Multiple Sclerosis ◽  
Walking Speed ◽  
Outcome Measurement ◽  
Daily Activities ◽  
Walking Distance ◽  
Patient Reported ◽  
Walking Performance ◽  
Patient Reported Measures ◽  
The Impact

Ambulation is frequently affected by multiple sclerosis (MS), and is one of the most valued neurological functions among individuals with MS. While walking speed and walking distance have been used for decades as indicators of disease progression, other aspects of gait disturbance are not routinely assessed, and the impact of walking limitations on the daily activities and quality of life of patients is not fully understood. Recently, rehabilitation techniques, devices, and medications that aim directly at improving walking performance have been tested in individuals with MS. At the same time, clinician-rated and patient-reported measures of ambulation are being validated in this patient population. As a consequence of these advances, clinicians can draw from a growing body of evidence to enhance decision-making and outcome measurement when trying to help MS patients fight one of the most visible consequences of their disease.

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