scholarly journals Oral Complementary Medicine Use among People with Inflammatory Arthritis: An Australian Rheumatology Association Database Analysis

2020 ◽  
Vol 2020 ◽  
pp. 1-9
Author(s):  
Ashley Fletcher ◽  
Marissa Lassere ◽  
Lyn March ◽  
Catherine Hill ◽  
Graeme Carroll ◽  
...  
Keyword(s):  
Complementary Medicine ◽  
Inflammatory Arthritis ◽  
Tertiary Education ◽  
Nonparametric Test ◽  
Patient Reported Outcome ◽  
Outcome Data ◽  
Patient Reported ◽  
Strong Opioids ◽  
Over Time

Objectives. To describe oral complementary medicine (CM) use in people with inflammatory arthritis, associations with use, and changes in use over time. Methods. Demographic, clinical, and patient-reported outcome data from 5,630 participants with rheumatoid arthritis (RA), ankylosing spondylitis (AS), psoriatic arthritis (PsA), and juvenile idiopathic arthritis (JIA) were extracted from the Australian Rheumatology Association Database (ARAD), a national observational database. CM use at entry into ARAD was ascertained for participants recruited between 2002 and 2018. CM was categorised according to the NIH/Cochrane schema (fatty acids, herbs, or supplements). Logistic regression was used to assess associations between demographic characteristics and CM use. Change in CM use between 2006 and 2016 was investigated using a nonparametric test for trend of rate by year. Results. 2,156 (38.3%) ARAD participants were taking CM at enrolment (RA: 1,502/3,960 (37.9%), AS: 281/736 (38.2%), PsA: 334/749 (44.6%), and JIA: 39/185 (21.1%)). CM use was more prevalent in women (OR 1.3; 95% CI: 1.13-1.50), those with tertiary education (OR 1.32; 95% CI: 1.13-1.55), private health insurance (OR 1.26; (95% CI: 1.10-1.44), drinking alcohol sometimes (OR 1.22; 95% CI: 1.05-1.43), poorer function (HAQ) (OR 1.13; 95% CI: 1.02-1.24), use of NSAID (OR 1.32; 95% CI 1.17-1.50), weak (OR 1.21; 95% CI 1.05-1.41) but not strong opioids, and less prevalent in current smokers (OR 0.76; 95%: CI 0.63-0.91). CM use was not associated with pain, disease activity, or quality of life. The most common CMs were fish oils (N=1,489 users) followed by glucosamine (N=605). Both declined in use over time between 2006 and 2016 (27.5% to 21.4%, trend p=0.85 and 15.5% to 6.4%, trend p<0.01), respectively. Conclusion. Oral CM use is common among Australians with inflammatory arthritis. Its use is greater among women and those with tertiary education. Fish oil and glucosamine, the most common CMs, both declined in use over time.

scholarly journals P104 Longitudinal patient reported outcome data collected from a smartphone app can map group level trajectories of disease activity over time

Rheumatology ◽  
2020 ◽  
Vol 59 (Supplement_2) ◽  
Author(s):  
Philip D. H Hamann ◽  
Nicola Minaur ◽  
Jon H Tobias ◽  
Emma M Clark
Keyword(s):  
Disease Activity ◽  
Inflammatory Arthritis ◽  
Patient Reported Outcome ◽  
Outcome Data ◽  
Smartphone App ◽  
Group Level ◽  
Moderate Disease ◽  
Patient Reported ◽  
Over Time ◽  
Moderate Disease Activity

Abstract Background Patient-reported outcome measures are a cornerstone of the current early inflammatory arthritis audit and part of the best practice tariff. However, outcome data are collected infrequently meaning longitudinal changes in disease activity cannot be accurately examined. We report results of a twelve-month clinical pilot of a cloud-enabled commercial smartphone app to record patient self-reported disease activity outcome measures to evaluate trends of disease activity in a routine rheumatology setting. Methods Patients with a clinical diagnosis of inflammatory arthritis attending routine rheumatology clinic were offered the opportunity to use a smartphone app to record their disease activity between hospital appointments using the RAPID3. Data from the first twelve months (July 2018 - July 2019) was extracted and latent class modelling using aggregate data was undertaken to explore the trends of disease activity experienced by our patients at a group level. Standard analysis recommendations were followed. Results Over the course of twelve-months, 58 patients used the app to record their disease activity using the RAPID3. These patients had a mean age of 53 and were 76% female. 35 patients had rheumatoid arthritis, 15 patients had psoriatic arthritis and 8 had another inflammatory arthritis. The median number of RAPID3 scores completed per patient was 8 (interquartile range 14), and a total of 706 RAPID3 scores were submitted over the 12 months. Three different trajectories of disease activity were identified among our cohort of patients. The first trajectory showed a low stable plateau of disease activity for six months before further improvement (27 patients:47%) over six months. The second trajectory (23 patients; 40%) showed an initial moderate disease activity which gradually declined over six months before improving markedly in the last three months, returning to moderate disease activity. The final trajectory (8 patients; 14%) identified patients with the highest disease activity which showed a gradual but slow improvement of disease activity over twelve months. These different trajectories show the changing burden of inflammatory arthritis over time. Conclusion Regular longitudinal data collection of patient-reported outcomes via a smartphone app can be used to show distinct group level trajectories of disease activity and could be used to examine changes in outcomes of patients over time. Data such as these could be used at a departmental level to examine the burden of inflammatory arthritis experienced by patients, assist planning future service requirements, and help anticipate the timings of future appointments more accurately for patients. Disclosures P.D.H. Hamann Consultancies; Living With Ltd. Royalties; PH has provided consultancy for and has an options and limited royalty agreement with, Living With Ltd. software company for the development of the smartphone application described in this abstract. N. Minaur None. J.H. Tobias None. E.M. Clark None.

Enhancing quality of prosthetic services with process and outcome information

2016 ◽  
Vol 41 (2) ◽  
pp. 164-170 ◽  
Author(s):  
Allen W Heinemann ◽  
Linda Ehrlich-Jones ◽  
Lauri Connelly ◽  
Patrick Semik ◽  
Stefania Fatone
Keyword(s):  
Quality Improvement ◽  
Performance Management ◽  
The United States ◽  
Routine Care ◽  
Patient Reported Outcome ◽  
Outcome Data ◽  
Outcome Monitoring ◽  
Patient Reported ◽  
Functional Scores

Background: Prosthetic clinics in the United States must attain accreditation in order to receive reimbursement from Medicare. The accreditation process requires clinics to establish and implement performance management plans and quality improvement activities. This report describes the experience of seven prosthetic clinics in collecting patient-reported outcome data and using it to improve quality of services. Objectives: To describe the experience of prosthetic clinics implementing outcome monitoring and quality improvement activities as part of routine patient care. Study design: Qualitative, ethnographic design. Methods: Clinics incorporated the Orthotics Prosthetics Users’ Survey into routine care for patients aged 18 years and older who received a new lower limb prosthesis or socket. Orthotics Prosthetics Users’ Survey measures lower extremity functional status, quality of life, and satisfaction with device and services. Clinics selected Orthotics Prosthetics Users’ Survey-derived indicators on which to implement quality improvement action plans. Results: Seven clinics participated, but only three were able to sustain data collection. Two clinics initiated quality improvement activities focused on improving declining satisfaction or functional scores. Conclusions: Quality improvement activities based on patient-reported outcomes require a high degree of organizational commitment and support. External facilitation can support clinics’ quality improvement activities. Clinical relevance This project illustrates the challenges of sustaining quality improvement activities using patient-reported outcome data in prosthetic clinics.

scholarly journals Utilization of Patient-Reported Outcomes in Myeloproliferative Neoplasm Clinical Trials Registered at Clinicaltrials.Gov

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 5469-5469
Author(s):  
Blake T. Langlais ◽  
Gina Mazza ◽  
Crystal S. Langlais ◽  
Heidi E. Kosiorek ◽  
Holly L. Geyer ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Research Funding ◽  
Patient Reported Outcomes ◽  
Outcome Data ◽  
Patient Reported ◽  
Secondary Endpoints ◽  
Secondary Outcomes ◽  
Line P ◽  
Over Time

Abstract Introduction Patients with myeloproliferative neoplasms (MPN) typically experience debilitating symptom profiles and profound quality of life (QoL) decrements. Characterizing symptom burden in MPN clinical trials is vital to inform efficacy analyses. Previous studies have shown clinicians and researchers depend on patient-reported outcomes (PROs) to glean disease-related symptoms and signs of QoL decline. The current literature also shows that integrating PROs into the routine care of patients with cancer is associated with increased survival compared with usual care. However, the extent to which PROs are employed in MPN clinical trials is undescribed. ClincalTrials.gov is a registry of clinical trials mandated by the US Congress and implemented in 2000 by the National Institutes of Health. This study used data from ClinicalTrials.gov to evaluate the characteristics of MPN clinical trials over time and their use of PROs as primary and secondary outcomes. Methods The statistical software R and the rclinicaltrials package were used to download data from ClinicalTrials.gov. Trial data were included in this study if the following criteria were met: (1) the words essential thrombocythemia, polycythemia vera, myelofibrosis, or myeloproliferativeneoplasm (MPN) were used in the registered primary disease condition or official trial title; (2) the trial start date was between January 1, 2000 - July 1, 2018; (3) primary/secondary outcome data were available. Trial outcome data were then parsed for PRO text phrases including MPN-Symptom Assessment Form, quality of life, questionnaire, patient-reportedoutcome, and more specific PRO items (e.g., bone pain, concentration problems, and depression). Descriptive statistics and regression analysis were used to assess rates of primary/secondary outcomes over time. Results Clinical trial characteristics There were 535 trials satisfying the inclusion criteria. Since 2000, the number of registered MPN-related clinical trials ranged from 11 to 36 trials per year with 28 trials registered annually on average (Figure 1). Of the 535 trials, 470 (88%) were interventional and 65 (12%) observational. Trials often employed multiple intervention types including: drug (77%); procedure (28%); biological (19%); radiation (13%); genetic (3%); behavioral (2%); device (2%); dietary supplement (1%); other (24%) [percentages do not sum to 100% as categories are not mutually exclusive]. Eligibility criteria varied widely, though most used 18 years old as the minimum age requirement (71%; 379/535) and nearly all included both genders (>99%; 533/535). PRO outcomes over time Of the 535 MPN trials, the number of primary outcomes within MPN trials did not change over time (p=.50) with an average of 1.6 per trial. Around 8% of MPN clinical trials had PRO-related primary outcomes; this rate also did not change over time (Figure 1: solid red line; p=.97). However, the total number of secondary outcomes per trial has increased since 2000 (p<.001). From 2000-2005, 2006-2011, and 2012-2018 there was an average of 2.8, 3.3, and 5.2 secondary outcomes per trial, respectively. Also, the proportion of MPN clinical trials with PRO-related secondary outcomes has increased steadily over time (Figure 1: dashed blue line; p<.001). On average, from 2000-2005, 2006-2011, and 2012-2018 the proportion of MPN clinical trials with PRO-related secondary outcomes increased from 8% to 23%, to 33%. Conclusion Analysis of ClinicalTrials.gov data suggest that patient-reported outcomes are being implemented into MPN clinical trials at increasing rates. While this suggests that MPN trials are becoming more patient-centered, PROs are included more often as secondary endpoints than primary endpoints. This analysis also suggests an increase in the number of secondary endpoints in recent years in MPN clinical trials, consistent with observed trends of growing complexity and increasing amount of data captured in clinical trials in general. Disclosures Mesa: Ariad: Consultancy; Galena: Consultancy; Gilead: Research Funding; Promedior: Research Funding; Incyte: Research Funding; Novartis: Consultancy; CTI: Research Funding; Celgene: Research Funding. Scherber:Orphan Pharmaceuticals: Honoraria; Incyte: Consultancy. Dueck:Bayer: Employment; Phytogine: Employment; Pfizer: Honoraria.

Using Health-Related Quality of Life Assessments to Evaluate Care Support Within Medicaid

2008 ◽  
Vol 9 (2) ◽  
pp. 42-50 ◽  
Author(s):  
Richard T. Meenan ◽  
David Feeny ◽  
David Labby ◽  
Mark Spofford ◽  
David Mosen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Preliminary Evidence ◽  
Patient Reported Outcome ◽  
Outcome Data ◽  
Health Related Quality ◽  
Study Results ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related

CareOregon, an Oregon-based not-for-profit Medicaid health plan, successfully piloted a “CareSupport” model that identifies high-risk members and clinically stratifies them for intervention. Internal analyses indicate that CareSupport lowers utilization and cost; CareOregon, however, has lacked patient-reported outcome data on the health-related quality of life (HRQL) of CareSupport participants. Between September 2005 and November 2006, we conducted a pilot study in which the Health Utilities Index Mark 3 (HUI3), a generic preference-based measure of health status and HRQL, was integrated into CareOregon’s existing screening algorithm for possible admission into CareSupport. We obtained baseline data on 616 CareSupport candidates and 4-month HUI3 follow-up data on 143 candidates (104 CareSupport, 39 non-CareSupport). On a 0.00 (dead)-to-1.00 (perfect health) scale, the mean overall baseline HUI3 score for CareSupport patients was 0.18 (0.20 for non-CareSupport patients), comparable to baseline means reported elsewhere for much older patients immediately after suffering serious acute medical events, such as stroke or hip fracture. A 0.05 mean 4-month improvement in overall HRQL among CareSupport enrollees relative to non-CareSupport enrollees was clinically important but not statistically significant. A 0.10 improvement in HUI3 emotion was both statistically significant and clinically important. Study results provide good preliminary evidence of the value of patient-reported outcomes in clarifying individual illness burden and assessing intervention effectiveness.

scholarly journals Utilizing the Axon Registry® for quality improvement

2018 ◽  
Vol 8 (5) ◽  
pp. 456-461 ◽  
Author(s):  
Anup D. Patel ◽  
Joseph V. Fritz ◽  
David A. Evans ◽  
Karen B. Lundgren ◽  
Katie Hentges ◽  
...  
Keyword(s):  
Quality Improvement ◽  
Patient Reported Outcome ◽  
Outcome Data ◽  
Quality Data ◽  
Data Registry ◽  
Patient Reported ◽  
Essential Function ◽  
American Academy Of Neurology ◽  
Quality Improvement Tool

In 2015, the American Academy of Neurology began development of a clinical quality data registry now known as the Axon Registry®. The data collected by the Axon Registry and reported back to participants include performance on a number of quality measures relevant to neurology practice. While the Axon Registry may serve any number of needs for neurology practices, the essential function of the registry is to inform neurologists regarding the quality of their care and provide them with a tool to establish not only performance baselines but progress toward improved quality of care. This article includes 2 case studies of how the Axon Registry has been implemented in neurology practices to date. In the future, implementation of patient-reported outcome data and additional outcome measures will be necessary to expand the reach and effectiveness of the Axon Registry as a quality improvement tool.

State of the Science in Ovarian Cancer Quality of Life Research: A Systematic Review

2012 ◽  
Vol 22 (7) ◽  
pp. 1273-1280 ◽  
Author(s):  
Lisa M. Hess ◽  
Frederick B. Stehman
Keyword(s):  
Quality Of Life ◽  
Ovarian Cancer ◽  
Patient Reported Outcome ◽  
Outcome Data ◽  
Research Quality ◽  
Eligibility Criteria ◽  
Quality Of Life Research ◽  
Patient Reported ◽  
Cumulative Knowledge

IntroductionHealth-related quality of life (HRQOL) has become an increasingly important focus of outcomes in cancer care with the movement toward more patient-oriented research. Quality-of-life outcomes are important in ovarian cancer, which has not yet benefitted from improved survival outcomes as have other diseases. This study was designed to systematically assess and summarize HRQOL in ovarian cancer.MethodsA systematic search strategy was initiated to identify published literature measuring HRQOL of women with a diagnosis of ovarian cancer (OC). Data were synthesized to evaluate HRQOL and patient-reported outcome data at various time points: before, during, and after chemotherapy. Data were pooled and summary statistics compared across published studies. Comparisons of means were conducted using analysis of variance.ResultsThere were 170 publications meeting all eligibility criteria, representing 139 unique studies of patients with ovarian cancer, where QOL data were collected. Within this literature, more than 90 different patient-reported outcome (PRO) instruments were administered. The most common HRQOL instruments included the European Organisation for Research and Treatment of Cancer QLQ-C30 and the Functional Assessment of Cancer Therapy. Few studies alone demonstrated significant differences in QOL between the experimental and comparison arm or throughout the treatment period. Pooled data, however, show that baseline QOL may significantly improve, particularly after completion of chemotherapy treatment.DiscussionDespite the increase in assessment and reporting of QOL in ovarian cancer research studies during the past 15 years, there remains little consistency in the types and format of data collected. There is a need to enhance the standardized collection and reporting of HRQOL data from research involving women with ovarian cancer so that research can build on the cumulative knowledge base to improve outcomes in this patient population.

scholarly journals Moving forward toward standardizing analysis of quality of life data in randomized cancer clinical trials

2018 ◽  
Vol 15 (6) ◽  
pp. 624-630 ◽  
Author(s):  
Andrew Bottomley ◽  
Madeline Pe ◽  
Jeff Sloan ◽  
Ethan Basch ◽  
Franck Bonnetain ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Clinical Trials ◽  
Patient Reported Outcomes ◽  
Patient Reported Outcome ◽  
Outcome Data ◽  
Patient Reported ◽  
Related Quality ◽  
Health Related ◽  
Guidelines And Recommendations

Background There is currently a lack of consensus on how health-related quality of life and other patient-reported outcome measures in cancer randomized clinical trials are analyzed and interpreted. This makes it difficult to compare results across randomized controlled trials (RCTs) synthesize scientific research, and use that evidence to inform product labeling, clinical guidelines, and health policy. The Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of Life Endpoints Data for Cancer Clinical Trials (SISAQOL) Consortium aims to develop guidelines and recommendations to standardize analyses of patient-reported outcome data in cancer RCTs. Methods and Results Members from the SISAQOL Consortium met in January 2017 to discuss relevant issues. Data from systematic reviews of the current state of published research in patient-reported outcomes in cancer RCTs indicated a lack of clear reporting of research hypothesis and analytic strategies, and inconsistency in definitions of terms, including “missing data,”“health-related quality of life,” and “patient-reported outcome.” Based on the meeting proceedings, the Consortium will focus on three key priorities in the coming year: developing a taxonomy of research objectives, identifying appropriate statistical methods to analyze patient-reported outcome data, and determining best practices to evaluate and deal with missing data. Conclusion The quality of the Consortium guidelines and recommendations are informed and enhanced by the broad Consortium membership which includes regulators, patients, clinicians, and academics.

Adaptation and cross-cultural validation of the Spanish version of the Thyroid-Related Quality-of-Life Patient-Reported Outcome (ThyPRO) questionnaire

2018 ◽  
Author(s):  
Lleo Ana Maria Gonzalez ◽  
Mauro Boronat Cortes ◽  
Ulla Feldt-Rasmussen ◽  
Carlos Rodriguez Perez ◽  
AEse Krogh Rasmussen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcome ◽  
Cross Cultural ◽  
Spanish Version ◽  
Patient Reported ◽  
Related Quality ◽  
Cultural Validation
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