scholarly journals Are patient-reported outcomes of physical function a valid substitute for objective measurements?

2018 ◽  
Vol 25 (5) ◽  
Author(s):  
J. A.J. Douma ◽  
H. M.W. Verheul ◽  
L. M. Buffart
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Stem Cell ◽  
Physical Function ◽  
Patient Reported Outcomes ◽  
Exercise Intervention ◽  
Objective Measures ◽  
Patients With Cancer ◽  
Patient Reported

BackgroundPhysical function is important for defining treatment strategies in patients with cancer and can be estimated using patient-reported outcomes (pros). Although pros are subjective, physical activity and fitness can be tested objectively with adequate, but more labour-intensive methods that are rarely used in daily clinical practice. To determine whether pros for physical function (pro-pf) accurately predict physical function, we studied their interrelationships with objective measures of physical activity and fitness in patients with cancer who had completed cancer treatment, including adjuvant or neoadjuvant chemotherapy or autologous stem-cell transplantation.MethodsBaseline data from the react (Resistance and Endurance Exercise After Chemotherapy) and exist(Exercise Intervention After Stem-Cell Transplantation) studies were evaluated. In those studies, the effects of an exercise intervention on physical fitness, fatigue, and health-related quality of life in patients with cancer shortly after completion of chemotherapy or stem-cell transplantation were studied. Interrelationships between pro-pf (physical function subscale of the European Organisation for Research and Treatment of Cancer 30-question core Quality of Life Questionnaire), physical activity (accelerometer), and cardiorespiratory fitness (peak oxygen uptake) were assessed using univariable and multivariable multilevel linear mixed-model analyses.ResultsAfter adjustment for age, sex, and body mass index, the pro-pf was significantly associated with physical activity (β = 1.75; 95% confidence interval: 1.08 to 2.42) and cardiorespiratory fitness (β = 0.10; 95% confidence interval: 0.06 to 0.13). Standardized coefficients were 0.28 and 0.26 respectively, indicating a weak association.ConclusionsThe pro-pf is only weakly associated with objective physical activity and fitness evaluation in patients after curative treatment for cancer. The pro-pf cannot, therefore, be used in clinical practice as a substitute for objective measures of physical function.

Quality of patient-reported outcomes used for quality of life, physical function, and functional capacity in trials of childhood fractures

2020 ◽  
Vol 102-B (12) ◽  
pp. 1599-1607
Author(s):  
Ben A. Marson ◽  
Simon Craxford ◽  
Sandeep R. Deshmukh ◽  
Douglas J. C. Grindlay ◽  
Joseph C. Manning ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Function ◽  
Upper Extremity ◽  
Validation Studies ◽  
Patient Reported Outcomes ◽  
Development Studies ◽  
Ovid Medline ◽  
Patient Reported ◽  
Childhood Fractures

Aims This study evaluates the quality of patient-reported outcome measures (PROMs) reported in childhood fracture trials and recommends outcome measures to assess and report physical function, functional capacity, and quality of life using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) standards. Methods A Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA)-compliant systematic review of OVID Medline, Embase, and Cochrane CENTRAL was performed to identify all PROMs reported in trials. A search of OVID Medline, Embase, and PsycINFO was performed to identify all PROMs with validation studies in childhood fractures. Development studies were identified through hand-searching. Data extraction was undertaken by two reviewers. Study quality and risk of bias was evaluated by COSMIN guidelines and recorded on standardized checklists. Results Searches yielded 13,672 studies, which were screened to identify 124 trials and two validation studies. Review of the 124 trials identified 16 reported PROMs, of which two had validation studies. The development papers were retrieved for all PROMs. The quality of the original development studies was adequate for Patient-Reported Outcomes Measurement Information System (PROMIS) Mobility and Upper Extremity and doubtful for the EuroQol Five Dimension Youth questionnaire (EQ-5D-Y). All other PROMs were found to have inadequate development studies. No content validity studies were identified. Reviewer-rated content validity was acceptable for six PROMs: Activity Scale for Kids (ASK), Childhood Health Assessment Questionnaire, PROMIS Upper Extremity, PROMIS Mobility, EQ-5D-Y, and Pediatric Quality of Life Inventory (PedsQL4.0). The Modified Disabilities of the Arm, Shoulder, and Hand (DASH) questionnaire was shown to have indeterminate reliability and convergence validity in one study and PROMIS Upper Extremity had insufficient convergence validity in one study. Conclusion There is insufficient evidence to recommend strongly the use of any single PROM to assess and report physical function or quality of life following childhood fractures. There is a need to conduct validation studies for PROMs. In the absence of these studies, we cautiously recommend the use of the PROMIS or ASK-P for physical function and the PedsQL4.0 or EQ-5D-Y for quality of life. Cite this article: Bone Joint J 2020;102-B(12):1599–1607.

Augmenting machine learning algorithms to predict mortality using patient-reported outcomes in oncology.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 1510-1510
Author(s):  
Ravi Bharat Parikh ◽  
Jill Schnall ◽  
Manqing Liu ◽  
Peter Edward Gabriel ◽  
Corey Chivers ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Machine Learning ◽  
Mortality Risk ◽  
Patient Reported Outcomes ◽  
Machine Learning Algorithms ◽  
Measurement Information ◽  
Patients With Cancer ◽  
Patient Reported ◽  
Mortality Table

1510 Background: Machine learning (ML) algorithms based on electronic health record (EHR) data have been shown to accurately predict mortality risk among patients with cancer, with areas under the curve (AUC) generally greater than 0.80. While patient-reported outcomes (PROs) may also predict mortality among patients with cancer, it is unclear whether routinely-collected PROs improve the predictive performance of EHR-based ML algorithms. Methods: This cohort study included 8600 patients with cancer who had an outpatient encounter at one of 18 medical oncology practices in a large academic health system between July 1st, 2019 and January 1st, 2020. 4692 (54.9%) patients completed assessments of symptoms, performance status, and quality of life from the PRO version of the Common Terminology Criteria for Adverse Events and the Patient-Reported Outcomes Measurement Information System Global v.1.2 scales. We hypothesized that ML models predicting 180-day all-cause mortality based on EHR + PRO data would improve AUC compared to ML models based on EHR data alone. We assessed univariate and adjusted associations between each PRO and 180-day mortality. To train the EHR-only model, we fit a Least Absolute Shrinkage and Selection Operator (LASSO) regression using 192 EHR demographic, comorbidity, and laboratory variables. To train the EHR + PRO model, we used a two-phase approach to fit a model using EHR data for all patients and PRO data for those who completed assessments. To test our hypothesis, we compared the bootstrapped AUC, area under the precision-recall curve (AUPRC), and sensitivity at a 20% risk threshold for both models. Results: 464 (5.4%) patients died within 180 days of the encounter. Decreased quality of life, functional status, and appetite were associated with greater 180-day mortality (Table). Compared to the EHR-only model, the EHR + PRO model significantly improved AUC (0.86 [95% CI 0.85-0.86] vs. 0.80 [95% CI 0.80-0.81]), AUPRC (0.40 [95% CI 0.37-0.42] vs. 0.30 [95% CI 0.28-0.32]), and sensitivity (0.45 [95% CI 0.42-0.48] vs. 0.33 [95% CI 0.30-0.35]). Conclusions: Routinely collected PROs augment EHR-based ML mortality risk algorithms. ML algorithms based on EHR and PRO data may facilitate earlier supportive care for patients with cancer. Association of PROs with 180-day mortality.[Table: see text]

scholarly journals Patient-reported outcomes: association between physical activity and quality of life in patients with chronic kidney disease

2020 ◽  
Vol 22 (4) ◽  
pp. 343-348
Author(s):  
Jana Uhlinova ◽  
Ülle Pechter ◽  
Kaja Põlluste ◽  
Mait Raag ◽  
Raili Müller ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Chronic Kidney Disease ◽  
Kidney Disease ◽  
Patient Reported Outcomes ◽  
Patient Reported

scholarly journals Physical Function and Quality of Life After Resection of Mobile Spine Chondrosarcoma

2019 ◽  
Vol 9 (7) ◽  
pp. 743-753
Author(s):  
Nuno Rui Paulino Pereira ◽  
Stein J. Janssen ◽  
Nicky Stoop ◽  
Stefan Hartveldt ◽  
Yen-Lin E. Chen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Pain Intensity ◽  
Physical Function ◽  
Patient Reported Outcomes ◽  
Neurological Status ◽  
Unplanned Readmission ◽  
Oncological Outcomes ◽  
Patient Reported ◽  
Mobile Spine

Study Design: Retrospective cohort study. Objectives: (1) To assess patient-reported outcomes—physical function, pain, and quality of life—in patients who underwent resection of a mobile spine chondrosarcoma. (2) To assess complications (90 days), readmissions, reoperations, oncological outcomes, and neurologic status. Methods: Thirty-three patients with spinal conventional chondrosarcoma resection between 1984 and 2014 at one hospital were included. The primary outcome measures were—minimally 6 months after surgery—the EuroQol 5 Dimensions (EQ5D), PROMIS–Physical Function, PROMIS–Pain Intensity, and Oswestry (ODI) Disability Index, or Neck (NDI) Disability established in 14 out of 20 alive (70.0%) patients. Complications, readmission, reoperations, oncological outcomes, and neurological status were reported for the complete cohort of 33 patients. Results: After spine chondrosarcoma resection, patients (n = 14) reported worse physical function (median 43, range 22-61, P = .026), worse quality of life (median EQ5D 0.70, range 0.04-1, P = .022), and comparable pain intensity (median 47, range 31-56, P = .362) when compared with US general population values. The median NDI/ODI was 25 (range 0-72) indicating mild to moderate disability. Patients undergoing reoperation had worse patient-reported outcomes than those who did not. Eighteen (55.5%) out of 33 patients suffered complications (90 days), 14 (42.4%) had unplanned readmission, and 13 (39.4%) underwent reoperation. Intralesional resection was associated with increased readmission, reoperation, and recurrence rate. Conclusions: Chondrosarcoma affects quality of life and physical function and its treatment frequently results in complications and reoperations. Our findings can be used to inform future patients about expected outcomes.

scholarly journals Patient-reported Outcomes across Categories of Juvenile Idiopathic Arthritis

2015 ◽  
Vol 42 (10) ◽  
pp. 1914-1921 ◽  
Author(s):  
Alysha J. Taxter ◽  
E. Paul Wileyto ◽  
Edward M. Behrens ◽  
Pamela F. Weiss
Keyword(s):  
Quality Of Life ◽  
Juvenile Idiopathic Arthritis ◽  
Physical Function ◽  
Patient Reported Outcomes ◽  
Tertiary Care ◽  
Antiinflammatory Drug ◽  
Special Focus ◽  
Female Sex ◽  
Patient Reported

Objective.Although there is increasing reliance on patient-reported outcomes (PRO) for disease management, there is little known about the differences in PRO across juvenile idiopathic arthritis (JIA) categories. The purpose of our study was to assess PRO across JIA categories, including pain, quality of life, and physical function, and to determine clinical factors associated with differences in these measures across categories.Methods.This was a longitudinal cohort study of patients with JIA at a tertiary care pediatric rheumatology clinic. Subjects, PRO, and clinical variables were identified by querying the electronic medical record. Mixed-effects regression assessed pain, quality of life, and function.Results.Subjects with enthesitis-related arthritis (ERA) and undifferentiated JIA had significantly more pain, poorer quality of life, and poorer physical function. The ERA and undifferentiated JIA categories, physician’s global disease activity assessment, female sex, and nonsteroidal antiinflammatory drug use were significantly associated with more pain, poorer quality of life, and poorer function. In models limited to ERA, female sex and tender enthesis count were significant predictors of decreased function.Conclusion.ERA and undifferentiated JIA categories had poorer PRO than other JIA categories. Further work is needed to address ways to improve PRO in children with JIA, with a special focus on children with ERA and undifferentiated JIA.

scholarly journals Associations of Physical Activity and Exercise with Health-related Outcomes in Patients with Melanoma During and After Treatment: A Systematic Review

2021 ◽  
Vol 20 ◽  
pp. 153473542110407
Author(s):  
Brendan J. Crosby ◽  
Pedro Lopez ◽  
Daniel A. Galvão ◽  
Robert U. Newton ◽  
Dennis R. Taaffe ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Side Effects ◽  
Patient Reported Outcomes ◽  
Current Evidence ◽  
Patient Reported ◽  
Health Related ◽  
Physical Activity And Exercise ◽  
Objectively Measured

Purpose: Although exercise medicine is recommended to counter treatment-related side-effects and improve health-related outcomes of patients affected by different cancers, no specific recommendations exist for patients with melanoma. As a result, we systematically examined the current evidence regarding the effects of physical activity and exercise on objectively-measured and patient-reported outcomes among patients with melanoma. Methods: Searches were conducted in PubMed, CINAHL, EMBASE, SPORTDiscus, and Web of Science databases. This review included published data involving physical activity or exercise and objectively-measured or patient-reported outcomes of patients with cutaneous melanoma. The quality of included studies was assessed using the McMaster University Critical Appraisal Tool for Quantitative Studies. Results: Six studies including 882 patients with melanoma were included. Studies presented heterogeneity of design with 2 cross-sectional surveys, 2 retrospective analyses, and 2 non-randomized intervention trials. No statistically significant change in quality of life, fatigue, physical function, cardiorespiratory fitness, body composition, psychological distress, cognitive function, or treatment-related side-effects were attributable to physical activity or exercise. Importantly, physical activity or exercise during melanoma treatment or into survivorship did not adversely impact patients/survivors. Conclusion: In summary, physical activity or exercise did not adversely impact quality of life, objectively-measured or patient-reported outcomes in patients with melanoma. In addition, there is a paucity of quality studies examining the effects of physical activity or exercise on patients with melanoma throughout the cancer care continuum.

scholarly journals Patient-Reported Outcomes in Young Adults with Osteonecrosis Secondary to Developmental Dysplasia of the Hip

2020 ◽  
Author(s):  
Andreas Roposch ◽  
Avi Marks ◽  
Dror Maor ◽  
Mario Cortina-Borja ◽  
Aresh Hashemi-Nejad
Keyword(s):  
Quality Of Life ◽  
Physical Function ◽  
Patient Reported Outcomes ◽  
Acetabular Dysplasia ◽  
Developmental Dysplasia ◽  
Maximum Score ◽  
Patient Reported ◽  
Hip Function ◽  
Dysplasia Of The Hip

Abstract Background Osteonecrosis of the femoral epiphysis is a common complication in the treatment of developmental dysplasia of the hip (DDH). While functional outcomes of affected patients are good in childhood, it is not clear how they change during the transition to young adulthood. This study looks at determining the relationship between osteonecrosis of the femoral head and hip function, physical function and health status in adolescents and young adults treated for DDH.Methods We included 149 patients with a mean (and standard deviation) age of 19.7 (3.8) years with osteonecrosis following an open or closed reduction (1995–2005) and 32 age-matched patients without osteonecrosis. All patients completed valid and reliable patient-reported outcome measures in 2015/16 to quantify their hip function (maximum score 100); physical function (maximum score 100); and general health status (maximum score 1). We graded all radiographs for severity of osteonecrosis (Bucholz-Ogden); acetabular dysplasia (centre-edge angle); subluxation (Shenton’s line); and osteoarthritis (Kellgren-Lawrence). We determined the association between the patient-reported outcomes and radiographic severity of osteonecrosis using mixed-effects regression analysis adjusted for age and acetabular dysplasia at study assessment, and number of prior operations.Results In 149 patients (186 hips) with and without osteonecrosis, the mean differences (95% confidence interval) in hip function, physical function and quality of life were − 4.7 (-10.26, 0.81), -1.03 (-9.29, 7.23) and 0.10 (-1.15, 1.18), respectively. Adjusted analysis stratified across radiographic severity of osteonecrosis showed only patients with Bucholz grade III had significantly worse hip function (p < 0.01) and physical function (p < 0.05) but no difference in health-related quality of life when compared to no osteonecrosis.Conclusion Osteonecrosis secondary to DDH is a relatively benign disorder in young adulthood. Affected patients demonstrated minimal physical disability, a normal quality of life but reduced hip function.

Fatigue, Quality of Life and Related Symptoms: Patient Reported Outcomes in Myelodysplastic Syndrome, Aplastic Anemia and Paroxysmal Nocturnal Hemoglobinuria

Blood ◽  
2015 ◽  
Vol 126 (23) ◽  
pp. 4456-4456
Author(s):  
Carmelita P. Escalante ◽  
Stephanie Chisolm ◽  
Juhee Song ◽  
Marsha Richardson ◽  
Salkeld Ellen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Physical Activity ◽  
Patient Reported Outcomes ◽  
Paroxysmal Nocturnal Hemoglobinuria ◽  
Management Strategies ◽  
The Past ◽  
Frequency Of Use ◽  
Patient Reported ◽  
The Mean

Abstract Background: Fatigue is common and very distressing among patients with myelodysplastic syndrome (MDS), aplastic anemia (AA), and paroxysmal nocturnal hemoglobinuria (PNH), frequently affecting their quality of life. Often, this is combined with other symptoms such as pain, depression, anxiety, and stress. Limited data exists on the perceived level and impact of fatigue, quality of life and related symptoms in these patients. The objectives are to describe fatigue, quality of life (QOL) and related symptoms in patients with MDS, AA, and PNH by prospectively assessing these using the Functional Assessment of Cancer Therapy-Anemia (FACT-An) for fatigue and QOL (subscales within FACT- An), pain using the Brief Pain Inventory (BPI), and depression, anxiety and stress using the DASS-21, and to define management strategies routinely used. Methods: Surveys were administered via the AA and MDS International Foundation's patient database from 10/2014 through 1/2015 via a secure internet portal associated with the Foundation's website. Descriptive statistics were utilized. Results: Of 313 pts, 145 (46%) had MDS, 84 (27%) had AA, 74 (24%) PNH, and 10 (3%) unreported [31 (10%), >1 diagnosis]. The mean age was 57 years with 210 (67%) female, 197 (92%) white among 214 with known race and 70 (25%) received a blood transfusion in the past 90 days. The mean fatigue score overall was 25 (range 1-52) and 28, 25, and 24 for AA, MDS, and PNH, respectively, p=0.12. (severe level). The overall quality of life score was 68 (range 10-104) and 67, 69, 67 for AA, MDS, PNH, respectively, p=0.82. Please note with the FACT-An, FACT-G and FACT-F -The higher the score, the better the QOL. The overall ranges for stress were normal; pain and depression, mild; and anxiety, moderate. Among the subgroups, stress was normal (all); pain and depression were mild (all); anxiety was mild in MDS, moderate in AA, PNH. None of the subgroups had statistical significance for these symptoms including anxiety. Most common management strategies used for fatigue in the past month were preserving energy 252 (81%); physical activity 234 (75%); naps 228 (73%). The strategies that were helpful to extremely helpful were preserving energy 216/252 (86%), physical activity 162/234 (69%), and naps 154/228 (68%). Among subgroups, physical activity (p=0.03) and meditation (p=0.03) showed significant differences. Frequency of use 3 or more times/week were preserving energy 166/237 (70%), physical activity 128/226 (57%), and naps 131/213 (62%) among those who indicated the frequency of use. Among subgroups, the frequency of physical activity p= 0.03, eating healthy p=0.005, and counseling p=.005 showed significant differences. Conclusions: There are few patient reported outcomes of fatigue, QOL and related symptoms in this population of rare disorders. Fatigue and QOL are significant challenges with similar findings of fatigue, QOL and related symptoms among the subgroups. However, there were differences among the types of management strategies and the frequency of use among the subgroups. Further focus on development of interventions tailored for AA, MDS, and PNH may assist in better management of fatigue with potential improvement in QOL. Disclosures No relevant conflicts of interest to declare.

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