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.

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.

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 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.

P048 QUALITY OF LIFE AND OTHER PATIENT REPORTED OUTCOMES IN PATIENTS WITH POUCHITIS

2020 ◽  
Vol 158 (3) ◽  
pp. S107
Author(s):  
Edward Barnes ◽  
Millie Long ◽  
Laura Raffals ◽  
Xian Zhang ◽  
Anuj Vyas ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Patient Reported Outcomes ◽  
Patient Reported

Understanding quality of life and treatment history of patients with Bertolotti syndrome compared with lumbosacral radiculopathy

2019 ◽  
Vol 31 (2) ◽  
pp. 222-228 ◽  
Author(s):  
Joshua L. Golubovsky ◽  
Arbaz Momin ◽  
Nicolas R. Thompson ◽  
Michael P. Steinmetz
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Propensity Score ◽  
Disc Herniation ◽  
Symptom Onset ◽  
Patient Reported Outcomes ◽  
Lumbosacral Radiculopathy ◽  
Patient Reported ◽  
Age And Sex

OBJECTIVEBertolotti syndrome is a rare spinal condition that causes low-back pain due to a lumbosacral transitional vertebra (LSTV), which is a pseudoarticulation between the fifth lumbar transverse process and the sacral ala. Bertolotti syndrome patients are rarely studied, particularly with regard to their quality of life. This study aimed to examine the quality of life and prior treatments in patients with Bertolotti syndrome at first presentation to the authors’ center in comparison with those with lumbosacral radiculopathy.METHODSThis study was a retrospective cohort analysis of patients with Bertolotti syndrome and lumbosacral radiculopathy due to disc herniation seen at the authors’ institution’s spine center from 2005 through 2018. Diagnoses were confirmed with provider notes and imaging. Variables collected included demographics, diagnostic history, prior treatment, patient-reported quality of life metrics, and whether or not they underwent surgery at the authors’ institution. Propensity score matching by age and sex was used to match lumbosacral radiculopathy patients to Bertolotti syndrome patients. Group comparisons were made using t-tests, Fisher’s exact test, Mann-Whitney U-tests, Cox proportional hazards models, and linear regression models where variables found to be different at the univariate level were included as covariates.RESULTSThe final cohort included 22 patients with Bertolotti syndrome who had patient-reported outcomes data available and 46 propensity score–matched patients who had confirmed radiculopathy due to disc herniation. The authors found that Bertolotti syndrome patients had significantly more prior epidural steroid injections (ESIs) and a longer time from symptom onset to their first visit. Univariate analysis showed that Bertolotti syndrome patients had significantly worse Patient-Reported Outcomes Measurement Information System (PROMIS) mental health T-scores. Adjustment for prior ESIs and time from symptom onset revealed that Bertolotti syndrome patients also had significantly worse PROMIS physical health T-scores. Time to surgery and other quality of life metrics did not differ between groups.CONCLUSIONSPatients with Bertolotti syndrome undergo significantly longer workup and more ESIs and have worse physical and mental health scores than age- and sex-matched patients with lumbosacral radiculopathy. However, both groups of patients had mild depression and clinically meaningful reduction in their quality of life according to all instruments. This study shows that Bertolotti syndrome patients have a condition that affects them potentially more significantly than those with lumbosacral radiculopathy, and increased attention should be paid to these patients to improve their workup, diagnosis, and treatment.

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