Background: The Banff Patellofemoral Instability Instrument (BPII) 2.0 is a patient-reported outcome measure (PROM) tailored specifically for patellofemoral instability. The BPII 2.0 was developed in English and has been validated for adolescents and translated into several languages, but not into Spanish. Purpose/Hypothesis: This investigation involved translating the BPII 2.0 into Spanish and evaluating and validating its psychometric properties. It was hypothesized that there would be a moderate correlation between the Spanish BPII 2.0 and the Spanish version of the Kujala score. Study Design: Cohort study (diagnosis); Level of evidence, 3. Methods: The BPII 2.0 underwent forward and backward translations into Colombian Spanish according to the Consensus-Based Standards for the Selection of Health Measurement Instrument guidelines. Colombian patients aged 9 to 18 years who experienced knee symptoms after a primary or recurrent patellar dislocation were recruited from a hospital-based orthopaedic clinic. Participants completed the Spanish BPII 2.0 and the Kujala score during their initial visit (t0) and the Spanish BPII 2.0 again 1 week later (t1). Internal consistency and test-retest reliability were assessed using the intraclass correlation coefficient (ICC). Concurrent validity of the Spanish BPII 2.0 with the Kujala score was explored through Pearson correlation analysis. Results: A total of 46 participants (31 [67%] female; mean age, 15.1 ± 2.0 years) were included. The mean time since first patellofemoral dislocation was 22 ± 28 months. Of the 4 participants who received operative treatment for patellar instability, the mean time since surgery was 12 months (range, 7-18 months). All patients completed the BPII 2.0 at t0 and at t1, a mean of 7 days later (range, 6-7 days), and 45 (98%) participants completed the Kujala score at t0. Five Spanish BPII 2.0 items exhibited floor or ceiling effects, however no subscales demonstrated these effects. Th Spanish BPII 2.0 demonstrated excellent internal consistency at both t0 (ICC, 0.94; 95% CI, 0.92-0.96) and t1 (ICC, 0.96; 95% CI, 0.93-0.97), along with excellent test-retest reliability (ICC, 0.98; 95% CI, 0.97-0.99). Concurrent validity of the Spanish BPII 2.0 with the Spanish Kujala score was good to strong ( r = 0.74; 95% CI, 0.57-0.85). Conclusion: The Spanish BPII 2.0 had excellent internal consistency and test-retest reliability, suggesting this PROM is a reliable and valid questionnaire.
Arthritis Care & ResearchVolume 76, Issue 1 p. 10-14 Editorial Reflections on the COVID-19 Pandemic: The Impact on Academic Teaching and Clinical Education Maura Daly Iversen, Corresponding Author Maura Daly Iversen [email protected] orcid.org/0000-0003-4708-9914 College of Health Professions, Sacred Heart University, Fairfield, Connecticut Address correspondence via email to Maura Daly Iversen, PT, DPT, SD, MPH, at [email protected].Search for more papers by this author Maura Daly Iversen, Corresponding Author Maura Daly Iversen [email protected] orcid.org/0000-0003-4708-9914 College of Health Professions, Sacred Heart University, Fairfield, Connecticut Address correspondence via email to Maura Daly Iversen, PT, DPT, SD, MPH, at [email protected].Search for more papers by this author First published: 30 July 2023 https://doi.org/10.1002/acr.25207Citations: 1 Author disclosures are available at https://onlinelibrary.wiley.com/doi/10.1002/acr.25207. Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onEmailFacebookTwitterLinkedInRedditWechat Supporting Information Filename Description acr25207-sup-0001-Disclosureform.pdfPDF document, 181.8 KB Disclosure form Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article. REFERENCES 1 Sacred Heart University. SHU Coronavirus Management team. March 4, 2020. URL: https://www.sacredheart.edu/offices--departments-directory/health-services/coronavirus/shu-coronavirus-management-team/ Google Scholar 2 Centers for Disease Control and Prevention. Interim guidance for administrators of U.S. institutions of higher education. Plan, prepare, and respond to coronavirus disease 2019 (COVID-19). 2020. URL: https://stacks.cdc.gov/view/cdc/87624 Google Scholar 3 Center for Disease Control and Prevention. Prioritizing case investigation and contact tracing for COVID-19. 2022. URL: https://www.cdc.gov/mmwr/volumes/70/wr/mm7003a3.htm#:~:text=Health%20departments%20might%20choose%20to,a%20known%20cluster%20(5) Google Scholar 4 Sacred Heart University. Coronavirus: keeping our community safe. 2023. URL: https://www.sacredheart.edu/offices--departments-directory/health-services/coronavirus/ Google Scholar 5 Sacred Heart University. The Pioneer Promise. 2023. URL: https://www.sacredheart.edu/offices--departments-directory/health-services/coronavirus/on-campus-policies/the-pioneer-promise/ Google Scholar 6Fortuna A. Conn. hospital employee marks first case of coronavirus connected to the state. CT Connecting You. 2020. URL: https://www.nbcconnecticut.com/news/local/first-case-of-coronavirus-reported-in-danbury/2234292/ Google Scholar 7 CT Connecting You. CT COVID-19 vaccine rollout: what to know as phase 1B begins; how to schedule an appointment. 2021. URL: https://www.nbcconnecticut.com/news/coronavirus/covid-vaccine/ct-covid-19-vaccine-rollout-what-to-know-as-phase-1b-begins-how-to-schedule-an-appointment/2405357/ Google Scholar 8Ojakian M. Phase 3 planning framework for reopening undergraduate residential colleges and universities. Update #4 to the higher education report: recommendations for reopening undergraduate colleges and universities. 2020. URL: https://reopen.ct.gov/documents/UPDATE-4-Phase-3-Framework--for-posting.pdf Google Scholar 9 Sacred Heart University. SHU Medical Reserve Corps. 2023. URL: https://www.sacredheart.edu/offices--departments-directory/shu-medical-reserve-corps/ Google Scholar 10 American Association of Colleges of Nursing. F.A.S.T: academic nurse educators respond to COVID-19. 2020. URL: https://www.aacnnursing.org/cvweb/cgi-bin/eventsdll.dll/EventInfo?wrp=webinarinfo.htm&SESSIONALTCD=wf20_03_16 Google Scholar 11 American Physical Therapy Association. Telehealth advocacy. June 7, 2020. URL: https://www.apta.org/advocacy/issues/telehealth Google Scholar 12 American Speech-Language-Hearing Association. Telepractice. 2023. URL: https://www.asha.org/practice-portal/professional-issues/telepractice/ Google Scholar 13 Accreditation Review Commission on Education for the Physician Assistant. Statement from ARC-PA regarding COVID-19. 2020. URL: https://www.arc-pa.org/wp-content/uploads/2020/08/Coronavirus-guidelines-Statement-from-ARC-PA-08.11.2020-FNL.pdf Google Scholar 14Ozelie R, Domenighetti S, Sugar A, et al. Evolution of level I fieldwork during an international pandemic: students’ perceptions of the effectiveness of virtual simulation-based level I fieldwork. J Occup Ther Educ 2002; 6: 10. Google Scholar 15 Department of Education, Office of Civil Rights. Education in a pandemic: the disparate impacts of COVID-19 on America's students. 2021. URL: https://www2.ed.gov/about/offices/list/ocr/docs/20210608-impacts-of-covid19.pdf Google Scholar Citing Literature Volume76, Issue1January 2024Pages 10-14 ReferencesRelatedInformation
Background and purpose: The Banff Patellofemoral Instability Instrument (BPII) 2.0 is a patient-reported outcome measure (PROM) designed specifically for patellofemoral instability. We translated and adapted the BPII 2.0 into Swedish and assessed its psychometric properties. Patients and methods: The BPII 2.0 was forward- and back-translated. Children aged 10–16 years with patellar dislocation and instability or recurrent dislocation were recruited. Children completed the Swedish BPII 2.0 and KOOS-Child during their initial visit (t0) and 1 week later (t1). Internal consistency and test–retest reliability were evaluated using intraclass correlation coefficients (ICCs) for the BPII 2.0 and KOOS-Child scores comparison. Pearson correlation coefficients examined concurrent validity of the Swedish BPII 2.0 subscales with KOOS-Child subscales. Results: 64 children (46 females), mean age 13.8 (10.0–16.3) years, participated. Time after patellar dislocation or surgery was 3–24 months. 55 patients (86%) returned the second BPII 2.0 and KOOS-Child after an average of 9 (5–22) days. There were no ceiling or floor effects for the total score of the new Swedish BPII 2.0 or for its subscales. BPII 2.0 demonstrated excellent internal consistency at t0 (ICC 0.96, 95% confidence interval [CI] 0.95–0.97) and at t1 (ICC 0.97, CI 0.95–0.98), as well as excellent test–retest reliability (ICC 0.97, CI 0.96–0.98). Concurrent validity of the BPII 2.0 subscales with KOOS-Child subscales was moderate to strong (rho 0.40–0.88). Conclusion: The Swedish BPII 2.0 showed excellent internal consistency as well as excellent test–retest reliability and is a reliable and valid questionnaire.
Recent discoveries of the purpose and potential of microbial interactions with humans have broad implications for our understanding of metabolism, immunity, the host–microbe genetic interactions. Bioavailability and bioaccessibility of phytonutrients in foods not only enrich microbial diversity in the lower human gastrointestinal tract (GIT) but also direct the functioning of the metagenome of the microbiota. Thus, healthy choices must include foods that contain nutrients that satisfy both the needs of humans and their microbes. Physical activity interventions at a moderate level of intensity have shown positive effects on metabolism and the microbiome, while intense training (>70% VO2max) reduces diversity in the short term. The microbiome of elite endurance athletes is a robust producer of short-chain fatty acids. A lifestyle lacking activity is associated with the development of chronic disease, and experimental conditions simulating weightlessness in humans demonstrate loss of muscle mass occurring in conjunction with a decline in gut short-chain fatty acid (SCFA) production and the microbes that produce them. This review summarizes evidence addressing the relationship between the intestinal microbiome, diet, and physical activity. Data from the studies reviewed suggest that food choices and physical fitness in developed countries promote a resource “curse” dilemma for the microbiome and our health.
Introduction:Children with juvenile arthritis (JA) experience pain, stiffness, fatigue, and decreased motion leading to difficulties with daily activities and low physical activity (PA). PA is critical to improve health and function and mitigate JA-associated symptoms. This study evaluated the evidence for PA interventions in children with JA.Materials and Methods:A systematic review of randomized controlled trials (RCTs) of PA interventions in children with JA was conducted. Ovid (Medline), Cochrane Library, EMBASE, and CINAHL databases were searched for papers published in English between 1/1/1946 and 9/1/2021. Studies which concurrently assessed medical interventions were excluded. Participant and intervention characteristics and outcomes were extracted. Study internal validity and intervention attributes were assessed.Results:A total of 555 studies were identified, with 13 studies from 10 countries included. Data from 672 children diagnosed with juvenile idiopathic arthritis (JIA) (range of mean ages, 8.7 to 16.1 years) were analyzed. Fifty-two percent of intervention arms incorporated strengthening exercise alone or combined with other exercise, with 61.9% performed 3x/week. About 43.5% of sessions lasted >45 to ≤60 minutes and 65.2% of programs were ≥12 to <28 weeks. PA interventions improved function and symptoms without adverse events. Intervention details were missing especially regarding PA intensity, reasons for dropouts, and adherence. Only two studies incorporated strategies to promote adherence.Discussion:RCTs of PA interventions in JA only include JIA. Available RCTs used mixed modes of interventions. Reporting of PA interventions lacks sufficient detail to discern the dose-response relationship. Strategies to motivate engagement in PA and to support families to promote PA are lacking, as are studies of long-term outcomes.Conclusion:There are limited RCTs of PA interventions in JIA. Adherence was better with low intensity programs. PA interventions for JIA yield positive health benefits but better reporting of PA intervention details is needed to generate more high-quality evidence and inform clinical practice.Prospero Registration:Maura Iversen, Johan von Heideken, Marie Andre. Physical Activity in Children with Rheumatic Diseases: a systematic review. PROSPERO 2021 CRD42021274634 Available from: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021274634.
Objective Immunomodulatory therapies improve the management of chronic diseases but can be associated with infectious risk. The present study was undertaken to examine the laboratory screening practices for hepatitis B virus (HBV), hepatitis C virus (HCV), and tuberculosis (TB) and rates of vaccination for pneumococcal and influenza in patients prescribed select immunosuppressive agents at our institution. Methods A retrospective analysis was conducted to review patients who were prescribed a select immunosuppressive over 3 years. Data were extracted from electronic health records to identify rates of screening and vaccination prior to initiation or at any time. Logistic regression models were developed to identify predictors of screening and vaccination. Results We identified 2,396 patients prescribed immunosuppressive medications by rheumatology (52.6%) and non‐rheumatology specialties. Rates of screening at any time point were 84.5% (2,025 of 2,396) for HBV, 76.7% (1,838 of 2,396) for HCV, and 71.8% (1,720 of 2,396) for TB. Patients who had either in‐system primary care providers (PCPs) or rheumatologists were more likely to receive pneumococcal vaccinations (odds ratio [OR] 1.98 [95% confidence interval (95% CI) 1.55–2.54] and OR 4.08 [95% CI 2.76–6.02], respectively). Patients with dermatologic (OR 1.67 [95% CI 1.14–2.45]) or rheumatologic providers (OR 2.5 [95% CI 1.86–3.36]) were more likely to be vaccinated for influenza. Conclusion More than 70% of patients were screened for either HBV, HCV, or TB at some point. Rates of pneumococcal vaccination were better than rates of influenza vaccination. Patients with in‐system PCPs were more likely to be screened and vaccinated. Establishing and executing consistent processes for screening and vaccination prior to immunosuppressive treatment remains a priority in ambulatory settings.
Objective The purpose of this study was to describe adverse events (AEs) and dropouts (DOs) in randomized controlled trials of therapeutic exercise for hip osteoarthritis (HOA) and to identify whether Consolidated Standards of Reporting Trials (CONSORT) guidelines were followed. Methods The Cochrane Library, Embase, PubMed, and CINAHL databases were searched. Randomized controlled trials of therapeutic exercise for HOA published in English from January 1, 1980 to August 1, 2020 were included. Studies were excluded if other interventions were provided, if participants had previous hip arthroplasty, or if AEs and DOs for HOA participants were not reported separately. The internal validity of each study (Physiotherapy Evidence Database [PEDro] scoring) was assessed, participant and intervention characteristics were extracted, and the existence of a clear statement and reasons for AEs and DOs was reported. Descriptive statistics characterized results. Data heterogeneity prohibited the use of meta-analysis. Results Fourteen studies (mean PEDro score=7.4; range=6-10) from 10 countries were included, with 707 participants exercising. Exercise intensity was unspecified in 72.2% of exercise arms. Six studies (42.9%) included a statement of AEs, and 32 AEs were reported. All studies had a DO statement, but 29.0% of DOs occurred for unknown reasons. Six studies (42.9%) gave reasons for DOs that could be classified as AEs in 9 participants; 41 participants (5.8%) experienced exercise-related AEs. Conclusion Reports of AEs were inconsistent, some DOs were potentially misclassified, and primary components of exercise interventions were frequently unreported. Despite these limitations, the overall low number of nonserious AEs suggests that the exercise-related risk of harm is minimal for individuals with HOA. Impact Understanding the risk of harm associated with exercise for HOA can better inform safe dosing of exercise, clinical implementation, and replicability. Informative, consistent reporting of AEs, DOs, and exercise is needed. Greater use of the CONSORT harms-reporting checklist is warranted.
Objective Using a quality improvement approach, our objective was to integrate a treat-to-target approach for rheumatoid arthritis (RA) through routine electronic collection of patient-reported disease activity scores and a multidisciplinary learning collaborative for rheumatologists. Methods RA patients completed a patient-reported outcome measure, the Routine Assessment of Patient Index Data 3 (RAPID3), at check-in. Nine rheumatologists and their patients were allocated to a learning collaborative intervention group focused on a treat-to-target approach and 13 were allocated to a control group. The primary outcome was documentation of a treat-to-target implementation score: disease activity score, disease activity score used in the medication change decision, the presence of a treatment target, and an indication of shared decision-making. A primary analysis of patient visits with medication changes was conducted using an interrupted time-series analysis. Results We studied 554 individual rheumatology patients with 709 patient visits. Treat-to-target implementation scores among intervention rheumatologists (mean +/- SD 44.6% +/- 1.63%) were 12.4% higher than in the control group (mean +/- SD 32.2% +/- 1.50%; P < 0.0001). We observed differences in treat-to-target implementation score components, comparing intervention group to control group rheumatologists: disease activity score present, 77.2% versus 68.0% (P = 0.02); disease activity score used in the medication change decision, 45.2% versus 30.0% (P < 0.01); treatment target, 9.0% versus 0.4% (P < 0.01); and shared decision-making, 46.9% versus 30.0% (P < 0.01). Secondary analysis of patient visits with high RAPID3 scores found that medication changes were 54% less likely in the intervention versus control group (odds ratio 0.46 [95% confidence interval 0.27-0.79], P = 0.005). Conclusion This nonrandomized, interrupted time-series trial demonstrated a modest but significant impact of a learning collaborative intervention on rheumatologist documentation of a treat-to-target approach in RA.
Purpose: To describe physical examination (PE) findings of individuals with protracted concussion recovery and evaluate an integrated primitive reflex (PR) disinhibition, vision, and vestibular rehabilitation intervention. Method: Retrospective study of 82 patients with protracted concussion (60.98% female) who received ≥ 2 phases of treatment. Following a baseline PE, patients completed the Post-Concussion Symptom Survey (PCSS), Activities-Based Balance Confidence Questionnaire (ABC), Dizziness Handicap Index (DHI), and Acquired Traumatic Brain Injury (aTBI) Vision Questionnaire. A subset of patients (Group 1), completed a final PE and second questionnaire administration. Descriptive statistics characterized the sample. T-tests and Wilcoxon rank sum tests compared characteristics of Group 1 vs Group 2. Wilcoxon sign rank tests assessed changes in patient-reported outcomes. Results: Patients in Groups 1 (median age=23.5) and 2 (median age=17.5) were similar regarding demographic and PE findings. Statistically and clinically significant improvements were seen for Group 1: PCSS (-21 points, MCID 6.8), DHI (-27 points, MDC 17.8, MCID 19), ABC (+ 8.5 points, MDC 9)and aTBI Vision Questionnaire (-16.5 points). Conclusion: Patients with protracted concussion recovery can benefit from a multitude of interventions ranging from orthopedic to vision and vestibular interventions in order to address objective deficits and subjective complaints such as headache, dizziness, or blurry vision following a concussion. Patients who completed the full intervention demonstrated clinically significant improvements in function, including return to school/work and recreational activities. These data suggest there is a potential positive benefit to a structured, integrative concussion rehabilitation approach for individuals with protracted concussion recovery.
Introduction. The Acute Care Confidence Survey (ACCS) was created as a measure of student self-efficacy for acute care clinical education experiences (CEEs). Initial measures of validity and reliability have been established; however, further psychometric testing is warranted to facilitate academic and clinical adaptation. This study aimed to further investigate the psychometric properties of the ACCS on a population of physical therapist students from diverse educational backgrounds. The study aims were to examine 1) the test–retest reliability of the ACCS, 2) the relationship between the ACCS and student demographic variables including previous acute care exposure, and 3) the relationship between ACCS scores and clinical performance. Methods. A total of 66 students completing their acute care CEE in a large hospital system were recruited. Sixty students from 14 different Doctor of Physical Therapy programs had complete data sets and were used for the final analysis. On the first day of their CEE, the students completed the ACCS along with a demographic questionnaire including items about academic preparation. Students completed the ACCS a second time within 1 week to determine the test–retest reliability. The midterm Clinical Performance Instrument (CPI) scores were used to measure the CEE performance. Descriptive statistics characterized the sample. A Pearson correlation coefficient was used to determine the test–retest reliability. The associations between ACCS scores and demographic characteristics and CPI scores were computed using Chi squared tests, t tests, and correlation coefficients. Results. The test–retest reliability of the ACCS was 0.83 (P < .0001). The correlation between total ACCS score and midterm CPI score was 0.32 (P < .01); low to moderate correlations were found between the mobility, instruct, and judgment subscales of the ACCS and midterm CPI scores (r = 0.26, 0.30, 0.44, respectively, P < .05). There were low but significant associations between ACCS scores and the number of previous CEEs (first, middle, and terminal; r = 0.33; P < .01), number of weeks of completed full-time CEEs (r = 0.37; P < .003), and number of acute care exposure hours (r = 0.28, P = .02). Having taken a didactic course specifically dedicated to acute care significantly impacted the judgment subscale of the ACCS (P = .005). Discussion. Previous exposure to the acute care setting and CEE experiences, regardless of setting, had a positive impact on the ACCS scores. The low to moderate correlations reported between the ACCS and student performance measured by the CPI indicate that self-efficacy alone may not be sufficient to predict the student performance. Conclusion. These data indicate that the ACCS is a reliable measure of student preparedness. Further examination on the utility of the ACCS is warranted.
Objective Knee pain from osteoarthritis is frequent in the adult population. Prior trials have had conflicting results concerning the therapeutic effects of vitamin D on knee pain, and few trials have investigated marine Omega‐3 fatty acids (n‐3 FA). Methods In the double‐blind, placebo‐controlled Vitamin D and Omega‐3 Trial (VITAL), 25,871 US adults were randomized in a 2‐by‐2 factorial design to receive vitamin D or n‐3 FA. We identified a subgroup with chronic knee pain prior to randomization and assessed knee pain at baseline and annually during follow‐up using the Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC) (graded on a 0–100 scale, where 100 indicates worst symptoms). Repeated measures modeling was used to test the effect of randomized treatment on WOMAC pain scores over follow‐up after adjustment for age and sex. Analyses were repeated for WOMAC function and stiffness. Results This study included 1,398 participants who returned at least one knee pain questionnaire. The mean age was 67.7 years, 66% were women, and the mean ± SD WOMAC pain score was 37 ± 19. The mean ± SD follow‐up time was 5.3 ± 0.7 years. WOMAC pain did not differ between the active vitamin D group and the vitamin D placebo group or between the active n‐3 FA group and the n‐3 FA placebo group at any time point during follow‐up. Linear time‐by‐treatment interactions were not significant for either treatment (vitamin D, P = 0.41; n‐3 FA, P = 0.77). Vitamin D and n‐3 FA supplementation did not significantly affect WOMAC function or stiffness scores over time. Conclusion Our findings indicate that vitamin D and n‐3 FA supplementation for a mean of 5.3 years does not reduce knee pain or improve function or stiffness in a large sample of US adults with chronic knee pain.
Physical function can be assessed through physical examination with the use of performance-based measures and patient-reported outcome measures (PROMs). Each form of assessment provides a unique contribution to the understanding of the impact of rheumatologic conditions on the patient. PROMs of physical function (PF) are an important component of the assessment of children with arthritis and have been included in the recommended core set of measures for childhood arthritis and musculoskeletal conditions. These measures provide the child's or parent's perspective of function within the context of daily living. Measures of PF include both generic measures, which are designed for use across a spectrum of diseases and within healthy individuals, and disease-specific measures, which are developed intentionally for children with a rheumatologic or musculoskeletal condition. Most PF PROMs include items that relate to daily functional activities, but not all include aspects of daily living, play, and recreation, which are activities essential to the physical, social, and emotional development of children. The use of PROMs for children with arthritis is influenced by many factors. First, pediatric rheumatologic conditions are heterogeneous. For example, juvenile idiopathic arthritis (JIA) has seven established subtypes, including oligoarticular, systemic, polyarticular rheumatoid factor (RF)-positive, polyarticular RF-negative, psoriatic, enthesitis-related, and undifferentiated arthritis 1. Each subtype has distinct clinical features and differing ages of onset. Other diseases, such as juvenile idiopathic inflammatory myositis (IIM) and systemic lupus erythematosus (SLE), also vary in clinical presentation. In diseases with an early age of onset, children's cognitive abilities will limit the use of self-report, requiring the use of proxy respondents (parent or guardian). Additionally, the performance of PROMs within JIA subtypes is variable 2, and measures are less available for the transition from childhood to adulthood. Using the International Classification of Functioning, Disability, and Health developed by the World Health Organization, the measures 3-12 described below include the following domains: impairment (pain), activity limitations (activities of daily living [ADLs]), participation restriction, and overall health status 1, 2 for use in children with JIA, juvenile IIM, and other musculoskeletal conditions. Some of these PROMs are generic measures of PF (the Patient-Reported Outcomes Measurement Information System – Physical Function Scale [PROMIS-PF], Pediatric Outcomes Data Collection Instrument [PODCI], and Activity Scale for Kids [ASK]), whereas others have been developed specifically for children with juvenile arthritis (the Juvenile Arthritis Functional Assessment Scale [JAFAS], Child Health Assessment Questionnaire [C-HAQ], and CMAS) and for children with musculoskeletal conditions (the Knee Osteoarthritis Outcome Survey for Children [KOOS-Child] and International Knee Documentation Committee Subjective Knee Evaluation Form in Children [Pedi-IKDC]). Singh et al 8 developed the C-HAQ to examine functional health status in children (ages 1 to 18 years) with JIA. The C-HAQ has since been evaluated in a variety of conditions, including in children with chronic musculoskeletal pain, juvenile dermatomyositis (DM), juvenile IIM, and SLE 13-17. The C-HAQ is a core set measure recommended by the international research networks in pediatric rheumatology (the Paediatric Rheumatology International Trials Organization [PRINTO]) 18. The C-HAQ includes a disability index, which assesses the following eight domains of PF: dressing and grooming, arising, eating, walking, hygiene, reach, grip, and activities. The disability index is supplemented with two visual analog scales (VASs) as follows: one for pain (the discomfort index) and one for global assessment of overall well-being (the health status index). The disability index includes 30 items. The discomfort index and health status index add one item each to the tool. Each item within the C-HAQ disability index is scored on a four-point scale (0 = without any difficulty, 1 = with some difficulty, 2 = with much difficulty, and 3 = unable to do). Respondents are prompted to indicate if assistance or aids are needed to complete each talk. Reporting the use of assistance or aids within a domain sets the score to a minimum of two for that domain. Activities that the child is unable to do because he/she is too young are marked as not applicable (N/A) for age. Respondents are asked to consider the completion of tasks within the past week. There is no cost when using the tool for research purposes. The C-HAQ can be obtained by contacting Gurkirpal Singh (gsingh@leland.stanford.edu) or via websites such as http://www.niehs.nih.gov/research/resources/collab/imacs/diseaseactivity.cfm. The C-HAQ is typically administered via paper and pencil using self-report for children aged 8 years or older and proxy report (eg, parent or guardian) for children less than 8 years of age. The C-HAQ is sometimes administered via interview, particularly when it is being completed for research purposes 19. Geerdink et al 20 developed a digital version of the C-HAQ for the purpose of systematic monitoring in clinical settings. The digital version was found to be both reliable and user friendly 20. Within each of the eight domains, the item with the highest disability score determines the score for that domain. The global disability index is then obtained by calculating the mean of the eight functional domains, with a range of 0 to 3. The two VAS items (the discomfort index and the health status index) are measured on separate 15-cm scales. The distance from the left end of the scale to the respondent's mark is measured and multiplied by 0.2 to calculate the score, with a possible range of 0 to 3. Additional information on scoring can be found at https://www.niehs.nih.gov/research/resources/assets/docs/chaq_instructions_508.pdf. The disability index score ranges from 0 (no disability) to 3 (disabled). A higher score indicates a greater disability. This is a criterion-referenced test; however, Dempster et al 21 found that the median C-HAQ scores corresponding with mild, mild to moderate, and moderate disability were 0.13, 0.63, and 1.75, respectively. The time to complete the C-HAQ is 5 to 10 minutes. The administrative burden is low because no special equipment or training is needed to administer the C-HAQ. It takes approximately 2 minutes to score. Two alternate versions of the C-HAQ exist 22. Groen et al 23 studied one of these alternative versions of the C-HAQ, the C-HAQ-38, to address limitations related to ceiling effects when working with high-functioning patients with JIA. The C-HAQ-38 includes the addition of eight items, which ask respondents to indicate the amount of difficulty performing tasks more challenging than those included in the original list of 30 tasks. The other alternate version of the C-HAQ, the VASCHAQ, was modified from the C-HAQ-38 by removing the consideration for aids and devices or help, using response options in which questions are asked in relation to the child's peers, and using a 10-cm visual analog rating scale for each question. The C-HAQ has been translated and culturally adapted for use in more than 30 countries, including Argentina, Austria, Belgium, Brazil, Bulgaria, Chile, Croatia, Czech Republic, Denmark, Finland, France, Georgia, Germany, Greece, Hungary, Israel, Italy, Korea, Latvia, Mexico, Netherlands, Norway, Poland, Portugal, Russia, Slovakia, Spain, Sweden, Switzerland, Turkey, the United Kingdom, Yugoslavia 19, Arabic 24, and Costa Rica 25. The main limitation of the C-HAQ is the potential for a ceiling effect, particularly when assessing functional improvements among higher-functioning children (ie, those scoring closer to zero). Several authors have developed revised versions of the C-HAQ to address the ceiling effect. Recommendations to avoid a ceiling effect and improve discriminant validity include removing 12 redundant items 26, ignoring the domain structure and the use of aids and assistance 13, 26, 27, and using the C-HAQ-38, which includes eight additional items examining respondent's ability to complete more challenging tasks 23. Internal consistency has been demonstrated among children with JIA with Cronbach's α ranging from 0.88 to 0.96 8, 26, 28-30. Takken et al 26 evaluated shorter versions of the C-HAQ disability index and found good internal consistency for both the 29-item and 18-item versions (Cronbach's α = 0.93 for both). Among children with juvenile IIM, there were significant item-total correlations ranging from 0.35 to 0.81, with only four items with a correlation coefficient of less than 0.50. Each C-HAQ domain also correlated well with the total C-HAQ (r = 0.59-0.84) 14. For the test-retest reliability, which was studied at a 2-week interval, t tests revealed virtually identical disability index scores measured on the two occasions (0.96 versus 0.96; P > 0.9; Spearman rank correlation coefficient = 0.8; P< 0.002) 8. Stephens et al 31 examined test-retest reliability at 2 to 6 weeks among children with JIA and found very high reliability (intraclass correlation coefficient [ICC] 0.82, 95% confidence interval [CI] 3-1]). For patients with juvenile IIM and less than a 10% change in VAS of overall illness severity, the ICC was 0.96 17. Several studies have examined the correlation between C-HAQ disability index scores from questionnaires administered to parents and from questionnaires given to their children. All correlations were moderate to strong (r = 0.54-0.84; P < 0.05), demonstrating good interrater reliability 8, 21, 32, 33. The face validity of the instrument was first evaluated by a group of 20 health professionals and the parents of 22 healthy children 8. To establish convergent validity, C-HAQ scores were compared with a variety of other PF measures. Van Mater et al 34 conducted a systematic review of studies published between 1947 and 2010 that examined the validity of the C-HAQ and found moderate correlations of the C-HAQ with the active joint count (median correlation of 0.45 from seven studies) and limited range of motion (ROM) (median correlation of 0.49 from nine studies). The C-HAQ was most strongly correlated with the parent/patient assessment of global well-being (median correlation of 0.54 from six studies). Since this systematic review, Sontichai et al 35 identified a good correlation between the C-HAQ disability index and the patient's global assessment, physician's global assessment, and 27-joint Juvenile Arthritis Disease Activity Score in all JIA subtypes during active disease (P < 0.05) but a poor correlation between the C-HAQ disability index and disease activity variables during inactive disease. With regards to construct validity, Pouchot et al examined the validity of the C-HAQ in the following two age groups: children aged ten years and younger and children over ten years of age. They found that the difficulty of eight of 30 items of the C-HAQ depends on the responder's age. However, the impact of this age-related variation on the C-HAQ disability index score remained low (~0.25). As such, the authors concluded that the C-HAQ design and scoring system remove most of the expected bias related to physical development 36. C-HAQ responsiveness is variable in children with JIA, with effect sizes ranging from 0 to 0.5 27, 32, 37-40, and responsiveness is better among children with polyarticular JIA than those with oligoarticular JIA 34. In a study examining three versions of the C-HAQ, the C-HAQ, VASCHAQ, and C-HAQ-38 all demonstrated strong responsiveness when using self-report and proxy report. The VASCHAQ, however, was found to be approximately 25% more responsive than both the original C-HAQ-30 and the C-HAQ-38 41. In a study of children with juvenile IIM enrolled at diagnosis, the responsiveness coefficient was 0.90 17. Among 92 families with a child with JIA, the minimally clinical important difference (MCID) for improvement of the C-HAQ was 0.188 at most; the MCID for worsening was at most +0.125 42. The authors concluded that the C-HAQ is relatively insensitive to important short-term changes in children with JIA. In children with juvenile IIM considered by their physician to have improved over 6 months, the C-HAQ showed a standardized response mean (SRM) of 1.3 43. The C-HAQ has been validated for use with other disease conditions that impact PF among children, including juvenile DM 17, active juvenile SLE 16, juvenile IIM 17, and cerebral palsy (CP) 44, and with generalized musculoskeletal pain. The C-HAQ can be used to examine the natural history of disease as well as improvements in PF in children with JIA and juvenile IIM after participation in exercise training interventions 45. The C-HAQ's major strength is its multidimensionality, including eight domains of PF. In addition, the C-HAQ is brief, simple, and easy to administer and score. The C-HAQ is the most widely used measure by the rheumatology community and is included as a pediatric rheumatology core set measure for JIA, juvenile DM, and SLE. The C-HAQ has been culturally adapted for use in more than 30 countries and is useful for both clinical and research purposes. Bekkering et al 28 demonstrated no advantages of a performance test of PF as opposed to the C-HAQ to measure functional disability in children with JIA. The major limitation of the C-HAQ is the potential for a ceiling effect; the scale is less sensitive to milder levels of disability. Modified versions include eight high-level functional items to address the ceiling effect and have removed the items referring to the use of aids and devices for activities. The revised version allows for more normalized scores and demonstrated better psychometric properties. Dempster et al 21 suggested that clinicians as well as researchers consider a minimum improvement of 0.13 in C-HAQ scores to indicate functional improvement in children with arthritis. The C-HAQ is one of the most often used PROMs of PF among children with JIA and other pediatric rheumatology conditions. The C-HAQ and its revised versions demonstrate good reliability, validity, and responsiveness, suggesting its usefulness in clinical decision-making and in research. They are simple, brief, easy to use, and have been adapted for use in over 30 countries. The original C-HAQ is limited by its ceiling effect. The revised versions demonstrate better psychometric properties and, thus, are preferred to the original C-HAQ 13, 23, 26, 27. The JAFAS was developed by Lovell et al 5 as the first normalized measure to assess disability in children with JIA ages seven years and older in clinical settings. The JAFAS was developed for use in the US Bureau of Maternal and Children Health and Resources Development Project. The JAFAS requires the assessor to observe the child performing ten ADLs deemed difficult for children with arthritis to perform (eg, getting out of bed, dressing, picking an object up off the floor). The JAFAS includes ten items. The therapist observes the child performing activities and records the time it takes for the child to complete each task. Not applicable. There is no cost to use the JAFAS for research purposes. The JAFAS and its scoring manual can be obtained in the article by Lovell et al 5. The JAFAS is an observation measure that is to be administered by a physical or occupational therapist in a clinical or office setting. Activities are timed and compared with a criterion value noted on the form. The JAFAS is scored by hand. If a task is completed in less than or equal to the criterion time, then the task is scored as 0; if it is completed but requires longer than the criterion time, the task is scored as 1; if the patient unable to perform the task, the task is scored as 2. The scores for each task are then summed for a total JAFAS score. The possible range of scores is 0 to 20. A higher score indicates a greater level of disability. When the JAFAS when initially tested, control-group patients scored a mean of 0.43 (SD = 0.86) and patients with juvenile rheumatoid arthritis (JRA) scored a mean of 3.39 (SD = 3.42). It usually takes a child approximately 10 to 15 minutes to complete the activities. The JAFAS is relatively easy to administer and only takes 10 to 15 minutes. It does require a trained professional (training time is minimal) and standardized equipment, making the administrative burden higher than that of a paper-and-pencil questionnaire. The JAFAS has been culturally adapted for use among Indian children 46. The Indian version has internal consistency reliability similar to that of the C-HAQ. To date, no floor or ceiling effects have been reported for the JAFAS. Lovell et al 5 found that the mean interitem correlation of the JAFAS in the population with JIA was 0.36, indicating that the items capture different aspects of function. Internal consistency for the JAFAS varies from moderate to good, with a Cronbach's α ranging from 0.81 to 0.92 5, 28, 30. With regards to content validity, the JAFAS was developed from a range of tasks derived from the McMaster Health Index Questionnaire, the Arthritis Impact Measurement Scale, and the Health Assessment Questionnaire. An expert panel of pediatric physical and occupational therapists experienced in working with children with JIA reviewed items to ensure that the activities involved all aspects of the body during daily activities and were easy to measure objectively. Lovell et al 5 established convergent validity among a group of patients with JIA; they found that the JAFAS was significantly correlated with the number of involved joints (r = 0.40; P = 0.003), Steinbrocker functional class (r = 0.59; P = 0.0001), and disease activity (r = −0.32; P = 0.01). Bekkering et al 28 examined disability in 28 children with JIA and found that JAFAS and C-HAQ scores were positively correlated (r = 0.55; P < 0.01). The JAFAS was also correlated with measures of disease activity and joint counts, including swollen joints (r = 0.47; P < 0.05), physician's evaluation of disease activity (r = 0.41; P < 0.05), joint count on motion-restricted joints (r = 0.44; P < 0.05), and the pediatric Escola de Paulista de Medicina ROM scale 47 (r = 0.50; P < 0.01), demonstrating convergent validity. There was no significant association between JAFAS scores and erythrocyte sedimentation rate and joint count on tender joints. There does appear to be a floor effect when using the JAFAS in relatively high-functioning children. The ability of the JAFAS to capture change in children's PF was assessed in a study examining the impact of intra-articular injections in 92 children with JIA and was found to be moderate at the 6-week evaluation (SRM = 0.41; 95% CI 0.18-0.64) 48. Minimally important differences have not been reported for the JAFAS. Although the JAFAS was developed for children with JIA, it can be used to assess function and musculoskeletal involvement in children with SLE who have compromised PF. The JAFAS has been used in studies of exercise in children with JIA 49. The JAFAS provides reference values for the ten ADLs performed by the child and scores the child based on the time it takes to complete the activity. The JAFAS has clear, concise, and understandable directions for use and has been shown to correlate well with other measures of disease activity and movement. The biggest limitation is the need for a trained observer and standardized equipment in the clinical setting. The JAFAS also does not include play and recreation items and is limited to ten activities. There is no information on how to handle missing items. The JAFAS has been used in clinical trials of intra-articular joint injections in children with JIA. Bekkering et al 28 indicated the Juvenile Arthritis Functional Assessment Report (JAFAR) could be as useful as the JAFAS and has less administrative burden. Although the JAFAS has been shown to be reliable and valid, there are limited data on its ability to assess change following an intervention, and it requires the use of a trained observer. The JAFAS measures function as it relates to ten ADLs and may be best suited for children with limited ROM and strength deficits. The JAFAS does not provide an assessment of the child's ability to engage in play and recreation. Other existing measured such as the C-HAQ and JAFAR may be more efficient for use in clinical practice and research because the C-HAQ has the added benefit of having responsiveness data. The JASI assesses PF status and ADLs in children with JIA, ages 8 to 18 years 50. Items for the JASI were developed based on interviews of children, parents, teachers, and clinicians. The JASI Part I includes 100 items divided into five activity categories (self-care, domestic, mobility, school, and extracurricular). The JASI Part II is a priority function section in which children are asked to identify and score activities for which they want to see improvement 51. Part I includes 100 items, and Part II includes five items. A seven-point degree of difficulty rating scale is used for responses (6 = as well as friends/family without arthritis; 5 = it is a little difficult; 4 = it is very difficult; 3 = using special equipment; 2 = with a little help from someone; 1 = with a lot of help from someone; 0 = someone has to do it for me or I cannot do it because of my arthritis). The recall period of time is the current status. There is a fee for the training manual and software, which can be obtained from the developer. The JASI can be obtained from Dr. Wright at Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, 150 Kilgour Road, Toronto, Ontario M4G 1R8, Canada (vwright@hollandbloorview.ca). The child completes Part I on a computer; Part I takes approximately 20 to 45 minutes to complete. For Part II, the child is interviewed; the interview takes approximately 20 minutes to complete. Part I is automatically scored using computer software. Part II is scored by hand according to the test manual. The Part I range of scores is 0 to 600. The Part II range of scores is 0 to 30. Lower scores reflect greater disability. This is a criterion-referenced test. Time to complete is not reported in the literature. The test is relatively time-consuming, taking approximately 40 minutes to administer, and requires computer software and a test manual, which can be obtained from the authors who developed the tool. The JASI has not been translated or culturally adapted. The JASI has no reported floor or ceiling effects. To determine test-retest reliability, Wright et al 51 administered the JASI to 30 children with JRA between 8 and 19 years of age at baseline, 3 weeks, and 3 months 51. Reliability of the JASI Part I was excellent at 3 weeks (ICC = 0.98) and 3 months (ICC = 0.99). Reliability was lower for respondents with mild disease than those with polyarticular JIA. Test-retest reliability for the JASI Part II was fair (κ = 0.57). Seventeen clinicians reviewed the questionnaire and rated the index as a credible functional measure of JIA, establishing content validity 50. When tested for construct validity, JASI Part I scores correlated strongly with joint count (r = 0.51), grip strength (r = 0.64), hip synovitis (r = 0.64), timed walk and run (r = 0.83), and American College of Rheumatology functional class (r = 0.80) 51. Brown et al 32 examined the responsiveness of the JASI during a 4-year prospective study in which children with JIA were receiving intra-articular steroid injections and methotrexate treatment. The JASI demonstrated weak to moderate responsiveness to change, with an SRM of 0.36. Minimally important differences have not been established in the literature. The JASI is not appropriate for use in children aged 7 years or younger. Because of the time to administer, the need for training and special equipment, and its weak to moderate responsiveness, its use in clinical trials has been limited. The major strength of the JASI is that it examines function across a range of environments (eg, home, school, and play). The JASI was developed using rigorous methodology and involved patients, parents, clinicians, and teachers in the item generation. Limitations of the JASI include the length of time it takes for children to complete both portions of the JASI, the reliance on computer software for Part I, and although minimal, the cost for the software, which might deter some from using the JASI versus other valid and reliable assessments of functional status available for free. The JASI is also not appropriate for use in children aged 7 years or younger. JASI is a well-developed PF measure for children with arthritis. It provides a comprehensive picture of function across a spectrum of activities and allows the child to rank what the child perceives are the most important issues to change. Given its length and equipment/training needs, its use in daily clinical practice is limited. The POSNA PODCI, formerly known as the POSNA Pediatric Musculoskeletal Functional Health Questionnaire, assesses functional health outcomes, specifically musculoskeletal health (pain, participation in daily activities as well as vigorous activities) for both healthy children and adolescents and those with musculoskeletal conditions 52. The PODCI was developed as a patient-centered measure that could be used across a wide range of ages and musculoskeletal disorders for the clinical assessment of treatment effectiveness and musculoskeletal research. The PODCI has a child version to be completed by a parent/physician proxy and two surveys for adolescents (one that can be completed by a proxy and one that can be completed by self-report). For the purpose of this measure, a child is defined as being 2 to 10 years old, and an adolescent is between 11 and 18 years old. The PODCI includes the following subscales that examine upper extremity (UE) and PF, transfers and basic mobility (TBM), sports and PF (SPF), pain/comfort (PC), happiness (HAP), and a global function score (GFS). The original questionnaire included a treatment expectations scale 52, but this was excluded in later versions 53. The original questionnaire had a total of 114 items, and the average time to complete was approximately 15 minutes for the adolescent version and 10 to 12 minutes for parent versions. The newer version (PODCI) has 83 items and five subscales for the adolescent version and 86 for the parent versions. Within the five scales, the TBM has 11 items, the SPF has 21 items, the PC has three items, the UE has eight items, and the HAP subscale has five items. The response options vary, with some nominal items (yes/no) and some ordinal scales. The range for the ordinal scales is either a four-point or five-point scale, depending on the question. For the additional comorbidity scale, there is a list of diseases, and the proxy or adolescent responds to whether the child/adolescent has the condition, is receiving treatment for the condition, and whether it limits activity. For a few items, there is the option to select that the child is too young to do the activity. If this is selected for an item, the item is treated as missing and omitted from the score. The reference period is 1 week for all items except for one item that asks for recall over 1 year. There is no cost to use this questionnaire. The PODCI can be obtained from the American Academy of Orthopedic Surgeons (AAOS) website (http://www.aaos.org/research/outcomes/outcomes_peds.asp). The PODCI is a pen-and-paper survey. The survey provides clear instructions regarding the reference time period and response categories. A proxy (parent or guardian) completes the parent/child questionnaire for children aged 2 to 10 years. The parent/adolescent questionnaire can be completed either by the parent as a proxy or by the adolescent as self-report. A formula is provided and is used to compute a standardized score for each subscale using the raw score. In brief, all items in the subscales are converted so that the vales range from 0 to 5. Then, the scores for all items in a subscale are averaged for those items that are not missing. The mean of the subscales is multiplied by a constant value to generate a score range of 0 to 100 52. A minimum of 50% of the items in a scale must have a response for the scale score to be computed. When assessing a young child using the parent proxy, roughly 0% to 25% of items are often missing because of the inability to score the child in specific domains, including HAP and satisfaction. The GFS is calculated by taking the mean of the “mean of items” in the first four subscales. Comorbidity subscales and a comorbidity index, which computes an average of the responses, are calculated. The AAOS provides an excel file on its website to score the raw data. Each worksheet has the formula embedded for the specific subscale. Higher scores indicate more of the specific trait measured by the subscale. Haynes et al 53 used the questionnaire with 57 healthy children and 27 healthy adolescents and determined that a child scoring in the low 80s or lower is functioning at a different level than a healthy child. The AAOS has a large national database that uses the PODCI and provides access to normative data and enables analysis by age, sex, and comorbidity 54. Normative values exist for the PODCI 53, 55. To calculate a normative value for a patient, subtract the population standardized mean from the patient's score and then divide this value by the population SD and multiply the new value by 10 and add 50 to the final value. It takes approximately 15 minutes to complete 56. The administrative burden is low because no special equipment or training is needed. The scoring is calculated using the excel fil
Background Patient-reported outcomes (PROs) for chronic disease management can be integrated into the routine workflow by leveraging mobile technology. Objective The objective of our study was to describe the process of our quality improvement (QI) efforts using tablets for PRO collection in a busy, academic rheumatology practice to support a treat-to-target (TTT) approach for rheumatoid arthritis (RA) management. Methods Our QI team designed a process for routine collection of PROs for RA patients at the Arthritis Center, employing information technology and an electronic medical record (EMR) system. Patients received a tablet at the clinic check-in desk to complete the Routine Assessment of Patient Index Data 3 (RAPID3) survey, a validated RA PRO. RAPID3 scores were uploaded to the EMR in real time and available for use in shared decision making during routine office visits. Weekly data were collected on RAPID3 completion rates and shared with front desk staff and medical assistants to drive improvement. Patients in our patient family advisory council and focus groups provided informal feedback on the process. Results From May 1, 2017, to January 31, 2019, a total of 4233 RAPID3 surveys were completed by 1691 patients. The mean age of patients was 63 (SD 14) years; 84.00% (1420/1691) of the patients were female, and 83.00% (1403/1691) of the patients were white. The rates of RAPID3 completion increased from 14.3% (58/405) in May 2017 to 68.00% (254/376) in September 2017 and were sustained over time through January 2019. Informal feedback from patients was positive and negative, relating to the usability of the tablet and the way rheumatologists used and explained the RAPID3 data in shared decision making during the office visit. Conclusions We designed a sustainable and reliable process for collecting PROs from patients with RA in the waiting room and integrated these data through the EMR during office visits.
This release contains R scripts to analyze the links between adverse childhood experiences (ACEs), depression, functional dependence, and physical activity, using the SHARE panel data survey.
Physical activity is considered a strategy to improve health. This reasoning implies that physical inactivity is the reference behavior, which is not the case. In health, the gold standard is a state of complete physical, mental and social well-being.1 Physical inactivity involves a higher risk of cardiovascular disease2, hypertension3, diabetes2,4, cancer5, depression6, and obesity7. Moreover, 6 to 10% of all deaths from non-communicable diseases worldwide can be attributed to physical inactivity.8 Therefore, physically active individuals appear to be closer to the health gold standard than inactive individuals. Physical activity – not inactivity – should be the standard reference behavior. In this reversed framework, physical inactivity becomes a clinically significant disturbance in an individual's behavior, which is the definition of a behavioral disorder.9 Therefore, physical inactivity should be treated as such.
OBJECTIVESComplex treatment decisions in rheumatoid arthritis (RA) affect aspects of patients' physical, psychological and emotional well-being. We aimed to identify key attributes of patient-centered rheumatologic care for adults with RA through a qualitative study using patient focus group discussions in order to guide quality improvement efforts around optimisation of disease management.METHODSPatients with RA were recruited from a large academic medical centre rheumatology clinic and its affiliate sites over one month and allocated into focus groups led by an experienced moderator. Focus groups were held until thematic saturation was reached. Patients' responses were examined, categorised into themes, and codified independently by three reviewers. We extracted statements identifying common themes from transcripts.RESULTSThirteen patients with RA were recruited and allocated into three focus groups. Mean age was 59.1±10.1 years and average RA disease duration was 17.8 years. All participants had experience taking at least one disease-modifying anti-rheumatic drug (DMARD). Following reviewer analysis of patients' responses, six common themes about quality RA care were identified including: the role and use of self-management strategies, the clinical environment, the health care delivery process, attitudes towards medication, insurance and medication access issues, and the impact of disease on lifestyle.CONCLUSIONSThemes uncovered in focus group discussions related predominantly to the clinical environment and patient-provider communication. These preliminary results identified the need to incorporate operational aspects of health care delivery into our assessment of the RA patient experience and formed the basis of a RA quality improvement programme targeting medication optimisation.
Purpose: Fifteen to twenty percent of patients with a knee arthroplasty are dissatisfied with their replaced joint. This study aimed to describe patients' experiences of undergoing knee replacement surgery, both total- and unicompartmental knee replacement, and post-operative recovery, and to determine whether expectations of surgery were fulfilled. Methods: Using semi-structured interviews, this study describes twelve patients' experiences of undergoing knee replacement surgery in the prior year, their post-operative recovery, and whether their expectations of surgery were fulfilled. Qualitative thematic analysis was used. Results: A theme "striving for a silent knee", and two categories "the bumpy road to recovery" and "the presence of the future" were created. Some participants were not fully restored one year after surgery. Those still in pain had thoughts about the future, from hoping to improve, to accepting living with an aching knee. Those with no pain, did not think about their knee-the knee had become silent. Conclusions: Surgeons often inform patients that the recovery time after a knee arthroplasty is one year, which in light of this study, might be too short. We suggest that a follow-up after one year might identify those who need enhanced physical and psychological support to get the best possible outcome, whether it is to help patients accepting persistent symptoms or to continue striving towards a silent knee.
This study describes how patients with knee or hip osteoarthritis (OA), scheduled for arthroplasty, characterize their pain qualitatively and quantitatively and investigates whether differences exist in pain expression between younger and older patients, and between men and women. One hundred eight patients scheduled for a joint arthroplasty completed the Knee Injury and Osteoarthritis Outcome Score (KOOS) or Hip Disability and Osteoarthritis Outcome Score (HOOS) and a health-related quality of life question. Pain was assessed using the visual analogue scale (VAS), KOOS/HOOS and the Pain-o-Meter (POM) consisting of 12 sensory and 11 affective words (POM-Words). Frequency of analgesics use was assessed and preoperative radiographs were graded. ANOVA was used to test differences in pain expression with age (< 65 vs. ≥65 years), sex, and affected joint as independent factors. Patients < 65 years of age used more affective words (POM) and words with higher affective intensity (median scores 8 (3–39), 5.5 (2–27) respectively), than older patients, despite having less radiographically advanced OA. They also reported more symptoms (KOOS/HOOS) than older patients. However, pain ratings, as measured by VAS and KOOS/HOOS pain, did not differ between younger and older adults. Women reported more frequent analgesics use (45.7 and 26.5% respectively) and rated their pain higher than men (mean POM-VAS = 42 (SD 24) and 31 (SD 19); respectively). No differences existed between sexes for sensory or affective POM-Words, or radiographic grade of OA. With age and sex as independent factors, a significant difference between knee and hip OA remained for sensory POM-words intensity scores. Younger adults scheduled for arthroplasty expressed pain using more affective words and words with higher intensity and had less radiographically advanced OA than older adults. However, VAS and KOOS/HOOS pain subscales could not distinguish the difference in pain expression. Thus, the POM may be a valuable tool for assessment of pain.
Not all physical activity (PA) questionnaires (PAQ) gather information regarding PA intensity, duration, and modes and only a few were developed specifically for children. We assessed children’s comprehensibility of items derived from two published PAQs used in children along with three items designed to ascertain PA intensity in order to assess comprehensibility of items and identify response errors. We modified items to create a new PAQ for children (ASCeND). We hypothesized that children would have comprehension difficulties with some original PAQ items and that ASCeND would be easier to comprehend, and would improve recall and reporting of PA. For this qualitative study, we recruited 30 Swedish children [ages 10–16 years; mean age = 13.0 (SD = 1.8)]; median disease activity score = 4.5 (IQR 2.2–9.0); median disease duration = 5.0 (IQR 2.6–10.8) with juvenile idiopathic arthritis (JIA) from a children’s hospital-based rheumatology clinic. We conducted cognitive interviews to identify children’s comprehension of PAQ items. Interviews were audiotaped, transcribed, and independently analyzed. In phase one, 10 children were interviewed and items modified based on feedback. In phase two, an additional 20 children were interviewed to gather more feedback and further refine the modified items, to create the ASCeND. The median interview time was 41 min (IQR 36–56). In phase one, 219 comments were generated regarding directions for recording PA duration, and transportation use, walking, dancing, weight-bearing exercise and cardio fitness. Based on feedback we modified the survey layout, clarified directions and collapsed or defined items to reduce redundancy. In phase two, 95 comments were generated. Most comments related to aerobic fitness and strenuous PA. Children had difficulty recalling total walking and other activities per day. Children used the weather on a particular day, sports practice, or gym schedules to recall time performing activities. The most comments regarding comprehension were generated about the 3-item PA intensity survey, suggesting children had problems responding to intensity items. The newer layout facilitated recall of directions or efficiency in answering items. The 3-item intensity survey was difficult to answer. Sports-specific items helped children more accurately recall the amount of daily PA. The ASCeND appeared to be easy to answer and to comprehend.