Over the last few years, active participation in patients of health care has intensified internationally. In France, this has benefited from legal provisions to expand the public debate by including patients, to improve the participation of health actors and promote individual and collective rights of users of the health system. These provisions are called Health Democracy (HD). The collaboration between patient associations and health care professionals9 organizations is an example of HD, and has been implemented in France recently.
Objectives
To show a practical application of HD in rheumatology through collaborations between patient associations and the Rheumatology Society when dealing with recommendations for the management of chronic inflammatory rheumatism diseases (CIRD).
Methods
The French Society of Rheumatology (SFR) has developed in 2014 CIRD management recommendations for health professionals. Recommendations for rheumatoid arthritis (RA)1 and spondyloarthritis (SA)2 were thus developed by two separate groups. In the work described here, at the instigation of patient associations, working groups were established to develop patient versions of these management recommendations. Each working group comprised part of the initial working group completed by patients identified by the partner patient organization to achieve a numerical balance (patients/health professionals). A standardised methodology was applied to reword the recommendations in a language accessible to all. The work was carried out during a physical meeting then continued by exchanges of emails, under the coordination of a binomial associative representative /rheumatologist. The last step was a survey among a wider group of patients to ensure wider knowledge and acceptability.
Results
In the joint working groups, speaking out was balanced between the various stakeholders. An adaptation to lay language was collectively achieved without distorting the medical meaning of the inital recommendations. The SA group shortened the final recommendations whereas the RA group maintained the initial number of recommendations. Surveys for satisfaction were high. These surveys were also useful for dissemination and implementation of recommendations.
Conclusions
This is the first time that recommendations for the CIRD management published by the SFR are adapted into lay versions by patients, for patients. The active participation of patients and their equitable representation is an example of Health Democracy. Far from being passive or taken, the patient becomes actor and contributor in improving the management of his peers. The dissemination of these recommendations by including patient organizations, will allow empowerment of patients who have to work with their doctor in the dynamic of shared decision.
References
Gaujoux-Viala C, Gossec L et al. Recommendations of the French Society for Rheumatology for managing rheumatoid arthritis. Joint Bone Spine. 2014;81(4):287-97. Wendling D et al. Recommendations of the French Society for Rheumatology on the everyday management of patients with spondyloarthritis. Joint Bone Spine. 2014 Jan;81(1):6-14.
The French Society of Rheumatology developed recently recommendations for the management of rheumatoid arthritis (RA) for a target population of health professionals [1]. Points emphasized in the 3 overarching principles and the 15 recommendations include shared decision making, treatment targets, tight control, first and second line disease-modifying drugs, biologics, glucocorticoids and dealing with remission. Patients are naturally very much impacted by management recommendations, in the context of shared decision-making.
Objectives
To extend the cooperation between rheumatologists and patients, by translating the recommendations into a language that can be easily understood by patients.
Methods
At the instigation of a patient association, 3 French patients with RA, 3 physicians who had initially developed the recommendations and one patient association representative attended a one-day meeting in September 2014. As a starting point the original recommendations were used [1]. A standardised approach to rephrase the recommendations was presented [2]. After intensive discussions the wording of each recommendation was adjusted, while maintaining the meaning. From October to December 2014, further refining of the wording was conducted by email exchange within the working group and each person was asked to indicate their level of agreement with the content of the recommendations (0-10 with 10 indicating full agreement). In January 2015, a survey was sent out to assess agreement and applicability of the recommendations in a wider group of patients and patient associations.
Results
The 3 overarching principles and the 15 recommendations were successfully translated into a patient-understandable version. The original text was changed in most cases. Among the patient partners, there was very high agreement with the proposed wordings (mean, 9.8±0.3). Assessment of agreement in a wider group is ongoing; preliminary results indicate high agreement; with the lowest agreement being with the recommendation stating "biologics should be given preferably with methotrexate as comedication".
Conclusions
The French recommendations were successfully converted into a patient-understandable language version by a group of patients in collaboration with rheumatologists. This should improve the shared decision process in the management of RA. This project will also allow further dissemination and evaluation of the recommendations in France.
References
Gaujoux-Viala C, Gossec L et al. Recommendations of the French Society for Rheumatology for managing rheumatoid arthritis. Joint Bone Spine. 2014;81(4):287-97. de Wit MP,et al. Treating rheumatoid arthritis to target: the patient version of the international recommendations. Ann Rheum Dis. 2011;70(6):891-5.
Disclosure of Interest
L. Gossec Consultant for: Abbvie, Celgene, Centocor, Chugai, Janssen, MSD, Novartis, Pfizer, Roche, UCB, C. Gaujoux-Viala: None declared, R. Guastalli: None declared, K. Ouladchrif: None declared, J. Janicki: None declared, B. Combe Consultant for: Abbvie, BMS, Celgene, Chugai, Janssen, MSD, Novartis, Pfizer, Roche, UCB, S. Tropé: None declared
Background: Investigation into the role of vitamin D in fractures in the pediatric population has been limited despite estimates that as many as 70% of American children have inadequate vitamin D levels (measured as 25-hydroxyvitamin D, 25(OH)D). The purpose of this study was to evaluate vitamin D’s role in pediatric fracture risk by comparing 25(OH)D between fractured and nonfractured cohorts. Methods: A 12-month prospective case-control study was completed in children aged 2 to 14 years in an urban, academic hospital. Sixty fractured children requiring conscious sedation or general anesthesia for management were compared with 60 nonfractured controls. All participants and their guardians were surveyed for low bone density risk factors, and total serum 25(OH)D was measured. Statistical analysis was completed using Student t tests, χ 2 tests, analysis of variance, and logistic regression models. Results: After controlling for age and daily sun exposure, lower total serum 25(OH)D was associated with higher fracture risk (odds ratio=0.94; 95% confidence interval, 0.90-0.99; P =0.023). In the fractured cohort, 6 (10%) patients were deficient (25(OH)D<20 ng/mL) and 33 (55%) were insufficient (25(OH)D, 20 to 30 ng/mL). Of the nonfractured population, 8 (13%) were deficient and 19 (32%) were insufficient. There were more insufficient patients in the fractured than in the nonfractured cohort (odds ratio=2.99; 95% confidence interval, 1.27-7.0; P =0.037). Conclusions: Higher fracture incidence is associated with serum 25(OH)D insufficiency. Hypovitaminosis D may place the pediatric population at increased risk for fracture. Consideration should be given to routine assessment of vitamin D in fractured children. Level of Evidence: Prognostic level III—prospective case-control study.
Purpose: The American Academy of Pediatrics (AAP) recommends physical examination screening for developmental dysplasia of the hip (DDH) for all newborns at birth and again periodically at well baby visits every 2 months for the first 6 months of life. Despite these recommendations, dislocated hips still go undiagnosed past 6 months of age at which time treatment becomes more complex and challenging with additional operative procedures. Risk factors for late presentation, such as female sex, vertex birth, and normal delivery …
Understanding differences between types of study design (SD) and level of evidence (LOE) are important when selecting research for presentation or publication and determining its potential clinical impact. The purpose of this study was to evaluate interobserver and intraobserver reliability when assigning LOE and SD as well as quantify the impact of a commonly used reference aid on these assessments.Thirty-six accepted abstracts from the Pediatric Orthopaedic Society of North America (POSNA) 2021 annual meeting were selected for this study. Thirteen reviewers from the POSNA Evidence-Based Practice Committee were asked to determine LOE and SD for each abstract, first without any assistance or resources. Four weeks later, abstracts were reviewed again with the guidance of the Journal of Bone and Joint Surgery (JBJS) LOE chart, which is adapted from the Oxford Centre for Evidence-Based Medicine. Interobserver and intraobserver reliability were calculated using Fleiss' kappa statistic (k). χ2 analysis was used to compare the rate of SD-LOE mismatch between the first and second round of reviews.Interobserver reliability for LOE improved slightly from fair (k=0.28) to moderate (k=0.43) with use of the JBJS chart. There was better agreement with increasing LOE, with the most frequent disagreement between levels 3 and 4. Interobserver reliability for SD was fair for both rounds 1 (k=0.29) and 2 (k=0.37). Similar to LOE, there was better agreement with stronger SD. Intraobserver reliability was widely variable for both LOE and SD (k=0.10 to 0.92 for both). When matching a selected SD to its associated LOE, the overall rate of correct concordance was 82% in round 1 and 92% in round 2 (P<0.001).Interobserver reliability for LOE and SD was fair to moderate at best, even among experienced reviewers. Use of the JBJS/Oxford chart mildly improved agreement on LOE and resulted in less SD-LOE mismatch, but did not affect agreement on SD.Level II.
Introduction: A comparison of the success of the thoracolumbosacral orthosis (TLSO) and the Providence orthosis in the treatment of adolescent idiopathic scoliosis (AIS) using the new Scoliosis Research Society’s (SRS) Committee on Bracing and Nonoperative Management inclusion and assessment criteria for bracing studies. Methods: A retrospective study of brace patients with AIS between 1992 and 2004. We have used a custom TLSO (22 hour/day) and the Providence orthosis (8–10 hour/night) to control progressive curves. A total of 83 patients met the new inclusion criteria: 10 years of age and older at initiation of bracing; initial curve of 25 to 40 degrees; Risser sign 0–2; females, premenarchal or less than one year post menarchal; and no prior treatment. There were 48 patients in the TLSO group and 35 in the Providence group. The new SRS assessment criteria of effectiveness included the percentage of patients who had 5 degrees or less and 6 degrees or more of curve progression at maturity; the percentage of patients whose curve progressed beyond 45 degrees; the percentage of patients who had surgery recommended or undertaken; and a minimum of two years of follow-up beyond maturity in those patients who were felt to have been successfully treated. All patients are analyzed irregardless of compliance (“intent to treat”). Results: There were no significant differences in age at brace initiation, initial primary curve magnitude, gender, or initial Risser sign between the two groups. In the TLSO group, only 7 patients (15%) did not progress (5 degrees or less), while 41 patients progressed 6 degrees or more (85%), including 30 patients that exceeded 45 degrees. Thirty-eight patients (79%) ultimately required surgery. In the Providence group, 11 patients (31%) did not progress, while 24 patients (69%) progressed 6 degrees or more, including 15 patients that exceeded 45 degrees. Twenty-one patients (60%) required surgery. However, when the initial curve at initiation of bracing was 25 to 35 degrees, the results improved. Five of 34 patients (15%) in the TLSO group and 10 of 24 patients (42%) in the Providence group did not progress, while 29 patients (85%) and 14 patients (58%) progressed 6 degrees or more and 26 patients (76%) and 11 patients (46%) required surgery, respectively. Conclusions: Using the new SRS criteria, the Providence orthosis was more effective for avoiding surgery and preventing curve progression than the TLSO when the primary initial curves were 35 degrees or less. However, the overall success in both groups was inferior to previous studies. Our results raises the question of the effectiveness of orthotic management in AIS and supports the need for a multicenter, randomized study utilizing the new SRS inclusion and assessment criteria.
