Search

Aurélie Untas,1 Christel Vioulac,1 Emilie Boujut,1 Caroline Delannoy,2 Didier Poivret,3 Anne-Christine Rat,4,5 Catherine Beauvais,6 Janine-Sophie Giraudet Le Quintrec7 1Université de Paris, LPPS, Boulogne-Billancourt F-92100, France; 2Private Practice, Paris, France; 3Rheumatology Department, Hospital of Metz-Thionville, Metz, France; 4Université de Lorraine, Paris Descartes University, EA 4360 APEMAC, Nancy, France; 5Centre Hospitalier Universitaire Caen Normandie, Caen, France; 6Rheumatology Department, Saint Antoine Hospital, Assistance Publique Hôpitaux de Paris, Paris, France; 7Rheumatology Department, Cochin Hospital, Assistance Publique Hôpitaux de Paris, Paris, FranceCorrespondence: Aurélie UntasLaboratory of Psychopathology and Health Processes EA 4057, Université de Paris, 71 Avenue Edouard Vaillant, Boulogne-Billancourt 92100, FranceTel +33 176533050Email aurelie.untas@u-paris.frPurpose: The main aim of patient education is to maintain or improve quality of life. It is mostly focused on patients even if families might be included. The aim of this study was to explore patients’ and relatives’ perceptions and experiences about the role of relatives in disease management in chronic inflammatory arthritis in order to provide insight into how patient education programs might include relatives.Methods: Individual semi-structured interviews were conducted with 20 patients (13 with polyarthritis; 7 with spondyloarthritis) and one of their relatives (N=40). A thematic analysis following an inductive approach was carried out using the QDA-Miner Software (inter-coder agreement 0.7).Results: The analysis revealed three relevant themes. The first was their perception of relatives’ general roles, which included technical skills, knowledge about the disease and interpersonal skills. The other two themes dealt with their specific relationship: the dyad relationship (including the usual relationship and in the context of the disease) and the help relationship (including practical assistance and emotional help).Conclusion: The results show the wide-ranging role of relatives in practical and emotional support, the complexity of patient-relative interactions regarding requests for help, their relationship and ability to share difficulties. This study gives indications about how to include relatives in TPE programs and emphasizes the importance of developing interventions for patient-relative dyads regarding the practical and emotional management of the disease, as well as interactions concerning help. Those interventions should enhance patients and relatives’ quality of life.Keywords: caregivers, patient education, disease management, chronic arthritis, quality of life, partner

Objective: The aim of this study is to point out the recent characteristics and developments of therapeutic patient education (TPE) in rheumatoid arthritis through an analysis of the international articles published from 2003 to 2008.Method: Studies were selected from major databases, using the following keywords: rheumatoid arthritis, patient education, self-management, programs. Three authors independently reviewed each study and selected the data using the patient education research categories (PERC). Articles consistently related to patient education in rheumatoid arthritis (37 among 109) were included.Results: The selected articles have been published in 23 scientific journals. The majority of them concern TPE for adult patients with rheumatoid arthritis. TPE is delivered in several structures and group education represents the most widespread educational strategy mainly provided by a multiprofessional team. There are two types of programs: educational, aiming to make the patient competent in the daily management of his disease and psycho-educational ones, aiming to improve coping and to decrease stress, anxiety and depression. Twenty-eight studies show the effectiveness of TPE on the basis of bio-clinical, educational, psychosocial, economical criteria, but the majority of these positive results are observed in short-term. Barriers to TPE are linked to cultural and socio-economic factors.Conclusion: A large number of studies still assess the positive effects of TPE. Nowadays, the problems of short-term efficacy of TPE and the cultural and social barriers to this practice have become a major issue for research. [ABSTRACT FROM AUTHOR]

Objectives: To guide Therapeutic Patient Education (TPE) programs to improve patients' and spouses' perceived health, we aimed to analyze the effect of the spouse health state and patient-spouse relationship on functional impairment, mental health and self-efficacy of patients with RA or SpA., Methods: In this observational cross-sectional study, inclusion criteria were age≥18years and diagnosis of RA or SpA. The outcome criteria were functional impairment and mental health measured by the Medical Outcomes Study Short-Form 12-item version (SF-12-MCS); mental health measured by the General Health Questionnaire (GHQ-12); and self-efficacy by the General Self-Efficacy Scale (GSE Scale). Caregiver-patient relationship was assessed by the Personal Assessment of Intimacy in Relationships (PAIR) questionnaire and the Dyadic Adjustment Scale (DAS); social support by the Social Support Questionnaire-6 and spousal burden by the Zarit questionnaire., Results: A total of 88 patient-spouse couples were included. Patients were mostly female (n=68, 77%), with mean age 59 (SD 12.6) years; 69% had RA. On bivariate analyses, only spousal burden was associated with patients' functional impairment. Patients' mental health was associated with satisfaction with social support and the dyad relationship. Self-efficacy of patients was associated with spousal burden, satisfaction with social support, spousal anxiety/depression and the dyad relationship. On multivariate analysis, improved mental health and perceived self-efficacy of patients were associated with spousal satisfaction with social support (Beta=0.8, P=0.1 with GHQ-12) good communication in the couple (Beta=0.5, P=0.04 with SF-12-MCS and Beta=0.4, P=0.04 with GSE Scale) and low spousal-assessed burden (Beta=-0.2, P=0.003 with GSE Scale)., Conclusion: This study has identified potential focus for intervention. It has highlighted the importance of recognizing the role of couple communication (experiencing an open and fluent exchange of ideas) in the patient's mental health and self-efficacy but also perceived satisfaction with social support of both members of the couple on the patient's mental health., (Copyright © 2020 Société française de rhumatologie. Published by Elsevier Masson SAS. All rights reserved.)

Objective: To explore how patients and relatives experience and talk together about their life with inflammatory arthritis., Design: Qualitative research., Setting: A convenience sample was used. Participants were recruited in seven rheumatology departments in France., Participants: Patients with rheumatoid arthritis or spondyloarthritis, agreeing to participate in the study with a relative, age at least 18 years., Data Collection and Analysis: Two psychologists conducted face-to-face interviews with 20 patient-relative dyads (40 individuals). A thematic analysis followed a general inductive approach., Results: Saturation was reached after interviews with 20 dyads. The analysis revealed four main themes: (a) disease 'lived' together: a new role for the relative (providing help in physical tasks, emotional support, acting as a driving force, having a role in medical care) and communication around the disease (not focusing on the disease); (b) impact of the disease on the relationship; (c) social impact of the disease on the dyad (social isolation); (d) difficulties and needs of the relative (need to better know the disease)., Conclusion: This study has highlighted the importance of recognizing the role of the relative in the management of inflammatory arthritis disease, especially when medical decisions are shared with professionals. A joint approach to treatment is a basis for coping with the disease. This approach supposes (a) discussions about relatives' new roles to clarify them, (b) patients' and relatives' communication skills and (c) a good understanding of each other, which can be improved by providing information on the disease and coping strategies for both the patient and the relative., (© 2019 The Authors Health Expectations published by John Wiley & Sons Ltd.)

Acro-osteolysis is not uncommon and occurs in several conditions. Additional clinical and paraclinical findings and sometimes the performance of molecular tests can help to clarify the diagnosis. Here, we report the case of a 36-year-old woman who was referred to our department because of acute pain in the extremity of the left index finger. However, subsequent clinical examination also revealed short digits with pseudo-clubbing related to acro-osteolysis. Furthermore, severe osteoporosis, a moderate dysmorphic face, joint hypermobility, biological variables within normal ranges and her clinical history led us to consider the diagnosis of Hajdu-Cheney syndrome. Molecular analysis confirmed the diagnosis with the identification of a mutation in the NOTCH2 gene. The patient received bisphosphonate therapy, which resulted in some clinical and biological improvement 12 months later., (Copyright © 2015 Société française de rhumatologie. Published by Elsevier SAS. All rights reserved.)

Objective: To evaluate the effect on health and functional status of an 8-week group-education program for rheumatoid arthritis (RA) in addition to usual medical care., Methods: All consecutive inpatients and outpatients with RA (ACR criteria) were asked to participate in this randomized, prospective, controlled trial. The educational intervention consisted of 8 weekly ambulatory sessions, each lasting 6 hours. Followup was undertaken after 1 year. The primary criterion for judging effectiveness was the Health Assessment Questionnaire (HAQ) score; secondary criteria consisted of coping, medical knowledge, patient global satisfaction, and quality of life scores before the intervention and after 1 year., Results: We asked 1242 inpatients and outpatients to participate in the study: 208 (16.75%) agreed (104 in each group). At baseline, there was no statistically significant difference between the 2 groups. After 1 year, no statistically significant difference was observed between the 2 groups in change in HAQ score: -0.04 +/- 0.46 (education group) vs -0.06 +/- 0.47 (control group) (p = 0.79). Statistically significant differences were found in 3 domains: patient coping (-1.22 +/- 5.55 vs -0.22 +/- 3.81; p = 0.03), knowledge (3.42 +/- 4.73 vs 0.73 +/- 3.78; p < 0.0001), and satisfaction (10.07 +/- 11.70 vs 5.72 +/- 13.77; p = 0.02), all of which were better for the group attending the education sessions., Conclusion: Despite improvements in patient coping, knowledge, and satisfaction, the education program was not found to be effective at 1 year. There may have been methodological problems relating to the sensitivity of questionnaires and patient selection, and tailored educational interventions should be considered.

The current trial compared patient education before total hip arthroplasty with the usual verbal information. A randomized, controlled 24-month prospective single-center study was done. Patients scheduled for a first elective total hip arthroplasty for primary hip osteoarthritis were enrolled. All patients were given the usual information and an information leaflet and completed a self-evaluation questionnaire (Spielberger State and Trait Anxiety Inventory). The patients were assigned randomly to two groups: Group 1 attended a collective multidisciplinary information session 2 to 6 weeks before surgery and the control group did not attend. All patients completed another State Anxiety Inventory just before surgery and then 1 and 7 days after surgery. One hundred patients were randomized. Forty-eight attended the collective information session. Patients receiving education were significantly less anxious just before surgery than patients in the control group, in linear regression after adjustment for gender, trait and state anxiety at baseline, depression score, and health assessment questionnaire score. They experienced less pain before surgery and were able to stand sooner. However, the trend toward lower anxiety scores was not statistically significant after surgery. Patient education decreases preoperative anxiety and pain in patients having hip surgery.

Background: Desmoid tumors are uncommon fibromatous tumors arising from musculoaponeurotic tissue characterized by spindle cell fibroblast and myofibroblast proliferation. The cause is unknown (trauma, hormonal factors, genetic anomaly...). Locally invasive, they tend to recur increasing morbidity or even mortality., Case Report: Stiff shoulder resulting from blockage of the scapulothoracic articulation was the inaugural sign. Three-phase bone scintigraphy demonstrated early uptake in the soft tissue in contact with the scapula. Magnetic resonance imaging and biopsy confirmed the diagnosis of desmoid tumor. Complete resection was performed. No adjuvant radiotherapy nor hormone treatment were given since no antiestrogen receptor antibodies were identified on the surgical specimen., Discussion: The clinical manifestation (stiff shoulder) and the scapular localization observed in this case are unusual for desmoid tumors. Initially tendinopathy of the shoulder, acromio-clavicular arthropathy and capsular retraction of the shoulder joint had been entertained. Early diagnosis and wide surgical resection are indicated in desmoid tumors.

This prospective study was conducted to evaluate the short- and medium-term impact of the outpatient education sessions that have been available at the Cochin Teaching Hospital since 1992. Each patient was asked to complete a ten-item anonymous questionnaire at the beginning of the education session (evaluation 0), immediately after the session (evaluation 1), after six months (evaluation 2) and after 12 months (evaluation 3). Mean numbers of correct answers per patient were calculated. Eight education sessions were evaluated (osteoarthritis, osteoporosis, rheumatoid arthritis, back pain, conservative treatments, surgical treatments, low-calorie diets and high-calcium diets). One hundred twenty-four patients completed the first two questionnaires, 94 (75.80%) completed the six-month questionnaire and 75 (60.5%) completed the 12-month questionnaire. Mean numbers of correct answers were as follows: 5.7 before the session, 7.3 after the session (p = 0.0001), 7.2 after six months (p = 0.0001), and 7.9 after 12 months (p = 0.0001). These results demonstrate that the education sessions significantly improved patient knowledge in the short and medium term. Their impact on quality of life is being evaluated.

A case of massive osteolysis (disappearing bone disease, phantom bone, Gorham's massive osteolysis) was observed in a young african man with two lesions of the femur. This is a very rare syndrome characterized by an acute spontaneous resorption of bone, without any sign of malignant or infectious disorder. The lesion may develop in any part of the skeleton, with extensive bone loss, but is benign. Bone is replaced by haemangiomatous tissue. The diagnosis lead on the association of clinical, radiological and histological signs. The pathogenesis is still unknown and the treatment remains controversial. Osteolysis stops after a few years, but this is unpredictable; in our case, we have proposed prosthetic replacement, associated with bone grafting and irradiation.

Disappearing bone disease is a rare syndrome, characterized by an idiopathic and spontaneous progressive resorption of bone, for which different etiologies must be considered. The classification of this disease is difficult; acro-osteolysis involves the phalanges or the carpus and tarsus. Massive osteolysis corresponds to diffuse multicentric cystic hemangiomatosis and Gorham and Stout's disease. We describe two cases of acro-osteolysis and one of Gorham and Stout's disease. The mechanism of disappearing bone disease remains unknown and no treatment has yet been found to stop its evolution.