(Un)disclosed. Disease disclosure in people living with rheumatic diseases: An exploratory study.

OBJECTIVE: Little is known about disease-related disclosure (DD) in patients with rheumatic musculoskeletal diseases (RMDs). We aim to investigate DD behaviors and to explore which socio-demographic, clinical and psychological factors play a role in this self-disclosure process among patients with RMDs. METHODS: A cross-sectional Italian nationwide study captured DD in RMDs in different contexts (workplace, family, friends, partner, social networks). An ad hoc survey was developed and disseminated by the Patients' Association ALOMAR ODV (Lombard Association for Rheumatic Diseases) between June and July 2020. Patient demographics, clinical data, and questionnaires assessing anxiety, depression, anticipated stigma, patient health engagement, perceived social support, and perceived general health status were collected. RESULTS: There were 376 rheumatic patients who completed the survey. There were 73.9% of the participants who talk to others about their RMD "sometimes"; 18.7% disclose their RMD "always/very often", while 7.4% "never" talk about their RMD. A significant association was detected between DD and both perceived visibility (P = .04) and psychological support (P = .01). Moreover, participants who never/sometimes disclose their RMD reported significantly lower scores in the "Total" Social Support (P < .01) and in the "Friends" subscale (P < .001) compared to others. Psychological support and the "Friends" subscale were the only significant predictors of DD (both P = .002). CONCLUSIONS: The majority of RMD patients disclosed their disease "sometimes". The DD behavior is not associated with any specific demographic or clinical variables. Further research on the subject might help to foster better DD decision-making processes for rheumatic patients in different contexts of daily life.

A quality indicator set for rehabilitation services for people with rheumatic and musculoskeletal diseases demonstrates adequate responsiveness in a pre-post evaluation.

BACKGROUND: Quality of care is gaining increasing attention in research, clinical practice, and health care planning. Methods for quality assessment and monitoring, such as quality indicators (QIs), are needed to ensure health services in line with norms and recommendations. The aim of this study was to assess the responsiveness of a newly developed QI set for rehabiliation for people with rheumatic and musculoskeletal diseases (RMDs). METHODS: We used two yes/no questionnaires to measure quality from both the provider and patient perspectives, scored in a range of 0-100% (best score, 100%). We collected QI data from a multicenter stepped-wedge cluster-randomized controlled trial (the BRIDGE trial) that compared traditional rehabilitation with a new BRIDGE program designed to improve quality and continuity in rehabilitation. Assessment of the responsiveness was performed as a pre-post evaluation: Providers at rehabilitation centers in Norway completed the center-reported QIs (n = 19 structure indicators) before (T1) and 6-8 weeks after (T2) adding the BRIDGE intervention. The patient-reported QIs comprised 14 process and outcomes indicators, measuring quality in health services from the patient perspective. Pre-intervention patient-reported data were collected from patients participating in the traditional program (T1), and post-intervention data were collected from patients participating in the BRIDGE program (T2). The patient groups were comparable. We used a construct approach, with a priori hypotheses regarding the expected direction and magnitude of PR changes between T1 and T2. For acceptable responsivess, at least 75% of the hypotheses needed to be confirmed. RESULTS: All eight participating centers and 82% of the patients (293/357) completed the QI questionnaires. Responsiveness was acceptable, with 44 of 53 hypotheses (83%) confirmed for single indicators and 3 of 4 hypotheses (75%) confirmed for the sum scores. CONCLUSION: We found this QI set for rehabilitation to be responsive when applied in rehabilitation services for adults with various RMD conditions. We recommend this QI set as a timely method for establishing quality-of-rehabilitation benchmarks, promoting important progress toward high-quality rehabilitation, and tracking trends over time. TRIAL REGISTRATION: The study is part of the larger BRIDGE trial, registered at ClinicalTrials.gov (Identifier: NCT03102814).

A quality indicator set for use in rehabilitation team care of people with rheumatic and musculoskeletal diseases; development and pilot testing.

BACKGROUND: Systems for monitoring effectiveness and quality of rehabilitation services across health care levels are needed. The purpose of this study was to develop and pilot test a quality indicator set for rehabilitation of rheumatic and musculoskeletal diseases. METHODS: The set was developed according to the Rand/UCLA Appropriateness Method, which integrates evidence review, in-person multidisciplinary expert panel meetings and repeated anonymous ratings for consensus building. The quality indicators were pilot-tested for overall face validity and feasibility in 15 specialist and 14 primary care rehabilitation units. Pass rates (percentages of "yes") of the indicators were recorded in telephone interviews with 29 unit managers (structure indicators), and 164 patients (process and outcome indicators). Time use and participants' numeric rating of face validity (0-10, 10 = high validity) were recorded. RESULTS: Nineteen structure, 12 process and five outcome indicators were developed and piloted. Mean (range) sum pass rates for the structure, process and outcome indicators were 59%(84%), 66%(100%) and 84%(100%), respectively. Mean (range) face validity score for managers/patients was 8.3 (8)/7.9 (9), and mean answering time was 6.0/5.5 min. The final indicator set consists of 19 structure, 11 process and three outcome indicators. CONCLUSION: To our knowledge this is the first quality indicator set developed for rehabilitation of rheumatic and musculoskeletal diseases. Good overall face validity and a feasible format indicate a set suitable for monitoring quality in rehabilitation. The variation in pass rates between centers indicates a potential for quality improvement in rheumatic and musculoskeletal rehabilitation in Norway.

Illness representations, pain and physical function in patients with rheumatic disorders: between- and within-person associations.

OBJECTIVES: Rehabilitation for patients with rheumatic diseases improves both illness representations (IR) and clinical outcomes such as pain and physical functioning (PF). However, it is unclear whether IR may affect and, in turn, are affected by pain and PF. In this study, we examined both between-person associations and within-person associations between IR and pain/PF over time on three measurement occasions. Furthermore, cross-lagged relationships were examined. DESIGN AND MAIN OUTCOME MEASURES: This secondary analysis is based on data from N = 186 patients with rheumatic diseases. Data on pain, PF and IR were assessed using self-report questionnaires at the beginning, the end and three months after a 3-week inpatient rehabilitation. METHODS: To separate between- and within-person level, data were analysed using random-intercept cross-lagged panel models. RESULTS: On both the between-person level (r = |0.21| - |0.44|) and the within-person level (r = |0.15| - |0.46|), pain and PF were related to cognitive and emotional IR. In addition, we found within-person bidirectional cross-lagged effects between emotional IR and PF. CONCLUSION: IR show complex relationships with pain and PF. Improving PF might improve subsequent illness-related emotional distress and vice versa.

Regional Rheumatic Disorders and Rehabilitation in Older Adults: An Update.

Musculoskeletal problems are the most frequently reported complaints among older adults living in the community. The impact of the aging process on skeletal muscles and joints can have a profound effect on the ability of individuals to function. This article reviews the rehabilitation medicine approach to the evaluation of older adults with regional rheumatic disorders and the rehabilitation medicine considerations for clinical intervention. Future research is required to gain a greater understanding of the subject matter and its impact on the provision of care and patients' quality of life.

Structured Goal Planning and Supportive Telephone Follow-up in Rheumatology Care: Results From a Pragmatic, Stepped-Wedge, Cluster-Randomized Trial.

OBJECTIVE: To evaluate patient-reported health effects of an add-on structured goal-planning and supportive telephone follow-up rehabilitation program compared with traditional rehabilitation programs in patients with rheumatic diseases. METHODS: In this pragmatic stepped-wedge, cluster-randomized, controlled trial, 389 patients with rheumatic diseases recruited from 6 rehabilitation centers received either traditional rehabilitation or traditional rehabilitation extended with an add-on program tailored to individual needs. The add-on program comprised a self-management booklet, motivational interviewing in structured individualized goal planning, and 4 supportive follow-up phone calls after discharge. Data were collected by questionnaires on admission and discharge from rehabilitation stay, and at 6 months and 12 months after discharge. The primary outcome was health-related quality of life (HRQoL) measured by the Patient Generated Index (range 0-100, where 0 = low). Secondary outcomes included patient-reported health status, self-efficacy, pain, fatigue, global disease activity, and motivation for change. The main statistical analysis was a linear repeated measures mixed model performed on the intent-to-treat population using all available data. RESULTS: A significant treatment effect of the add-on intervention on HRQoL was found on discharge (mean difference 3.32 [95% confidence interval 0.27, 6.37]; P = 0.03). No significant between-group differences were found after 6 or 12 months. Both groups showed positive changes in HRQoL following rehabilitation, which gradually declined, although the values remained at higher levels after 6 and 12 months compared with baseline values. CONCLUSION: The add-on program enhanced the short-term effect of rehabilitation with respect to patient-specific HRQoL, but it did not prolong the effect as intended.

Aiming for a healthier life: a qualitative content analysis of rehabilitation goals in patients with rheumatic diseases.

PURPOSE: To explore and describe rehabilitation goals of patients with rheumatic diseases during rehabilitation stays, and examine whether goal content changed from admission to discharge. METHOD: Fifty-two participants were recruited from six rehabilitation centers in Norway. Goals were formulated by the participants during semi-structured goal-setting conversations with health professionals trained in motivational interviewing. An inductive qualitative content analysis was conducted to classify and quantify the expressed goals. Changes in goal content from admission to discharge were calculated as percentage differences. Goal content was explored across demographic and contextual characteristics. RESULTS: A total of 779 rehabilitation goals were classified into 35 categories, within nine overarching dimensions. These goals varied and covered a wide range of topics. Most common at admission were goals concerning healthy lifestyle, followed by goals concerning symptoms, managing everyday life, adaptation, disease management, social life, and knowledge. At discharge, goals about knowledge and symptoms decreased considerably, and goals about healthy lifestyle and adaptation increased. The health profession involved and patient gender influenced goal content. CONCLUSIONS: The rehabilitation goals of the patients with rheumatic diseases were found to be wide-ranging, with healthy lifestyle as the most prominent focus. Goal content changed between admission to, and discharge from, rehabilitation stays. Implications for rehabilitation Rehabilitation goals set by patients with rheumatic diseases most frequently concern healthy lifestyle changes, yet span a wide range of topics. Patient goals vary by gender and are influenced by the profession of the health care worker involved in the goal-setting process. To meet the diversity of patient needs, health professionals need to be aware of their potential influence on the actual goal-setting task, which may limit the range of topics patients present when they are asked to set rehabilitation goals. The proposed framework for classifying goal content has the capacity to detect changes in goals occurring during the rehabilitation process, and may be used as a clinical tool during goal-setting conversations for this patient group.

Managing rheumatic and musculoskeletal diseases - past, present and future.

Progress in rheumatology has been remarkable in the past 70 years, favourably affecting quality of life for people with rheumatic and musculoskeletal diseases. Therapeutics have advanced considerably in this period, from early developments such as the introduction of glucocorticoid therapy to the general use of methotrexate and other disease-modifying agents, followed by the advent of biologic DMARDs and, most recently, small-molecule signalling inhibitors. Novel strategies for the use of such agents have also transformed outcomes, as have multidisciplinary nonpharmacological approaches to the management of rheumatic musculoskeletal disease including surgery, physical therapy and occupational therapy. Breakthroughs in our understanding of disease pathogenesis, diagnostics and the use of 'big data' continue to drive the field forward. Critically, the patient is now at the centre of management strategies as well as the future research agenda.

[Orthoses and assistive devices in rheumatology : Prevention of disability, support of residual function]. / Hilfsmittel in der Rheumatologie : Einschränkungen vorbeugen, Restfunktionen unterstützen.

Due to the frequent presence of comorbidities in patients suffering from rheumatism with increased perioperative risk factors, conservative treatment is often needed. Besides pharmacological treatment, physiotherapy and occupational therapy, a variety of orthoses are available depending on the individual indications. They can be used to stabilize or support joints, limit the range of motion, prevent unphysiological movements or provide relief for affected limbs. In order to choose the right kind of orthosis, the physician should know the underlying cause of disease. Furthermore, for patients with rheumatism many devices are available for daily living that use ergonomic handles or improved leverage effects to compensate for the often severe limitations and to improve the quality of life.

Home tele-rehabilitation for rheumatic patients: impact and satisfaction of care analysis.

Introduction In this paper, we evaluated patients' perspectives on the use of a system for home tele-rehabilitation, designed for subjects with low computer literacy suffering hand impairment due to rheumatic diseases. Methods After a clinical trial assessing device effectiveness, the Psychosocial Impact of Assistive Devices Scale (PIADS), Quebec User Evaluation of Satisfaction with Assistive Technology (QUEST) and Individually Prioritised Problem Assessment (IPPA) questionnaires were administered to evaluate the system's impact on each patient's life, and the results were correlated with clinical indices. Patients were asked to continue self-administered rehabilitation with common objects. One year later, a semi-structured telephone interview gathered data on their experience. Results The system received a positive QUEST score (4.5 ± 0.3) and a modest PIADS score (0.84 ± 0.8) due to the small impact on adaptability and self-esteem. The IPPA (3.7 ± 3.4) revealed improvement in the ability to perform tasks considered important, which was significantly correlated ( r = 0.60; p < 0.02) with the clinical Health Assessment Questionnaire (HAQ) index improvement. The interviews revealed a positive engagement effect, enhanced by the need to develop skills to be able to use the device (technological challenge) and by the perception of more attention by the medical staff. This may explain the significant dropout rate (80%) from the post-trial rehabilitation of the patients who used the device. Discussion The system was largely accepted by the patients. The results suggest that the need for information on their rehabilitation progress and the technological challenge deserves further study to make patients more autonomous in cases of continuous rehabilitation.

Health-related quality of life in patients with chronic rheumatic disease after a multidisciplinary rehabilitation regimen.

INTRODUCTION: Multidisciplinary rehabilitation has beneficial effects on health-related quality of life (HRQoL) in patients with chronic rheumatic diseases. However, whether this intervention benefits different age groups in women or men is largely unknown. PURPOSE: To investigate HRQoL in patients with chronic rheumatic disease after completion of a 3-week multidisciplinary treatment, with special focus on differences in effect between age and gender groups. METHOD: HRQoL was measured with SF-36. Mean scores for all SF-36 domains were compared before and after the 3-week regimen and again at 3-, 6-, and 12-month follow-ups. Multivariable linear regression models using generalized estimating equations to account for repeated measurement were employed. A weighting procedure to account for differential dropouts was applied. RESULTS: Three hundred fifty-six women and 74 men with chronic rheumatic disease were included. There were short-term improvements in all SF-36 domains irrespective of age or gender. These effects persisted for up to 1 year in the psychological, social, and energy domains for women under 50. We found no lasting effects for men; however, young men showed similar trends. CONCLUSION: Inpatient multidisciplinary rehabilitation improves short-term HRQoL in all patients. Younger women maintain these beneficial effects for up to 1 year. Additional intervention should be considered for elderly women and for men in order to sustain rehabilitation effects.

Rehabilitation needs approached by health professionals at a rheumatism hospital.

OBJECTIVE: The aim of the present study was to examine the characteristics of patients referred to occupational therapists (OTs), physiotherapists (PTs) and social workers (SWs) at a rehabilitation unit in a hospital specializing in rheumatology, and the rehabilitation needs that clinicians and patients agreed should be addressed in the encounters with the particular health professional groups. METHODS: Consecutive hospitalized patients at a rheumatism hospital were recruited by the health professionals. Questions about patient characteristics and rehabilitation needs were posed. Free-text responses to questions about rehabilitation needs were coded by the International Classification of Functioning, Disability, and Health (ICF). RESULTS: The patients varied considerably in age distribution, disease duration, disability level and diagnoses, and several patients had comorbidities. The rehabilitation needs classified under the component Body Function fell into the chapters: Sensory Functions and Pain (PTs), Functions of Cardiovascular System (PTs), Neuromusculoskeletal and Movement-Related Functions (OTs, PTs); under the Activity and Participation component, these were: General Tasks and Demands (OTs), Mobility (OTs), Self-Care (PTs), Interpersonal Interactions and Relationships (SWs) and Major Life Stress (SWs); and under the Environmental Factors component these were: Products and Technology (OTs) and Services, Systems and Politics (SWs). CONCLUSIONS: The patients were fairly heterogeneous. The needs identified in the encounters with the different professional groups fell into all three components of the ICF, and there was only a minor overlap between the health professionals at the chapter level of the ICF.

Regional Rheumatic Disorders and Rehabilitation in Older Adults.

Musculoskeletal problems are the most frequently reported complaints among older adults living in the community. The impact of the aging process on skeletal muscles and joints can have a profound effect on the ability of individuals with and without disabilities to function. This article reviews the rehabilitation medicine approach to the evaluation of older adults with regional rheumatic disorders, and the rehabilitation medicine considerations for clinical interventions. Future research considerations are encouraged in order to gain a greater understanding of the subject matter and its impact on the provision of care and patients' quality of life.

Involvement of the multidisciplinary team and outcomes in inpatient rehabilitation among patients with inflammatory rheumatic disease.

BACKGROUND: The last decades have for patients with inflammatory rheumatic diseases seen a shift towards more physically active rehabilitation programs, often provided as out-patients with less use of inpatient facilities. There is little research on which effect the multidisciplinary team has on health outcomes for patients with rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, and connective tissue disease. This study examined patient reported outcomes for patients with inflammatory rheumatic diseases receiving rehabilitation care as inpatients in departments of rheumatology, and studied how number of consultations with the multidisciplinary team affected these clinical outcomes. METHODS: Patients with inflammatory rheumatic diseases were included in a multi-center prospective observational study if rehabilitation was considered a focus during an inpatient stay at four departments of rheumatology. At admission, discharge, and after 3 and 6 months, 317 patients were assessed with patients reported outcomes (PRO) including health assessment questionnaire (HAQ), short-form 36 (SF-36), pain, fatigue, patient global assessment of disease activity, self-efficacy scales, rheumatoid arthritis disease activity index (RADAI), and SF-6D utility. Patients stated consultations with the multidisciplinary team. RESULTS: Improvements were short-lived, and at 6 months follow-up period only mental health, pain and utility remained improved with small effect sizes. Extensive involvement of health professionals was not associated with improved outcomes. CONCLUSIONS: Patients with inflammatory rheumatic disease receiving inpatient multidisciplinary rehabilitation had small and mainly short-term improvements in most PROs. High use of the multidisciplinary team did not enhance or preserve rehabilitation outcomes in inflammatory rheumatic conditions when admitted as inpatients.

Current Research in Outcome Measures for Pediatric Rheumatic and Autoinflammatory Diseases.

A rational management of children and adolescents with rheumatic and autoinflammatory diseases requires the regular assessment of the level of disease activity and of child health and well-being through the use of well-validated outcome measures. Ideally, such instruments should be simple and feasible and easily applicable in standard clinical practice. In recent years, a number of novel outcome measures have been developed and validated for use in pediatric patients with rheumatic and autoinflammatory illnesses. Furthermore, there has been an increased focus on the appraisal of child and parent perception of the disease impact. The new tools have markedly enlarged the spectrum of disorders and health domains that can be assessed in a standardized way. This progress will help to enhance the reliability of research studies and clinical trials. The aim of the present review is to provide an update of the recent advances in this field of research.