Does follow-up really matter? A convergent mixed methods study exploring follow-up across levels of care in rehabilitation of patients with rheumatic and musculoskeletal diseases.

PURPOSE: To explore what patients with rheumatic and musculoskeletal diseases (RMDs) need and receive of follow-up care after specialized rehabilitation, and whether received follow-up is associated with health outcomes after 1 year. Further, to compare these findings with patients' experiences to improve the understanding of how follow-up takes place. METHODS: In a mixed methods study, patients received a rehabilitation programme designed to improve the continuity in rehabilitation across care levels. A total of 168 patients completed questionnaires, of which 21 were also interviewed. RESULTS: At discharge, most patients reported needs for follow-up. These needs were largely met within 1 year, mainly resulting from patients' initiatives to re-connect with previous contacts. The degree of received follow-up was not associated with goal attainment, quality of life, or physical function. Factors related to providers (competence, communication skills), context (delays, limited access to care), and patients (motivation, life situation, preferences) seemed to be decisive for the progress of the rehabilitation process over time. CONCLUSIONS: The results provide evidence that access to follow-up care is crucial to patients with RMDs. However, it also highlights several factors that may influence its impact. These results can be used to optimise design and implementation of future follow-up interventions.

Healthcare providers should take greater responsibility for creating continuity in rehabilitation across levels of care.Follow-up care should be adapted to patients' needs, goals, and preferences as regards content, timing, and mode of delivery.Follow-up should be linked to a rehabilitation plan for each patient to ensure continuity of care.More effective communication systems across service levels should be established.

Delivery of a quality improvement program in team-based rehabilitation for patients with rheumatic and musculoskeletal diseases: a mixed methods study.

PURPOSE: To investigate how a quality improvement program (BRIDGE), designed to promote coordination and continuity in rehabilitation services, was delivered and perceived by providers in routine practice for patients with rheumatic and musculoskeletal diseases. METHODS: A convergent mixed methods approach was nested within a stepped-wedge, randomized controlled trial. The intervention program was developed to bridge gaps between secondary and primary healthcare, comprising the following elements: motivational interviewing; patient-specific goal setting; written rehabilitation-plans; personalized feedback on progress; and tailored follow-up. Data from health professionals who delivered the program were collected and analyzed separately, using two questionnaires and three focus groups. Results were integrated during the overall interpretation and discussion. RESULTS: The program delivery depended on the providers' skills and competence, as well as on contextual factors in their teams and institutions. Suggested possibilities for improvements included follow-up with sufficient support from next of kin and external services, and the practicing of action and coping plans, standardized outcome measures, and feedback on progress. CONCLUSIONS: Leaders and clinicians should discuss efforts to ensure confident and qualified rehabilitation delivery at the levels of individual providers, teams, and institutions, and pay equal attention to each component in the process from admission to follow-up.

Quality in rehabilitation should be characterized by a continuous and coordinated process from goal setting to follow-up.To improve the quality, sufficient involvement of next of kin and external services is needed.Clinicians may need training to build confidence in motivational interviewing, action- and coping planning, feedback on progress, and follow-up.Leaders should organize education sessions, optimize schedules, insert standardized outcome measures, and facilitate collaboration across levels of care and services.

Bridging gaps across levels of care in rehabilitation of patients with rheumatic and musculoskeletal diseases: Results from a stepped-wedge cluster randomized controlled trial.

OBJECTIVE: To compare the effectiveness of a structured goal-setting and tailored follow-up rehabilitation intervention with existing rehabilitation in patients with rheumatic and musculoskeletal diseases. DESIGN: A pragmatic stepped-wedge cluster randomized trial. SETTING: Eight rehabilitation centers in secondary healthcare, Norway. PARTICIPANTS: A total of 374 adults with rheumatic and musculoskeletal diseases were included in either the experimental (168) or the control group (206). INTERVENTIONS: A new rehabilitation intervention which comprised structured goal setting, action planning, motivational interviewing, digital self-monitoring of goal progress, and individual follow-up support after discharge according to patients' needs and available resources in primary healthcare (the BRIDGE-intervention), was compared to usual care. MAIN MEASURES: Patient-reported outcomes were collected electronically on admission and discharge from rehabilitation, and after 2, 7, and 12 months. The primary outcome was patients' goal attainment measured by the Patient Specific Functional Scale (0-10, 10 best) at 7 months. Secondary outcome measures included physical function (30-s Sit-To-Stand test), health-related quality of life (EQ-5D-5L-index), and self-assessed health (EQ-VAS). The main statistical analyses were performed on an intention-to-treat basis using linear mixed models. RESULTS: No significant treatment effects of the BRIDGE-intervention were found for either primary (Patient Specific Functional Scale mean difference 0.1 [95% CI: -0.5, 0.8], p = 0.70), or secondary outcomes 7 months after rehabilitation. CONCLUSION: The BRIDGE-intervention was not shown to be more effective than existing rehabilitation for patients with rheumatic and musculoskeletal diseases. There is still a need for more knowledge about factors that can improve the quality, continuity, and long-term health effects of rehabilitation for this patient group.

Associations between quality of health care and clinical outcomes in patients with rheumatic and musculoskeletal diseases: a rehabilitation cohort study.

BACKGROUND: The quality of provided health care may be an important source of variation in rehabilitation outcomes, increasing the interest in associations between quality indicators (QIs) and improved patient outcomes. Therefore, we examined the associations between the quality of rehabilitation processes and subsequent clinical outcomes among patients with rheumatic and musculoskeletal diseases (RMDs). METHODS: In this multicentre prospective cohort study, adults with RMDs undergoing multidisciplinary rehabilitation at eight participating centres reported the quality of rehabilitation after 2 months and outcomes after 2, 7, and 12 months. We measured perceived quality of rehabilitation by 11 process indicators that cover the domains of initial assessments, patient participation and individual goal-setting, and individual follow-up and coordination across levels of health care. The patients responded "yes" or "no" to each indicator. Scores were calculated as pass rates (PRs) from 0 to 100% (best score). Clinical outcomes were goal attainment (Patient-Specific Functional Scale), physical function (30 s sit-to-stand test), and health-related quality of life (EuroQoL 5D-5L). Associations between patient-reported quality of care and each outcome measure at 7 months was analysed by linear mixed models. RESULTS: A total of 293 patients were enrolled in this study (mean age 52 years, 76% female). Primary diagnoses were inflammatory rheumatic disease (64%), fibromyalgia syndrome (18%), unspecific neck, shoulder, or low back pain (8%), connective tissue disease (6%), and osteoarthritis (4%). The overall median PR for the process indicators was 73% (range 11-100%). The PR was lowest (median 40%) for individual follow-up and coordination across levels of care. The mixed model analyses showed that higher PRs for the process indicators were not associated with improved goal attainment or improved physical function or improved health-related quality of life. CONCLUSIONS: The quality of rehabilitation processes was not associated with important clinical outcomes. An implication of this is that measuring only the outcome dimension of quality may result in incomplete evaluation and monitoring of the quality of care, and we suggest using information from both the structure, process, and outcome dimensions to draw inferences about the quality, and plan future quality initiatives in the field of complex rehabilitation. TRIAL REGISTRATION: The study is part of the larger BRIDGE trial (ClinicalTrials.gov NCT03102814 ).

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).

Patients' experiences with goal pursuit after discharge from rheumatology rehabilitation: A qualitative study.

PURPOSE/OBJECTIVE: To explore rehabilitation goals and experiences with goal striving in patients with rheumatic diseases after rehabilitation discharge. METHOD: Thirty-three patients with rheumatic diseases participated in goal-setting conversations with healthcare professionals during a 1-week rehabilitation programme. After discharge, they received four follow-up phone calls over a period of 5 months to support individual goal striving and self-management. A qualitative thematic analysis was conducted of the patients' rehabilitation goals, action plans and their statements about their experiences pursuing their goals at home after discharge. RESULTS: Analysis revealed that the experiences were related to five overarching themes: (1) things take time, (2) the importance of changing ways of thinking, (3) the pieces fall into place, (4) own health = own responsibility and (5) events outside of the plan. CONCLUSION: At discharge, the participants had set between one and five long-term goals, focussing mainly on having a healthier lifestyle and a better quality of life. The study showed that, to a large extent, the participants employed different self-management strategies after discharge from rehabilitation. In addition, the findings demonstrated that they experienced certain challenges when pursuing their goals. These challenges were related to health problems and changes in routine, such as holidays. Health professionals should explain to participants who pursue their own rehabilitation goals after discharge that changes in habit require conscious decision-making, priority setting and time, as well as the importance of having alternative plans for holidays and periods of disease exacerbations.

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.

Rehabilitation for patients with rheumatic diseases: Patient experiences of a structured goal planning and tailored follow-up programme.

OBJECTIVE: To explore the significance of the content of rehabilitation in terms of achieving a personal outcome, and to understand the significance of tailored follow-up interventions for individual efforts to prolong health behaviour change after rehabilitation. DESIGN: Semi-structured interviews with patients who had received an extended rehabilitation programme. All interviews were transcribed verbatim. A thematic analysis was applied. SUBJECTS: A purposeful sample of 18 patients with rheumatic diseases who had attended specialized multidisciplinary rehabilitation with an extended programme consisting of a self-help booklet, structured goal-setting talks and tailored follow-up calls based on motivational interviewing. RESULTS: Four overarching and interrelated themes were identified. Experienced Person-centred interventions represented a basis for the patients' motivation and personal outcomes. Confident self-management describes a new confident approach to exercise and illness management after rehabilitation with person-centred interventions. For many, this included reaching a different mindset, a change of illness perception. Continuity of the personal outcomes describes the importance of follow-up telephone calls to maintain the focus on goals and continued efforts. Building on established relationships and practising person-centred communication were essential. CONCLUSION: Tailoring of communication and rehabilitation interventions may be a premise for enhancing health behaviour, including a beneficial illness perception. Structured goal setting and follow-up telephone calls using motivational interviewing enhance motivation and may contribute to prolonged goal attainment.

Design and effects of supportive followup interventions in clinical care of patients with rheumatic diseases: a systematic review with meta-analysis.

OBJECTIVE: To describe the design and determine the clinical effects of supportive followup interventions delivered after or alongside nonsurgical treatment or rehabilitation of patients with rheumatic diseases. METHODS: We performed a systematic review of randomized controlled trials searching the Ovid Medline, Embase, Cinahl, AMED, PsychINFO, and Cochrane Library databases. Trials evaluating the effects of interventions designed to enhance and/or prolong the effects of rheumatic treatment or rehabilitation were included. Data on pain, depression, and physical function were pooled in separate meta-analyses, including analyses made to calculate short-term (0-2 months) and long-term (5-6 months after followup intervention) effects. Risk of bias was assessed by 2 independent reviewers. RESULTS: The searches generated 3,231 citations, of which 11 original trials were included. The results demonstrated a great variety in the design of followup interventions. We found moderate quality evidence for small effects on self-reported physical function, with standardized mean differences of -0.15 (95% confidence interval [95% CI] -0.30, 0.00; P = 0.05) at short term, and -0.18 (95% CI -0.37, 0.00; P = 0.05) at long-term followup. Moderate quality evidence showed no effect of supportive followup interventions on short-term depression. Low quality evidence showed no significant effects on short-term pain, and very low quality evidence showed no significant effects on long-term pain and depression. CONCLUSION: Currently there is no clear evidence concerning what constitutes an optimal design of supportive followup interventions. There is evidence that supportive followup can improve physical function in patients with rheumatic diseases, whereas no significant effects were found for pain and depression.

Evaluation of a structured goal planning and tailored follow-up programme in rehabilitation for patients with rheumatic diseases: protocol for a pragmatic, stepped-wedge cluster randomized trial.

BACKGROUND: Comprehensive rehabilitation, involving health professionals from various disciplines, is widely used as an adjunct to pharmacological and surgical treatment in people with rheumatic diseases. However, the evidence for the clinical- and cost-effectiveness of such interventions is limited, and the majority of those who receive rehabilitation are back to their initial health status six to 12 months after discharge. METHODS/DESIGN: To evaluate the goal attainment, health effects and cost-effectiveness of a new rehabilitation programme compared to current traditional rehabilitation programmes for people with rheumatic diseases, a stepped-wedge cluster randomized trial will be performed. Patients admitted for rehabilitation at six centres in the south-eastern part of Norway will be invited to participate. In the trial, six participating centres will switch from a control (current rehabilitation programme) to an intervention phase (the new rehabilitation programme) in a randomized order. Supported by recent research, the new programme will be a supplement to the existing programme at each centre, and will comprise four elements designed to enhance and support lifestyle changes introduced in the rehabilitation period: structured goal-planning, motivational interviewing, a self-help booklet and four follow-up telephone calls during the first five months following discharge. The primary outcome will be health-related quality of life and goal attainment, as measured by the Patient Generated Index directly before and after the rehabilitation stay, as well as after six and 12 months. Secondary outcomes will include self-reported pain, fatigue, a global assessment of disease activity and motivation for change (measured on 11-point numeric ratings scales), health-related quality of life as measured by the Short Form 36 Health Survey (SF-36) and utility assessed by the SF6D utility index.The main analysis will be on an intention to treat basis and will assess the clinical- and cost-effectiveness of the structured goal planning and tailored follow-up rehabilitation programme for patients with rheumatic diseases. DISCUSSION: The findings will constitute an important contribution to more cost-effective- and evidence-based rehabilitation services for people with rheumatic diseases. TRIAL REGISTRATION: ISRCTN91433175.

Restrictive pulmonary function is more prevalent in patients with ankylosing spondylitis than in matched population controls and is associated with impaired spinal mobility: a comparative study.

INTRODUCTION: Pulmonary involvement is a known manifestation in patients with ankylosing spondylitis (AS). However, previous studies have been based on small samples and the reported prevalence and associations with typical clinical features vary. The purpose of this study was to compare pulmonary function (PF) in patients with AS and population controls, and to study associations between PF and disease related variables, cardio-respiratory fitness and demographic variables in patients with AS. METHODS: In a cross-sectional controlled study, 147 AS patients and 121 controls underwent examinations, including demographic variables, laboratory (C-reactive protein (CRP), erythrocyte sedimentation rate (ESR)) and clinical measures (disease activity (AS disease activity score, ASDAS), physical function (Bath ankylosing spondylitis functional index, BASFI), spinal mobility (Bath ankylosing spondylitis metrology index, BASMI), chest expansion, cardio-respiratory fitness (peak oxygen uptake, VO(2peak) and pulmonary function test (PFT) (spirometry)). Cumulative probability plots were used to visualize associations between the ASDAS and BASMI scores and the corresponding forced vital capacity (FVC%, percentage of predicted value controlled for the influence of confounding factors) score for each patient. Univariate ANCOVAs were performed to explore group differences in PF adjusting for relevant variables, and a multiple regression model was used to estimate the explanatory power of independent variables (demographic, disease related, VO(2peak) on restrictive ventilatory impairment (FVC%). RESULTS: AS patients showed significantly lower PF values compared with controls, and significantly more patients were categorized with restrictive pattern (18% vs. 0%, P < 0.001). Cumulative probability plots showed significant associations between spinal mobility measures (BASMI) and FVC% for individual patients. BASMI, chest expansion and male gender contributed significantly and independently in a multiple regression model predicting the variation of FVC% in AS patients, whereas disease activity, physical function and VO(2peak) did not contribute significantly. The final model explained 45% of the variance in FVC% (P < 0.001). CONCLUSIONS: This study showed significantly impaired pulmonary function in the AS patients compared to controls and reference data, and demonstrated a clear relationship between reduced spinal mobility and restrictive PF in AS patients. The results support the assumption of an association between musculoskeletal limitations and restrictive respiratory impairment in AS, emphasizing the importance of maintaining spinal flexibility in the management of the disease. Further, patients with severely reduced spinal mobility should be referred for pulmonary function examination and relevant follow-up treatment.