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.

Experiences of participating in return-to-work group programmes for people with musculoskeletal disorders: A focus group study.

PURPOSE: The present study aimed to explore the experiences of individuals with musculoskeletal disorders (MSDs) who had participated in return-to-work group programmes (RTW-GPs) and to assess whether the programmes had had an impact on their work disability. METHOD: Three focus group interviews and one individual interview were conducted involving 17 women (mean age = 47) with MSDs who had completed RTW-GPs. All interviews were audio-recorded, transcribed verbatim and analysed using thematic analyses. RESULTS: Participant experiences were categorised into three main themes: changed way of thinking, the importance of being able to work, and a changed lifestyle. The respondents said that participation in the RTW-GPs had enabled them to shift their focus from problems to opportunities. They had become more aware of strategies to enhance their energy levels and continue working. Several participants had reduced their work hours to achieve a better balance between work and daily life. Many participants had also changed their lifestyle habits, which had led to weight reduction, more energy and less pain. CONCLUSION: The study participants had attained a heightened awareness of what they could do to continue working. Many participants had introduced changes in their daily lives, with consequences for employment, social life and lifestyle. The findings suggest that RTW-GPs can help people with MSDs to remain in employment and prevent absenteeism.

Readability of patient information and consent documents in rheumatological studies.

BACKGROUND: Before participation in medical research an informed consent must be obtained. This study investigates whether the readability of patient information and consent documents (PICDs) corresponds to the average educational level of participants in rheumatological studies in the Netherlands, Denmark, and Norway. METHODS: 24 PICDs from studies were collected and readability was assessed independently using the Gunning's Fog Index (FOG) and Simple Measure of Gobbledygook (SMOG) grading. RESULTS: The mean score for the FOG and SMOG grades were 14.2 (9.0-19.0) and 14.2 (12-17) respectively. The mean FOG and SMOG grades were 12.7 and 13.3 in the Dutch studies, 15.0 and 14.9 in the Danish studies, and 14.6 and 14.3 in the Norwegian studies, respectively. Out of the 2865 participants, more than 57 % had a lower educational level than the highest readability score calculated in the individual study. CONCLUSIONS: As the readability level of the PICDs did not match the participants' educational level, consent may not have been valid, as the participants may have had a limited understanding of what they agreed to participate in. There should be more focus on the readability of PICDs. National guidelines for how to write clear and unambiguous PICDs in simple and easily understandable language could increase the focus on the readability of PICD.

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.

Validation of the educational needs assessment tool as a generic instrument for rheumatic diseases in seven European countries.

OBJECTIVES: To validate the educational needs assessment tool (ENAT) as a generic tool for assessing the educational needs of patients with rheumatic diseases in European Countries. METHODS: A convenience sample of patients from seven European countries was included comprising the following diagnostic groups: ankylosing spondylitis, psoriatic arthritis, systemic sclerosis, systemic lupus erythematosus, osteoarthritis (OA) and fibromyalgia syndrome. Translated versions of the ENAT were completed through surveys in each country. Rasch analysis was used to assess the construct validity of the adapted ENATs including differential item functioning by culture (cross-cultural DIF). Initially, the data from each country and diagnostic group were fitted to the Rasch model separately, and then the pooled data from each diagnostic group. RESULTS: The sample comprised 3015 patients; the majority, 1996 (66.2%), were women. Patient characteristics (stratified by diagnostic group) were comparable across countries except the educational background, which was variable. In most occasions, the 39-item ENAT deviated significantly from the Rasch model expectations (item-trait interaction χ(2) p<0.05). After correction for local dependency (grouping the items into seven domains and analysing them as 'testlets'), fit to the model was satisfied (item-trait interaction χ(2) p>0.18) in all pooled disease group datasets except OA (χ(2)=99.91; p=0.002). The internal consistency in each group was high (Person Separation Index above 0.90). There was no significant DIF by person characteristics. Cross-cultural DIF was found in some items, which required adjustments. Subsequently, interval-level scales were calibrated to enable transformation of ENAT scores when required. CONCLUSIONS: The adapted ENAT is a valid tool with high internal consistency providing accurate estimation of the educational needs of people with rheumatic diseases. Cross-cultural comparison of educational needs is now possible.

Effects of a one week multidisciplinary inpatient self-management programme for patients with fibromyalgia: a randomised controlled trial.

BACKGROUND: Self-management programmes (SMP) are recommended for patients with fibromyalgia. The purpose of this study was to evaluate effects of a one week multidisciplinary inpatient self-management programme on psychological distress, skills as a consumer of health services, self-efficacy, and functional and symptomatic consequences of fibromyalgia (FM). METHODS: A randomised controlled two-armed, assessor-blinded trial with three-week follow-up to evaluate SMP. Primary outcomes were the General Health Questionnaire (GHQ-20) and the Effective Musculoskeletal Consumer Scale (EC-17), while secondary outcomes included the Fibromyalgia Impact Questionnaire (FIQ) and Self-efficacy scales for pain, function and symptoms (ASES). RESULTS: 150 patients with FM were randomised to one week one SMP (n = 75) or to a waiting list control group (n = 75). Of these, 58 participants in the treatment group and 60 in the control group completed the study. At three weeks' follow up there was a significant difference in EC-17 (0-100) in favour of the treatment group (mean difference 4.26, 95 CI 0.8 to 7.7, p = 0.02). There were no differences between the groups for any of the other outcomes. CONCLUSION: This study shows that in patients with FM the SMP had no effect on psychological distress, functional and symptomatic consequences and self-efficacy, except for a small short-term effect on skills and behaviour that are important for managing and participating in health care (EC-17). Clinical Trials.gov Id: NCT01035125. TRIAL REGISTRATION: Clinical Trials.gov Id: NCT01035125.

'I have come here to learn how to cope with my illness, not to be cured': a qualitative study of patient expectations prior to a one-week self-management programme.

BACKGROUND: Self-management programmes (SMPs) have been developed to help patients with chronic rheumatic diseases to manage their health problems. Patients' expectations prior to treatment are important determinants of outcomes, and should therefore be identified, to ensure that interventions meet the participants' needs. The aim of the present study was to determine participant expectations with respect to a one-week inpatient SMP for those with fibromyalgia (FM) and rheumatoid arthritis (RA). METHODS: A qualitative study consisting of semi-structured interviews was used to explore the expectations of eight participants with FM and eight with RA. The data were analysed using thematic analysis. RESULTS: The findings show that the participants expected the SMP to be a turning point towards a better future and to empower them to assume more responsibility for their own health and self-care. They also expected the SMP to facilitate acceptance, help them to gain new knowledge and be a forum in which to share their experience. Participants who were employed assumed that participation in the SMP would help to ensure that they would continue in their jobs. CONCLUSIONS: This qualitative study indicated that identifying expectations prior to an SMP provides important information which has implications for the programme's implementation. Additional themes, such as acceptance of the illness and management of work, should also be included in the programmes and they should focus more on sharing experience.

Translation, data quality, reliability, validity and responsiveness of the Norwegian version of the Effective Musculoskeletal Consumer Scale (EC-17).

BACKGROUND: The Effective Musculoskeletal Consumer Scale (EC-17) is a self-administered questionnaire for evaluating self-management interventions that empower and educate people with rheumatic conditions. The aim of the study was to translate and evaluate the Norwegian version of EC-17 against the necessary criteria for a patient-reported outcome measure, including responsiveness to change. METHODS: Data quality, reliability, validity and responsiveness were assessed in two groups. One group comprising 103 patients received a questionnaire before and at the end of a self-management programme. The second group comprising 96 patients' received the questionnaire two weeks before and on arrival of the program. Internal consistency and test-retest reliability were assessed. Construct validity was assessed through comparisons with the Brief Approach/Avoidance Coping Questionnaire, (BACQ), the Emotional Approach Coping Scale (EAC) and the General Health Questionnaire (GHQ-20). Responsiveness was assessed with the Standardised Response Mean (SRM). RESULTS: Respondents included 66 (64%) and 52 (54%) patients from the first and second groups respectively. Levels of missing data were low for all items. There was good evidence for unidimensionality, item-total correlations ranged from 0.59 to 0.82 and Cronbach's Alpha and test-retest correlations were over 0.90. As hypothesised EC-17 scores had statistically significant low to moderate correlations with the BACQ, EAC and GHQ-20 in the range 0.26 to 0.42. Following the self-management program, EC-17 scores showed a significant improvement with an SRM of 0.48. CONCLUSION: The Norwegian version of the EC-17 has evidence for data quality, internal consistency and test-retest reliability, construct validity and responsiveness to change. The EC-17 seems promising as an outcome measure for evaluating self-management interventions for people with rheumatic conditions, but further studies are needed.