Vitality Training - a group-based intervention for persons with rheumatic diseases : Experiences, methodological aspects and clinical effects
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AbstractBackground: During the last decades there has been a shift away from the traditional view of health care professionals as the only experts and providers of knowledge and the patients as passive recipients, to a more collaborative approach, recognizing the patient as an active agent in managing illness and own health care. Within the health care system, one has gained a broader understanding of the complex interaction between person and disease and realized that a narrow biomedical approach is inadequate. Although pharmacological treatment for patients with rheumatic diseases has developed remarkably, not all patients are eligible for the new medications, the disease process is still only partly controllable, and many patients need to make demanding lifestyle changes. There is therefore a need for nonpharmacological interventions that enhance individuals’ coping abilities and help them to adjust to living with a lifelong disease. The Vitality Training Programme (VTP) is a group intervention that aims at enhancing people’s health promoting resources, their capacity to engage in the process of everyday living and ability to live a meaningful and valued life. Rather than focusing on strategies to control or reduce symptoms, the VTP explicitly emphasises the importance of nonjudgemental attention to thoughts, feelings and bodily senses without attempting to avoid or change them. Beneficial effects have been documented in persons with chronic musculoskeletal pain, but the VTP has previously not been evaluated in persons with inflammatory rheumatic diseases.
Aims: The main aims of this research project were: 1) to evaluate effects of the VTP on psychological wellbeing, coping and disease-related symptoms in patients with chronic rheumatic diseases, 2) to explore participants' VTP experiences, and 3) to test the measurement properties of an instrument to measure emotion-focused coping, the Emotional Approach Coping Scale (EAC), in Norwegian patients with rheumatic diseases.
Materials and methods: First, persons with various inflammatory arthritides (IA) and fibromyalgia syndrome (FMS), who attended the VTP at six rheumatology departments, were included in a prospective pre – post-test study with one-year follow-up (n = 175). Participants in the first ten groups were also asked to take part in qualitative focus group interviews (n = 69). Second, the Emotional Approach Coping Scale (EAC) was translated to Norwegian and tested in three different samples, a consecutive sample of patients attending rheumatology clinics (n = 118), a sample of patients attending the VTP (n = 36), and a sample attending a self-management program at a rheumatology hospital (n = 66). All patients had confirmed rheumatologic diagnoses of at least 0.5 years duration. Validity was tested in a cross-sectional study including all three samples, whereas responsiveness was tested in the two intervention groups. Finally, persons with inflammatory rheumatic joint diseases were recruited to a randomised controlled trial and allocated to either the VTP (n = 36) or routine care control plus a CD with mindfulness-based home exercises (n = 35). Qualitative data, collected from the focus group interviews were analysed by a qualitative content approach (paper II). Quantitative data were collected by self-report questionnaires and analysed by a variety of statistical methods, including paired t-tests for within-group changes (papers I, and III), bivariate and multivariate regression analyses of predictions (paper I), principal component factor analysis and correlation statistics (paper III), and mixed models repeated measures analyses of between-group effects (paper IV). Effect sizes were estimated by standardised response mean (SRM) (paper I and III) and by Cohen’s d statistic (paper IV).
Results: In the pre – post-test study, psychological distress, wellbeing, self-efficacy pain and symptoms and self-care ability were significantly improved in IA patients post-intervention, and the improvements were maintained at one-year follow-up (all p-values < 0.001). The SRMs ranged from 0.63 (wellbeing) to 0.41 (self-care ability). No significant reduction was found in fatigue after intervention, but at one-year follow-up fatigue was significantly reduced in IA patients (p = 0.007). No statistically significant improvements were found in any variables in patients with FMS. Inflammatory diagnosis and higher scores of fatigue at baseline were the main predictors of reduction in psychological distress at one-year followup. Participants in the focus groups described how the VTP had helped them to recognize themselves as both ill and healthy, to recognize their emotions, and to become more aware of their own needs. Being part of a supportive community and being recognized as a credible patient had been important facilitators of their outcomes. The EAC had low levels of missing data, and results from principal component analysis supported the two subscales, Emotional Processing and Emotional Expression, which both had high Cronbach's alphas of 0.92 and 0.90, respectively. Both EAC Processing and EAC Expression increased significantly in the VTP group after intervention (p-values < 0.05), whereas there were no significant changes in the EAC scales in the self-management sample at follow-up. In the randomised controlled trial, significant treatment effects in favour of the VTP group were found post-treatment, and effects were maintained at 12 months in psychological distress (effect size 0.58), self-efficacy pain (effect size 0.59) and symptoms (effect size 0.92) and emotional processing (effect size 0.43). In the VTP group, the number of persons with serious psychological distress was reduced from 13 (36%) at baseline to 2 (6%) at 12 months compared with from 10 (29%) to 8 (24%) in the control group (p = 0.045). Significant treatment effects in favour of the VTP group were also found post-treatment and at 12 months in fatigue (effect size 0.50), self-care ability (effect size 0.59) and wellbeing (effect size 0.43). The improvement in fatigue was increased at 12 months in the VTP group, whereas the control group was unchanged from baseline. Effects in pain and the patient global assessment of disease activity did not reach statistical significance.
Conclusions and implications: This research project has illuminated how a processoriented group intervention that focuses on topics related to life rather than the disease, explicitly addresses disease-related emotions and combines mindfulness-based and creative exercises, can enhance emotional wellbeing and strengthen individuals' belief in their abilities to manage their symptoms. Beneficial health effects were documented in terms of reduced psychological distress and fatigue. The EAC was found to be a valid and responsive instrument for measuring emotion-focused coping in persons with rheumatic diseases. These results show that the VTP is a feasible intervention that should be considered as a beneficial complement to existing treatment for patients with inflammatory rheumatic diseases, particularly for people who experience heightened psychological distress and fatigue.
Key-words: vitality, rheumatic diseases, psychological distress, fatigue, self-efficacy, coping, emotions, adjustment, mindfulness, qualitative research, repeated measurements, mixed models analysis.
List of papers. Papers I, II and IV are removed from the thesis due to copyright restrictions.
Paper I Zangi HA, Finset A, Steen E, Mowinkel P, KB Hagen The effects of a vitality training programme on psychological distress in patients with inflammatory rheumatic diseases and fibromyalgia: a 1-year follow-up. Scandinavian Journal of Rheumatology (2009), 38:3,231 - 232. doi:10.1080/03009740802474680
Paper II Zangi HA, Hauge MI, Steen E, Finset A, Hagen KB “I am not only a disease, I am so much more”. Patients with rheumatic diseases’ experiences of an emotion-focused group intervention. Patient Education and Counceling (2011), 85:419 - 424. doi:10.1016/j.pec.2010.12.032
Paper III Zangi HA, Garratt A, Hagen KB, Stanton AL, Mowinckel P, Finset A Emotion regulation in patients with rheumatic diseases: validity and responsiveness of the Emotional Approach Coping Scale (EAC). BMC Musculoskeletal Disorders (2009), 10:107. doi:10.1186/1471-2474-10-107 Published under the terms of the Creative Commons Attribution License
Paper IV Zangi HA, Mowinkel P, Finset A, Eriksson LR, Høystad TØ, Lunde AK, Hagen KB A mindfulness-based group intervention to reduce psychological distress and fatigue in patients with inflammatory rheumatic joint diseases: a randomised controlled trial Annals of the Rheumatic Diseases (2012), 71:911-917 doi:10.1136/annrheumdis-2011-200351