Pain, fatigue and fear-avoidance beliefs in relation to physical activity and body awareness in persons diagnosed with rheumatoid arthritis

Introduction: Pain and fatigue are highly common and a major concern for persons diagnosed with rheumatoid arthritis (RA). Having physical limitations, which have a significant effect on daily life, is also described as a major problem for persons with RA. Research findings show that a minority of persons with RA perform maintained health-enhancing physical activity (HEPA), and that psychosocial factors seem to be the most salient and consistent factors to explain variations in HEPA. Furthermore, fear of physical activity and exercise has been described as major barriers for persons with chronic pain. The ability to notice bodily inner sensations and stimuli (body awareness, BA) is described in the literature as having either a positive or a negative impact on a person’s health and well-being. However, the concept of BA is complex and therefore greater insight into this phenomenon is needed. Aim: The overall aim of this thesis was to investigate pain, fatigue and fear-avoidance beliefs in relation to physical activity and their correlates in persons with RA. A further overall aim was to develop a psychometric measurement of BA. A final overall aim was to deepen our understanding of BA in persons with RA. Methods: Study I was a psychometric evaluation of a Swedish version of the Body Awareness Questionnaire (BAQ) in a student population and in adults with RA. Studies II - III were a cross-sectional survey studies in adults with RA. Study IV was a phenomenological study using the empirical phenomenological psychological (EPP) method in adults with RA. Results: In study I, the value of Cronbach's alpha coefficients for the total score in the Swedish version of the BAQ was satisfactory. According to confirmatory factor analysis (CFA), neither a one-factor model nor a four-factor model tested in this study fulfilled the pre-specified criteria. In study II, pain was significantly associated with health-related quality of life (HRQoL) and disease activity. Fatigue was significantly associated with disease activity, BA and positive affect. The adjusted R2 was 28.6% for fatigue and 50.0% for pain. Study III showed that, for socio-demographic factors, being male and having a below average income were associated with an increased risk of high fear-avoidance beliefs about physical activity (mFABQ high). Moreover, the two disease-specific factors, which are most indicative of mFABQ high, were high level of pain and poor health. Concerning psychosocial factors, low HRQoL and low exercise self- efficacy were significantly associated with mFABQ high. The model fit was 0.27 (Nagelkerkés R2). In study IV, some general characteristics were found, which had to do with the disease giving rise to a higher degree of negatively toned BA. BA was a reactive process of searching or controlling for disease-related symptoms, or a reactive process that was triggered by emotions. In addition, BA was an active process in the sense of taking an inventory of abilities. All the participants had the ability to shift focus from BA to the outside world. Conclusions: This thesis showed that pain, fatigue and fear-avoidance beliefs about physical activity in persons with RA have several potential correlates, including socio-demographic, disease-specific and psychosocial factors for the variables investigated. The Swedish version of the BAQ is simple to administer and should be used as a tool to measure self-reported attentiveness to normal body processes. Cronbach’s alpha coefficient for the total score was satisfactory; nevertheless, since neither of the models fulfilled the pre-specified criteria further testing of the Swedish version of the BAQ is required. BA was found to be both positively and negatively toned in persons with RA, though RA resulted in a higher degree of negatively toned BA. Thus, the ability to shift attention, from BA to activities in the outside world, could sometimes be beneficial for the person’s general health and well-being. Having the opportunity to participate in meaningful and purposeful daily real-world activities keeps the mind busy (and distracted) and can decrease the negative BA

Body awareness in persons diagnosed with rheumatoid arthritis

Living with rheumatoid arthritis (RA) poses physiological and psychological demands on a person. RA is a autoimmune disease that can cause pain, disability, and suffering. The ability to notice bodily inner sensations and stimuli (body awareness, BA) is described in the literature in ways that could have either a positive or a negative impact on a person's health. The concept of BA is complex and a thorough understanding is needed about what BA means from the patient's perspective. This study was therefore conducted to acquire greater insight into this phenomenon. The study is grounded in a phenomenological life-world perspective. Eighteen narrative interviews were conducted in patients (age range 23–78 years) with RA. The interviews were analyzed using the Empirical Phenomenological Psychological method. General characteristics were found running through all 18 interviews, indicating that the disease resulted in a higher degree of negatively toned BA. BA was either a reactive process of searching or controlling after disease-related symptoms or a reactive process triggered by emotions. BA was an active process of taking an inventory of abilities. All participants had the ability to shift focus from BA to the outside world. Four typologies were identified: “A reactive process on symptoms,” “A reactive process on emotional triggers,” “An active process of taking an inventory of abilities,” and “A shifting from BA to the outside world.” In conclusion, because BA can be both positively and negatively toned, health care professionals must have a good understanding of when BA is positive and when it is negative in relation to the patient. RA had caused a higher degree of negatively toned BA. Thus, the ability to shift attention from BA to activity in the outside world could sometimes be beneficial for the patient's general health.Funding: This study was funded by Sophiahemmet University, Sophiahemmet Foundation, in Stockholm.</p

Increasing patients’ awareness of their own health : Experiences of participating in follow-up programs after surgical treatment for intermittent claudication

Introduction: Claudication is the most usual symptom of peripheral artery disease, it is described as painful contractions in the leg when walking and alleviated upon resting. People with claudication have an added risk of cardiocerebrovascular events, amputation, and death. Adherence to medical treatment and changes in lifestyles can lower this risk, but this secondary prevention therapy requires engagement, participation, and adherence from the patient. Objective: To explore patients’ experiences of participating in a 1-year multicentre clinical trial with two follow-up programs evaluating a nurse-led, patient-centered health-promoting programme after surgical treatment for claudication, the FASTIC study. Methods: A descriptive design with qualitative semi-structured interviews was used among participants in the FASTIC study. The study was conducted at two centres for vascular surgery in the city of Stockholm, Sweden. In all, 17 patients (nine men and eight women) who had completed the FASTIC study participated. Data was analysed using qualitative content analysis with an inductive approach. Results: Two main categories were identified, ‘Patient-Professional collaboration’ and ‘Experience of one´s health’, which were associated with four subcategories: facing opportunities and obstacles, cooperating based on the illness experience, increasing awareness of one's own health, and maintaining a healthy lifestyle. Conclusions: Patients' participation in follow-up programs after surgical treatment for claudication is highly valuable for an increased awareness of one's own health. A person-centered care with patient-professional collaboration is experienced as important for maintaining a health-promoting lifestyle

Pain and fatigue in adult patients with rheumatoid arthritis : Association with body awareness, demographic, disease-related, emotional and psychosocial factors

Background: Patients and clinicians report pain and fatigue as key outcome measures in rheumatoid arthritis. Fatigue and pain are a major concern to patients. Aim: The objective of this study was to examine fatigue and pain in adult patients with rheumatoid arthritis (RA) and to investigate the association between pain and fatigue with body awareness, demographic, disease-related, emotional and psychosocial factors. Method: Data were collected from a sample of patients with RA (n= 120) recruited from a Rheumatology clinic in a large university hospital in Stockholm, Sweden. Eligible for inclusion were patients between 20 -80 years of age and with a confirmed diagnosis of RA. Fatigue was measured using the Multidimensional Assessment of Fatigue (MAF) scale, while the Visual Analogue Scale (VAS) was used to assess components of pain. A multiple stepwise regression analysis was performed to evaluate factors related to fatigue and pain. In the first step a univariate analysis of variance (ANOVA) was used for all relevant independent factors. In the next step backwards stepwise regression was applied. Result: Fatigue was significantly associated with the Disease Activity Score 28-joints (DAS 28) (p = 0.049), the Body Awareness Questionnaire (BAQ) (p = 0.006), the Positive Affect (PA) scale (p = 0.008) and no smoking (p = 0.021). Pain was significantly associated with the EuroQol EQ-5D (p = 0.008) and the DAS 28 (p = 0.001). The adjusted R-square was 28.6% for fatigue and 50.0% for pain. Conclusion: This study clearly demonstrates that fatigue and pain in patients with RA appear to be associated with disease-related factors. Furthermore, fatigue was related to body awareness and emotional factors, and pain was related to health related quality of life

'This is why I'm doing a lot of exercise' : A qualitative study of participant's experiences of the Sophia Step Study

Introduction: Support for physical activity (PA) is central in diabetes care. The Sophia Step Study is a three-armed randomised controlled trial aiming to evaluate different levels of support for increased PA in prediabetes and Type 2 diabetes. With the purpose to reveal the programme components and the mediating factors from the participants’ perspective this paper aims to report a qualitative exploration of adhering participants’ experiences after two years’ study participation. Methods: Semi-structured interviews were conducted with 18 participants (men, n = 11, women, n = 7, prediabetes, n = 5, Type 2 diabetes, n = 13, median age 68.5 years) who completed a two-year multi-component (n = 7), singlecomponent (n = 6) intervention or served as controls (n = 5) at a primary care center in Stockholm, Sweden. The interviews were analysed using content analysis with an inductive approach. Sophia Step Study is registered at ClinicalTrials.gov with Identifier: NCT02374788. Results: The participants recalled the frequent study assessments as providing feedback of health outcomes; positive reinforcement; a sense of sentinel and a personalised approach. Group meetings, pedometers and health check-ups were valued as resources for increased awareness and motivation of PA; establishment of new routines and control over the own health. The long program duration allowed for maintenance of awareness and routines for PA Conclusion: Adhering participants in theory-based interventions, but also in the control group, identified key mediators to support for PA. Feedback of results, personalised encouragement, emotional support and selfmonitoring should be regarded in self-management of PA to optimise patient motivation and outcomes

Patient related outcomes after receiving a person centred nurse led follow up programme among patients undergoing revascularisation for intermittent claudication : A secondary analysis of a randomised clinical trial

OBJECTIVE: The aim was to evaluate the effect of a person centred nurse led follow up programme on health related quality of life (HRQoL), health literacy, and general self efficacy compared with standard care for patients undergoing revascularisation for intermittent claudication (IC), and to describe factors associated with HRQoL one year after revascularisation. METHODS: This was a secondary analysis of a randomised controlled trial. Patients with IC scheduled for revascularisation at two vascular surgery centres in Sweden between 2016 and 2018 were randomised to intervention or control. During the first year after surgery, the intervention group received a person centred follow up programme with three visits and two telephone calls with a vascular nurse, while the control group received standard follow up with two visits to a vascular surgeon or vascular nurse. Outcomes were HRQoL measured by VascuQol-6, health literacy, and general self efficacy measured by validated questionnaires. RESULTS: Overall, 214 patients were included in the trial; this secondary analysis comprised 183 patients who completed the questionnaires. One year after revascularisation, HRQoL had improved with a mean increase in VascuQol-6 of 7.0 scale steps (95% CI 5.9 - 8.0) for the intervention and 6.0 scale steps (95% CI 4.9 - 7.0) for the control group; the difference between the groups was not significant (p = .18). In an adjusted regression analysis, the intervention was associated with higher VascuQoL-6 (2.0 scale steps, 95% CI 0.08 - 3.93). There was no significant difference between the groups regarding health literacy or general self efficacy. The prevalence of insufficient health literacy among all participants was 38.7% (46/119) at baseline and 43.2% (51/118) at one year. CONCLUSION: In this study, a person centred, nurse led follow up programme had no significant impact on HRQoL, health literacy, or general self efficacy among patients undergoing revascularisation for IC. The prevalence of insufficient health literacy was high and should be addressed by healthcare givers and researchers

Fear-avoidance beliefs about physical activity in adults with rheumatoid arthritis

Objectives: The aim of this study was to describe fear-avoidance beliefs about physical activity and explore how these beliefs correlate with sociodemographic, disease-specific, and psychosocial factors in adults with rheumatoid arthritis (RA). Method: This cross-sectional study is part of the Physical Activity in Rheumatoid Arthritis (PARA) 2010 study. The study participants (n = 2351) were identified through the Swedish Rheumatology Quality (SRQ) registries from six rheumatology clinics in Sweden. Univariate and backwards stepwise logistic regressions were performed. Results: Stepwise logistic regressions showed that male gender [odds ratio (OR) 1.55, 95% confidence interval (CI) 1.26-1.91] and having a below average income (OR 1.35, 95% CI 1.12-1.63) were associated with an increased risk of high scores on the modified Fear Avoidance-Belief Questionnaire (mFABQ). The two disease-specific factors most indicative of high mFABQ scores were high level of pain (OR 1.99, 95% CI 1.40-2.84) and poor health (OR 1.59, 95% CI 1.10-2.29). With regard to psychosocial factors, low health-related quality of life (HRQoL; OR 0.44, 95% CI 0.35-0.55) and a low score on the Exercise Self-Efficacy Scale (ESES; OR 0.66, 95% CI 0.52-0.82) were significantly associated with a high mFABQ score. The model fit was 0.27 (Nagelkerke's R(2)). Conclusions: High fear-avoidance beliefs about physical activity in patients with RA were found to be associated with being male and having a below average income, a high level of pain, poor health, a low HRQoL, and low ESES score. Additional research is warranted for adults with RA to capture the multiple potential correlates to fear-avoidance beliefs about physical activity