2023 EULAR recommendations for the management of fatigue in people with inflammatory rheumatic and musculoskeletal diseases.

OBJECTIVES: Fatigue is prevalent in people with inflammatory rheumatic and musculoskeletal diseases (I-RMDs) and recognised as one of the most challenging symptoms to manage. The existence of multiple factors associated with driving and maintaining fatigue, and the evidence about what improves fatigue has led to a multifaceted approach to its management. However, there are no recommendations for fatigue management in people with I-RMDs. This lack of guidance is challenging for those living with fatigue and health professionals delivering clinical care. Therefore, our aim was to develop EULAR recommendations for the management of fatigue in people with I-RMDs. METHODS: A multidisciplinary taskforce comprising 26 members from 14 European countries was convened, and two systematic reviews were conducted. The taskforce developed the recommendations based on the systematic review of evidence supplemented with taskforce members' experience of fatigue in I-RMDs. RESULTS: Four overarching principles (OAPs) and four recommendations were developed. OAPs include health professionals' awareness that fatigue encompasses multiple biological, psychological and social factors which should inform clinical care. Fatigue should be monitored and assessed, and people with I-RMDs should be offered management options. Recommendations include offering tailored physical activity and/or tailored psychoeducational interventions and/or, if clinically indicated, immunomodulatory treatment initiation or change. Patient-centred fatigue management should consider the individual's needs and preferences, their clinical disease activity, comorbidities and other psychosocial and contextual factors through shared decision-making. CONCLUSIONS: These 2023 EULAR recommendations provide consensus and up-to-date guidance on fatigue management in people with I-RMDs.

Healthcare professionals' perceptions of using a digital patient educational programme as part of cardiac rehabilitation in patients with coronary artery disease - a qualitative study.

BACKGROUND: Participation in cardiac rehabilitation in patients with coronary artery disease (CAD) remains underutilised. Digital educational programmes, as part of cardiac rehabilitation, are emerging as a means of increasing accessibility, but healthcare professionals' perceptions of implementing and using these programmes are not known. The aim of the study was therefore to explore healthcare professionals ̓ perceptions and experiences of implementing and using a digital patient educational programme (DPE) as part of cardiac rehabilitation after acute CAD. METHODS: Individual semi-structured interviews were performed with 12 nurses and physiotherapists, ten women with a median age of 49.5 (min 37- max 59) years, with experience of using the DPE as part of a phase II cardiac rehabilitation programme in Region Västra Götaland, Sweden. The interviews were transcribed verbatim and analysed with inductive content analysis according to Graneheim and Lundman. RESULTS: An overall theme was identified throughout the unit of analysis: "Digital patient education - a complement yet not a replacement". Within this theme, three main categories were identified: "Finding ways that make implementation work", "Accessibility to information for confident and involved patients" and "Reaching one another in a digital world". Each main category contains a number of sub-categories. CONCLUSIONS: This study adds new knowledge on healthcare professionals' perceptions of a digital patient educational programme as a valuable and accessible alternative to centre-based education programmes as part of cardiac rehabilitation for patients with CAD. The participants highlighted the factors necessary for a successful implementation, such as support through the process and sufficient time from the employer to learn the system and to create new routines in daily practice. Future research is needed to further understand the impact of digital education systems in the secondary prevention of CAD. Ultimately, hybrid models, where the choice of delivery depends on the preferences of the individual patient, would be the optimal model of care for the future.

Centredness in health care: A systematic overview of reviews.

INTRODUCTION: The introduction of effective, evidence-based approaches to centredness in health care is hindered by the fact that research results are not easily accessible. This is partly due to the large volume of publications available and because the field is closely linked to and in some ways encompasses adjoining fields of research, for example, shared decision making and narrative medicine. In an attempt to survey the field of centredness in health care, a systematic overview of reviews was conducted with the purpose of illuminating how centredness in health care is presented in current reviews. METHODS: Searches for relevant reviews were conducted in the databases PubMed, Scopus, Cinahl, PsychINFO, Web of Science and EMBASE using terms connected to centredness in health care. Filters specific to review studies of all types and for inclusion of only English language results as well as a time frame of January 2017-December 2018, were applied. RESULTS: The search strategy identified 3697 unique reviews, of which 31 were included in the study. The synthesis of the results from the 31 reviews identified three interrelated main themes: Attributes of centredness (what centredness is), Translation from theory into practice (how centredness is done) and Evaluation of effects (possible ways of measuring effects of centredness). Three main attributes of centeredness found were: being unique, being heard and shared responsibility. Aspects involved in translating theory into practice were sufficient prerequisites, strategies for action and tools used in safeguarding practice. Further, a variety and breadth of measures of effects were found in the included reviews. CONCLUSIONS: Our synthesis demonstrates that current synthesized research literature on centredness in health care is broad, as it focuses both on explorations of the conceptual basis and the practice, as well as measures of effects. This study provides an understanding of the commonalities identified in the reviews on centredness in healthcare overall, ranging from theory to practice and from practice to evaluation. PATIENT OR PUBLIC CONTRIBUTION: Patient representatives were involved during the initiation of the project and in decisions about its focus, although no patient or public representatives made direct contributions to the review process.

Person-centered care content in medicine, occupational therapy, nursing, and physiotherapy education programs.

BACKGROUND: Although person-centered care (PCC) ensures high-quality care for patients, studies have shown that it is unevenly applied in clinical practice. The extent to which future health care providers are currently offered education in PCC at their universities is unclear. We aimed to clarify the PCC content offered to students as a basis for their understanding by exploring the PCC content of Swedish national study programs in medicine, nursing, occupational therapy, and physiotherapy. METHODS: Using a qualitative document analysis design, we sampled the steering documents from all higher education institutions (n = 48) with accreditation in medicine (n = 7), nursing (n = 25), occupational therapy (n = 8), or physiotherapy (n = 8) at a single time point. All national study programs (n = 4), local program syllabuses (n = 48), and local course syllabuses (n = 799) were reviewed using a 10-item protocol. RESULTS: We found no content related to PCC in the steering documents at the national level. At the local level, however, signs of PCC were identified in local program syllabuses and local course syllabuses. Seven of the 48 local program syllabuses (15%) included PCC in their intended learning outcomes. Eight of the 799 local course syllabuses (1%) contained course titles that included the phrase 'person-centered care,' and another 101 listed 142 intended learning outcomes referring to PCC. A total of 21 terms connected to PCC were found, and the term 'person-centered care' was most commonly used in the nursing programs and least commonly in the medical programs. CONCLUSIONS: There is a broad range in how the national study programs in Sweden have incorporated PCC. The implementation has been driven by a bottom-up strategy. A deliberate and standardized strategy is needed to ensure full implementation of PCC into clinical curricula in higher education.

Moderate-to-high intensity exercise with person-centered guidance influences fatigue in older adults with rheumatoid arthritis.

Fatigue is described as a dominant and disturbing symptom of rheumatoid arthritis (RA) regardless of the advances in pharmacological treatment. Fatigue is also found to correlate with depression. The objective was to evaluate the impact of moderate-to-high intensity, aerobic and resistance exercise with person-centered guidance on fatigue, anxiety and depression, in older adults with RA. Comparisons were made between older adults (> 65 years) with RA taking part in a 20-week moderate-to-high intensity exercise at a gym (n = 36) or in home-based exercise of light intensity (n = 38). Assessments were performed at baseline, at 20 weeks, and at 52 weeks. Outcomes were differences in Multidimensional Fatigue Inventory (MFI-20), Visual Analog Scale Fatigue (VAS fatigue), and Hospital Anxiety and Depression Scale (HADS). Analysis of metabolomics was also performed. The subscales "physical fatigue" and "mental fatigue" in MFI-20 and symptoms of depression using HADS depression scale improved significantly at week 20 in the exercise group compared with the control group. Exercise did not influence global fatigue rated by VAS or subscales "reduced motivation", "reduced activity" and "general fatigue" in MFI-20. No significant change was found on the anxiety index of HADS. The improvements in physical fatigue were associated with changes in the metabolism of lipids, bile acids, the urea cycle and several sugars. Moderate-to-high intensity exercise with person-centered guidance decreased fatigue and improved symptoms of depression and were accompanied by metabolic changes in older adults with RA.

Effects of Person-Centered Physical Therapy on Fatigue-Related Variables in Persons With Rheumatoid Arthritis: A Randomized Controlled Trial.

OBJECTIVE: To examine effects of person-centered physical therapy on fatigue and related variables in persons with rheumatoid arthritis (RA). DESIGN: Randomized controlled trial. SETTING: Hospital outpatient rheumatology clinic. PARTICIPANTS: Persons with RA aged 20 to 65 years (N=70): intervention group (n=36) and reference group (n=34). INTERVENTIONS: The 12-week intervention, with 6-month follow-up, focused on partnership between participant and physical therapist and tailored health-enhancing physical activity and balancing life activities. The reference group continued with regular activities; both groups received usual health care. MAIN OUTCOME MEASURES: Primary outcome was general fatigue (visual analog scale). Secondary outcomes included multidimensional fatigue (Bristol Rheumatoid Arthritis Fatigue Multi-Dimensional Questionnaire) and fatigue-related variables (ie, disease, health, function). RESULTS: At posttest, general fatigue improved more in the intervention group than the reference group (P=.042). Improvement in median general fatigue reached minimal clinically important differences between and within groups at posttest and follow-up. Improvement was also observed for anxiety (P=.0099), and trends toward improvements were observed for most multidimensional aspects of fatigue (P=.023-.048), leg strength/endurance (P=.024), and physical activity (P=.023). Compared with the reference group at follow-up, the intervention group improvement was observed for leg strength/endurance (P=.001), and the trends toward improvements persisted for physical (P=.041) and living-related (P=.031) aspects of fatigue, physical activity (P=.019), anxiety (P=.015), self-rated health (P=.010), and self-efficacy (P=.046). CONCLUSIONS: Person-centered physical therapy focused on health-enhancing physical activity and balancing life activities showed significant benefits on fatigue in persons with RA.

Seasonal variations in fatigue in persons with rheumatoid arthritis: a longitudinal study.

BACKGROUND: Fatigue is a prominent symptom in persons with rheumatoid arthritis (RA). Although this symptom has been described to vary in duration and frequency little is known about fluctuations in fatigue over time and season. The aim of this study was to describe monthly and seasonal variations in fatigue, in persons with RA of working age. METHODS: Sixty-five participants diagnosed with RA and aged 20-65 years were recruited from a rheumatology clinic in Sweden. The participants provided self-assessments of their fatigue at seven time points during the four seasons using a 0-100 mm visual analogue scale (VAS) and the Bristol Rheumatoid Arthritis Fatigue Multidimensional Questionnaire (BRAF-MDQ). Multiple regression analysis using mixed models was used to analyze changes in fatigue over time. RESULTS: The mean ± SD of fatigue rated on the VAS was 51 ± 13, indicating substantial fatigue. Analysis of monthly variation showed statistically significant variation in fatigue ratings concerning VAS fatigue score (p < 0.01) as well as the BRAF-MDQ total score and Living, Cognition (p < 0.001), and Physical (p < 0.05) sub-scores, but not the BRAF-MDQ Emotional sub-score. The greatest variations were seen from January to September, with higher fatigue ratings in January. The changes in VAS fatigue scores over time were considered to be of clinical importance. Analysis of seasonal variation revealed a statistically significant seasonal variation in fatigue levels, with higher fatigue values during the winter as measured by VAS fatigue score (p < 0.01) as well as BRAF-MDQ total score (p < 0.01) and Physical and Living sub-scores (both p < 0.01). The greatest variation was seen between winter and autumn for VAS fatigue and between winter and summer for BRAF-MDQ total score and Physical and Living sub-scores. There were no statistical differences in fatigue levels, monthly or seasonal, between sexes or age groups. CONCLUSIONS: The majority of rating scales used in this study showed fluctuations in fatigue, general and physical fatigue being significantly greater during the winter. As fatigue is a substantial symptom in many persons with RA, this information is important for rheumatology professionals when dealing with persons with RA in routine care.

The use of text-mining software to facilitate screening of literature on centredness in health care.

Research evidence supporting the implementation of centredness in health care is not easily accessible due to the sheer amount of literature available and the diversity in terminology and conceptualisations used. The use of text-mining functions to semi-automate the process of screening and collating citations for a review is a way of tackling the vast amount of research citations available today. There are several programmes that use text-mining functions to facilitate screening and data extraction for systematic reviews. However, the suitability of these programmes for reviews on broad topics of research, as well as the general uptake by researchers, is unclear. This commentary has a dual aim, which consists in outlining the challenges of screening literature in fields characterised by vague and overlapping conceptualisations, and to exemplify this by exploratory use of text-mining in the context of a scoping review on centredness in health care.

The person-centred care game: a reflective tool for learning person-centred care in higher education.

Person-centred care (PCC) is being implemented within many health care systems and educational institutions are important enablers of learning PCC. Teachers in higher education are responsible for helping students develop the ability to reflect. One approach is with serious games, which allow students to reflect on realistic situations and shape their skills with virtual patients. This paper describes the development of a serious game, the person-centred care game - (PCC game), which was designed to promote learning of PCC by reflection. We demonstrated how this PCC game could be used to induce PCC knowledge and skills by student reflection in an academic course on PCC.

Experience of co-creation of a health plan and support for sustainable physical activity among people with chronic widespread pain: a qualitative interview study in Sweden.

OBJECTIVES: The aim of this study was to gain deeper knowledge about how people with chronic widespread pain (CWP) experience the co-creation of a health plan for sustainable physical activity, working in partnership with a physiotherapist, supported by a digital platform. DESIGN: Qualitative semistructured in-depth individual interviews were analysed with qualitative content analysis. SETTING: Five primary healthcare centres in western Sweden. PARTICIPANTS: The interviewees comprised 19 individuals with CWP who had previously participated in a person-centred intervention involving co-creation of a health plan and support via a digital platform. The interviews were carried out from late 2019 to spring 2020, 1-6 months after the respondents' final follow-up. RESULTS: The analysis resulted in an overarching theme; hope for physical activity that actually works, illustrating the experience of taking part in co-creating a reasonable health plan, based on the respondents' own goals and interests with the potential to actually work. This theme was based on two categories: a plan tailored for me and a frame for participation and accessibility to help fulfil the plan. The digital platform provided a way to participate and an assurance that there was someone there for them if necessary. CONCLUSIONS: The co-creation of a health plan nurtured hope of having developed a manageable plan for physical activity that could lead to improved future health and well-being. Digital support may serve as a valuable complement in order to sustain and adjust the planned physical activity. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov Identifier: NCT03434899.

Goal-setting in physiotherapy: exploring a person-centered perspective.

Objective: To analyze definitions and related requirements, processes, and operationalization of person-centered goal-setting in the physiotherapy research literature; to discuss those findings in relation to underlying principles of person-centeredness; and to provide an initial framework for how person-centered goal-setting could be conceptualized and operationalized in physiotherapy. Methods: A literature search was conducted in the databases: CINAHL, PubMed, PEDro, PsycINFO, REHABdata and Scopus. A content analysis was performed on how person-centered goal-setting was described.Results: A total of 21 articles were included in the content analysis. Five categories were identified: 1) Understanding goals that are meaningful to the patients; 2) Setting goals in collaboration; 3) Facing challenges with person-centered goal-setting; 4) Developing skills by experiences and education; and 5) Changing interaction and reflective practice. These categories were abstracted into two higher-ordered interlaced themes: 1) To seek mutual understanding of what is meaningful to the patient; and 2) To refine physiotherapy interaction skills, which we suggest would be useful for further conceptualization.Conclusion: In this analysis, we interpreted person-centered goal-setting in physiotherapy as a process of interaction toward a mutual understanding of what is meaningful to the patient. Future research may explore how to integrate mindful listening, embodied interaction and continuous ethical reflection with different assessments and treatment methods.

Effects of a New Mattress and Pillow and Standard Treatment for Nightly Pelvic Girdle Pain in Pregnant Women: A Randomised Controlled Study.

OBJECTIVE: To evaluate the efficacy of a memory-foam mattress and pillow plus standard treatment for nightly pelvic girdle pain (PGP) during pregnancy. METHOD: In this randomised controlled study conducted at a tertiary-care hospital, 66 pregnant women who had nightly PGP were enrolled to receive standard treatment with the mattress and pillow (intervention group, n = 34) or solely standard treatment (control group, n = 32). The primary outcome was change in nightly posterior PGP on a visual analogue scale, VAS from baseline to 4 weeks. Secondary outcomes include nightly anterior PGP, the evening PGP score, estimated sleep duration, number of nightly wake-ups, daytime sleepiness (Epworth sleepiness scale), function (Pelvic Girdle Questionnaire), health-related quality of life, and pain catastrophizing. RESULTS: Forty-four women (67%) completed the treatment. The difference in nightly posterior pain intensity was significantly different in favour of the intervention group (VAS, 16.5 mm (95% CI 1.4:31.6) p = 0.028). Sleep duration increased within both groups (intervention group: 26 min, p = 0.022; control group: 14 min, p = 0.014) and the difference between groups was significant (p = 0.046). In addition, the intervention group indicated a decreased evening PGP intensity (p = 0.008) and fewer nightly wake-ups (p = 0.049). The control group showed a deterioration in function (Pelvic Girdle Questionnaire) (p = 0.018) and an increase in daytime sleepiness (Epworth sleepiness scale) (p = 0.021) from baseline to 4 weeks. CONCLUSION: In conclusion, significantly lower nightly posterior PGP intensity was noted after the use of a mattress and pillow as an adjunct to standard treatment. Nightly PGP can have adverse effects on various aspects of the health and quality of life of pregnant women, and although the results of this study should be interpreted with caution considering the high drop-out rate and the inadequate statistical power, the findings indicate the potential for the use of such interventions to improve PGP in pregnant women.

Factors promoting physical activity in women with fibromyalgia: a qualitative interview study.

OBJECTIVES: To gain deeper knowledge of factors promoting physical activity in women with fibromyalgia. DESIGN: A qualitative study based on semistructured in-depth individual interviews. Analysed using qualitative content analysis. PARTICIPANTS: Fourteen women with fibromyalgia, age 38-65, recruited from a previous randomised controlled trial investigating the effects of person-centred progressive resistance exercise compared with relaxation therapy. SETTING: Interviews were conducted in a hospital setting. RESULTS: The analysis resulted in four categories: a desire to be physically active, finding the proper level and creating proper conditions, managing pain and getting it done. CONCLUSION: This study reveals several factors both personal and environmental, which promote the ability to be physically active when living with pain and other symptoms of fibromyalgia. The participants expressed that, although they had a desire to be physically active, they needed support and guidance from a professional with adequate knowledge to help them find the proper level of exercise. They also expressed a need for the professional to understand their preferences, and to use these preferences as a basis for creating the proper conditions, helping them learn to manage pain and supporting them in getting the exercise done.

Factors of importance for reducing fatigue in persons with rheumatoid arthritis: a qualitative interview study.

OBJECTIVE: Physical activity plays an important role in the treatment of persons with rheumatoid arthritis (RA) and is the non-pharmacological intervention with the strongest evidence to reduce fatigue. However, physical activity can be challenging for persons who are fatigued. The aim of this study was to investigate factors of importance for reducing fatigue in persons with RA. DESIGN: This is a qualitative interview study based on semistructured, indepth individual interviews. Interviews were analysed using qualitative content analysis. PARTICIPANTS: Participants were 12 people with RA recruited from a previous randomised controlled trial of a person-centred treatment model focusing on health-enhancing physical activity and daily balance to lessen fatigue in persons with RA. SETTING: Interviews were conducted in a hospital setting. RESULTS: The analysis resulted in one theme: an intellectual and embodied understanding that sustainable physical activity is important to handle fatigue. This included five categories describing barriers and facilitating factors for sustainable physical activity: mentally overcoming the fatigue in order to be active, making exercise easy, reaching for balance, receiving support to be physically active and dealing with RA disease to be physically active. CONCLUSION: The participants in this study expressed that physical activity was important in handling fatigue, but also that this insight could only come from personal experience. The use of a person-centred ethic in physiotherapy coaching for patients with fatigue appears to promote sustainable physical activity behaviours by facilitating patients' resources to overcome barriers to physical activity.

Explanatory factors and predictors of fatigue in persons with rheumatoid arthritis: A longitudinal study.

OBJECTIVE: To investigate the impact of disease-related aspects on long-term variations in fatigue in persons with rheumatoid arthritis. DESIGN: Observational longitudinal study. METHODS: Sixty-five persons with rheumatoid arthritis, age range 20-65 years, were invited to a clinical examination at 4 time-points during the 4 seasons. Outcome measures were: general fatigue rated on visual analogue scale (0-100) and aspects of fatigue assessed by the Bristol Rheumatoid Arthritis Fatigue Multidimensional Questionnaire. Disease-related variables were: disease activity (erythrocyte sedimentation rate), pain threshold (pressure algometer), physical capacity (six-minute walk test), pain (visual analogue scale (0-100)), depressive mood (Hospital Anxiety and Depression scale, depression subscale), personal factors (age, sex, body mass index) and season. Multivariable regression analysis, linear mixed effects models were applied. RESULTS: The strongest explanatory factors for all fatigue outcomes, when recorded at the same time-point as fatigue, were pain threshold and depressive mood. Self-reported pain was an explanatory factor for physical aspects of fatigue and body mass index contributed to explaining the consequences of fatigue on everyday living. For predicting later fatigue pain threshold and depressive mood were the strongest predictors. CONCLUSION: Pain threshold and depressive mood were the most important factors for fatigue in persons with rheumatoid arthritis.

Perception, consequences, communication, and strategies for handling fatigue in persons with rheumatoid arthritis of working age--a focus group study.

The aim of this study was to describe how persons with rheumatoid arthritis (RA) of working age experience and handle their fatigue in everyday life. Six focus group discussions were conducted focusing on experiences of fatigue in 25 persons with RA (19 women, 6 men), aged 20-60 years. The discussions were recorded, transcribed verbatim, and analyzed according to qualitative content analysis. The analyses resulted in four categories. (1) Perception of fatigue: Fatigue was experienced different from normal tiredness, unpredictable, and overwhelming. It was associated with negative emotions, changed self-image, and fears. Feelings of frustration and shame were central when the persons were forced to omit valued life activities. (2) Consequences due to fatigue: The fatigue caused changes in cognitive ability, ability to act, and overall activity pattern where the increased need for rest and sleep caused an imbalance in daily life. The participants struggled not to let the fatigue interfere with work. The fatigue also brought negative consequences for their significant others. (3) Communicating fatigue: Fatigue was difficult to gain understanding for, and the participants adjusted their communication accordingly; it was important to keep up appearances. During medical consultation, fatigue was perceived as a factor not given much consideration, and the participants expressed taking responsibility for managing their fatigue symptoms themselves. (4) Strategies to handle fatigue: Strategies comprised conscious self-care, mental strategies, planning, and prioritizing. Fatigue caused considerable health problems for persons with RA of working age: negative emotions, imbalance in daily life due to increased need for rest, and difficulties gaining understanding. This draws attention to the importance of developing new modes of care to address fatigue in RA. Person-centered care to improve balance in life may be one approach needing further investigations.