Newly diagnosed with inflammatory arthritis (NISMA)-development of a complex self-management intervention.

BACKGROUND: Patients newly diagnosed with inflammatory arthritis (IA) request regular consultations and support from health professionals to manage physiological, emotional, and social challenges. Evidence suggests that providing a tailored multi-component self-management program may benefit disease management. However, there is a lack of evidence of effective interventions with multiple components targeting the needs of this group. Therefore, the aim of this study was to develop a self-management intervention targeting newly diagnosed patients with IA, following the Medical Research Council (MRC) framework for developing complex interventions. METHODS: The development of the complex self-management intervention covered three steps. First, the evidence base was identified through literature reviews, in which we described a preliminary nurse-led intervention. Secondly, we chose Social Cognitive Theory as the underlying theory along with Acceptance and Commitment Theory to support our communication strategy. Thirdly, the preliminary intervention was discussed and further developed in workshops to ensure that the intervention was in accordance with patients' needs and feasible in clinical practice. RESULTS: The developed intervention comprises a 9-month nurse-led intervention (four individual and two group sessions). A physiotherapist and an occupational therapist will attend the group sessions along with the nurse. All sessions should target IA-specific self-management with a particular focus on medical, role, and emotional management. CONCLUSION: Through the workshops, we involved all levels of the organization to optimize the intervention, but also to create ownership and commitment, and to identify barriers and shortcomings of the preliminary intervention. As a result, from the existing evidence, we believe that we have identified effective mechanisms to increase self-management in people newly diagnosed with IA. Further, we believe that the involvement of various stakeholders has contributed significantly to developing a relevant and feasible intervention. The intervention is a nurse-led complex self-management intervention embedded in a multidisciplinary team (named NISMA). The intervention is currently being tested in a feasibility study.

Characteristics of participants and decliners from a randomized controlled trial on physical activity in patients with rheumatoid arthritis: a retrospective register-based cross-sectional study.

OBJECTIVE: A randomized controlled trial [Joint Resources - Sedentary Behaviour (JR-SB) intervention] aimed to reduce sedentary behaviour and increase light-intensity physical activity in patients with rheumatoid arthritis (RA) through motivational counselling and text messages. Since a large proportion of invited patients declined to participate, this study aims to compare sociodemographic, clinical, and lifestyle factors between included patients and patients declining to participate (non-participants) in the JR-SB study and to investigate which characteristics were associated with participation. METHOD: A register-based cross-sectional study was conducted. All patients invited to participate in the JR-SB study were identified in the DANBIO registry, from which patients' clinical and lifestyle data were also retrieved. Data on sociodemography and comorbidity were extracted from national registers. Differences between participants and non-participants were determined by an independent t-test or a chi-squared test. Logistic regression analyses adjusted for various confounders tested the association of patient characteristics with the likelihood of participation in the JR-SB study. RESULTS: A total of 467 (58%) declined participation in the JR-SB study. Non-participants were older and less educated, more were smokers, fewer performed regular physical activity, and more had comorbidity compared to participants. Regression analyses showed that a higher educational level and absence of comorbidity in particular were associated with participation in the JR-SB study. CONCLUSION: Patients with RA who are less educated and with certain types of comorbidity are less motivated to participate in a physical activity intervention. The findings may inform the recruitment process and implementation of physical activity interventions in rheumatology clinical practice.

Validation of the Danish versions of the Bristol Rheumatoid Arthritis Fatigue Multi-Dimensional Questionnaires (BRAFs).

Objective: This study aimed to validate the Danish versions of the Bristol Rheumatoid Arthritis Fatigue Multi-Dimensional Questionnaire (BRAF-MDQ) and BRAF Numerical Rating Scale version 2 (NRSv2).Method: We tested face and content validity, internal consistency, criterion validity, construct validity, and reproducibility for the BRAF-MDQ, and face and criterion validity and reproducibility for the BRAF-NRS.Results: In all, 224/236 patients (95%) completed the questionnaires [70% female, mean ± sd age 59 ± 13.04 years, disease duration 11.2 ± 9.49 years, Health Assessment Questionnaire (HAQ) 0.724 ± 0.70, and 28-joint Disease Activity Score-C-reactive protein 2.55 ± 1.24]. The unidimensionality for the physical and cognitive fatigue subscales was confirmed, whereas the living with fatigue and emotional fatigue subscales were not unidimensional. Cronbach's α was 0.94 for the BRAF-MDQ total and 0.78-0.92 for the four subscales. The correlations between BRAF-MDQ and various measures were: 36-item Short Form Health Survey (SF-36) vitality subscale, 0.75; Hospital Anxiety and Depression Scale (HADS) anxiety subscale, 0.65; HADS depression subscale, 0.62; visual analogue scale (VAS) pain, 0.62; VAS global, 0.73; and HAQ, 0.62. The intraclass correlation coefficient for agreement was 0.995. A Bland-Altman plot showed a mean ± sd difference of -1.9 ± 3.62 for BRAF-MDQ. Correlation coefficients between the BRAF-NRSv2 subscales and other subscales were: BRAF-MDQ subscales, 0.57-0.93; SF-36 vitality subscale, 0.54-0.68; and VAS fatigue, 0.66-0.82.Conclusions: The Danish BRAFs are considered valid and reliable for use among Danish patients with rheumatoid arthritis, despite the subscales living with fatigue and emotional fatigue not being unidimensional, as they are in the original version.

Cognitive behavioural therapy for insomnia in patients with rheumatoid arthritis: protocol for the randomised, single-blinded, parallel-group Sleep-RA trial.

BACKGROUND: More than half of patients with rheumatoid arthritis complain of insomnia, which is predominantly treated with hypnotic drugs. However, cognitive behavioural therapy for insomnia is recommended as the first-line treatment in international guidelines on sleep. Patients with rheumatoid arthritis suffer from debilitating symptoms, such as fatigue and pain, which can also be linked to sleep disturbance. It remains to be determined whether cognitive behavioural therapy for insomnia can be effective in patients with rheumatoid arthritis. The aim of the Sleep-RA trial is to investigate the efficacy of cognitive behavioural therapy for insomnia on sleep and disease-related symptoms in patients with rheumatoid arthritis. The primary objective is to compare the effect of cognitive behavioural therapy for insomnia relative to usual care on changes in sleep efficiency from baseline to week 7 in patients with rheumatoid arthritis. The key secondary objectives are to compare the effect of cognitive behavioural therapy for insomnia relative to usual care on changes in sleep onset latency, wake after sleep onset, total sleep time, insomnia, sleep quality, fatigue, impact of rheumatoid arthritis and depressive symptoms from baseline to week 26 in patients with rheumatoid arthritis. METHODS: The Sleep-RA trial is a randomised controlled trial with a two-group parallel design. Sixty patients with rheumatoid arthritis, insomnia and low-to-moderate disease activity will be allocated 1:1 to treatment with cognitive behavioural therapy for insomnia or usual care. Patients in the intervention group will receive nurse-led, group-based cognitive behavioural therapy for insomnia once a week for 6 weeks. Outcome assessments will be carried out at baseline, after treatment (week 7) and at follow-up (week 26). DISCUSSION: Data on treatment of insomnia in patients with rheumatoid arthritis are sparse. The Sleep-RA trial is the first randomised controlled trial to investigate the efficacy of cognitive behavioural therapy for insomnia in patients with rheumatoid arthritis. Because symptoms of rheumatoid arthritis and insomnia have many similarities, we also find it relevant to investigate the secondary effects of cognitive behavioural therapy for insomnia on fatigue, impact of rheumatoid arthritis, depressive symptoms, pain, functional status, health-related quality of life and disease activity. If we find cognitive behavioural therapy for insomnia to be effective in patients with rheumatoid arthritis this will add weight to the argument that evidence-based non-pharmacological treatment for insomnia in rheumatological outpatient clinics is eligible in accordance with the existing international guidelines on sleep. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03766100. Registered on 30 November 2018.

Nursing staffs self-perceived outcome from a rehabilitation 24/7 educational programme - a mixed-methods study in stroke care.

BACKGROUND: During the past two decades, attempts have been made to describe nurses' contributions to the rehabilitation of inpatients following stroke. There is currently a lack of interventions that integrate the diversity of nurses' role and functions in stroke rehabilitation and explore their effect on patient outcomes. Using a systematic evidence- and theory-based design, we developed an educational programme, Rehabilitation 24/7, for nursing staff working in stroke rehabilitation aiming at two target behaviours; working systematically with a rehabilitative approach in all aspects of patient care and working deliberately and systematically with patients' goals. The aim of this study was to assess nursing staff members' self-perceived outcome related to their capability, opportunity and motivation to work with a rehabilitative approach after participating in the stroke Rehabilitation 24/7 educational programme. METHODS: A convergent mixed-method design was applied consisting of a survey and semi-structured interviews. Data collection was undertaken between February and June 2016. Data from the questionnaires (N = 33) distributed before and after the intervention were analysed using descriptive statistics and Wilcoxon sign rank test. The interviews (N = 10) were analysed using deductive content analysis. After analysing questionnaires and interviews separately, the results were merged in a side by side comparison presented in the discussion. RESULTS: The results from both the quantitative and qualitative analyses indicate that the educational programme shaped the target behaviours that we aimed to change by addressing the nursing staff's capability, opportunity and motivation and hence could strengthen the nursing staff's contribution to inpatient stroke rehabilitation. A number of behaviours changed significantly, and the qualitative results indicated that the staff experienced increased focus on their role and functions in rehabilitation practice. CONCLUSION: Our study provides an understanding of the outcome of the Rehabilitation 24/7 educational programme on nursing staff's behaviours. A mixed-methods approach provided extended knowledge of the changes in the nursing staff members' self-percived behaviours after the intervention. These changes suggest that educating the nursing staff on rehabilitation using the Rehabilitation 24/7 programme strengthened their knowledge and beliefs about rehabilitation, goal-setting as well as their role and functions.

Motivational counselling and SMS-reminders for reduction of daily sitting time in patients with rheumatoid arthritis: a descriptive randomised controlled feasibility study.

BACKGROUND: Patients with rheumatoid arthritis (RA) spend a high proportion of their waking time in sedentary behaviour (SB) and have an increased risk of cardiovascular disease. Reduction of SB and increase in light intensity physical activity has been suggested as a means of improvement of health in patients with mobility problems. Short-term intervention studies have demonstrated that SB can be reduced by behavioural interventions in sedentary populations. To evaluate descriptively the feasibility of recruitment, randomisation, outcome assessments, retention and the acceptability of an individually tailored, theory-based behavioural intervention targeting reduction in daily sitting time in patients with RA. METHODS: A randomised, controlled trial with two parallel groups. RA patients >18 years of age and Health Assessment Questionnaire (HAQ) score < 2.5 were consecutively invited and screened for daily leisure time sitting > 4 h. The 16-week intervention included 1) three individual motivational counselling sessions and 2) individual text message reminders aimed at reducing daily sitting time. The control group was encouraged to maintain their usual lifestyles. Outcomes were assessed at baseline and after the 16 week intervention. Daily sitting time was measured using an ActivPAL3TM activity monitor. The study was not powered to show superiority; rather the objective was to focus on acceptability among patients and clinical health professionals. RESULTS: In total, 107 patients were invited and screened before 20 met eligibility criteria and consented; reasons for declining study participation were mostly flares, lack of time and co-morbidities. One patient from the control group dropped out before end of intervention (due to a RA flare). Intervention participants completed all counselling sessions. All procedures regarding implementation of the trial protocol were feasible. The daily sitting time was reduced on average by 0.30 h in the intervention group unlike the control group that tended to increase it by 0.15 h after 16 weeks. CONCLUSIONS: This study shows that an individually tailored behavioural intervention targeting reduction of SB was feasible and acceptable to patients with RA. TRIAL REGISTRATION: The Danish Data Protection Agency (ref.nb. 711-1-08 - 20 March 2011), the Ethics Committee of the Capital Region of Denmark (ref.nb. H-2-2012-112- 17 October 2012), clinicaltrials.gov ( NCT01969604 - October 17 2013, retrospectively registered).

Physical activity and the association with fatigue and sleep in Danish patients with rheumatoid arthritis.

The aim of this study was to examine physical activity behavior in patients with rheumatoid arthritis and to identify potential correlates of regular physical activity including fatigue, sleep, pain, physical function and disease activity. A total of 443 patients were recruited from a rheumatology outpatient clinic and included in this cross-sectional study. Physical activity was assessed by a four-class questionnaire, in addition to the Physical Activity Scale. Other instruments included the Multidimensional Fatigue Inventory (MFI), the Pittsburgh Sleep Quality Index and the Health Assessment Questionnaire. Disease activity was obtained from a nationwide clinical database. Of the included patients, 80 % were female and mean age was 60 (range 21-88 years). Hereof, 22 % (n = 96) were regularly physically active, and 78 % (n = 349) were mainly sedentary or having a low level of physical activity. An inverse univariate association was found between moderate to vigorous physical activity, and fatigue (MFI mental, MFI activity, MFI physical and MFI general), sleep, diabetes, depression, pain, patient global assessment, HAQ and disease activity. The multivariate prediction model demonstrated that fatigue-related reduced activity and physical fatigue were selected in >95 % of the bootstrap samples with median odds ratio 0.89 (2.5-97.5 % quantiles: 0.78-1.00) and 0.91 (2.5-97.5 % quantiles: 0.81-0.97), respectively, while disease activity was selected in 82 % of the bootstrap samples with median odds ratio 0.90. Moderate to vigorous physical activity in patients with rheumatoid arthritis is associated with the absence of several RA-related factors with the most important correlates being reduced activity due to fatigue, physical fatigue and disease activity.

Sleep quality and correlates of poor sleep in patients with rheumatoid arthritis.

The objective of this study is to examine sleep quality and correlates of poor sleep in patients with rheumatoid arthritis (RA). Five hundred patients with RA were recruited from a rheumatology outpatient clinic and included in this cross-sectional study. Sleep quality and disturbances were assessed using the Pittsburgh Sleep Quality Index (PSQI). Other instruments included the Multidimensional Fatigue Inventory, the Epworth Sleepiness Scale, and the Health Assessment Questionnaire. Disease activity was assessed according to disease activity score DAS28-CRP-based. Complete scores on PSQI were obtained from 384 patients (77 %). In those, the prevalence of poor sleep (PSQI >5) was 61 %, and the mean global PSQI score was 7.54 (SD 4.17). A linear association was found between poor sleep and mental fatigue, reduced activity related to fatigue, physical fatigue, and general fatigue. Mental fatigue and general fatigue were independently associated with sleep quality, sleep latency, sleep duration, sleep efficiency, and daytime dysfunction. However, in the linear multivariate analysis, only general fatigue 1.06 (95 % CI 1.03-1.09) and mental fatigue 1.03 (95 % CI 1.01-1.05) were found to be significant correlates for reporting poor sleep. This study shows that a majority of patients with RA experience poor sleep and that general fatigue and mental fatigue are associated with poor sleep.

The meaning of having to live with cancer in old age.

Little is known about how older people with cancer experience their life situation. To increase the understanding of how illness is experienced in older people with cancer, the aim of this study was to investigate the meaning of living with cancer in old age. The hermeneutic phenomenological method as described by van Manen and referred to as 'phenomenology of praxis' was used. Ten persons (seven women and three men) aged 75 and over, who had a diagnosis of cancer and who had just completed cancer treatment, were interviewed in their own homes. The analysis revealed a life world affected to varying degrees by the cancer disease. The lived experiences across the interviews were revealed in four overarching essential themes: transition into a more or less disintegrated existence, sudden awareness of the finiteness of life, redefinition of one's role in life for good and for bad, meeting disease and illness. To provide individual support and appropriate care to older people with cancer it is important for health care professionals to identify and take care of disabilities and to support the reorientation in the disintegrated life situation. It is also important to have preparedness to meet the old person's thoughts about death. Thus, it is important to encourage the old person to describe her/his illness experience to increase understanding about what is meaningful for her/him.

Quality of life of elderly persons with newly diagnosed cancer.

The aim was to investigate quality of life (QoL) in elderly persons newly diagnosed with cancer (65+ years) in relation to age, contact with the health-care system, ability to perform activities of daily living (ADL), hope, social network and support, and to identify which factors were associated with low QoL. The sample consisted of 101 patients (75 women and 26 men) newly diagnosed with cancer. EORTC QLQ-C30, Nowotny's Hope Scale, Katz ADL and the Interview Schedule for Social Interaction (ISSI) were used. The analysis was carried out in four age groups and revealed no significant differences in QoL. Compared with the other age groups, those of a high age (80+ years) more often lived alone, used more home-help service and had a smaller social network. Factors associated with low QoL were 'no other incomes than retirement pension', 'low level of hope' and 'lung cancer'. In addition, 'being told that the cancer disease has not come to an end', 'needing more help in activities of daily living', 'getting help from grown-up children' and 'needing help with PADL' were associated with low QoL. Those at risk of inferior QoL, that is, having poor economy, low level of hope and lung cancer need special attendance and specific interventions to improve QoL.