Parents' views on and need for an intervention during their chronically ill child's transfer to adult care.

Parents of chronically ill adolescents play a significant role during their child's transition and transfer to adult care. Parents seek help and support, but appropriate initiatives are still lacking. Thus, there is an urgent call for knowledge regarding parents' needs and views on such support. The aim of this study was to examine, in relation to parents of chronically ill adolescents: 1) views and experiences regarding their child's transfer from paediatric to adult care, and 2) which initiatives parents preferred in relation to the transfer. The study was based on the interpretive description method, and data were collected through face-to-face or telephone interviews with parents of chronically ill adolescents aged 16-19 (n = 11). We found three overall findings: 'Feeling acknowledged vs. feeling excluded', 'Perceived differences between paediatric and adult care' and 'Feeling safe vs. entering the unknown', together with three preferred initiatives: 1) Joint consultations, 2) Educational events and 3) Online support/website. In general, we found that some parents were extremely worried about the transfer, while others were not. Our results suggest that transfer initiatives targeting parents should focus on knowledge, expectations, relationships and goals in accordance with the social-ecological model of adolescent and young adult readiness to transition (SMART).

The effect of group-based cognitive behavioural therapy for insomnia in patients with rheumatoid arthritis: a randomized controlled trial.

OBJECTIVES: The primary objective was to compare the effect of cognitive behavioural therapy for insomnia (CBT-I) to usual care on sleep efficiency, measured by polysomnography (PSG) immediately after the intervention at week 7. Secondary objectives included comparing the longer-term effect on sleep- and RA-related outcomes at week 26. METHODS: In a randomized controlled trial using a parallel group design, the experimental intervention was 6 weeks' nurse-led group-based CBT-I; the comparator was usual care. Analyses were based on the intention-to-treat (ITT) principle; missing data were statistically modelled using repeated-measures linear mixed effects models adjusted for the level at baseline. RESULTS: The ITT population consisted of 62 patients (89% women), with an average age of 58 years and an average sleep efficiency of 83.1%. At primary end point, sleep efficiency was 88.7% in the CBT-I group, compared with 83.7% in the control group (difference: 5.03 [95% CI -0.37, 10.43]; P = 0.068) measured by PSG at week 7. Key secondary outcomes measured with PSG had not improved at week 26. However, for all the patient-reported key secondary sleep- and RA-related outcomes, there were statistically highly significant differences between CBT-I and usual care (P < 0.0001), e.g. insomnia (Insomnia Severity Index: -9.85 [95% CI -11.77, -7.92]) and the RA impact of disease (RAID: -1.36 [95% CI -1.92, -0.80]) at week 26. CONCLUSION: Nurse-led group-based CBT-I did not lead to an effect on sleep efficiency objectively measured with PSG. However, CBT-I showed improvement on all patient-reported key secondary sleep- and RA-related outcomes measured at week 26. TRIAL REGISTRATION: ClinicalTrials.gov, https://clinicaltrials.gov, NCT03766100.

Impact of Nonpharmacologic Interventions Targeting Sleep Disturbances or Disorders in Patients With Inflammatory Arthritis: A Systematic Review and Meta-Analysis of Randomized Trials.

OBJECTIVE: Patients with inflammatory arthritis have a high risk of sleep disturbances and disorders. The objective was to evaluate the evidence of nonpharmacologic interventions targeting sleep disturbances or disorders in patients with inflammatory arthritis. METHODS: A systematic search was undertaken from inception to September 8, 2020. We included randomized trials concerning nonpharmacologic interventions applied in adults with inflammatory arthritis and concomitant sleep disturbances or disorders. The primary outcome was the sleep domain, while secondary outcomes were core outcome domains for inflammatory arthritis trials and harms. The Cochrane Risk of Bias tool was applied, and the overall quality of the evidence was assessed using Grading of Recommendations Assessment, Development and Evaluation criteria. Effect sizes for continuous outcomes were based on the standardized mean difference, combined using random-effects meta-analysis. RESULTS: Six trials (308 patients) were included in the quantitative synthesis; 3 of these reported improvement in sleep in favor of the nonpharmacologic interventions. The meta-analysis of the sleep domains indicated a large clinical effect of -0.80 (95% confidence interval -1.33, -0.28) in favor of nonpharmacologic interventions targeting sleep disturbances or disorders. The estimate was rated down twice for risk of bias and unexplained inconsistency; this risk was assessed as corresponding to low-quality evidence. None of the secondary core outcomes used in contemporary inflammatory arthritis trials indicated a clinical benefit in favor of nonpharmacologic interventions targeting sleep. CONCLUSION: Nonpharmacologic interventions targeting sleep disturbances/disorders in patients with inflammatory arthritis indicated a promising effect on sleep outcomes, but not yet with convincing evidence.

Sustained Long-Term Efficacy of Motivational Counseling and Text Message Reminders on Daily Sitting Time in Patients With Rheumatoid Arthritis: Long-Term Follow-up of a Randomized, Parallel-Group Trial.

OBJECTIVE: To evaluate the 18-month postintervention efficacy following a 4-month individually tailored behavioral intervention on daily sitting time in patients with rheumatoid arthritis (RA). METHODS: In an observer-blinded randomized trial, 150 RA patients were included. During 4 months, the intervention group (n = 75) received 3 motivational counseling sessions and tailored text messages aimed at increasing light-intensity physical activity through reduction of sedentary behavior. The control group (n = 75) maintained their usual lifestyle. The primary outcome was change from baseline to 18 months postintervention in objectively measured daily sitting time (using ActivPAL). Secondary outcomes included changes in clinical patient-reported outcomes and cardiometabolic biomarkers. A mixed-effect repeated measures analysis of covariance model in the intent-to-treat population was applied. RESULTS: At 22 months follow-up from baseline, 12 participants were lost to follow-up. Compared to baseline, sitting time in the intervention group decreased 1.10 hours/day, whereas it increased by 1.32 hours/day in the control group, a between-group difference of -2.43 hours/day (95% confidence interval [95% CI] -2.99, -1.86; P < 0.0001) favoring the intervention group. For most secondary outcomes, between-group differences favored the intervention: visual analog scale (VAS) pain -15.51 mm (95% CI -23.42, -7.60), VAS fatigue -12.30 mm (95% CI -20.71, -3.88), physical function -0.39 Health Assessment Questionnaire units (95% CI -0.53, -0.26), total cholesterol -0.86 mmoles/liter (95% CI -1.03, -0.68), triglycerides -0.26 mmoles/liter (95% CI -0.43, -0.09), and average glucose -1.15 mmoles/liter (95% CI -1.39, -0.91). CONCLUSION: The 4-month postintervention results showed that patients in the intervention reduced their daily sitting time and improved patient-reported outcomes and total cholesterol levels compared to the control group. Eighteen months after intervention, patients in the intervention group were still significantly less sedentary than controls. Findings suggest that a behavioral approach is beneficial for promoting long-term physical activity and health in patients with RA.

Patients' Views on Routine Collection of Patient-Reported Outcomes in Rheumatology Outpatient Care: A Multicenter Focus Group Study.

OBJECTIVE: To explore the patients' views of the collection and use of patient-reported outcomes as part of routine care in patients with inflammatory arthritis. METHODS: We conducted a qualitative focus group study based on interviews in each of the 5 geographical regions of Denmark. The analysis was based on content analysis. Four patient research partners were involved in the study. RESULTS: In total, 32 adult patients (21 female) with rheumatoid arthritis (n = 21), psoriatic arthritis (n = 6), and axial spondyloarthritis (n = 5) participated. The mean age was 60 years (range 32-80 years). Five themes were derived from the analysis: 1) a need for information about why the data are collected, reflecting patients' uncertainty as to whether the collection of patient-reported outcomes primarily served to monitor their own disease, to save money, or to gather data for research purposes; 2) inclusion of patient-reported outcomes in the consultation, encompassing patients' expectations of active use of the patient-reported outcomes data during talks with rheumatologists or nurses; 3) reflections on how to respond to the patient-reported outcome measures (PROMs) to obtain high quality data, referring to patients' concerns about how to respond "correctly" and about issues that could affect their responses; 4) addressing patient-reported outcomes to the individual's challenges, reflecting the need for a more individualized approach; and 5) possibilities for improvement in the use of patient-reported outcomes, referring to patients' ideas for the future use of patient-reported outcomes. CONCLUSION: Information and dialogue regarding the purpose of patient-reported outcomes collection, how to respond to PROMs correctly, and inclusion of the patient-reported outcomes data in the consultation are of importance to patients with inflammatory arthritis who routinely complete patient-reported outcomes.

Smoking cessation is associated with lower disease activity and predicts cardiovascular risk reduction in rheumatoid arthritis patients.

OBJECTIVES: Smoking is a major risk factor for the development of both cardiovascular disease (CVD) and RA and may cause attenuated responses to anti-rheumatic treatments. Our aim was to compare disease activity, CVD risk factors and CVD event rates across smoking status in RA patients. METHODS: Disease characteristics, CVD risk factors and relevant medications were recorded in RA patients without prior CVD from 10 countries (Norway, UK, Netherlands, USA, Sweden, Greece, South Africa, Spain, Canada and Mexico). Information on CVD events was collected. Adjusted analysis of variance, logistic regression and Cox models were applied to compare RA disease activity (DAS28), CVD risk factors and event rates across categories of smoking status. RESULTS: Of the 3311 RA patients (1012 former, 887 current and 1412 never smokers), 235 experienced CVD events during a median follow-up of 3.5 years (interquartile range 2.5-6.1). At enrolment, current smokers were more likely to have moderate or high disease activity compared with former and never smokers (P < 0.001 for both). There was a gradient of worsening CVD risk factor profiles (lipoproteins and blood pressure) from never to former to current smokers. Furthermore, former and never smokers had significantly lower CVD event rates compared with current smokers [hazard ratio 0.70 (95% CI 0.51, 0.95), P = 0.02 and 0.48 (0.34, 0.69), P < 0.001, respectively]. The CVD event rates for former and never smokers were comparable. CONCLUSION: Smoking cessation in patients with RA was associated with lower disease activity and improved lipid profiles and was a predictor of reduced rates of CVD events.

Smoking cessation intervention for reducing disease activity in chronic autoimmune inflammatory joint diseases.

BACKGROUND: Chronic inflammatory joint diseases (IJDs) affect 1% to 2% of the population in developed countries. IJDs include rheumatoid arthritis (RA), ankylosing spondylitis (AS), psoriatic arthritis (PsA), and other forms of spondyloarthritis (SpA). Tobacco smoking is considered a significant environmental risk factor for developing IJDs. There are indications that smoking exacerbates the symptoms and worsens disease outcomes. OBJECTIVES: The objective of this review was to investigate the evidence for effects of smoking cessation interventions on smoking cessation and disease activity in smokers with IJD. SEARCH METHODS: We searched the Cochrane Tobacco Addiction Group Specialized Register; the Cochrane Central Register of Controlled Trials (CENTRAL), the Cochrane Library; PubMed/MEDLINE; Embase; PsycINFO; the Cumulative Index to Nursing and Allied Health Literature (CINAHL); and three trials registers to October 2018. SELECTION CRITERIA: We included randomised controlled trials testing any form of smoking cessation intervention for adult daily smokers with a diagnosis of IJD, and measuring smoking cessation at least six months after baseline. DATA COLLECTION AND ANALYSIS: We used standard methodological procedures as expected by Cochrane. MAIN RESULTS: We included two studies with 57 smokers with a diagnosis of rheumatoid arthritis (RA). We identified no studies including other IJDs. One pilot study compared a smoking cessation intervention specifically for people with RA with a less intensive, generic smoking cessation intervention. People included in the study had a mean age of 56.5 years and a disease duration of 7.7 years (mean). The second study tested effects of an eight-week cognitive-behavioural patient education intervention on cardiovascular disease (CVD) risk for people with RA and compared this with information on CVD risk only. The intervention encouraged participants to address multiple behaviours impacting CVD risk, including smoking cessation, but did not target smoking cessation alone. People included in the study had a mean age of 62.2 years (intervention group) and 60.8 years (control group), and disease duration of 11.6 years (intervention group) and 14.1 years (control group). It was not appropriate to perform a meta-analysis of abstinence data from the two studies due to clinical heterogeneity between interventions. Neither of the studies individually provided evidence to show benefit of the interventions tested. Only one study reported on adverse effects. These effects were non-serious, and numbers were comparable between trial arms. Neither of the studies assessed or reported disease activity or any of the predefined secondary outcomes. We assessed the overall certainty of evidence as very low due to indirectness, imprecision, and high risk of detection bias based on GRADE. AUTHORS' CONCLUSIONS: We found very little research investigating the efficacy of smoking cessation intervention specifically in people with IJD. Included studies are limited by imprecision, risk of bias, and indirectness. Neither of the included studies investigated whether smoking cessation intervention reduced disease activity among people with IJD. High-quality, adequately powered studies are warranted. In particular, researchers should ensure that they measure disease markers and quality of life, in addition to long-term smoking cessation.

The impact of exercise on sleep (time, quality, and disturbance) in patients with rheumatoid arthritis: a study protocol for a pilot randomised controlled trial.

Poor sleep is an issue for people with rheumatoid arthritis (RA), which may curtail their ability to function appropriately and reduce their activity levels. This paper describes a protocol for a pilot randomised controlled trial of an aerobic exercise intervention compared with exercise advice designed to improve sleep in people with RA. Objectives are to obtain reliable estimates regarding recruitment rates, participant retention and protocol adherence and to generate potential effect size estimates for a main trial. Participants will be identified from an existing database held at a University Hospital and in person at weekly rheumatology clinics. Participants meeting the inclusion criteria will be randomised into an intervention or control group. Those in the intervention group will participate in an 8-week walking-based exercise intervention consisting of 28 walking sessions, with 1 session per week being supervised by a trained physiotherapist, spread over a maximum of 8 weeks (2-5 times/week), while those in the control group will receive advice on the benefits of exercise for people with RA. Results will provide data for efficient recruitment and data collection, to determine if a larger, statistically powered main trial could be generalised to a multi-centre rheumatoid arthritis population. Given recent information that sleep is commonly reduced in people with RA and that physical activity and exercise profiles are lower, this study will contribute data to the field of exercise and sleep that is currently lacking and importantly will include people with RA in the study process prior to any fully powered trial.Trial registration number: ClinicalTrials.gov Identifier: NCT03140995 (April 25th, 2017).

Neurophysiological Pain Education for Patients With Chronic Low Back Pain: A Systematic Review and Meta-Analysis.

OBJECTIVE: To evaluate the effect of neurophysiological pain education (NPE) for patients with chronic low back pain (CLBP). METHODS: A systematic search was performed in 6 electronic databases. Eligible randomized-controlled trials were those with at least 50 % of patients with CLBP and in which NPE was compared with no intervention or usual care. Methodological quality was assessed independently by 2 of the authors using the Cochrane Collaboration Risk of Bias Tool. The effect of NPE was summarized in a random effect meta-analysis for pain, disability, and behavioral attitudes. Effect was estimated as weighted mean difference (WMD) if outcomes were on the same scale or as standardized mean difference (SMD). The overall quality of evidence was evaluated according to GRADE guidelines. RESULTS: Seven randomized-controlled trial studies (6 low and 1 high quality) were included. Statistically significant differences in pain, in favor of NPE, were found after treatment, WMD=-1.03 (95% confidence interval [CI], -0.55 to -1.52), and after 3 months, WMD=-1.09 (95% CI, -2.17 to 0.00). Furthermore statistically significant lower disability was found in the NPE group after treatment, SMD=-0.47 (95% CI, -0.80 to -0.13) and after 3 months SMD=-0.38 (95% CI, -0.74 to -0.02). The difference in favor of NPE in reduction in Tampa Scale of Kinesiophobia was not statistically significant, WMD=-5.73 (95% CI, -13.60 to 2.14) and after 3 months WMD=-0.94 (95% CI, -6.28 to 4.40). DISCUSSION: There was moderate evidence supporting the hypothesis that NPE has a small to moderate effect on pain and low evidence of a small to moderate effect on disability immediately after the intervention. NPE has a small to moderate effect on pain and disability at 3 months follow-up in patients with CLBP.

Nurses' and nurse assistants' beliefs, attitudes and actions related to role and function in an inpatient stroke rehabilitation unit-A qualitative study.

AIMS AND OBJECTIVES: To explore nurses' and nurse assistants' beliefs, attitudes and actions related to their function in an inpatient stroke rehabilitation unit. BACKGROUND: Several attempts have been made to describe nurses' roles and functions in inpatient neurorehabilitation. However, current understandings of the contributions that nurses and nurse assistants make to neurorehabilitation remain sparse. DESIGN: Descriptive, interpretive qualitative study. METHODS: Participant observations were conducted during 1 month in a stroke rehabilitation unit at a university hospital in the Capital Region of Denmark. The observations were audiorecorded and field notes were taken on the spot. Semistructured interviews with nurses (N = 8) and nurse assistants (N = 6) were performed. The audiorecorded observations, field notes and interviews were transcribed for inductive and deductive content analysis. RESULTS: Three main categories with underlying subcategories were identified: (i) the importance of professionalism, (ii) striving for visibility, (iii) the importance of structure. CONCLUSION: This study contributes to present understandings of nurses' and nurse assistants' roles and functions in inpatient stroke rehabilitation. We obtained insights into nursing staff's beliefs and attitudes about rehabilitation-as well as their own role and function-and furthermore how the latter affects their actions in daily practice. RELEVANCE TO CLINICAL PRACTICE: The nursing role and function are still not clearly defined. Further education is needed to strengthen the contribution of nursing staff to patients' rehabilitation. Furthermore, focus on developing a professional language and a framework that supports continuity within daily care and rehabilitation is needed.

Sedentary behaviour in patients with rheumatoid arthritis: A qualitative study.

BACKGROUND: Despite increasing interest in investigating sedentary behaviour (SB) in the general population and in patients with rheumatoid arthritis (RA), there is little documentation of the subjective experiences of SB in patients with RA. This study aimed to examine how patients with RA describe their daily SB. METHODS: Fifteen patients with RA (10 women and 5 men) from 23 to 73 years of age and with a disease duration ranging from 4 to 27 years were interviewed following a semi-structured interview guide. Data were analysed using the content analysis method described by Graneheim. RESULTS: SB appeared in three categories covering: 1) A constant battle between good and bad days; SB could be a consequence of RA in terms of days with pronounced pain and fatigue resulting in many hours of SB. 2) Adaptation to everyday life; living with the unpredictability of RA included constant modification of physical activity level causing increase in SB, especially during periods of disease flare. Prioritizing and planning of SB also functioned as part of self-management strategies. 3) It has nothing to do with my arthritis; for some patients, SB was not related to RA, but simply reflected a way of living independent of the disease. CONCLUSIONS: SB is perceived, motivated, and performed differently in patients with RA. An individually tailored approach may be essential in understanding and encouraging patients' motivation towards sustainable change in SB and activity patterns.

Partners' experiences of the postdischarge period after day surgery--a qualitative study.

AIMS AND OBJECTIVES: Day surgery shifts the responsibility of care from the hospital to patients and their families. This study explored how partners of day surgery patients experienced their role after patient discharge. BACKGROUND: Many surgical procedures formerly requiring inpatient care are now carried out on a day surgery basis, shifting responsibility of care to patients and their partners/relatives. Little is known about how partners of day surgery patients manage this responsibility. DESIGN: Qualitative descriptive. METHODS: Individual semi-structured interviews with 11 partners of day surgery patients who had undergone shoulder surgery. Systematic text condensation was used to analyse data. RESULTS: The following aspects were identified: the first is 'It's all about being there for the patient by taking care of the patient's needs and by mobilising one's network,' referring to the provision of reassurance, helping with activities of daily living, facilitating information, being on the alert for adverse events and taking an average 1-4 days off work. The second is 'Contributing to society as a partner,' referring to partners' sense of citizenship resulting from being carers. Finally, prior experiences of hospitalisation and illness appeared to impinge upon partners' ways of taking on the responsibility of care. CONCLUSION: Partners readily accepted their role as carers. This is essential for the day surgery concept to succeed. RELEVANCE TO CLINICAL PRACTICE: In the light of the continuing expansion of day surgery and the ensuing transfer of care to patients and their relatives, it is important for healthcare professionals to assess relatives' capability to care for day surgery patients.