Patients' experience of a novel interdisciplinary nurse-led self-management intervention (INSELMA)-a qualitative evaluation.

BACKGROUND: Despite continuous improvements in anti-rheumatic pharmacological treatment, people with chronic inflammatory arthritis still report substantial disease impact. Based on the framework for complex interventions, we thus developed INSELMA, a novel nurse-coordinated multidisciplinary self-management intervention for patients with rheumatoid arthritis, psoriatic arthritis or axial spondyloarthritis. Based on individual biopsychosocial assessments, a rheumatology nurse facilitated goal setting and coordinated interdisciplinary support. The aim of this study was to explore the patients' experience of participating in the six-months INSELMA intervention. METHODS: Individual semi-structured interviews were conducted with 15 of the participants after their final follow-up. Thematic analysis was applied. RESULTS: The analysis derived four overall themes. (1) A new opportunity at the right time. The participants' disease impacted all areas of daily life. Participation in INSELMA was experienced as an opportunity to improve symptoms and together reduce long-held challenges they had fought alone, until now. (2) The importance of person-centred goals. The participants found it meaningful to work with their individual goals, which encompassed physical, psychological, and social factors. Having time between consultations to work with goals at home was important. (3) Empathy, partnership and a little nudging from health professionals are essential. The empathic nurses' continuous support and coaching helped participants become aware of their own resources. The participants highlighted having access to support from a physiotherapist and occupational therapist with rheumatology experience as important. (4) I got more than I could have hoped for. Most of the participants experienced decreased symptom load and improvement in physical strength, mobility, sleep, and mood as well as increased energy, knowledge, and self-management ability. The participants expressed new hope for the future with an improved ability to manage their symptoms and work towards new goals. CONCLUSION: The participants found the INSELMA intervention meaningful and feasible. They experienced decreased disease impact and increased activity levels, facilitated by empathy and self-management support from health professionals.

Prevalence of anxiety and depression and the association with self-management behaviour in >12 000 patients with inflammatory rheumatic disease: a cross-sectional nationwide study.

OBJECTIVE: To investigate the prevalence of anxiety and depression among patients with inflammatory arthritis (IA) and evaluate the association of these mental health issues with self-management behaviour. METHODS: In this nationwide cross-sectional study, we analysed data from 12 713 adult Danish patients with rheumatoid arthritis (RA), psoriatic arthritis (PsA) or spondyloarthritis (SpA). Patients received an electronic questionnaire covering sociodemographics, self-management behaviour and mental health status. Questionnaire data were linked to clinical data from the Danish Rheumatology database (DANBIO) and the Danish National Patient Registry. The prevalence of anxiety and depression (by the Hospital Anxiety and Depression Scale for Anxiety (HADS-A) and Depression (HADS-D)) was estimated separately for RA/PsA/SpA. The association between mental health status and low self-management behaviour (adherence to treatment, health activation and physical activity) was estimated using multivariable logistic regression, adjusting for age, sex, educational level and comorbidity. RESULTS: The prevalence of anxiety (HADS-A≥8) was highest for patients with SpA (34.5% (95% CI 32.4% to 36.6%)) and lowest for patients with RA (22.1% (95% CI 21.2% to 23.0%)), it was higher for women, younger (<55 years) and recently diagnosed (<3 years) patients and those with basic education. Similar prevalence estimates were found for depression. Across diagnoses, the clinically relevant symptoms of anxiety and depression (HADS≥8) were significantly associated with low self-management behaviour. CONCLUSION: Patients with IA showed substantial levels of anxiety and depression. A statistically significant association between anxiety and depression and low self-management behaviour was identified. These findings call for a systematic approach to identifying mental health issues in patients with IA.

Cost-effectiveness of motivational counselling and text reminders in patients with rheumatoid arthritis: results based on a randomised clinical trial.

OBJECTIVE: The aim of this study was to evaluate the cost-effectiveness of an individually tailored intervention consisting of motivational counselling and text message reminders to reduce sedentary behaviour in comparison with usual lifestyle in patients with rheumatoid arthritis (RA). METHODS: RA patients (n=150) were randomised to the intervention or control group. Costs of the intervention and healthcare utilisation during a 22-month follow-up period were reported. Outcomes were objectively measured as 24 hours/7 days sitting time and self-reported Health Assessment Questionnaire (HAQ) and EQ-5D scores at baseline, and 16 weeks, 10 and 22 months after baseline. Cost-effectiveness was reported as incremental cost-effectiveness ratios and statistical uncertainty presented as cost-effectiveness acceptability curves. RESULTS: The intervention cost was estimated at €387 per participant. The mean incremental 22-month healthcare cost was €-1165 (95% bootstrap CI -5613 to 3283). An incremental 20%-point of the participants (CI 10.4% to 29.6%) reduced their daily sitting time more than 50 min and 36%-point reported better HAQ scores (change>0.22). The time-weighted health utilities (quality-adjusted life years (QALYs)) increased by 0.10 (CI 0.02 to 0.18) and 0.11 (CI 0.04 to 0.19) for EQ-5D index and EQ-VAS, respectively. The intervention dominated usual lifestyle by offering better outcomes and lower costs. With a threshold value of €30 000/QALY the intervention has a probability of 95% of being cost-effective. CONCLUSION: This protocolised cost-effectiveness analysis showed that an individually tailored intervention aimed at reducing sedentary behaviour in patients with RA is improving participants' 22-month health status and reducing healthcare costs. These results suggest that the intervention should be implemented in routine rheumatology care. TRIAL REGISTRATION NUMBER: NCT01969604.

Welfare costs in patients with rheumatoid arthritis and their partners compared with matched controls: a register-based study.

Rheumatoid arthritis (RA) is a chronic autoimmune disease with significant morbidity, mortality, and costs for the individual patient and for society. The purpose of this study was to examine welfare costs in patients with RA including their partners before and after initial diagnosis. Data were collected from population-based registers in the period from 1998 to 2009. A total of 25,547 Danish patients with a diagnosis of RA and 15,660 of their partners were identified and compared with 101,755 randomly selected age- and gender-matched controls and 62,681 control partners. The direct and indirect costs were calculated for patients and their partners and compared to matched controls. These included inpatient and outpatient treatment, medication, income from employment and social transfer payments. Patients with RA had statistically significantly more inpatient and outpatient costs than control subjects, i.e., treatment (€346 vs. €211), hospitalization (€1261 vs. €778), and medication use (€654 vs. €393). The costs associated with the patients were present 11 years before diagnosis of RA (€1592) compared with control subjects (€1172). Furthermore, income from employment was lower for patients (€14,023) than for control subjects (€17,196). Being a partner to a patient with RA was associated with high total welfare costs. This register-based study shows that RA has significant welfare costs for patients, their partners, and society. The differences in total health costs exist up to 11 years before the diagnosis of RA is established.

Growing older in the context of needing geriatric assessment: a qualitative study.

AIM: The number of older adults will increase worldwide in the next 30 years, with many expected to develop chronic diseases and consequently require additional medical assessments and adequate care. The aim of this study was to describe how a group of older adults who need geriatric assessment experience growing older. METHODOLOGY: A qualitative study was performed. The empirical data consisted of qualitative in-depth interviews with eight older persons referred to geriatric assessment (median age 76, range 65-86). The interviews were analysed based on Giorgi's descriptive phenomenological methodology. RESULTS: The results led to an overall essence and five themes. The five themes were identified: (i) considerations to avoid weakness, (ii) compensation for the inability to perform certain activities, (iii) aides - a symbol of freedom or limitation, (iv) lifestyle considered being particularly significant and (v) considerations about the end of life as a component of growing older. The essence was defined as: illness essential for the experience of growing older and pointed to the experience of growing older that highlighted that experiencing illnesses and limitations served as reminders of their advancing age. CONCLUSION: Growing older while in need of comprehensive geriatric assessment led to participants feeling they were no longer able to do the same things, they used to do. Consequently, compensation became an essential part of adaption to the altered situation. Aides that helped to overcome limitations in every daily life had the status of either creating freedom or being limiting in things they wished to do. Considerations about lifestyle were focused on housing and change of dwelling. This also led to thoughts about the future and end of life. Additional research regarding accommodations in older age is warranted to offer the best solutions for older people.

The efficacy of motivational counseling and SMS-reminders on daily sitting time in patients with rheumatoid arthritis: protocol for a randomized controlled trial.

BACKGROUND: Patients with RA (Rheumatoid Arthritis) are more sedentary than the general population. Reduction of Sedentary Behaviour (SB) has been suggested as a mean for improvement of health in patients with chronic diseases and mobility problems. Short-term intervention studies have demonstrated that SB can be reduced by behavioural interventions in healthy populations. However, it remains unexplored whether it is valid for patients with RA also. Therefore, the aim of this trial is to investigate the efficacy of an individually tailored, theory-based motivational counseling intervention on reducing daily sitting time in sedentary patients with RA. Additionally, to explore whether a reduction in daily sitting time is associated with reduced pain and fatigue, self-reported physical function, self-efficacy, improved health-related quality of life (HR-QoL) and cardiovascular biomarker levels, and finally to assess the cost-effectiveness of the intervention. METHODS/DESIGN: For this parallel group randomized trial, 150 patients with RA and at least 5 hours of sitting time per day, will be recruited from a rheumatology outpatient clinic, and block-randomized to the intervention group or the control group receiving usual care. The intervention includes: 1) individual motivational counseling (in total 3 sessions) on reduction of daily sitting time in combination with 2) individual Short Text Message Service (SMS) reminders over a 16-week intervention period. Primary outcome is change in daily sitting time (minutes) from baseline to 16 weeks measured objectively using an ActivPAL® Activity Monitor. Secondary outcomes include fatigue, pain, physical function, HR-QoL, self-efficacy, costs and cost-effectiveness. Furthermore, anthropometric measures will be included as well as measurement of blood pressure and serum lipids. All outcomes are assessed at baseline and repeated after 16 weeks. Follow-up assessments are made at 6 and 18 months post-intervention. DISCUSSION: The intervention is simple, non-invasive and may be implemented at low costs. If the study confirms the positive results expected, the intervention might be implemented in clinical practice and potentially transferred to other clinical populations. TRIAL REGISTRATION: ClinicalTrial.gov registration number: NCT01969604 . Date of registration: 17 October 2013.

Quality of life of elderly persons with cancer: a 3-month follow-up.

We investigated the quality of life (QoL) of newly diagnosed persons with cancer aged 65 years at baseline and 3 months after, in relation to age, contact with the healthcare system, activities of daily living, hope, social network and support using the European Organization for Research and Treatment of Cancer QLQ-C30, Katz ADL, Nowotny's Hope Scale, and the Interview Schedule for Social Interaction. Participation at baseline was 101 (74 women, 27 men), and after 3 months was 85(66 women, 19 men). Fatigue was the most reported symptom both at baseline and 3 months after. No significant changes were found in QoL from baseline to 3 months after, whereas perceived social network and 2 subscales ("confidence" and "comes from within") in Nowotny's Hope Scale deteriorated significantly. Dependency, reduced economic ability, and low level of hope were significantly associated with low QoL at the 3-month follow-up. From the perspective of QoL, nurses need to address more specifically the most vulnerable elderly cancer patients: those who are dependent in instrumental activities of daily living, those who perceive reduced economic ability, and those who need assistance to discover new strategies to strengthen hope.