BackgroundFlare-ups in juvenile idiopathic arthritis (JIA) are characterized by joint pain and swelling and often accompanied with fatigue, negative emotions, and reduced participation in activities. To minimize the impact of JIA on the physical and psychosocial development and well-being of young people (YP), it is essential to regularly monitor disease activity and side effects, as well as to support self-management such as adherence to treatment plans and engagement in general health-promoting behaviors. Smartphone technology has the potential to engage YP with their health care through convenient self-monitoring and easy access to information. In addition, having a more accurate summary of self-reported fluctuations in symptoms, behaviors, and psychosocial problems can help both YP and health care professionals (HCPs) better understand the patient’s condition, identify barriers to self-management, and assess treatment effectiveness and additional health care needs. No comprehensive smartphone app has yet been developed in collaboration with YP with JIA, their parents, and HCPs involved in their care.ObjectivesThe objective of this study was to design, develop, and evaluate the acceptability and usability of JIApp, a self-management smartphone app system for YP with JIA and HCPs.MethodsWe used a qualitative, user-centered design approach involving YP, parents, and HCPs from the rheumatology team. The study was conducted in three phases: (1) phase I focused on developing consensus on the features, content, and design of the app; (2) phase II was used for further refining and evaluating the app prototype; and (3) phase III focused on usability testing of the app. The interview transcripts were analyzed using qualitative content analysis.ResultsA total of 29 YP (aged 10-23, median age 17) with JIA, 7 parents, and 21 HCPs were interviewed. Major themes identified as the ones that helped inform app development in phase I were: (1) remote monitoring of symptoms, well-being, and activities; (2) treatment adherence; and (3) education and support. During phase II, three more themes emerged that informed further refinement of the app prototype. These included (4) adapting a reward system to motivate end users for using the app; (5) design of the app interface; and (6) clinical practice integration. The usability testing during phase III demonstrated high rates of overall satisfaction and further affirmed the content validity of the app.ConclusionsWe present the development and evaluation of a smartphone app to encourage self-management and engagement with health care for YP with JIA. The app was found to have high levels of acceptability and usability among YP and HCPs and has the potential to improve health care and outcomes for this age group. Future feasibility testing in a prospective study will firmly establish the reliability, efficacy, and cost-effectiveness of such an app intervention for patients with arthritis.
English NHS inpatient surveys consistently identify that noise at night in hospitals and its impact on patients' sleep is a persisting problem that needs addressing. To identify how noise at night in hospital affects patients on general wards and the range of interventions aimed at reducing the problem, a systematic mapping of the literature was undertaken. All primary studies and relevant literature published January 2003-July 2013 were included. Key issues identified in the literature included noise levels and causes, impact on patient experience, and lack of staff awareness. Interventions to reduce noise were targeted at staff education, behaviour modification, care organisation and environmental solutions. The scoping suggested that when compared with specialist units, there is little evidence on effective interventions reducing disturbance from night-time noise on general wards. The available evidence suggests a whole systems approach should be adopted to aid quality sleep and promote recovery.
Although English government policy has encouraged the implementation of self-management programmes in services for people with long term conditions, the evidence for their efficacy has been limited. People with long term neurological conditions utilise community based health services including community nursing, and have particular needs in regards to self-management. This article provides an overview of the evidence of the effectiveness of self-management interventions for people with long term neurological conditions, in particular those with stroke, Parkinson's Disease and Multiple Sclerosis. The current need for better interventions is highlighted, particularly the importance of providing condition-specific information and deliverance of interventions in a group setting to improve self-management outcomes. In response to previous weaknesses of selfmanagement interventions for this population, an innovative Hertfordshire Neurological Service selfmanagement programme is discussed with implications for future research described.
Objectives To identify how refractory disease (or relevant terminology variations) in Rheumatoid Arthritis (RA) and Polyarticular Juvenile Idiopathic Arthritis (PolyJIA) is defined and establish the key components of such definitions. Methods Searches were undertaken of English language articles within six medical databases, including manual searching, from January 1998 to March 2020 (PROSPERO: CRD42019127142). Articles were included if they incorporated a definition of refractory disease, or non-response, in RA/PolyJIA, with clear components to the description. Qualitative content analysis was undertaken to describe refractory disease in RA/PolyJIA and classify each component within each definition. Results Of 6,251 studies screened, 646 studies met inclusion criteria; 581 of these applied non-response criteria whilst 65 provided refractory disease definitions/descriptions. From the non-response studies, 39 different components included various disease activity measures, emphasising persistent disease activity and symptoms, despite treatment with ≥1bDMARD. From papers with clear definitions for Refractory Disease, 41 components were identified and categorised into three key themes: (i) Resistance to multiple drugs with different mechanisms of action, typically ≥2bDMARDs, (ii) Persistency of symptoms and disease activity, and (iii) Other contributing factors. The most common term used was “Refractory” (80%), whilst only 16.9% reported explicitly how their definition was generated e.g. clinical experience or statistical methods. Conclusion Refractory Disease is defined as resistance to multiple drugs with different mechanisms of action by persistency of physical symptoms and high disease activity, including contributing factors. A clear unifying definition needs implementing as the plethora of different definitions makes study comparisons and appropriate identification of patients difficult.
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