Co-designing a mobile Internet service for self-management of physical activity in rheumatiod arthritis

Aim: The overall aim of the thesis was to describe and evaluate the content and outcome of co-designing a mobile Internet service for self-management of physical activity in rheumatoid arthritis (RA) with active lead user involvement, within the action research paradigm. Context: Physical activity is known for its health benefits. However, maintaining a physically active lifestyle is a great challenge for most people, and maybe even more so for people living with RA. IT and mobile phones provide additional means to deliver health care services, i.e. mHealth, for physical activity self-management. Further, involvement of lead users in the development of services has been reported to improve their usability and effectiveness. Process: In the first phase of the co-design process, six focus group interviews were performed with lead users (n=26) to explore their ideas on core features (Study I). In the next phase, four workshops were conducted, which included lead users, clinical and researcher physiotherapists, an eHealth strategist and an officer from the Swedish Rheumatism Association (n=10). The aim was to specify the system requirements of the future service (Study II and III). Video recordings, natural observations, prototypes of the future service and an online notice board were used to collect data on the requirements and challenges of co-design. In the third phase, the first test version of the service was produced and evaluate in terms of the participants’ utilization of and experiences with the service (Study IV). Log-data were collected during the six week test period. Web questionnaires were sent out to and telephone interviews were performed with the participants after the test period. Content: Four core aspects that are important to consider in the development of the mHealth service were identified: features, customized options, user interface, and access and implementation (result Study I). To produce the requirements specification, the participants had to merge their different perspectives, which was the core challenge of codesign (Study II). The merging resulted in “tRAppen”, an mHealth service for maintenance of physical activity. tRAppen included two key components: 1) “My self-regulation features” and 2) “My peer support features” (result Study III). The first test version of tRAppen included 22 different behavior change techniques. Outcome: Twenty-eight participants tested tRAppen (result Study IV). Most participants registered physical activity, sent likes and made an exercise plan. tRAppen was generally rated as easy and fun to use, and all participants would recommend it to other people. The results also described the experiences of using tRAppen as being influenced by physical and mental state and personal preferences. Conclusions: The use of co-design in the development of the physical activity selfmanagement service tRAppen was successful. The first test version of tRAppen was perceived as feasible and to have the potential to support a physically active lifestyle in people with RA. Co-design in collaborative workshops was an extensive decision-making process that put high demands on the participants’ ability to find solutions, negotiate, come to agreements and reach final decisions

Allied health integration: Collaborative care for arthritis and other musculoskeletal conditions

Musculoskeletal conditions, including rheumatoid arthritis, osteoarthritis and osteoporosis, are prevalent in the Australian population, and they impose a substantial burden on the health care system and the community, reflected by their status as a national health priority area. They are the main cause of impaired physical functioning globally. These conditions have high chronicity rates and often have a long term impact, leading to reduced mobility and dexterity, chronic pain, reduced capacity for employment, and negative impact on family and social life. Much of the care for these conditions is provided in primary health care (PHC) settings

Patient initiated clinics for patients with chronic or recurrent conditions managed in secondary care: a systematic review of patient reported outcomes and patient and clinician satisfaction

This is the final version of the article. Available from BioMed Central via the DOI in this record.BACKGROUND: The cost to the NHS of missed or inappropriate hospital appointments is considerable. Alternative methods of appointment scheduling might be more flexible to patients' needs without jeopardising health and service quality. The objective was to systematically review evidence of patient initiated clinics in secondary care on patient reported outcomes among patients with chronic/recurrent conditions. METHODS: Seven databases were searched from inception to June 2013. Hand searching of included studies references was also conducted. Studies comparing the effects of patient initiated clinics with traditional consultant led clinics in secondary care for patients with long term chronic or recurrent diseases on health related quality of life and/or patient satisfaction were included. Data was extracted by one reviewer and checked by a second. Results were synthesised narratively. RESULTS: Seven studies were included in the review, these covered a total of 1,655 participants across three conditions: breast cancer, inflammatory bowel disease and rheumatoid arthritis. Quality of reporting was variable. Results showed no significant differences between the intervention and control groups for psychological and health related quality of life outcomes indicating no evidence of harm. Some patients reported significantly more satisfaction using patient-initiated clinics than usual care (p < 0.001). CONCLUSIONS: The results show potential for patient initiated clinics to result in greater patient and clinician satisfaction. The patient-consultant relationship appeared to play an important part in patient satisfaction and should be considered an important area of future research as should the presence or absence of a guidebook to aid self-management. Patient initiated clinics fit the models of care suggested by policy makers and so further research into long term outcomes for patients and service use in this area of practice is both relevant and timely.This systematic review was funded by the National Institute of Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) for the South West. The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health

Patient involvement in clinical research: Why, when, and how

The development of a patient-centered approach to medicine is gradually allowing more patients to be involved in their own medical decisions. However, this change is not happening at the same rate in clinical research, where research generally continues to be carried out on patients, but not with patients. This work describes the why, when, and how of more active patient participation in the research process. Specific measures are proposed to improve patient involvement in 1) setting priorities, 2) study leadership and design, 3) improved access to clinical trials, 4) preparation and oversight of the information provided to participants, 5) post-study evaluation of the patient experience, and 6) the dissemination and application of results. In order to achieve these aims, the relative emphases on the ethical principles underlying research need to be changed. The current model based on the principle of beneficence must be left behind, and one that upholds the ethical principles of autonomy and non maleficence should be embraced. There is a need to improve the level of information that patients and society as a whole have on research objectives and processes; the goal is to promote the gradual emergence of the expert patient

Effects of exercise and physical activity promotion : meta-analysis informing the 2018 EULAR recommendations for physical activity in people with rheumatoid arthritis, spondyloarthritis and hip/knee osteoarthritis

Objective To evaluate the effectiveness of exercise and physical activity (PA) promotion on cardiovascular fitness, muscle strength, flexibility, neuromotor performance (eg, balance) and daily PA in people with rheumatoid arthritis (RA), spondyloarthritis (SpA) and hip/knee osteoarthritis (HOA/KOA). Methods systematic review (SR) and meta-analysis (MA) were performed searching the databases PubMed/Medline, CENTRAL, Embase, Web of Science, Emcare and PsycInfo until April 2017. We included randomised controlled trials (RCTs) in adults (≥18 years) with RA, SpA and HOA/KOA, investigating the effects of exercise or PA promotion according to the public health PA recommendations by the American College of Sports Medicine. The time point of interest was the first assessment after the intervention period. If suitable, data were pooled in a MA using a random-effects model presented as standardised mean difference (SMD). Results The SR included 63 RCTs, of which 49 (3909 people with RA/SpA/HOA/KOA) were included in the MA. Moderate effects were found of aerobic exercises and resistance training on cardiovascular fitness (SMD 0.56 (95% CI 0.38 to 0.75)) and muscle strength (SMD 0.54 (95% CI 0.35 to 0.72)), respectively, but no effect of combined strength/aerobic/flexibility exercises on flexibility (SMD 0.12 (95% CI -0.16 to 0.41)). PA promotion interventions produced a small increase in PA behaviour (SMD 0.21 (95% CI 0.03 to 0.38)). Conclusion Exercises and PA promotion according to public health recommendations for PA improved cardiovascular fitness, muscle strength and PA behaviour, with moderate effect sizes in people with SpA, RA and HOA/KOA.Peer reviewe

Effects of exercise and physical activity promotion : meta-analysis informing the 2018 EULAR recommendations for physical activity in people with rheumatoid arthritis, spondyloarthritis and hip/knee osteoarthritis

Objective To evaluate the effectiveness of exercise and physical activity (PA) promotion on cardiovascular fitness, muscle strength, flexibility, neuromotor performance (eg, balance) and daily PA in people with rheumatoid arthritis (RA), spondyloarthritis (SpA) and hip/knee osteoarthritis (HOA/KOA). Methods systematic review (SR) and meta-analysis (MA) were performed searching the databases PubMed/Medline, CENTRAL, Embase, Web of Science, Emcare and PsycInfo until April 2017. We included randomised controlled trials (RCTs) in adults (≥18 years) with RA, SpA and HOA/KOA, investigating the effects of exercise or PA promotion according to the public health PA recommendations by the American College of Sports Medicine. The time point of interest was the first assessment after the intervention period. If suitable, data were pooled in a MA using a random-effects model presented as standardised mean difference (SMD). Results The SR included 63 RCTs, of which 49 (3909 people with RA/SpA/HOA/KOA) were included in the MA. Moderate effects were found of aerobic exercises and resistance training on cardiovascular fitness (SMD 0.56 (95% CI 0.38 to 0.75)) and muscle strength (SMD 0.54 (95% CI 0.35 to 0.72)), respectively, but no effect of combined strength/aerobic/flexibility exercises on flexibility (SMD 0.12 (95% CI -0.16 to 0.41)). PA promotion interventions produced a small increase in PA behaviour (SMD 0.21 (95% CI 0.03 to 0.38)). Conclusion Exercises and PA promotion according to public health recommendations for PA improved cardiovascular fitness, muscle strength and PA behaviour, with moderate effect sizes in people with SpA, RA and HOA/KOA.Peer reviewe