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HELSEVEL-Gode og effektive helse-, omsorgs- og velferdstjenester

Living well with chronic pain: using person-centered e-health design to support self-management

Alternative title: Bedre livskvalitet ved kronisk smerte: bruk av person-sentrert e-helse design i læring og mestring

Awarded: NOK 19.1 mill.

Nearly one third of the adult Norwegian population experiences chronic pain, and chronic pain is the most common cause of sick leave and disability pension in Norway. National authorities, health care personnel and patients alike are calling for efficient new ways to improve health care for this large part of the population. A growing body of research indicates that programs using the possibilities of digital solutions can contribute to successful self-management of chronic illness. Regarding chronic pain, however, there is a need for more research to determine what type of technology-based programs can promote self-management, learning and mastery, which type of programs are preferred by patients with chronic pain, and also how such programs can be made publicly available to people with chronic pain. This research project seeks to develop, test and incorporate an easily available and effective digital self-management program for people with chronic pain. National and international chronic pain experts work together on the project, in close collaboration with people with chronic pain and their health care providers. The users involved process in the project are of essence to ensure that the final program centers around the needs, wishes and requirements of the actual users. The effects of the program will be studied in terms of impact on pain and well-being, and strategies for how to best make the final program available to the public will be explored. The goal is for the program to be offered to patients with chronic pain either by itself or as a supplement to current treatment. When completed, this project has the potential to contribute to better health care, reduced societal burden and most importantly to improved quality of life for people living with chronic pain. The project goal will be reached through three work packages (WPs): 1) Design, development and pilot testing of a digital self-management program 2) Randomized Controlled Trial (RCT) 3) Qualitative examinations, cost-benefit analyses and implementation exploration The project was established in 2017 and began with start-up meetings with collaborators and obtaining approvals from the regional ethics committee and the Institutional Review Board equivalent. For WP 1, interviews were first conducted with patients (N=20), family care givers (N=5) and healthcare professionals (N=12) focusing on current status as well as the wishes and needs associated with a potential e-health intervention. Data from interviews were published 2019/2020. Workshops with similar focus were also conducted. In 2018/2019, the e-health program EPIO was developed by software developers and designers, and tested by patients and health professionals in multiple iterations. The design and development process of EPIO was published in 2020. The pilot study where 50 patients tested the solution was conducted in 2019, and findings published in 2020. Findings from interviews conducted with participants after the pilot study will be submitted for publication during the fall 2021. In WP 2, an RCT started October 2019. In order to ensure representative study recruitment, meetings and collaborative agreements have been arranged at various institutions treating patients with pain (e.g., pain clinics, learning and mastery centers, physiotherapists, occupational therapists, municipal health care services and general practitioners) in southeastern Norway. Due to the Covid pandemic, the recruitment of study participants was slowed to a near stop in the spring of 2020. From September 2020, recruitment slowly improved with the use of video consultation options, but the project has been significantly delayed because of the situation(s) surrounding the COVID pandemic. For WP 3, a systematic literature review summarizing implementation strategies used in the implementation of e-health interventions was published in 2019. Review focus centered around what type of implementation actions (e.g., training, information, leader involvement, key personnel, incentives etc.) are needed and used when implementing various types of e-health interventions/programs, and what types have been the most effective. In addition, WP 3 will provide a process evaluation which will be conducted alongside the RCT to prepare for implementation of the digital program to clinical practice post study completion. Two workshops addressing these issues have been conducted in 2021. The project has been presented internationally with posters, published abstracts and several oral presentations at national and international meetings and conferences so far. Due to the Covid pandemic, presentations at conferences and meetings have unfortunately been significantly limited in 2020-2021.

Chronic pain seriously affects public health in Norway, where as much as 30% of adults experience moderate-to-severe chronic pain, and chronic pain is the most common cause of sick leave and disability pension. National authorities and patients alike are calling for efficient new ways to improve health care for this large population, a call that the proposed study aims to answer. A growing body of research supports efficacy of e-health interventions in contributing to successful self-management of chronic illness. However, more research is needed to establish evidence and effectiveness for people with chronic pain. There is also a gap in knowledge on user perspectives in designing e-health interventions, and in factors facilitating implementation. Closing this gap is vital, and this project aims to do so through developing, testing and evaluating a person centered interactive e-health intervention to support self-management for people with chronic pain. The goal will be reached through 1) designing, developing and pilot-testing an e-health intervention, 2) employing a randomized controlled trial to evaluate the intervention in comparison with a control group, and 3) evaluating for sustained use of the intervention through qualitative examinations, cost-benefit analyses and implementation explorations. The project will use a person-centered approach, and the intervention will be developed through iterative processes and in close collaboration with patient representatives. The research team is well prepared for this project, and the alliance of interdisciplinary experts from leading national and international research centers, in close collaboration with user representatives, facilitates high quality science from development to testing and preparation for implementation. If effective, this intervention has the potential to contribute to better health care, reduced societal burden and most importantly to improved quality of life for people living with chronic pain.

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HELSEVEL-Gode og effektive helse-, omsorgs- og velferdstjenester