User identified needs and requirements in the development of an eHealth pain management intervention

Background: A growing body of evidence supports the efficacy of eHealth interventions in coping with a variety of illnesses and disorders, including short- and long-term pain conditions. The efficacy and continued use of eHealth treatment programs depend not only on content and technology but also on the patients’ motivation, acceptance and adherence. Despite interest from patients, existing chronic pain eHealth studies have experienced high attrition rates. New interventions are necessary, focusing specifically on patients’ needs, perspectives, expectations and context of use. Aim: The present study seeks to identify the unmet informational and support needs of patients with chronic pain, and to investigate how an eHealth intervention can be designed to address these needs. In doing this, caregivers experiences and needs are included. Users’ requirements for functionality and design are also explored. Method: Individual interviews were conducted with patients living with different chronic pain conditions (N=15; e.g., neuropathic pain, musculoskeletal pain and rheumatic pain). Treatment backgrounds varied, ranging from general practitioners’ visits and physical therapy in primary health care to more specialized treatments in secondary health care. Caregivers (spouses; N=5) were also interviewed to provide insight into caregivers’ experiences, needs and perspectives and to gain a deeper understanding of the patient group. Results: Interviews provided insight into needs and wishes of patients and their caregivers living with chronic pain related to everyday life and coping. The need for mastery, normalization and activity pacing were highlighted. Furthermore, the need for a positive distraction, especially in relation to high pain levels, stressful situations and struggles with sleep were expressed by both groups. Preferences as to design of an eHealth tool, type of platform and privacy issues were identified, showing accessibility to be a key factor for user adoption. Conclusions: The study provides important knowledge about the everyday needs of patients with chronic pain and their preferences in relation to a digital pain management intervention. Possible areas where an eHealth intervention might support existing treatments, such as learning and mastery courses, are also identified. Results give direction for further development and prototyping of an intervention that will ultimately be tested in a randomized controlled trial.