What do people living with chronic pain want from a pain forecast? A research prioritisation study

BackgroundPeople with chronic pain report feelings of uncertainty and unpredictability around their future pain. A pain-forecasting model could provide important information to support individuals to manage their daily pain and improve their quality of life. To be useful, the model should be developed with people living with chronic pain. We conducted Patient and Public Involvement (PPI) work, with the aim of this PPI to design the content of a pain-forecasting model by (1) learning participants priorities in the features of pain provided by a pain forecast and (2) understanding the benefits that participants perceive they would gain from such a forecast. MethodsA focus group of 12 participants identified potential features, benefits and drawbacks of a pain forecast. In a survey, participants with chronic pain (n = 148) prioritised the identified pain features and perceived benefits. ResultsFocus group participants identified anticipatory anxiety and fears around data-sharing as potential drawbacks. Survey respondents prioritised forecasting of pain flares (68%) and fluctuations in pain severity (64%). Specific priorities about pain flares were the timing of the onset and the severity. Of those surveyed, 75% would use a future pain forecast and 80% perceived making plans (e.g. shopping, social) as a benefit. ConclusionsFor people with chronic pain, the timing of the onset of pain flares, the severity of pain flares and fluctuations in pain severity were prioritised as being key features of a pain forecast, and making plans was prioritised as being a key benefit. Plain English SummaryChronic pain is a symptom of many long-term health conditions. People with chronic pain have reported that the severity of their pain is both uncertain and unpredictable. To combat this, we want to build a pain forecast, to predict future pain severity. We hypothesise that a pain forecast would reduce pain-related uncertainty and improve quality of life. It is important that a pain forecast provides useful information to people living with chronic pain. Therefore, this work aimed to understand why participants might use a forecast, and what they would want to see in a pain forecast. A focus group was conducted to identify features, benefits and drawbacks of a pain forecast. A survey was then conducted to prioritise the features and benefits. Participants of the focus group highlighted concerns around data-sharing and potential anxiety about knowing when pain might happen. Survey participants prioritised a forecast that provided information about pain flares (periods of increased pain severity) and fluctuations in pain severity. The key perceived benefit of a forecast was the ability to make plans (such as shopping and social plans).