What do patients value learning about pain? A mixed-methods survey on the relevance of target concepts after pain science education

Abstract

Pain education is a popular treatment approach for persistent pain that involves learning a variety of concepts about pain (ie, target concepts), which is thought to be an important part of recovery. Yet, little is known about what patients value learning about pain. A mixed-methods survey was conducted to identify pain concepts that were valued by people with persistent pain who improved after a pain science education intervention. An online survey was distributed to 123 people who were treated for persistent pain with a pain science education approach; responses of participants who self-identified as “improved” were analysed. Open-ended survey questions were analysed using reflexive thematic analysis and close-ended questions were analysed for frequency of responses. Each question-type was analysed separately, before integration for complementarity. We analysed the data of 97 participants. We constructed 3 themes from the open-ended questions. Pain does not mean my body is damaged (theme 1) captured the importance of abandoning preexisting ideas that pain indicated damage. Thoughts, emotions and experiences affect pain (theme 2) captured the value of recognising multifactorial influences on pain. I can retrain my overprotective pain system (theme 3) captured the importance of conceptualising pain as a heightened protective response that could be lessened. Responses from close-ended questions confirmed that the target concepts represented by these themes are among those most valued, although divergence with the qualitative data suggests differences between patient and clinician language. These data offer patient-centred conceptualizations and language that could assist in further refining pain education interventions.

Exploring how people with chronic pain understand their pain: a qualitative study

“…A very recent survey of pain education concepts most valued by patients after intervention [25] showed substantial integration of neuroscientific concepts by the majority who reported gains but, consistent with this study's findings, knowledge revision did not necessarily lead to behavioural change.…”

“…Further, since some PNE interventions have failed to show expected outcomes, this study suggests that PNE might strengthen its practical recommendations. There is little basis to expect that education alone, however intellectually appealing, will be sufficient to overcome the threat of pain and to change behaviours that are deeply wired into mammalian systems [25,60]. Where pain has interfered across many areas of life, direct behavioural interventions and experiential disconfirmationsmultiple and repeated across contextsmay be required for lasting behavioural change.…”

“…A recent meta-ethnography of 195 qualitative studies of chronic pain experience concluded that treatment may benefit from greater validation of patients' own conceptualisations [57]; the authors propose that interventions might usefully be more personalised and iterative. Further research might also explore barriers to reconceptualisation in those patients who do not benefit from PNE (excluded in [25]).…”

“…Understanding how education interacts with prior pain beliefs requires appreciation of these beliefs. Inconsistencies or conflict between new and existing models do not necessarily motivate knowledge revision and conceptual change [25]. Few accounts of how people with chronic pain make sense of their pain capture individuals' implicit or explicit models [26].…”

Treating persistent pain after breast cancer: practice gaps and future directions

“…To reconceptualise the meaning of pain, tailored, individualized education addressing the concepts that are relevant to that person with persistent pain should be provided. A recent mixed-method study in people who had recovered from a range of chronic pain states revealed three key concepts they considered to hold most value [87]. The first concept 'Pain does not mean my body is damaged' captures the importance of abandoning pre-existing ideas that pain indicates tissue damage.…”