Defining suffering in pain: a systematic review on pain-related suffering using natural language processing

Abstract

Understanding, measuring, and mitigating pain-related suffering is a key challenge for both clinical care and pain research. However, there is no consensus on what exactly the concept of pain-related suffering includes, and it is often not precisely operationalized in empirical studies. Here, we (1) systematically review the conceptualization of pain-related suffering in the existing literature, (2) develop a definition and a conceptual framework, and (3) use machine learning to cross-validate the results. We identified 111 articles in a systematic search of Web of Science, PubMed, PsychINFO, and PhilPapers for peer-reviewed articles containing conceptual contributions about the experience of pain-related suffering. We developed a new procedure for extracting and synthesizing study information based on the cross-validation of qualitative analysis with an artificial intelligence-based approach grounded in large language models and topic modeling. We derived a definition from the literature that is representative of current theoretical views and describes pain-related suffering as a severely negative, complex, and dynamic experience in response to a perceived threat to an individual's integrity as a self and identity as a person. We also offer a conceptual framework of pain-related suffering distinguishing 8 dimensions: social, physical, personal, spiritual, existential, cultural, cognitive, and affective. Our data show that pain-related suffering is a multidimensional phenomenon that is closely related to but distinct from pain itself. The present analysis provides a roadmap for further theoretical and empirical development.

Figure 1.

The multidimensional conceptual framework of pain-related suffering. The figure visualizes the conceptual framework of pain-related suffering. It distinguishes 8 dimensions of pain-related suffering, which are further specified by 2 to 4 descriptors—with the exception of the spiritual dimension. The strength of the lines that stand for the different dimensions and descriptors represents the number of conceptualizations from the literature that are summarized in each of them. The 4 descriptors “isolation,” “objectification one's own body,” “impaired physical functioning,” and “cognitive impairment” are not included in the final conceptual framework for pain-related suffering. For the purpose of clarity, they are nevertheless visually labeled (in a lighter color) to make the differences between the manually determined and the final framework transparent.

Figure 2.

The disciplines within the text corpus and their frequency. The diagram shows which disciplines the articles in the text corpus come from. In the middle, clusters of disciplines are listed, which are further differentiated by the list on the right. The width of each line indicates the number of studies from the respective discipline or cluster.

Figure 3.

Frequencies of the defining aspects of pain-related suffering in our text corpus. All aspects of pain-related suffering that were mentioned by at least 2 definitions from our text corpus are listed. The different circles of the diagram indicate how many articles mention each aspect.