Understanding the lived experience of chronic pain: A systematic review and synthesis of qualitative evidence syntheses.

Background: Although multiple measures of the causes and consequences of chronic non-cancer pain (CNCP) are available and can inform pain management, no quantitative summary of these measures can describe the meaning of pain for a patient. The lived experience of pain tends to be a blind spot in pain management. This study aimed to: (1) integrate qualitative research investigating the lived experience of a range of CNCP conditions; (2) establish common qualitative themes in CNCP experience; and (3) evaluate the relevance of our results through a survey questionnaire based on these themes, administered across the United Kingdom. Methods: Four bibliographic databases were searched from inception to February 2021 to identify Qualitative Evidence Syntheses (QES) that investigated the lived experience of CNCP and its impact on everyday life and activities. Themes and trends were derived by thematic qualitative analysis in collaboration with two patient and public involvement representatives who co-created twenty survey statements. The survey was developed for testing the QES themes for validity in people living with pain. Results: The research team identified and screened 1323 titles, and considered 86 abstracts, including 20 in the final review. Eight themes were developed from the study findings: (1) my pain gives rise to negative emotions; (2) changes to my life and to myself; (3) adapting to my new normal; (4) effects of my pain management strategies; (5) hiding and showing my pain; (6) medically explaining my pain; (7) relationships to those around me; and (8) working while in pain. Each theme gave rise to one or two survey questions. The survey was shared with members of the UK pain community over a 2-week period in November 2021, and was completed by 1219 people, largely confirming the above themes. Conclusion/Implications: This study provides a validated summary of the lived experience of CNCP. It highlights the adverse nature, complications, and consequences of living with CNCP in the UK and the multiple shortcomings in the ways in which pain is addressed by others in the UK. Our findings are consistent with published meta-ethnographies on chronic non-malignant musculoskeletal pain and chronic low-back pain. Despite the underrepresentation of qualitative research in the pain literature compared to quantitative approaches, for understanding the complexity of the lived experience of pain, qualitative research is an essential tool.

A perspective on the role of language about pain.

This article contributes a perspective on pain motivated by the philosopher Ludwig Wittgenstein. According to Wittgenstein, the child learns from others that the occasions on which it manifests certain reactions-the reactions that human beings manifest when injured-make it appropriate to self-ascribe "pain". When the child can signal correctly that she is in the requisite bodily state, then she has a conception of pain. Using the concept pain to symbolise an experience also makes it possible to tell other people what is going on and to solicit their help in managing the pain. In pain discourse, we can say "Sam can tell that Jason is with pain", or "She could tell you that Jason is with pain if she wanted to". These uses are linked to social milieu where rules are learnt for the application of concepts, such as the concept stoicism. In many rural communities, adults tell other adults about pain when it interrupts work or social activities. Otherwise, it is normative to "carry on". The rural stoic who tells another about pain only if he wants to can complicate clinical pain management, which can undermine the patient's special authority. In contrast, convergence in pain definitions and judgements between the patient and health professional can protect the authority of the patient and improve the clinical interaction. Pain is not simply a quale that is privately perceived; it must be capable of being expressed. Thus, pain has a social role, which is learnt. The study of linguistic rules in pain discourse could help explain the learning and application of the concept pain.

Reconsidering the International Association for the Study of Pain definition of pain.

INTRODUCTION: The definition of pain promulgated by the International Association for the Study of Pain (IASP) is widely accepted as a pragmatic characterisation of that human experience. Although the Notes that accompany it characterise pain as "always subjective," the IASP definition itself fails to sufficiently integrate phenomenological aspects of pain. METHODS: This essay reviews the historical development of the IASP definition, and the commentaries and suggested modifications to it over almost 40 years. Common factors of pain experience identified in phenomenological studies are described, together with theoretical insights from philosophy and biology. RESULTS: A fuller understanding of the pain experience and of the clinical care of those experiencing pain is achievable through greater attention to the phenomenology of pain, the social "intersubjective space" in which pain occurs, and the limitations of language. CONCLUSION: Based on these results, a revised definition of pain is offered: Pain is a mutually recognizable somatic experience that reflects a person's apprehension of threat to their bodily or existential integrity.

Effectiveness of initiating extrafine-particle versus fine-particle inhaled corticosteroids as asthma therapy in the Netherlands.

BACKGROUND: Most randomised clinical trials typically exclude a significant proportion of asthma patients, including those at higher risk of adverse events, with comorbidities, obesity, poor inhaler technique and adherence, or smokers. However, these patients might differentially benefit from extrafine-particle inhaled corticosteroids (ICS). This matched cohort, database study, compared the effectiveness of extrafine-particle with fine-particle ICS in a real-life population initiating ICS therapy in the Netherlands. METHODS: Data were from the Pharmo Database Network, comprising pharmacy and hospital discharge records, representative of 20 % of the Dutch population. The study population included patients aged 12 - 60, with a General Practice-recorded diagnosis for asthma (International Classification of Primary Care code R96), when available, ≥2 prescriptions for asthma therapy at any time in their recorded history, and receiving first prescription of ICS therapy as either extrafine-particle (ciclesonide or hydrofluoroalkane beclomethasone dipropionate [BDP]) or fine-particle ICS (fluticasone propionate or non-extrafine-particle-BDP). Patients were matched (1:1) on relevant demographic and clinical characteristics over 1-year baseline. Primary outcomes were severe exacerbation rates, risk domain asthma control and overall asthma control during the year following first ICS prescription. Secondary outcomes, treatment stability and being prescribed higher versus lower category of short-acting ß2 agonists (SABA) dose, were compared over a 1-year outcome period using conditional logistic regression models. RESULTS: Following matching, 1399 patients were selected in each treatment cohort (median age: 43 years; males: 34 %). Median (interquartile range) initial ICS doses (fluticasone-equivalents in µg) were 160 (160 - 320) for extrafine-particle versus 500 (250 - 500) for fine-particle ICS (p < 0.001). Following adjustment for residual confounders, matched patients prescribed extrafine-particle ICS had significantly lower rates of exacerbations (adjusted rate ratio [95 % CI], 0.59 [0.47-0.73]), and significantly higher odds of achieving asthma control and treatment stability in the year following initiation than those prescribed fine-particle ICS, and this occurred at lower prescribed doses. Patients prescribed extrafine-particle ICS had lower odds of being prescribed higher doses of SABA (0.50 [0.44-0.57]). CONCLUSION: In this historical, matched study, extrafine-particle ICS was associated with better odds of asthma control than fine-particle ICS in patients prescribed their first ICS therapy in the Netherlands. Of importance, this was reached at significantly lower prescribed dose.