The value of engaging people with lived experience into chronic pain research is becoming increasingly recognized, yet the perspectives of individuals with chronic pain who have not previously participated in research are underexplored. This study aims to fill this gap by assessing the attitudes, preferences, and barriers related to patient engagement among adults living with chronic pain in the United States (US). An online survey was developed in collaboration with an advisory board and community engagement studio and distributed through Qualtrics panels from December 2023-January 2024. Quotas for age, gender, and race were employed to reach a representative sample for each of these variables based on the 2020 US census.1,2 Of the 505 participants, 267 reported chronic low back pain (53%) and 144 had headaches or migraines (22%). A majority (65%-79%) were familiar with medical research, and 64% (n = 327) expressed interest in engaging as patient partners. Key facilitators for engagement included the desire to help others and learn about their condition, while compensation was also an important motivator. Barriers were time constraints, lack of payment, and worry about privacy. Younger participants (Chi-square p = 0.04) and those with higher education (Chi-square p = 0.01) were more likely to express interest in research partnerships. Strategies to enhance patient engagement should focus on reducing barriers and providing clear, meaningful opportunities for engagement, potentially increasing both recruitment and retention in chronic pain research. Future research should explore these dynamics further and consider international perspectives to develop comprehensive patient engagement strategies. PERSPECTIVE: This study surveys over 500 individuals with chronic pain to understand their attitudes towards engagement in clinical pain research. It identifies key facilitators and barriers, such as time constraints and low compensation, and aims to refine strategies to enhance patient partner engagement and representation in clinical pain research.
Background autofluorescence is enhanced in human tissue relative to small animals and presents a barrier to fully realizing the potential of novel multiplex methods in human studies. In particular, lipofuscin (LF) is an interfering pigment in multiplex fluorescence assays. Lipofuscin (LF) is a highly cross-linked aggregate of oxidized lipids, proteins, sugars, and metal ions that accumulates in lysosomes with age, and is strongly fluorescent across wavelengths that interfere with signals from common fluorophores. This is particularly apparent in dorsal root ganglion (DRG), where the LF deposits occupy up to 80% of the visible neuronal cytoplasm, affecting ~45% of neurons in a typical section. This report describes a straightforward, scalable, pre-staining, white-light photobleaching method that near-totally reduces LF autofluorescence, and improves signal detection across the color spectrum without negatively impacting the multiplex fluorescence detection assay. It is effective for peripheral and central nervous system structures as well as pathological tissue such as Alzheimer's disease brain, which contains high levels of autofluorescent interference. This demonstrates the broad applicability to improving signal detection in human disease states to enable translational investigations in humans. This low-cost procedure can be rapidly implemented into existing research programs to increase the accessibility of high-plex fluorescent microscopy methodologies to enable direct-in-human research. PERSPECTIVE: White light photobleaching of lipofuscin before multiplex fluorescent in situ hybridization allows for rapid, near-total quenching of autofluorescence in healthy and diseased human nervous system tissue. Given the importance of direct-in-human investigations for validating translational studies and ensuring medical relevance, this simple yet powerful advance enables future anatomical investigations.
There is increasing recognition that nociplastic pain and central sensitization may play a role in endometriosis-associated pain. The Pain Sensitivity Questionnaire Minor (PSQ-M) evaluates subjective widespread pain sensitivity, and is linked to pain outcomes in chronic pain populations. However, evidence connecting the PSQ-M to central sensitization in endometriosis is limited. Using the Central Sensitization Inventory (CSI) as a comparison, this study compared the PSQ-M as a clinical proxy for central sensitization in endometriosis individuals. Data collected from 983 endometriosis participants (mean age of 34 years), between January 2020 and December 2022, were analyzed from a prospective registry. A significant but weak positive correlation was observed between PSQ-M and CSI scores (r=0.099, p<0.05). A significant but weak correlation was found between the number of central sensitivity syndromes and pelvic pain-related comorbidities with the PSQ-M (r=0.093, p<0.05), compared to a stronger correlation with the CSI (r=0.687, p<0.05). PSQ-M scores were not significantly associated with baseline (r=0.013, p=0.68) or post-operative (r=-0.046, p=0.57) quality-of-life. There was no change in the PSQ-M and a small change in CSI after endometriosis surgery, suggesting that surgical treatment of endometriosis does not directly address central sensitization. In conclusion, the PSQ-M may not be the optimal clinical proxy for central sensitization in endometriosis. PERSPECTIVE: This study evaluates the Pain Sensitivity Questionnaire - Minor (PSQ-M) as a proxy for central sensitization in endometriosis. The PSQ-M showed weak correlations with central sensitivity syndromes and pain scores and was not associated with post-surgical quality-of-life, suggesting it may not be the optimal tool for assessing central sensitization in endometriosis.