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OP3.5 Does Patient Resiliency Influence Patient-reported outcomes at Presentation in Symptomatic Femoroacetabular Impingement
Nepple, Jeffrey J. , O’Connor, Kyle P. , Spiker, Andrea M. , Group, ANCHOR Study, Clohisy, John C., Schmitz, Matthew R. , O’Connor, Kyle, Westermann, Robert W. , Krych, Aaron J. , Carsen, Sasha , Group, ANCHOR Study, Clohisy, John C.

Journal of Hip Preservation Surgery | April 2, 2025 | Volume: 12 | Issue: Supplement_1 | Pages: i31-i31

10.1093/jhps/hnaf011.097 Get It

Abstract Background: Resilience, quantified by the brief resilience scale (BRS), has been recognized for its role in pain and symptomatology in musculoskeletal conditions. The role of psychological factors in the clinical presentation and outcomes of FAI surgery continues to be poorly understood. Methods: This is a prospective multicenter study of FAI patients undergoing primary hip arthroscopy. PROMs were administered at baseline, 3-, and 6-months post-op and included the Patient Reported Outcomes Measurement Information System (PROMIS) domains of anxiety and depression, as well as Hip Disability and Osteoarthritis and Outcome Score (HOOS), modified Harris Hip Score (mHHS), and International Hip Outcome Tool (iHOT-12). Resilience was characterized by BRS score and divided into low (“L”, score<3), normal (“N”, score 3-4.3), and high resilience (“H”, score>4.3). Results: 675 patients were included with a mean age of 24.9±7.8 years and female predominance (56%). Mean BRS scores were 3.7±0.7 (1.5-5.0). 13.8% (n=93) had low resilience, 65.9% (n=445) had normal resilience, and 20.3% (n=137) had high resilience. Lower resilience had more severe symptoms in HOOS pain (p<0.001), HOOS sports (p=0.003), HOOS ADL (p<0.001), HOOS QoL (p<0.001), iHOT-12 (p=0.002), and mHHS (p<0.001). Anxiety (L: 50.5%/N: 14.4%/H: 2.2%) and depression (L: 38.7%/N: 8.8%/H: 2.9%) were higher in lower resilience groups (all p<0.001) and this trend stayed consistent in female and male sub-analyses with females having greater anxiety and depression symptoms. The follow-up cohort with 3- and 6-months follow-up was 487 patients and had similar baseline characteristics as the baseline cohort. Lower resilience had lower postoperative PROs (with similar change) (p<0.05). After treatment, rates of anxiety or depression decreased from 22.1% to 15.6% with the low resilience group having the highest change from 62.9% to 45.9%. Conclusion: Low resilience correlates with more severe symptoms and predicts anxiety/depression in FAI. 13.8% had low resilience while 20.3% had high resilience. Lower resilience had worse postoperative PROs. Particularly in patients with low resilience at presentation, rates of anxiety or depression symptoms decreased postoperatively. Further studies are needed to understand the role of resilience in longer-term outcomes of FAI and whether concurrent psychological treatment will help improve patient outcomes after hip arthroscopy for FAI.
Migraine and spontaneous coronary artery dissection: A retrospective case–control study
Lewis, Juleen C., Orlova, Yulia , Tietjen, Gretchen E. , Chiang, Chia‐Chun , Harriott, Andrea M. , Chiang, Chia-Chun , Lewis, Juleen C.

Headache: The Journal of Head and Face Pain | March 30, 2025 | Volume: 65 | Issue: 6 | Pages: 933-943

10.1111/head.14935 | PMID 40152438 Get It

Abstract Objective The objective was to determine if migraine is independently associated with a greater odds of spontaneous coronary artery dissection (SCAD) in a case–control study. Background There is growing evidence that migraine is associated with SCAD, a non‐atherosclerotic, non‐traumatic cause of myocardial infarction. However, few studies have examined the independent association between migraine and SCAD. Methods A total of 1295 SCAD cases and 1291 (1:1) age, sex, and race/ethnicity matched controls presenting to the Boston, Massachusetts area, using the International Classification of Diseases ninth revision and 10th revision codes from our Research Patient Data Registry, were identified between the years 1990 and 2022. Adjusted odds ratios (aORs) and 95% confidence intervals (CIs) were calculated. For mediation, total effects, natural direct, and indirect effects were estimated using causal inference. Receiver operating characteristic (ROC) curves and area under the curve (AUC) was used to determine predictive power. Statistical significance was defined as p < 0.05. Results Adjusting for age, sex, and race/ethnicity, the data demonstrated an almost two‐fold increased odds of SCAD in patients with migraine (aOR 1.96, 95% CI 1.48–2.6; p < 0.001). There was no effect of aura phenotype on this association. Fibromuscular dysplasia (FMD) was found only in patients with SCAD ( n = 133). After accounting for vascular risk factors, there was no longer an independent association between migraine and SCAD (aOR 0.90, 95% CI 0.63–1.29; p = 0.568). Using a model that adjusted for only demographic variables produced a ROC curve with the lowest predictive power (AUC 0.55) for SCAD, while the vascular risk factor‐adjusted model had a higher predictive power (AUC 0.83). Hypertension appeared to mediate some of the effect of migraine on SCAD (proportion of effect mediated 0.70). FMD was highly associated with an increased risk of SCAD. There remained no independent association between SCAD and migraine when FMD was included in the model. Conclusions The migraine–SCAD association can be partially attributed to the connection between migraine and vascular comorbidities including hypertension and FMD.
A Descriptive 5‐Year Analysis of the Demographics and Therapies for Patients With Immune Thrombotic Thrombocytopenic Purpura in the USA: A Multicenter Study of 390 Disease Episodes From 2017 to 2021
Jacobs, Jeremy W. , Adkins, Brian D. , Stanek, C , Stephens, Laura D. , Daou, Laetitia , Siniard, Rance C. , Wallace, Lisa R., Duque, Miriam Andrea, Wu, Yanyun , Aljuboori, Omar , Harrington, Thomas J., Byrnes, Diana M. , Eichbaum, Quentin , Klapper, Ellen, Klein, Monica S., Alkhateb, Rahaf, Powers, Amy, Webb, Christopher B. , Yates, Sean G. , Bloch, Evan M. , Adkins, Brian D. , Booth, Garrett , Stanek, Caroline G , Grossman, Brenda J , Stephens, Laura , Crowe, Elizabeth P , Marques, Marisa B , Yamada, Chisa , Juskewitch, Justin E , Perez-Alvarez, Ingrid , Parsons, Meredith G , Schlueter, Annette J , Tormey, Christopher A , Yates, Sean G , Bloch, Evan M , Raval, Jay S , Jacobs, Jeremy W , Adkins, Brian David , Adkins, Brian D. , Booth, Garrett S. , Allen, Elizabeth S. , Grossman, Brenda J. , Marques, Marisa B. , Yamada, Chisa , Villalba, Cristina A. Figueroa , Juskewitch, Justin E. , Aldarweesh, Fatima , Parsons, Meredith G , Schlueter, Annette J. , Tormey, Christopher A. , Wheeler, Allison P. , Raval, Jay S.

Journal of Clinical Apheresis | March 30, 2025 | Volume: 40 | Issue: 2 | Pages: No page available

10.1002/jca.70017 | PMID 40145682 Get It

ABSTRACTImmune thrombotic thrombocytopenic purpura (iTTP) is characterized by microangiopathic hemolytic anemia, thrombocytopenia, and microvascular occlusion secondary to acquired ADAMTS13 deficiency. Contemporary data regarding iTTP treatment practices in the US, including the use of caplacizumab, are lacking. We aimed to characterize the demographics and therapies, including medications and apheresis practices, in patients with iTTP in the US. We retrospectively analyzed iTTP cases at 15 sites in the US that provide comprehensive care for patients with iTTP. The time‐period assessed was from January 1, 2017 to December 31, 2021. Our primary objective was to analyze data by iTTP episode, inclusive of initial episodes and relapses. A total of 390 iTTP episodes were reported for 280 unique individuals (187 females, 93 males). Thirty‐day mortality was 3.7% (14/374), and 6‐month mortality was 7.4% (27/367). TPE details were reported for 343 episodes, among which 261 underwent at least one procedure (median 6, IQR 3–11). Among the 261 episodes with at least one therapeutic plasma exchange (TPE) performed, 82.0% (214/261) used only plasma. Caplacizumab was used either alone or in combination with other agents in 43 (11.0%) episodes. Management strategies for iTTP remain varied across centers in the US, with a variety of combinations for TPE replacement fluids and therapeutic agents, as well as limited use of caplacizumab. Further research and standardization of treatment regimens may further reduce mortality in this condition.
Practical Anemia Bundle and Hemoglobin Recovery in Critical Illness
Hanson, Andrew C. , Fortune, Emma , Flaby, Gerald W., Schulte, Phillip J. , Hazelton, Valerie M., Beam, William B. , Anderson, Brenda, Karon, Brad S. , Kor, Daryl J. , Johnson, Matthew L. , Beam, W Brian, Charnin, Jonathan E. , Anderson, Brenda K, Karon, Brad, Warner, Matthew A. , Go, Ronald S. , Cheville, Andrea , Gajic, Ognjen

JAMA Network Open | March 28, 2025 | Volume: 8 | Issue: 3 | Pages: e252353

10.1001/jamanetworkopen.2025.2353 | PMID 40152861 Get It

Importance Anemia is a common complication of surgery and acute illness that is associated with adverse clinical outcomes. The role of anemia prevention and treatment strategies in this setting remains unclear. Objective To evaluate the effect of a multifaceted anemia management bundle vs standard care on posthospitalization hemoglobin recovery and multidimensional functional outcomes in survivors of acute illness. Design, Setting, and Participants This parallel group randomized clinical trial, known as the Practical Anemia Bundle for Sustained Blood Recovery, was conducted at postsurgical and medical intensive care units at a large US medical center. Critically ill patients (aged ≥18 years) with moderate to severe anemia (hemoglobin concentration &amp;lt;10 g/dL) were enrolled between March 2022 and November 2023. Participants were randomly assigned 1:1 to the intervention or standard care group. Intention-to-treat analyses were performed between July 2024 and January 2025. Intervention The intervention bundle was delivered throughout the duration of hospitalization and included optimized phlebotomy practices, clinical decision support, and pharmacological anemia treatment with intravenous iron. Main Outcomes and Measures The primary outcome was the mean difference in hemoglobin concentration at 1 month after hospital discharge. Results A total of 100 patients (median [IQR] age, 68 [61-72] years; 57 men [57.0%]; 65 [65.0%] with postsurgical admission to the intensive care unit) were enrolled during acute illness. Forty-nine patients (49.0%) were assigned to receive the intervention, and 51 (51.0%) were assigned to receive standard care. Hemoglobin concentration at 1 month after discharge was greater in patients receiving the intervention vs standard care (median [IQR], 12.2 [11.8-13.0] g/dL vs 11.5 [10.2-12.6] g/dL; adjusted mean difference, 0.69 [95% CI, 0.13-1.20] g/dL; P = .02). Conclusions and Relevance This randomized clinical trial found that a multifaceted anemia prevention and treatment bundle was feasible, was well tolerated, and improved posthospitalization hemoglobin concentrations up to 3 months in critically ill adults. These findings can inform the design of future trials. Trial Registration ClinicalTrials.gov Identifier: NCT05167734
2024 American College of Rheumatology ( ACR ) Guideline for the Screening, Treatment, and Management of Lupus Nephritis
Sammaritano, Lisa R. , Askanase, Anca , Bermas, Bonnie L. , Dall’Era, Maria , Duarte‐García, Alí , Hiraki, Linda T. , Rovin, Brad H. , Alvarado, Anthony, Aranow, Cynthia , Broder, Anna , Chowdhary, Vaidehi , Contreras, Gabriel, Felix, Christele, Gibson, Keisha L. , Hersh, Aimee O. , Kalunian, Kenneth , Rollins, Brandi , Smith, Benjamin J. , Thomas, Asha , Timlin, Homa , Ward, Michael D. , Bartels, Christie M. , Cunha, Joanne S., DeQuattro, Kimberly , Figueroa‐Parra, Gabriel , Greco, Jessica , Iyer, Priyanka , Johannemann, Andrew, Jorge, April , Kasturi, S.Psi. Taufik , Khawandi, Jana , Legge, Alexandra , Liang, Kelly V. , Lockwood, Megan M. , Sánchez-Rodríguez, Alain , Turgunbaev, Marat, Williams, Jessica N. , Turner, Amy S. , Aranow, Cynthia , Barnado, April , Brunner, Hermine I , Ferucci, Elizabeth D , Hersh, Aimee O , Smith, Benjamin J , Wallace, Daniel J , Bartels, Christie M , DeQuattro, Kimberly , Figueroa-Parra, Gabriel , Garg, Shivani , Cuéllar-Gutiérrez, María C, Jorge, April , Kasturi, Shanthini , Kawtharany, Hassan , Kirou, Kyriakos A , Lockwood, Megan M , Sanchez-Rodriguez, Alain , Williams, Jessica N , Turner, Amy S , Duarte-García, Alí , Rovin, Brad H , Askanase, Anca , Bermas, Bonnie , Son, Mary Beth F. , Barnado, April , Contreras, Gabriel, Ferucci, Elizabeth D. , Izmirly, Peter , Kamen, Diane L. , Rollins, Brandi, Thomas, Asha, Azzam, Muayad , Fava, Andrea , Garg, Shivani , Cuéllar‐Gutiérrez, María C. , Kawtharany, Hassan , Kirou, Kyriakos A. , Mustafa, Reem A

Arthritis Care & Research | March 26, 2025 | Volume: 77 | Issue: 9 | Pages: 1045-1065

10.1002/acr.25528 | PMID 40127995 Get It

Objective The objective is to provide evidence‐based and expert guidance for the screening, treatment, and management of lupus nephritis. Methods The Core Team developed clinical questions for screening, treatment, and management of lupus nephritis using the PICO format (population, intervention, comparator, and outcome). Systematic literature reviews were completed for each PICO question, and the Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology was used to assess the quality of evidence and to formulate recommendations. The Voting Panel achieved a consensus ≥70% on the direction (for or against) and strength (strong or conditional) of each recommendation. Results We present 28 graded recommendations (7 strong, 21 conditional) and 13 ungraded, consensus‐based good practice statements for the screening and management of lupus nephritis. Our recommendations focus on the unifying principle that lupus nephritis therapy is continuous and ongoing, rather than consisting of discrete induction/initial and maintenance/subsequent therapies. Therapy should include pulse glucocorticoids followed by oral glucocorticoid taper and two additional immunosuppressive agents for 3–5 years for those achieving complete renal response. Conclusion This guideline provides direction for clinicians regarding screening and treatment decisions for management of lupus nephritis. These recommendations should not be used to limit or deny access to therapies, as treatment decisions may vary due to the unique clinical situation and personal preferences of each individual patient.
Recovery Potential in Patients After Cardiac Arrest Who Die After Limitations or Withdrawal of Life Support
Elmer, Jonathan, Ratay, Cecelia , Steinberg, Alexis , DiFiore-Sprouse, Sara, Case, Nicholas , De‐Arteaga, Maria , Cariou, Alain, Rossetti, Andrea O. , Doshi, Ankur , Molyneaux, Bradley J. , Maciel, Carolina B. , Leithner, Christoph , Sandroni, Claudio , Seder, David B., Taccone, Fabio Silvio, Soar, Jasmeet , Lascarrou, Jean-Baptiste, Nolan, Jerry P. , Hirsch, Karen G. , Berg, Katherine M. , Moseby‐Knappe, Marion , Skrifvars, Markus B., Kurz, Michael C. , Chae, Min Jung Kathy, Kurtz, Pedro, Geocadin, Romergryko G. , Agarwal, Sachin , May, Teresa , Olasveengen, Theresa M. , Group, Optimizing Recovery Prediction After Cardiac Arrest (ORCA) Study, Cariou, Alain , Greer, David M., Seder, David B., Naito, Hiromichi, Nolan, Jerry P., Elmer, Jonathan, Moseby-Knappe, Marion, Skrifvars, Markus B., Donnino, Michael W. , Sekhon, Mypinder, Coppler, Patrick J., Kurtz, Pedro, Seder, David B. , Lascarrou, Jean-Baptiste , Elmer, Jonathan, Coppler, Patrick J. , Fischhoff, Baruch , Rabinstein, Alejandro A. , Dezfulian, Cameron , Hsu, Cindy H. , Greer, David M. , Seder, David B., Guyette, Francis Xavier , Naito, Hiromichi , Skrifvars, Markus B., Chae, Minjung Kathy , Sekhon, Mypinder S. , Johnson, Nicholas James , Kurtz, Pedro, Callaway, Clifton W. , Group, Optimizing Recovery Prediction After Cardiac Arrest (ORCA) Study, Greer, David M., Seder, David B., Naito, Hiromichi, Nolan, Jerry P., Elmer, Jonathan, Moseby-Knappe, Marion, Skrifvars, Markus B., Coppler, Patrick J., Kurtz, Pedro

JAMA Network Open | March 26, 2025 | Volume: 8 | Issue: 3 | Pages: e251714

10.1001/jamanetworkopen.2025.1714 | PMID 40131275 Get It

ImportanceUnderstanding the relationship between patients’ clinical characteristics and outcomes is fundamental to medicine. When critically ill patients die after withdrawal of life-sustaining therapy (WLST), the inability to observe the potential for recovery with continued aggressive care could bias future clinical decisions and research.ObjectiveTo quantify the frequency with which experts consider patients who died after WLST following resuscitated cardiac arrest to have had recovery potential if life-sustaining therapy had been continued.Design, Setting, and ParticipantsThis prospective cohort study included comatose adult patients (aged ≥18 years) treated following resuscitation from cardiac arrest at a single academic medical center between January 1, 2010, and July 31, 2022. Patients with advanced directives limiting critical care or who experienced cardiac arrest of traumatic or neurologic etiology were excluded. An international cohort of experts in post-arrest care based on clinical experience and academic productivity was identified. Experts reviewed the cases between August 24, 2022, and February 11, 2024.ExposurePatients who died after WLST.Main Outcome and MeasuresThree or more experts independently estimated recovery potential for each patient had life-sustaining treatment been continued, using a 7-point numerical ordinal scale. In the primary analysis, which involved the patient cases with death after WLST, a 1% or greater estimated recovery potential was considered to be clinically meaningful. In secondary analyses, thresholds of 5% and 10% estimated recovery probability were explored.ResultsA total of 2391 patients (median [IQR] age, 59 [48-69] years; 1455 men [60.9%]) were included, of whom 714 (29.9%) survived to discharge. Cases of uncertain outcome (1431 patients [59.8%]) in which WLST preceded death were reviewed by 38 experts who rendered 4381 estimates of recovery potential. In 518 cases (36.2%; 95% CI, 33.7%-38.7%), all experts believed that recovery potential was less than 1% if life-sustaining therapies had been continued. In the remaining 913 cases (63.8%; 95% CI, 61.3%-66.3%), at least 1 expert believed that recovery potential was at least 1%. In 227 cases (15.9%; 95% CI, 14.0%-17.9%), all experts agreed that recovery potential was at least 1%, and in 686 cases (47.9%; 95% CI, 45.3%-50.6%), expert estimates differed at this threshold.Conclusions and RelevanceIn this cohort study of comatose patients resuscitated from cardiac arrest, most who died after WLST were considered by experts to have had recovery potential. These findings suggest that novel solutions to avoiding deaths based on biased prognostication or incomplete information are needed.
Measuring the Visibility of Thyroid Eye Disease: What Severity Draws Attention?
Fearington, Forrest W. , Peraza, Lazaro R. , Leatherwood, Aja, Tooley, Andrea A. , Stokken, Janalee K., Grover, Alexis K, Tooley, Andrea A , Grover, Alexis K., Dey, Jacob K.

International Forum of Allergy & Rhinology | March 21, 2025 | Volume: 15 | Issue: 7 | Pages: 748-750

10.1002/alr.23574 | PMID 40116156 Get It

A Validity Analysis of Text-to-Image Generative Artificial Intelligence Models for Craniofacial Anatomy Illustration
Haider, Syed Ali , Gomez-Cabello, Cesar A. , Borna, Sahar , Pressman, Sophia M. , Genovese, Ariana , Trabilsy, Maissa , Galvao, Andrea , Murray, Peter M. , Parte, Yogesh, Yu, Yunguo , Tao, Cui , Forte, Antonio J. , Gomez-Cabello, Cesar A , Borna, Sahar , Galvao, Andrea , Tao, Cui , Forte, Antonio Jorge , Pressman, Sophia , Haider, Syed A , Genovese, Ariana , Prabha, Srinivasagam , Aziz, Keith T

Journal of Clinical Medicine | March 21, 2025 | Volume: 14 | Issue: 7 | Pages: 2136

10.3390/jcm14072136 | PMID 40217587 Get It

Background: Anatomically accurate illustrations are imperative in medical education, serving as crucial tools to facilitate comprehension of complex anatomical structures. While traditional illustration methods involving human artists remain the gold standard, the rapid advancement of Generative Artificial Intelligence (GAI) models presents a new opportunity to automate and accelerate this process. This study evaluated the potential of GAI models to produce craniofacial anatomy illustrations for educational purposes. Methods: Four GAI models, including Midjourney v6.0, DALL-E 3, Gemini Ultra 1.0, and Stable Diffusion 2.0 were used to generate 736 images across multiple views of surface anatomy, bones, muscles, blood vessels, and nerves of the cranium in both oil painting and realistic photograph styles. Four reviewers evaluated the images for anatomical detail, aesthetic quality, usability, and cost-effectiveness. Inter-rater reliability analysis assessed evaluation consistency. Results: Midjourney v6.0 scored highest for aesthetic quality and cost-effectiveness, and DALL-E 3 performed best for anatomical detail and usability. The inter-rater reliability analysis demonstrated a high level of agreement among reviewers (ICC = 0.858, 95% CI). However, all models showed significant flaws in depicting crucial anatomical details such as foramina, suture lines, muscular origins/insertions, and neurovascular structures. These limitations were further characterized by abstract depictions, mixing of layers, shadowing, abnormal muscle arrangements, and labeling errors. Conclusions: These findings highlight GAI’s potential for rapidly creating craniofacial anatomy illustrations but also its current limitations due to inadequate training data and incomplete understanding of complex anatomy. Refining these models through precise training data and expert feedback is vital. Ethical considerations, such as potential biases, copyright challenges, and the risks of propagating inaccurate information, must also be carefully navigated. Further refinement of GAI models and ethical safeguards are essential for safe use.
Utilizing Patient Input in Rectal Cancer Trial Design
Alvarez, Janet , Zambare, Wini , George, Manju, Garcia, Reese , Gallagher, Phuong , Kitchens, Caleah , Bercz, Aron , Kim, Min Jung , Romesser, Paul B. , Cercek, Andrea , Sanoff, Hanna K. , Hong, Theodore S. , Baghdadi, Tareq Al, Shergill, Ardaman , Meyerhardt, Jeffrey A. , Horvat, Natally , Hall, William A., Smith, J. Joshua , Sanoff, Hanna , George, Thomas J , Hong, Theodore S , Yothers, Greg , Philip, Philip , Alese, Olatunji B , Shergill, Ardaman , O'Reilly, Eileen M , Meyerhardt, Jeffrey A , Horvat, Natally , Dasari, Arvind N , Shi, Qian , Schrag, Deborah , Smith, J Joshua , Romesser, Paul B , Baghdadi, Tareq Al , Kitchens, Caleah , García‐Aguilar, Julio , George, Thomas J. , Yothers, Greg , Philip, Philip A. , Alese, Olatunji B. , O’Reilly, Eileen M. , Dasari, Arvind , Shi, Qian

JNCI: Journal of the National Cancer Institute | March 20, 2025 | Volume: 117 | Issue: 7 | Pages: 1421-1428

10.1093/jnci/djaf074 | PMID 40108482 Get It

Abstract Background The treatment of locally advanced rectal cancer now includes “watch-and-wait” (WW) management for patients who exhibit a clinical complete response (cCR) to total neoadjuvant therapy (TNT). We assessed patients’ knowledge and preferences regarding WW with the goal of incorporating patient input into clinical trial design. Methods Rectal cancer patients in advocacy groups (COLONTOWN/Rectalburgh and Fight CRC) were surveyed regarding perceptions about treatment strategies, tolerable risks of treatment failure, and preferences on clinical trial design. Surveys were initially distributed in 2019, with the shift toward WW prompting re-survey of select questions in 2023. Results All respondents preferred enrollment in trials that incorporated patient input. Most respondents (76%) preferred treatment that incorporated chemotherapy escalation over radiation escalation. Furthermore, when presented with a hypothetical patient who developed a cCR after chemoradiation (without the option for WW), 58% of patients chose surgical treatment (with 100% risk of permanent ostomy and 80% chance of cure) over omission of surgery (with &lt;80% chance of cure). In contrast, when the hypothetical patient developed a cCR after TNT (with an option for WW), 82% of patients opted for selective WW over surgery. Conclusions This work successfully integrated patient advocacy groups as a resource for obtaining patient input. Surveys revealed patients had a strong preference for chemotherapy escalation, for selective WW when offered, and for incorporation of input into future clinical trial design. These findings describe how well-informed patients approach complex medical decision-making and serve as a starting point for future studies seeking to incorporate patient voices.
Prospective Characterisation of Age‐Related Changes in Self‐Injurious Behaviour in a Sample of Children With Global Developmental Delay Aged 2–12 Years
Byiers, Breanne J. , Gunderson, Jaclyn , Huebner, Andrea R., Symons, Frank J. , Huebner, Andrea

Journal of Intellectual Disability Research | March 19, 2025 | Volume: 69 | Issue: 6 | Pages: 465-479

10.1111/jir.13228 | PMID 40104903 Get It

ABSTRACTBackgroundSelf‐injurious behaviour (SIB) is a common problem among individuals with intellectual and developmental disabilities (IDDs) with important impacts on quality of life. Although some evidence suggests that SIB may increase with age, perhaps in a curvilinear pattern, this is primarily based on cross‐sectional studies. Therefore, the purpose of the current study was to conduct a prospective, longitudinal analysis of age‐related changes in a high‐risk cohort of children with developmental disabilities/delays.MethodsA total of 110 participants, between 2 and 12 years of age at enrolment (70% male), were followed for between 2 and 4 years. Caregivers completed the RBS‐EC SIB subscale annually, for a total of 317 assessments. The SIB total score, SIB interference ratings and endorsement of specific topographies were selected as dependent measures. Generalised linear models evaluating linear, quadratic and cubic age‐related changes and differences by intellectual disability (ID) status (no or mild ID vs. moderate to profound ID) were created for each outcome.ResultsFor SIB total scores, the model suggested complex developmental patterns that varied by degree of ID. For SIB interference ratings, the model suggested that individuals with moderate to profound ID showed relatively high and stable levels of SIB interference across ages, whereas individuals with no or mild ID showed an increasing trend with age. Patterns varied across the specific SIB topographies.DiscussionThe results suggest that age‐related changes in SIB are complex and may vary across topographies. Overall, the results are concerning in that they indicate a potentially increasing trend in frequency of SIB and its impact on daily activities as individuals approach adolescence, indicating the need for further longitudinal work across the lifespan.