Quality of Life in Adult Patients With SAPHO Syndrome and Chronic Nonbacterial Osteomyelitis, and Comparison to Chronic Rheumatic and Inflammatory Diseases.
Article in The Journal of rheumatology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.
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1citing papers in PubMed
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1 · What the graph read from it
What it found
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2 · The registry
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5 · Who and what money
Authors and funding
16 authors.
Aleksander LenertA. Lenert, MD, MS, H. Abodeely, P.S. Lenert, MD, PhD, Division of Immunology, Department of Internal Medicine, Carver College of Medicine, University of Iowa, Iowa City, Iowa, USA; aleksander-lenert@uiowa.edu.ORCID 0000-0003-2129-3263
Jenna ThomasonJ. Thomason, MD, MPH, Division of Rheumatology, University of Washington, Rheumatology Clinic at Harborview, Seattle, Washington, USA.ORCID 0000-0002-3942-8982
Melanie H SmithM.H. Smith, MD, PhD, Weill Cornell Medicine, Hospital for Special Surgery, New York, New York, USA.ORCID 0000-0003-2464-8429
Helena AbodeelyA. Lenert, MD, MS, H. Abodeely, P.S. Lenert, MD, PhD, Division of Immunology, Department of Internal Medicine, Carver College of Medicine, University of Iowa, Iowa City, Iowa, USA.
Sandy D HongS.D. Hong, MD, C.E. Kremer, ARNP, Division of Pediatric Rheumatology, University of Iowa Stead Family Children's Hospital, Iowa City, Iowa, USA.ORCID 0000-0001-9979-0142
Courtney E KremerS.D. Hong, MD, C.E. Kremer, ARNP, Division of Pediatric Rheumatology, University of Iowa Stead Family Children's Hospital, Iowa City, Iowa, USA.
Petar S LenertA. Lenert, MD, MS, H. Abodeely, P.S. Lenert, MD, PhD, Division of Immunology, Department of Internal Medicine, Carver College of Medicine, University of Iowa, Iowa City, Iowa, USA.ORCID 0000-0001-9327-0293
T Shawn SatoT.S. Sato, MD, Department of Radiology, University of Iowa Hospitals and Clinics, Iowa City, Iowa, USA.ORCID 0000-0002-3082-3070
Sandra HansmannS. Hansmann, MD, Department of Pediatrics, Division of Pediatric Rheumatology and autoinflammation reference center Tübingen (arcT), University Hospital Tübingen, Tübingen, Germany.
Melissa OliverM. Oliver, MD, Division of Pediatric Rheumatology, Indiana University School of Medicine, Indianapolis, Indiana, USA.ORCID 0000-0002-7689-2573
Yongdong Dan ZhaoY. Zhao, MD, PhD, Division of Pediatric Rheumatology, Department of Pediatrics, University of Washington School of Medicine, Seattle Children's Hospital, Seattle, Washington, USA.ORCID 0000-0003-3618-1379
Jonathan TemplinJ. Templin, PhD, Department of Psychological and Quantitative Foundations, College of Education, University of Iowa, Iowa City, Iowa, USA.ORCID 0000-0001-7616-0973
Mary Vaughan-SarrazinM. Vaughan-Sarrazin, PhD, Department of Internal Medicine, University of Iowa Carver College of Medicine, Iowa City, Iowa, USA.ORCID 0000-0001-8717-1061
Robyn DomsicR. Domsic, MD, MPH, Division of Rheumatology and Clinical Immunology, University of Pittsburgh, Pittsburgh, Pennsylvania, USA.ORCID 0000-0002-2765-0922
Daniel H SolomonD.H. Solomon, MD, MPH, Division of Rheumatology, Inflammation, and Immunity, Brigham and Women's Hospital and Harvard Medical School, Boston, Massachusetts, USA.
Polly J FergusonP.J. Ferguson, MD, Division of Pediatric Rheumatology, Carver College of Medicine, University of Iowa Stead Family Children's Hospital, Iowa City, Iowa, USA.ORCID 0000-0002-9901-0334
Funding
University of Iowa Institute for Clinical and Translational ScienceUM1TR004403 · NCATS · UNIVERSITY OF IOWA · PI Marlan R Hansen, Patricia Winokur · 2023 to 2026
$16.1M
VERITY: Value and Evidence in Rheumatology using bioInformaTics, and advanced analYticsP30AR072577 · NIAMS · BRIGHAM AND WOMEN'S HOSPITAL · PI Elena Losina · 2017 to 2026
$9.8M
Systems Biology CoreP50AR080612 · NIAMS · UNIVERSITY OF PITTSBURGH AT PITTSBURGH · PI Robyn Therese Domsic · 2022 to 2026
$9.5M
Investigating Disease Activity, Bone Damage and Interleukin-1 Genes in Adult SAPHO Syndrome and Chronic Nonbacterial OsteomyelitisK23AR082966 · NIAMS · UNIVERSITY OF IOWA · PI Aleksander Lenert · 2023 to 2026
objectiveThe health effects of SAPHO (synovitis, acne, pustulosis, hyperostosis, and osteitis) syndrome and chronic nonbacterial osteomyelitis (CNO) have not been well studied. We assessed health-related quality of life (HRQOL) in adults with SAPHO-CNO and performed a review of EQ-5D questionnaire outcomes among similar chronic rheumatic and inflammatory diseases.
methodsWe enrolled patients in the first US-based SAPHO-CNO prospective registry and assessed their HRQOL using the EQ-5D index and EQ-5D visual analog scale (VAS). A focused scoping review was performed of EQ-5D-related outcomes among disease cohorts with phenotypic similarities to SAPHO-CNO.
resultsIn the 138 participants with SAPHO-CNO, mean age was 37.7 (SD 15.0) years with a mean disease duration of 6.4 (SD 6.2) years. All subjects had musculoskeletal involvement (with 43% having spine involvement) and 46% had skin involvement. Mean 5-level EQ-5D index value was 0.75 (SD 0.16) and mean EQ-VAS was 63.0 (SD 21.0). Most patients were affected by pain/discomfort (86%), difficulty in carrying out usual activities (65%), and anxiety/depression (54%); over one-third reported problems in all 5 EQ-5D domains. These adults with SAPHO-CNO had similarly reduced EQ-5D and VAS values, and similar high proportion of perceived problems, as in other inflammatory disease cohorts.
conclusionThe HRQOL among adults with SAPHO-CNO is low, with more than half of patients experiencing greater impact on perceived pain, difficulty performing usual activities, and feelings of anxiety or depression. Future therapies should address the multidimensional nature of SAPHO-CNO, targeting HRQOL as a major outcome.
Indexed as
Acquired Hyperostosis SyndromeOsteomyelitisQuality of LifeRheumatic DiseasesAdultChronic DiseaseFemaleHumansMaleMiddle AgedProspective StudiesRegistriesSurveys and Questionnaireschronic recurrent multifocal osteomyelitiscohort studyhealth-related quality of lifeSAPHO syndromescoping review
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.
Quality of Life in Adult Patients With SAPHO Syndrome and Chronic Nonbacterial Osteomyelitis, and Comparison to Chronic Rheumatic and Inflammatory Diseases. · full record | OpenQuestion