What is the adult experience of Perthes’ disease?

Abstract

Aims Perthes’ disease is an uncommon hip disorder with limited data on the long-term outcomes in adulthood. We partnered with community-based foundations and utilized web-based survey methodology to develop the Adult Perthes Survey, which includes demographics, childhood and adult Perthes’ disease history, the University of California Los Angeles (UCLA) Activity Scale item, Short Form-36, the Hip disability and Osteoarthritis Outcome Score, and a body pain diagram. Here we investigate the following questions: 1) what is the feasibility of obtaining > 1,000 survey responses from adults who had Perthes’ disease using a web-based platform?; and 2) what are the baseline characteristics and demographic composition of our sample? Methods The survey link was available publicly for 15 months and advertised among support groups. Of 1,505 participants who attempted the Adult Perthes survey, 1,182 completed it with a median timeframe of 11 minutes (IQR 8.633 to 14.72). Participants who dropped out were similar to those who completed the survey on several fixed variables. Participants represented 45 countries including the USA (n = 570; 48%), UK (n = 295; 25%), Australia (n = 133; 11%), and Canada (n = 46; 4%). Of the 1,182 respondents, 58% were female and the mean age was 39 years (SD 12.6). Results Ages at onset of Perthes’ disease were < six years (n = 512; 43%), six to seven years (n = 321; 27%), eight to 11 years (n = 261; 22%), and > 11 years (n = 76; 6%), similar to the known age distribution of Perthes’ disease. During childhood, 40% (n = 476) of respondents had at least one surgery. Bracing, weightbearing restriction, and absence of any treatment varied significantly between USA and non-USA respondents (p < 0.001, p = 0.002, and p < 0.001, respectively). As adults, 22% (n = 261) had at least one total hip arthroplasty, and 30% (n = 347) had any type of surgery; both more commonly reported among women (p = 0.002). Conclusion While there are limitations due to self-sampling, our study shows the feasibility of obtaining a large set of patient-reported data from adults who had childhood Perthes’ from multiple countries. Cite this article: Bone Jt Open 2022;3(5):404–414.

What’s New in Pediatric Orthopaedics

“…The British Orthopaedic Surveillance Study reported 2-year outcomes from a prospective cohort of 371 children with Legg-Calvé-Perthes disease and found that 36% were treated with containment surgery but without evidence of improved outcomes 30 . More than 1,500 adult patients were surveyed about their childhood Legg-Calvé-Perthes disease, and 30% had had a surgery during adulthood, including 22% who had undergone at least 1 total hip arthroplasty 31 . However, a retrospective cohort study of hips with complex residual Legg-Calvé-Perthes disease deformities found that those that underwent combined periacetabular osteotomy and surgical dislocation had an 85% rate of preservation at the intermediate term 32 .…”

News in paediatric orthopaedic surgery: an overview of the latest advances in paediatric orthopaedics and traumatology (2020–2023)

“…Using a web-based platform, Mcguire et al collected 1182 responses to a questionnaire from patients of 45 different countries who developed LPCD in childhood. They found that 40% of respondents had undergone at least one surgical procedure during childhood while 22% and 30% underwent at least one total hip replacement and any type of surgery, respectively [ 24 ].…”