Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2022 May;3(5):404-414.
doi: 10.1302/2633-1462.35.BJO-2021-0185.R1.

What is the adult experience of Perthes' disease? : initial findings from an international web-based survey

Molly F McGuire  1 , Bella Vakulenko-Lagun  2 , Michael B Millis  3 , Roi Almakias  2 , Earl P Cole  4 , Harry K W Kim  1   5 ; A study from the International Perthes Study Group
Affiliations

What is the adult experience of Perthes' disease? : initial findings from an international web-based survey

Molly F McGuire et al. Bone Jt Open. 2022 May.

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.

Keywords: Chi-squared tests; Hip Disability and Osteoarthritis Outcome Score; Legg-calve-perthes disease; Perthes disease; Short Form-36; Web-based survey; comorbidities; hip disorder; hip(s); obesity; physical therapy; total hip arthroplasty (THA).

PubMed Disclaimer

Conflict of interest statement

ICMJE COI statement: B. Vakulenko-Lagun and R. Almakias received funding from the Data Science Research Center of the University of Haifa for this study. Additionally, this work was supported in part by a grant from the Pediatric Orthopaedic Society of North America. H. K. W. Kim has patents issued for device and method for treating osteonecrosis. M. B. Millis reports royalties from Elsevier, unrelated to this study.

Figures

Fig 1
Fig 1
Facebook announcement from Perthes Kids Foundation Facebook group promoting the Adult Perthes Survey
Fig 2
Fig 2
International Perthes Study Group website announcement and hyperlink for public to access the Adult Perthes Survey.
Fig 3
Fig 3
Adult Perthes Survey enrolment, completion, and retention diagram. UCLA, University of California Los Angeles.
Fig 4
Fig 4
Spearman’s rank-based correlation matrix of demographic and hip-specific data reported in the Adult Perthes Survey.
Fig 5
Fig 5
Chronological survey response frequency from May 2019 to August 2020.
See this image and copyright information in PMC

References

    1. Molloy MK, MacMahon B. Incidence of Legg-Perthes disease (osteochondritis deformans). N Engl J Med. 1966;275(18):988–990. 10.1056/NEJM196611032751804 - DOI - PubMed
    1. Leo DG, Jones H, Murphy R, et al. The outcomes of Perthes’ disease. Bone Joint J. 2020;102-B(5):611–617. 10.1302/0301-620X.102B5.BJJ-2020-0072 - DOI - PubMed
    1. Loder RT, Skopelja EN. The epidemiology and demographics of legg-calvé-perthes’ disease. ISRN Orthop. 2011. 10.5402/2011/504393 - DOI - PMC - PubMed
    1. Barker DJ, Hall AJ. The epidemiology of Perthes’ disease. Clin Orthop Relat Res. 1986;209:89–94. 10.1097/00003086-198608000-00012 - DOI - PubMed
    1. Millis MB, Novais EN. Hip Disorders: Developmental Dysplasia, Slipped Capital Femoral Epiphysis, and Legg-Calve-Perthes Disease. In: Pizzutillo PD, Herman MJ. Adult Consequences of Pediatric Orthopaedic Conditions. 1st ed. USA: American Academy of Orthopaedic Surgeons, 2013: 13–32.