What is the adult experience of Perthes’ disease?: initial findings from an international web-based survey
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...
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| Format: | Article |
| Language: | English |
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The British Editorial Society of Bone & Joint Surgery
2022-05-01
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| Series: | Bone & Joint Open |
| Subjects: | |
| Online Access: | https://online.boneandjoint.org.uk/doi/epdf/10.1302/2633-1462.35.BJO-2021-0185.R1 |
| _version_ | 1828303382315532288 |
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| author | Molly F. McGuire Bella Vakulenko-Lagun Michael B. Millis Roi Almakias Earl P. Cole Harry K. W. Kim A study from the International Perthes Study Group |
| author_facet | Molly F. McGuire Bella Vakulenko-Lagun Michael B. Millis Roi Almakias Earl P. Cole Harry K. W. Kim A study from the International Perthes Study Group |
| author_sort | Molly F. McGuire |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-04-13T13:52:55Z |
| format | Article |
| id | doaj.art-15fbed580f8545f5afe62708b347bd38 |
| institution | Directory Open Access Journal |
| issn | 2633-1462 |
| language | English |
| last_indexed | 2024-04-13T13:52:55Z |
| publishDate | 2022-05-01 |
| publisher | The British Editorial Society of Bone & Joint Surgery |
| record_format | Article |
| series | Bone & Joint Open |
| spelling | doaj.art-15fbed580f8545f5afe62708b347bd382022-12-22T02:44:17ZengThe British Editorial Society of Bone & Joint SurgeryBone & Joint Open2633-14622022-05-013540441410.1302/2633-1462.35.BJO-2021-0185.R1What is the adult experience of Perthes’ disease?: initial findings from an international web-based surveyMolly F. McGuire0Bella Vakulenko-Lagun1Michael B. Millis2Roi Almakias3Earl P. Cole4Harry K. W. Kim5A study from the International Perthes Study GroupDepartment of Orthopedic Research, Scottish Rite for Children, Dallas, Texas, USADepartment of Statistics, University of Haifa, Haifa, IsraelDepartment of Orthopedics, Boston Children’s Hospital, Boston, Massachusetts, USADepartment of Statistics, University of Haifa, Haifa, IsraelPerthes Kids Foundation, Los Angeles, California, USADepartment of Orthopedic Research, Scottish Rite for Children, Dallas, Texas, USAAims: 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.https://online.boneandjoint.org.uk/doi/epdf/10.1302/2633-1462.35.BJO-2021-0185.R1perthes diseaseweb-based surveylegg-calve-perthes diseaseshort form-36total hip arthroplasty (tha)hip disorderhip disability and osteoarthritis outcome scorechi-squared testship(s)physical therapyobesitycomorbidities |
| spellingShingle | Molly F. McGuire Bella Vakulenko-Lagun Michael B. Millis Roi Almakias Earl P. Cole Harry K. W. Kim A study from the International Perthes Study Group What is the adult experience of Perthes’ disease?: initial findings from an international web-based survey Bone & Joint Open perthes disease web-based survey legg-calve-perthes disease short form-36 total hip arthroplasty (tha) hip disorder hip disability and osteoarthritis outcome score chi-squared tests hip(s) physical therapy obesity comorbidities |
| title | What is the adult experience of Perthes’ disease?: initial findings from an international web-based survey |
| title_full | What is the adult experience of Perthes’ disease?: initial findings from an international web-based survey |
| title_fullStr | What is the adult experience of Perthes’ disease?: initial findings from an international web-based survey |
| title_full_unstemmed | What is the adult experience of Perthes’ disease?: initial findings from an international web-based survey |
| title_short | What is the adult experience of Perthes’ disease?: initial findings from an international web-based survey |
| title_sort | what is the adult experience of perthes disease initial findings from an international web based survey |
| topic | perthes disease web-based survey legg-calve-perthes disease short form-36 total hip arthroplasty (tha) hip disorder hip disability and osteoarthritis outcome score chi-squared tests hip(s) physical therapy obesity comorbidities |
| url | https://online.boneandjoint.org.uk/doi/epdf/10.1302/2633-1462.35.BJO-2021-0185.R1 |
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