LCPD can cause femoral head deformity and osteoarthritis requiring total hip replacement (THR). Currently, there is little data on how patients are functioning after a THR from patients’ perspective. The purpose of this study was to collect a large patient-reported outcome data set on adults with LCPD, including those who had a THR, using a Web-survey method and to compare their outcomes to a normative population. An English REDCap-based survey was built and made available on a LCPD study group website. The survey included childhood and adult LCPD history, SF-36 Health Survey, and the Hip Disability and Osteoarthritis Outcome Score (HOOS). Statistical analysis included t-test and linear and proportional odds regressions. Of the 1182 participants who completed the survey, 261 participants (89 M, 172 F) had a THR. The mean age at survey was 44.6±12.4 years (range 20–79). The mean duration since THR was 7.2±8 years (median 4, range 0–43). Gender and age matched analysis showed that THR participants had significantly lower HOOS Quality-of-Life and Sports scores (p<0.0001) for all age groups in comparison to a normative cohort. In women, the HOOS Symptoms, Daily Living, and Pain scores were also significantly lower in the <55 age groups (p<0.05). Similarly, SF-36 scores were significantly lower (p<0.05) in female <45 age groups in 5 out of 8 SF-36 scales. Overall, hip dysplasia and the number of years-from-THR were the main factors associated with worse SF-36 and HOOS scores. In comparison to the non-THR participants, THR participants had higher scores in some of the HOOS and SF-36 scales. LCPD participants with THR had significantly worse HOOS and SF-36 scores in most of the scales studied than a normative cohort, especially in women. There is significant disability even after a THR, warranting continued efforts to improve treatment and outcome.
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? 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).Aims
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