To identify a suite of the key physical, emotional, and social outcomes to be employed in clinical practice and research concerning Perthes' disease in children. The study follows the guidelines of the COMET-Initiative (Core Outcome Measures in Effectiveness Trials). A systematic review of the literature was performed to identify a list of outcomes reported in previous studies, which was supplemented by a qualitative study exploring the experiences of families affected by Perthes’ disease. Collectively, these outcomes formed the basis of a Delphi survey (two rounds), where 18 patients with Perthes’ disease, 46 parents, and 36 orthopaedic surgeons rated each outcome for importance. The International Perthes Study Group (IPSG) (Dallas, Texas, USA (October 2018)) discussed outcomes that failed to reach any consensus (either ‘in’ or ‘out’) before a final consensus meeting with representatives of surgeons, patients, and parents.Aims
Methods
Young Adult Hip [YAH] pathology is now better recognised and treated than decades ago. However, our patients have suggested to us that they encountered delays in recognition and referral. For the past four years incoming referrals of YAH have been questioned away from the ROH clinic environment in groups of 100 incoming referrals by TS Gambling, Senior Lecturer in Psychology. Time from onset of symptoms to clinic attendance; number of GP visits; Consultants seen before accurate diagnosis; validity of earlier investigations; severity and effects of symptoms on their daily lives and careers; social effects; body image; self-confidence; oxford hip scores. The median age was 28 years; the mean delay in being seen at a YAH clinic was 8.3–8.6 years. The mean number of consultants seen before the YAH clinic was 2.3 – 2.6. Fewer than 5% were properly investigated by these consultants. The mean oxford hip score was 30; in only 8% was it less than 20, the common level for hospital referral. 22% were unable to work. In 8% their career was unaffected. Although 70% were working or pursuing a career, almost all required adaptations /redeployment to sedentary work/Long-term sickness testing employers' tolerance/Intermittent sickness/putting off promotion/ further education/part time working/change of career. Only 8% were unaffected at work. In addition, there were profound social effects upon self-esteem, body image, relationships, as well as comfort during sex. These results do not make comforting news. In addition to the above difficulties, all our patients expressed; Powerlessness; Frustration; Anger; Not being listened to; being unsupported; Undermined; Humiliation. The family doctor/ GP services are poor at appreciating the disability in YAH patients. YAH onset is characteristically at 19.5 years, just when youngsters are becoming independent and self-reliant. The OHS is an invalid/misleading discriminator in these patients when considering referral. The hospital orthopaedic service is poor at recognising and investigating YAH disease.
