A nationwide UK study of surgery for Slipped Capital Femoral Epiphysis and Perthes’ Disease

About the BOSS Study

The British Orthopaedic Surgery Surveillance (BOSS) Study is a nationwide reporting mechanism to determine the epidemiology and outcomes in rare orthopaedic diseases. BOSS is based on other successful reporting systems in obstetrics (UKOSS) and Paediatric Surgery (BAPS-CASS.)

• They are under-researched.
• Our understanding is often poor.
• Interventions used in current clinical practice are rarely based on robust evidence.
• Routine sources of information are limited or unreliable.
• Comprehensive studies require a large collaboration to identify relatively small numbers of patients.
• Requests for information from multiple sources about different uncommon disorders can place an unacceptable burden on reporting clinicians.

Aims of BOSS

• To use this system to lessen the burden on reporting clinicians of multiple requests for information from different sources.
• To enable the conduct of parallel cohort or case-control as well as descriptive epidemiological studies.
• To use the knowledge gained to make practical improvements in prevention and treatment and allow for more effective service planning.
• To inform the development of randomised controlled trials.

BOSS has been developed with a nationwide collaborative of children’s orthopaedic surgeons, and is currently focusing on Slipped Capital Femoral Epiphysis (SCFE) and Perthes’ Disease.

Methodology

BOSS is based on the methodology of the British Paediatric Surveillance Unit (BPSU), which has developed an effective mechanism for surveillance of uncommon disorders in paediatrics.

Descriptive, case-control and cohort studies are conducted through a prospective, monthly case-collection scheme. Each month, up to four nominated individuals (e.g. the orthopaedic audit lead, paediatric orthopaedic lead, nurse specialist (i.e. children’s/ hip fracture nurse) and an orthopaedic trainee) are asked to notify cases of the diseases under investigation. At the end of each month details of cases reported will be sent to the nominated lead, who will be asked to verify the completeness of the data – using a simple electronic ‘tick box’. If no cases are reported it is important a nil return is confirmed.

An electronic case report form is used to capture the details of each case. The data collection form seeks confirmation of the appropriate case definition and additional information on risk factors, management and outcomes according to the protocol relating to each condition. BOSS largely collects anonymised information only. Some centres also collect identifiable information and PROM data – these centres are ‘open’ on the NIHR portfolio. The BOSS methodology is undergoing ethics committee review.

To maximise case identification patients, parents or any doctors can identify a case to be reported, and the BOSS team will follow-up with the lead clinician within the relevant centre.  Monthly sweeps will also be undertaken of hospital episode statistics to identify new cases of diseases recorded within national statistics, and the lead clinician contacted where cases have not been recorded within the BOSS study.