Introduction. Patient-reported outcome measures (PROMs) has gained momentum in the orthopaedic literature. The GOAL-LD (Gait Outcomes Assessment List for Limb Deformity) incorporates the framework of The WHO International Classification of Functioning, Disability and Health and correlates highly with the Paediatric Outcomes Data Collection Instrument (PODCI) when applied in a limb reconstruction setting. The Royal Children's Hospital Melbourne, Australia, supported by The University of Melbourne is designing and implementing a Limb Reconstruction Registry, prospectively enrolling patients with a number of key conditions and provide a mechanism for capturing surgical data and PROMs at regular follow-up intervals. LimbDREAM (The Limb Reconstruction Registry of Experience, Aspiration and Measures) has begun recruiting participants, and this paper serves as a narrative review of our design and implementation process. Materials & Methods. After provision of a research grant, audit was conducted to examine local case mix and estimate recruitment based on conditions selected. Literature review was focussed on (i) registries in the paediatric limb reconstruction domain and (ii) use of PROMs across conditions selected. A high-level process-flow chart was constructed in order to inform governance and staffing requirements in addition to REDCap Database structure. Local as well as scalable deployment was considered. Alpha and beta testing was performed by principal and associate investigators prior to participant recruitment. Results. Audit identified 6 condition streams for inclusion: Congenital limb deficiencies, congenital pseudarthrosis of the tibia, bone dysplasias, bone tumours, amputation, and complex deformity of other etiology. Literature review identified 20 PROMs used across these conditions, with limited validation studies and significant implementation heterogeneity. REDCap database design took longer than anticipated (planned 10 months, actual 18 months) before being recruitment ready, due to the complexity of ensuring data collection logic would work across highly diverse patient journeys. Initial recruitment across all streams has been promising. Email and text message reminders have proved helpful in increasing survey return rates. Conclusions. Prospective collection of PROMs as well as surgical data via a standardized dataset will provide the basis for future condition-specific research, with the ability to support nested trials. Implementation requires forethought with regard to time frames and staffing for non-automated steps as well as data integrity review. The next phase of the LimbDREAM project will be to integrate use of the Registry into our weekly Limb Reconstruction Meeting to ensure that operative plans and data are captured close to the point of care

Purpose. The objective of this study was to compare items from musculoskeletal outcome questionnaires with items generated by pre- and post-operative ankle arthrodesis and arthroplasty patients (patient-selected portion of the Patient-Specific Index (PASI-P)) to determine if existing questionnaires address patients' concerns. Materials/Methods. Patients (n=142) completed the PASI-P. Items from 6 standardised questionnaires (AAOS, patient-reported portion of AOFAS, FFI, LEFS, SMFA, WOMAC) and PASI-P were matched by 3 reviewers to corresponding categories in the International Classification of Functioning, Disability and Health (ICF). The ICF classification hierarchy codes broad first categories and increasingly detailed second, third, and fourth categories. The standardised questionnaires were then compared to the ‘gold standard’ of PASI-P. Results. 690 concepts were identified in the patients' responses, which corresponded to 45 ICF categories. Most PASI-P concepts fell into Activities and Participation (60.3%) and Body Functions and Body Structures (35.2%), including the second level categories ‘walking’ (21.6%), ‘pain’ (18.7%), and ‘recreation and leisure’ (17.4%). A total of 237 concepts was identified in the 6 questionnaires and linked to 39 second level ICF categories. Overall, SMFA addressed the most second level categories and had the closest proportion of Activities and Participation (68.9%) and Body Functions (23.0%) concepts compared to the patient-generated responses. The patient-reported portion of AOFAS addressed the fewest categories. LEFS only contained items from Activities and Participation. AAOS was the only questionnaire to address the issue of ‘swelling’, though it represented 5.6% of all patient-generated responses. The concepts of ‘swelling’, ‘recreation and leisure’, and ‘sports’ were seldom included in the questionnaires. Conclusion. No single questionnaire captured all concerns identified by patients, and the standardised questionnaires differed largely in content. Clinicians should recognise patient concerns relevant to the ankle currently not included in available questionnaires. This analysis will guide the development of a more comprehensive instrument for evaluating ankle outcomes

Purpose. No knee-specific outcome measures have demonstrated reliability, validity or responsiveness in patients with multiligament knee injuries. Furthermore, the content validity of existing questionnaires has been challenged and remains unknown for patients with concomitant neurovascular injury. As a first step in developing a disease-specific outcome measure, the objective of this study was to identify items from existing knee questionnaires pertinent to patients with multiligament knee injuries using established a priori criteria. Method. Eighty-five consecutive patients from a level one trauma centre were mailed a questionnaire comprising 124 items from 11 knee-specific instruments. They rated the frequency and importance for each item on a five-point Likert scale. Criteria for item selection included a mean importance rating (MIR) ≥ 3.5 and frequency < 30% for the response never experienced. The World Health Organization International Classification of Functioning, Disability and Health (ICF) framework was used to support the content. Results. The average age of the 60/85 respondents (70.6%) was 34.7 years and most were male (n=45). Average time from injury was 845 days. Using the Schenck classification, 19 patients were KD I, two were KD II, 39 were KD IIIL or IIIM, and nine were KD IV. Nineteen had peroneal nerve injury and five had a vascular injury. Forty-four patients were treated surgically, six nonoperatively and 10 are pre-operative. Sixty-one of 124 questionnaire items met the a priori inclusion criteria. Based on the ICF, 22 of the retained items were physical impairments (PI), 15 items were emotional impairments (EI), 18 items were activity limitations (AL), and six items were participation restrictions (PR). The 10 items with the highest MIR included six EI, one PI and three PR. Twenty-four items (PI=6 EI=13, AL=2, PR=3) of the Anterior Cruciate Ligament Quality of Life Questionnaire (ACL-QoL) satisfied the a priori criteria and this instrument also endorsed the most items within the EI and PR constructs. The Knee Osteoarthritis and Injury Outcome Score (KOOS) had 21 items (PI=7, EI=2, AL=11, PR=1) which satisfied the a priori criteria and also had the most items within the PI and AL constructs. The International Knee Documentation Committee (IKDC) Subjective Knee Form had 12 items (EI=0, PI=3, AL=9, PR=0) meeting criteria while the remaining questionnaires contained 11 items with concepts redundant to above. Combining the ACL-QoL and KOOS resulted in representation of 41/61 of the retained items (PI=13, EI=13, AL=12, PR=3). No existing instrument includes content that may result from neurological or vascular injury. Conclusion. This work has identified over sixty pertinent items across the various ICF domains relevant to patients with multiligament knee injuries. The ACL-QoL and KOOS together address over two thirds of these items. Patient and clinician focus groups will be conducted to address missing content and to further refine the questionnaire items