We will be supporting the APERT study outlined below. This is the first time that Aussie Hands is involved in supporting a research project.
Hand surgeons at the Royal Children’s Hospital recently received ethics approval for the APERT study which will be the longest follow-up of hand function in APERT’s ever done which will be very important in the assessment of quality of life and functional outcomes.
Finally, many years of fundraising and grants has given Aussie Hands the opportunity to provide financial assistance towards research. Total contribution by Aussie Hands for the APERT study will be $4435. It is anticipated in the future, Aussie Hands will embrace other valuable research projects.
Long Term Review of Hand Surgery for APERT Syndrome
Apert syndrome is a congenital syndrome with significant craniofacial & complex hand anomalies, both of which require surgical reconstruction. Surgery usually begins in infancy & for most children many procedures are required to achieve optimal function. Over the past 40 years approximately 20 patients with Apert syndrome have undergone surgery to their hands at Royal Children’s Hospital (RCH), Melbourne.
We are intending to conduct an audit into the long-term outcomes of this surgery.
We wish to review the patients who have undergone this surgery over the past 40 years at the RCH. We feel that it is important to audit the outcomes of surgery in this group, as the surgical techniques have evolved throughout this period.
Our aim is to formally re-assess as many of the patients as possible. To our knowledge from the literature a follow up of the long-term outcome of hand surgery in Apert patients has not been performed.
The patients will be identified by the hand fellow (principal investigator – Dr Kim Taylor) from the existing craniofacial database, theatre records and hospital coding numbers. Records will be reviewed by the principal investigator to obtain details of the surgical procedures. Patients will be invited to participate by a phone call from the hand fellow of the plastic surgical department. The assessment would involve an initial phone call questionnaire to the children or where appropriate, the parents by a hand therapist. This is a standardized assessment (the FIM or weeFIM assessment) and is of approximately 20 minutes duration. Then an outpatient appointment at the Royal Children’s Hospital for approximately 1-2 hours will be scheduled at the patient or parent’s convenience for further assessment by a hand therapist and the hand fellow. This will be similar in nature to the routine outpatient reviews that the patient will be familiar with. It will involve assessment of hand function including range of movement and strength measurement and assessment of dexterity and sensation.
We will also ask to take photographs of patient’s hands (after obtaining appropriate consent) – this is also done routinely in our clinical practice. This will involve 2D images of three views of each patient’s hands and digital copies of previous photographs.
For any interstate or country patients we will co-ordinate their assessment with other appointments at RCH to avoid any extra travel.
All information collected will be stored on a password protected RCH computer within the locked office of the plastic surgical department until the youngest child reaches 25 years of age. Stored data will be de-identified.
We intend to publish the de-identified outcomes of this study in a peer reviewed hand surgery journal after appropriate consent from patients has been obtained.