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About Sickkids
About SickKids

October 10, 2014

Dr. Vicky Ng develops quality of life measure for liver transplant recipients

By Ashley Durk

Dr. Vicky Ng, Medical Director of the Liver Transplant Program at The Hospital for Sick Children (SickKids), has developed a quality of life (QOL) measure specifically for paediatric liver transplantation patients.

Known as the Pediatric Liver Transplantation Quality of Life (PeLTQL) measure, the tool was created to help liver transplant recipients achieve the best outcomes after their operation.

Ng’s research was published in the September 2014 print edition of The Journal of Pediatrics, in an article titled Development and Validation of the Pediatric Liver Transplantation Quality of Life: A Disease-Specific Quality of Life Measure for Pediatric Liver Transplant Recipients.

“In 2014, long-term survival for babies and children who have had a liver transplantation is the rule; it’s no longer the exception,” says Ng, who is also a Staff Physician, Division of Gastroenterology, Hepatology and Nutrition. “We need to focus on understanding issues that matter to patients. Excellent outcomes are about more than just living a long time with normal blood test results and ultrasound findings.”

“The PeLTQL will help liver transplant recipients by honing in on target areas where we can intervene, including concerns about physical function, mental health, emotional wellness, and depression and anxiety, which are domains we might never have guessed to be important to the patient if we simply relied on conventional monitoring tools.”

SickKids is home to the largest paediatric liver transplant program in Canada, with over 30 transplantations performed each year and a success rate of over 95 per cent. Most paediatric liver transplant programs in the US perform five to 20 transplants per year. To date, post-transplant outcomes have relied on the same generic QOL tools used in patients with asthma, diabetes or heart surgery.

The PeLTQL closes this gap in knowledge by being the first disease-specific instrument for paediatric liver transplant recipients that complements existing tools. The questionnaire takes less than five minutes to complete and can be easily administered in an ambulatory clinic setting.

The 26 questions in the PeLTQL tool were derived, generated and finalized by 135 paediatric liver transplant recipients from across Canada, Australia, the US and England to whom Ng turned for assistance.  Broad participation was important, she says, because no one knows better than the patients themselves about QOL items and considerations after a liver transplant operation. The questions focus on future health, coping and adjustment, and social-emotional factors, many of which are missing in generic tools.

“How a patient perceives outcome is so much more than the objective data we as physicians are accustomed to using for monitoring these patients,” says Ng. “How they feel, their perspective, and their whole evaluation, affects their physical, mental, emotional, and social adaptive well-being, as well as family functioning.”

Ng worked closely with Dr. Anthony Otley, Head of the Division of Gastroenterology & Nutrition at IWK Health Centre in Halifax and a former trainee at SickKids. IWK sends patients to SickKids for liver transplantation since Nova Scotia does not have its own paediatric liver transplant program. Otley also developed one of the first paediatric disease-specific QOL tools for inflammatory bowel disease.

Ng says the low organ donation rates in Toronto are a major concern. She notes that one donation can save up to eight lives and encourages people to register as a donor at www.beadonor.ca.