Paediatric Liver Transplant Quality of Life (PeLTQL) Questionnaire

Since the first paediatric liver transplant in 1963, enormous progress has been made in improving recipients’ survival rates. Today, long-term survival is the rule, not the exception. With this progress, the focus of treatment is expanding to help patients both survive and thrive.

Until recently, assessment of health-related quality of life (HRQOL) among paediatric liver transplant recipients relied on conventional indicators, like growth milestones, number of hospitalizations and disease symptoms. There was no direct measure of social, educational and emotional issues specific to these patients and their families. The development and use of such measure is a vital stop for complete and accurate assessment of patients' ongoing health status following liver transplantation.

The Paediatric Liver Transplant Quality of Life (PeLTQL) questionnaire was created to meet this need. The questionnaire was developed by researchers at SickKids and IWK Health Centre in Halifax. It is the first validated disease-specific HRQOL tool designed specifically for paediatric liver transplant recipients. The PeLTQL provides a voice for patients' and parents' perspectives. It includes themes identified by patients and parents as important – social and emotional well-being, coping, adjustment, and future health – themes that, when better understood, can be used to inform better care.

By including the PeLTQL in routine clinical care and research, we want to help make the vision of surviving and thriving a reality.

Vision

The PeLTQL team is united by a vision of a world in which pediatric liver transplant recipients survive and thrive. We share a conviction that high quality evidence, specific to these patients’ experiences, can help make this vision a reality.

Aims

To provide a clinical management tool for systematic monitoring and assessment of liver transplant patients’ health related quality of life (HRQOL).
To provide a data collection tool for research and quality improvement efforts within, between and across clinical settings and patient populations.
To make quality of life a standard and essential health measure in clinical care, research and quality improvement, wherever paediatric liver transplants are performed.

The PeLTQL team

The PeLTQL questionnaire was developed by an international team of researchers and collaborators, led by co-creators Dr. Vicky Ng, MD, FRCPC (SickKids) and Dr. Anthony Otley, M.Sc., MD (IWK Health Centre, Halifax).

Collaborators

Dr. Anil Dhawan, MBBS, MD, FRCPCH
Dr. Rachel Taylor, PhD
Dr. Nada Yazigi, MD
Dr. Michael Stormon, MBBS, FRACP
Dr. Looi Ee, MBBS, PhD, FRACP
Dr. David Nicholas, PhD
Dr. Susan Gilmour, MD

SickKids team members

Fatema Johara, M.Sc., Biostatistician
Daniel Miller, MPH, Research Coordinator

Why we want you to use the PeLTQL

The PeLTQL fills a need for a disease-specific HRQOL tool that is valid, reliable and easy to use.

Whether you’re a health-care practitioner, paediatric liver transplant recipient or a parent, we want you to participate in using the PeLTQL questionnaire!

In Clinical Care: The PeLTQL is an ideal tool for incorporating systematic, reliable and meaningful quality of life assessment in routine practice with paediatric liver transplant recipients. It can also serve as a way to broach discussion with patients and parents, and as an initial screen for concerns needing further assessment, such as depression or anxiety.

In Research: By conducting or supporting research using the PeLTQL, researchers can contribute to a critically important evidence base. Providing the patient and parent voice on physical and emotional health, psychological well-being, and social functioning can help identify ways to improve care and make it more responsive to patients' needs.

How to obtain the PeLTQL

The PeLTQL questionnaire is available at no cost for clinical use and initiated, non-industry supported research. If you are interested in using the PeLTQL, get in touch with us and we will provide an information package, which includes:

PeLTQL Manual and Interpretation Guide
PeLTQL Patient Version sample page
PeLTQL Scoring Sheet
Clinical or Research Use Agreement Form

We will answer any questions you have, and then ask you to review, sign and send back the Agreement Form. Once we've received your completed form, we will send you the PeLTQL patient and parent versions. We look forward to hearing from you!

Frequently asked questions (FAQs)

The Paediatric Liver Transplant Quality of Life (PeLTQL) is a disease-specific questionnaire created and validated by an international team of paediatric liver transplant physicians and researchers. The team worked directly with patients (all of whom were recipients of a liver transplant as an infant or child) and their families, to develop this unique tool. The PeLTQL assesses the health-related quality of life (HRQOL) of paediatric liver transplant recipients.

The PeLTQL can be completed by patients aged 8 to 17 years old, inclusive, who have received a liver transplant as an infant, child or teenager, and who are at least one year past their most recent liver transplant. Each time a patient completes the PeLTQL, a parent or guardian should also complete the PeLTQL parent version. The patient’s parent or guardian will also complete a parent version of the PeLTQL, answering questions on their child’s health related quality of life.

The PeLTQL should be administered no earlier than one year after a patient's most recent liver transplant surgery. The reason for this is that the period immediately following transplant is characterized by a distinct set of issues. After one year, it can be administered as often as required during follow-up visits.

When used for clinical care, the PeLTQL needs to be introduced to the patient in-clinic, by a member of the care team, such as a physician, nurse practitioner, nurse or physiotherapist. The PeLTQL may also be administered by a trained research team member.

The PeLTQL is most often administered to patients attending ambulatory liver transplant clinic but can also be given to patients admitted to hospital (inpatients).

The PeLTQL measures disease-specific health-related quality of life (HRQOL). Aspects of HRQOL which make up the PeLTQL are: future health, coping and adjustment, and social and emotional status.

Lower scores on the PeLTQL may indicate that an individual has anxiety or depression. If this is the case, further screening for mental health concerns should be carried out with appropriate mental health screening tools.

The PeLTQL contains 26 questions.

The PeLTQL takes approximately 5 minutes to complete. The patient and the parent/guardian may be able to complete the PeLTQL simultaneously.

For clinical or investigator-initiated, non-industry supported research there is no cost associated with obtaining and administering copies of the PeLTQL. The PeLTQL is available for use in industry-supported research as well, but there is a cost associated with this.

Please do not change, remove or add any questions the PeLTQL. The questionnaire was created using a rigorous development process. Altering a question changes the validity of the questionnaire. All 26 questions are based on thorough analysis of discussion themes and concerns raised in item generation and item reduction phases (comprised of focus groups and one-on-one interviews with patients and their families).

Both tools are used to measure quality of life in children. However the PeLTQL is designed specifically for children who have received liver transplants. These children experience unique physical, social and emotional challenges, in comparison to their healthy peers or other children with chronic disease.

The PeLTQL has been validated and has excellent psychometric properties. Please refer to the following article for more details:

Ng VL, Nicholas D, Dhawan A, Yazigi N, Ee L, Stormon M, Gilmour S, Schrieber R, Taylor R, Andreou P, Otley A, and the PeLTQL Study Group. Development and Validation of the PeLTQL: A Disease-Specific Quality of Life Measure for Pediatric Liver Transplant Recipients. Journal of Pediatrics 2014 Sept;165(3):547-555.

Yes, as long as they are completing the PeLTQL at least one year after their most recent liver transplant.

The PeLTQL was developed with patients who have had one or more liver transplants. None of these patients had other solid organs transplanted. For this reason, we do not advocate the use of the PeLTQL in patients with multiple organ transplants, as the measure has not been specifically developed or studied in this population. There are other health-related quality of life tools that can be used with recipients of other solid organ transplants. The PedsQL™ Transplant module is one such tool.

If you are a clinical or research professional interested in using the PeLTQL in English or another language, please contact us at PeLTQL.info@sickkids.ca.

We will respond promptly with an information package. We will answer any questions you may have and ask you to review, sign and send back an Agreement Form. After we receive this, we will send you a copy of the PeLTQL tool for your clinical or research use!

Key publications

Health-related quality of life in long-term survivors of paediatric liver transplantation. Ohnemus D, Neighbors K, Rychlik K, Venick RS, Bucuvalas JC, Sundaram SS, Ng VL, Andrews WS, Turmelle Y, Maazariegos GV, Sorensen LG, Alonso EM. Liver Transplantation 2019 Sept 11.
Barriers to ideal outcomes after paediatric liver transplantation. Ng VL, Mazariegos G, Kelly B, Horslen S, McDiarmid SV, Magee J, Loomes K, Fischer R, Sundaram S, Lai, JC, Te H, Bucuvalas JC. Paediatric Transplantation 2019 Sep;23(6):e13537. Epub 2019 Jul 25. PMID: 31343109.
Health-related quality of life after paediatric liver transplantation: A qualitative analysis of the perspectives of health care providers Miserachs et al. Canadian Journal of Gastroenterology and Hepatology, Volume 2017.
Health-related quality of life after pediatric liver transplantation: A systematic review Parmar A, Vandriel S, Ng VL. Liver Transplantation. 2017 Mar;23(3):361-374. doi: 10.1002/lt.24696.
Development and validation of the pediatric liver transplantation quality of life: a disease-specific quality of life measure for pediatric liver transplant recipients Ng VL, Nicholas D, Dhawan A, Yazigi N, Ee L, Stormon M, Gilmour S, Schrieber R, Taylor R, Andreou P, Otley A, and the PeLTQL Study Group. Journal of Pediatrics 2014 Sept;165(3):547-555.
Health-related quality of life in long-term survivors of paediatric liver transplantation Kondis et al. Paediatrics & Child Health, Volume 20, Issue 4, 1 May 2015, Pages 189–194.
Experiences and barriers to health-related quality of life following liver transplantation: A qualitative analysis of the perspectives of pediatric patients and their parents. Nicholas D, Otley AR, Taylor R, Dhwan A, Gilmour S, Ng VL. Health and Quality of Life Outcomes 2010 Dec; 8: 150-157.
Quality of life after pediatric solid organ transplantation Anthony S, Pollock Bar-Ziv S, Ng VL. PediatrClin North Am 2010;57(2):559-574.

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Questions?

For any questions or requests related to the PeLTQL, please contact us at PeLTQL.info@sickkids.ca.

We will respond promptly with an information package. We will answer any questions you have and ask you to review, sign and send back an Agreement Form. After we receive this, we will send you a copy of the PeLTQL tool for your clinical or research use!

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