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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 

Early assessment of health-related quality of life (HRQOL) among paediatric liver transplant recipients relied on the presence or absence of conventional signs 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, which are vital for a complete and accurate understanding of their ongoing health status following a liver transplant.    

The Paediatric Liver Transplant Quality of Life (PeLTQL) questionnaire was created to meet this need. Developed by researchers at the Hospital for Sick Children (SickKids) in Toronto, and IWK Health Centre in Halifax, the PeLTQL is the first disease-specific HRQOL tool designed specifically for paediatric liver transplant recipients. The PeLTQL provides a voice for that patient and parent perspective. It assesses a number of themes that have been 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 guide better care.  

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

Developing a new essential tool for paediatric liver transplant recipients

We want past and future paediatric liver transplant recipients to both survive and thrive – and the high-quality evidence provided by our PeLTQL questionnaire can help to make our vision a reality.  

The PeLTQL team aims: 

  1. To provide a clinical management tool for clinicians to monitor and assess liver transplant patients’ health related quality of life (HRQOL) in their clinical practice. 
  2. To provide a data collection tool for research and quality improvement efforts within, between and across clinical settings and patient populations.  
  3. 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 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, MSc, MD(IWK Health Centre, Halifax).  

PeLTQL collaborators 

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

Why we want you to use PeLTQL

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

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

In Clinical Care: It's an ideal tool for health professionals who want to incorporate quality of life assessment and monitoring in their routine practice with liver transplant recipients. It can also be useful as an initial screening tool to identify mental health and other concerns requiring further treatment, assessment or referral.

In Research: By conducting or supporting research that uses the PeLTQL in clinical settings, researchers and clinician-researchers can contribute to a growing and vitally important evidence base. Providing the patient and parent perspectives on physical and emotional health, psychological well-being, and social functioning will help us find new ways to improve the quality of life for paediatric liver transplant recipients now and in the future. 

Obtaining the PeLTQL for use in clinical care or research

The PeLTQL questionnaire is available for clinical or investigator-initiated, non-industry supported, research, with no cost to obtain or administer it. If you’re interested in using the questionnaire in your research, get in touch with us and we’ll provide the following information package, including: 

  • the PeLTQL Manual and Interpretation Guide 
  • a sample of the PeLTQL Patient Version 
  • a Clinical Agreement Form or Research Agreement Form (depending on your intended use) 

We’ll answer any questions you may have, and then ask you to review, sign and send back the Agreement Form. Once we received your completed form, we’ll send you a copy of the PeLTQL tool for your clinical or research use. We look forward to hearing from you! 

Contact us via email today!

Frequently asked questions

We've answered 15 FAQs about this questionnaire below. 

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. PeLTQL assesses the health-related quality of life (HRQOL) of paediatric liver transplant recipients. 

PeLTQL can be used by, or administered to, patients between 8 - 17 years, inclusive, who have received a liver transplant as an infant, child or teenager. The PeLTQL was developed with input from patients at least one year past their transplant, because the period immediately following transplant is characterized by a unique set of issues. 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. 

PeLTQL needs to be administered at least one year after a recipient’s liver transplant surgery. After this, it can be administered as often as required by your Liver Transplant team during subsequent follow-up visits.  

 The PeLTQL needs to be introduced to the patient in-clinic, by a physician or other member of the care team, such as nurse practitioners, nurses or physiotherapists. The PeLTQL may also be administered by trained research team members, when being used in a clinical research study. 

The PeLTQL is most often given to patients attending the ambulatory liver transplant clinic but can also be given to patients admitted in 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 questionnaire is comprised of 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.  

No. The PeLTQL was created using a rigorous development process. Altering a question changes the validity of the questionnaire. All the current 26 questions arose 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 specific to children who have received liver transplants. Children who are liver transplant recipients may experience unique physical, social and emotional health related 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.doi: 10.1016/j.jpeds.2014.05.024. 

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

PeLTQL was developed with patients who had 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 PeLTQL in patients with multiorgan transplants, as the measure has not been specifically developed or studied in this population. There are other health-related quality of life tools which can be used with recipients of other solid organ transplants, such as the PedsQL™ Transplant module. 

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! 

PeLTQL key publications for health-care practitioners

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.

Funding

The PeLTQL questionnaire was made possible through the support of: 

The Hospital for Sick Children

The Hospital for Sick Children Paediatric Consultants’ Creative Professional Activity Grant (2004-2005)

We train the next generation of paediatric health-care professionals while delivering excellent clinical care.

IWK Hospital

Scholars’ Grant (2004-2005)

Canadian Institutes of Health

Research Operating Grant (2005-2009)

Questions?

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

For regular updates and links to related material, follow us on Twitter @PeLTQL. 

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! 

Follow PeLTQL on Twitter

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