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Frequently Asked Questions
Frequently Asked Questions

Frequently Asked Questions

1. What is the PeLTQL?

The Pediatric Liver Transplant Quality of Life (PeLTQL®) is a disease-specific questionnaire created and validated by an international team of pediatric liver transplant physicians and researchers who worked directly with their patients (all recipients of a liver transplant as an infant or child) and families to develop this unique tool which aims to assess the health related quality of life(HRQOL) in paediatric liver transplant recipients.

2. Who can use the PeLTQL?

Patients between the ages of 8 - 17 years inclusive who have received a liver transplant as an infant, child or teenager. The PeLTQL was developed involving input from patient’s who were at least one year out from their transplant, as it was felt the HRQOL issues closer to the time of transplant may differ from those further away from the time of transplant. 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.

3. When is the PeLTQL administered?

At least one year post-liver transplant surgery, and then as often as required by your Liver Transplant team at subsequent follow-up visits.

4. Who can administer the PeLTQL?

The PeLTQL will be introduced to the patient in-clinic by a physician or members of the allied health team (nurse practitioners, nurses, physiotherapists for instance).  The PeLTQL may also be administered by trained research team members, when the PeLTQL is being used in a clinical research study.

5. Where can the PeLTQL be given?

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

6. What does the PeLTQL measure in patients?

The PeLTQL measures disease-specific health-related quality of life.  Aspects of HRQOL, or domains, 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 probable anxiety or depression. If this is the case, further screening for mental health concerns should be carried out with the appropriate mental health screening tools.

7. How many questions does the PeLTQL have?

The PeLTQL instrument is comprised of 26 questions.

8. How long does the PeLTQL take to complete?

The PeLTQL takes approximately five minutes to complete. The patient (child) and the parent/guardian can complete the PeLTQL simultaneously.

9. Is there a cost associated with using the PeLTQL?

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.  To do so please contact the PeLTQL administrator at PeLTQL.info@sickkids.ca. To access the PeLTQL, download and complete the request form, sign and return to PeLTQL administrator (contact information provided on request form). 

10. Can I change a question on the PeLTQL to better suit the needs of my patients?

No. The PeLTQL was created using a rigorous development process. Altering a question could change 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).  

For details on the development of the PeLTQL, please refer to the article Development and validation of the pediatric liver transplantation quality of life: a disease-specific quality of life measure for pediatric liver transplant recipients. J Pediatr. 2014 Sep;165(3):547-55.e7. doi: 10.1016/j.jpeds.2014.05.024.

11. What is the difference between the PeLTQL and the PedsQL generic module?

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 undergo unique physical, social and emotional health related challenges, in comparison to their healthy peers or other children with chronic disease.

12. Is the PeLTQL a valid tool in assessing health related quality of life?

The PeLTQL has been validated, and has excellent psychometric properties. Please refer to the article for more details
Development and validation of the pediatric liver transplantation quality of life: a disease-specific quality of life measure for paediatric liver transplant recipients. J Pediatr. 2014 Sep;165(3):547-55.e7. doi: 10.1016/j.jpeds.2014.05.024.

13. If a patient has received more than one liver transplant, can they still complete the PeLTQL?

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

14. What if patients have received a liver transplant, as well as another organ transplant (e.g., kidney)?

PeLTQL was developed involving patients who had had one or more liver transplants.  None of the participants had other solid organs transplanted.  For this reason we would 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 who have received solid organ transplants, such as the PedsQL™ Transplant module

15. Why is the PeLTQL important?

As liver transplant recipients have been known to have excellent survival rates, it is important for liver transplant teams to move beyond traditional outcomes, such as morbidity, mortality and improving physiological outcomes for patients. Liver transplant recipients face a unique set of challenges post transplant, such as the need for life-long immunosuppression, scarring and disfigurement, and fears of graft rejection.  These challenges may lead to other mental health issues such as anxiety and depression, which are more prevalent in liver transplant recipients5.   A disease-specific questionnaire should allow health care providers to better monitor patient outcomes in clinical practice. As an evaluative tool, PeLTQL can be used to explore the changes in an individual's HRQOL after LT to assess the relative efficacy of medical interventions and to facilitate improvements in medical decision making.

16. Why was the PeLTQL developed?

Prior to the development of PeLTQL, there was no established disease-specific HRQOL measure for use in the paediatric liver transplant population.  Quality of life measures that were being used were generic and did not reflect specific issues that affect the paediatric liver transplant population6. Experts in the paediatric liver transplantation encouraged the development of an instrument that measured a spectrum of functional outcomes for paediatric liver transplant patients6. Although liver transplantation is a life-saving procedure, it is not curative and recipients continue to live with a chronic condition that requires immunosuppressive medications and ongoing medical monitoring. As most paediatric liver recipients now live long lives it was felt to be imperative to move beyond biomedical outcomes and assess biopsychosocial outcomes such as quality of life, to allow specializing physicians to treat patients more holistically.

17. How is the PeLTQL scored?

The direction of scoring for the five-point Likert scale used in the questionnaire is reversed, so that
a higher score indicates better quality of life.

For example:
For Question #8, the patient selected “4 - often” as their answer. This will be written as a score of 25 on the scoring sheet. The final score is scaled so that possible final scores range from zero to 100.

Please see PeLTQL Scoring Sheet for more information.

18. How can I start using the PeLTQL?

Please email PeLTQL.info@sickkids.ca to receive a “Welcome to PeLTQL” information package.