Title: The Pediatric Quality of Life Inventory (PedsQL)

Date of Publication: 1998

Author: James W. Varni, Ph.D.

Source (publisher or distributor, address):

Mapi Research Trust

27, rue de la Villette

69003 Lyon

France

Costs:

  • Not funded academic research = Free of charge
  • Funded academic research = license per study: $990 including delivery of 1 module + $330 per additional module
  • Large non-commercial organization research & evaluation: can be based per study or based on yearly contract for unlimited evaluation
    1. License per study:
      Owner’s Royalty Fees: $1,322.50.  Mapi Research Trusts’ processing Fees: $1,080 including delivery of 1 module + $360 per additional module.
    2. Annual license fee (unlimited use for 1 year):
      • Author’s annual royalty fee: 3 centers or less = $6,647, 4-10 centers = $13,260, 11-15 centers = $19,872, 16+ centers = $26,485
      • Mapi Research Trust’s Processing Fees: $1,080 including delivery of 1 module + $360 per additional module
  • Commercial Use:
    1. License fee per study:
      1. Owner’s Royalty Fees: 3 centers or less = $6,647, 4-10 centers = $13,260, 11-15 centers = $19,872, 16-20 centers = $26,485, 21-25 centers = $33,097
      2. Mapi Research Trust’s Processing Fees: $1,600 per module + $500 for cost per translation per module
    2. Annual license fee (unlimited use for 1 year):
      1. Owner’s Annual Royalty Fees: 3 trials or less/year = $33,097, 4-6 trials/year = $39,710, 7-9 trails/year = $46,322, 10-12 trials/year = $52,935, 13-15 trials/year = $59,547, 16 trials/year = $66,160
      2. Mapi Research Trust’s Annual Processing Fees: 3 trials or less/year = $3,510, 4-6 trials/year = $5,590, 7-9 trails/year = $8,515, 10-12 trials/year = $11,440, 13-15 trials/year = $14,365, 16 trials/year = $16,315

Purpose: “To measure health-related quality of life (HRQOL) in healthy children and adolescents and those with acute and chronic health conditions. The PedsQL measurement model integrates seamlessly both generic score scales and disease-specific modules into one measurements system.”1

Type of Test: Inventory

Target Population and Ages: Ages 2-18

Time Requirements: Less than 5 minutes to complete.

Administration: This outcome measure should be administered before any other health data forms and before the patient sees the physician. The parent and child questionnaires should be completed separately. The administrator should not interpret the question for the patient/parent.

Scoring: Total Scale score = 23 items, Physical Health Summary Score = 8 items, Psychosocial Health Summary Score = 15 items. Each question is answered on the “5-point Likert scale from 0 (never) to 4 (almost always)”1. Then “items are reversed scored & linearly transformed to a 0-100 scale as follows: 0=100, 1=75, 2=50, 3=25, 4=0.   The mean of the scores on the 100-point scale is then calculated (sum of all items divided by number of items answered)”1 and higher scores indicate a better quality of life.

Type of information, resulting from testing: Results of the outcome measure inform the clinician of the patient’s outlook on their quality of life and inform the clinician of what the patient struggles with or performs really well. This questionnaire provides information in the physical, emotional, social, and school functioning dimensions.

Environment for Testing: No specific environment noted, but a quiet area would be best.

Equipment and Materials Needed: Writing utensil, writing surface, and a quiet environment.

Examiner Qualifications: Any clinician with capability to administer inventory survey and maintain a neutral tone if asked questions (so as not to sway any answers).

Psychometric Characteristics: If the child requires someone read the survey to him/her, then the reader’s voice should be kept in a neutral tone so as not to influence the child’s responses. If the child has trouble understanding the written statements, then they should complete the preceding age group form. If the child’s cognitive disabilities interfere with their ability to fill out the form, the parent should complete the Parent-Proxy Report form instead. If the participant does not understand the question they are informed they are allowed to not answer. If a participant is completing the PedsQL as part of a study, make sure the participant is informed their answers will be evaluated as a group, instead of individually.

Standardization/normative data: MCID = 4.5

Evidence of Reliability: Total Scale Score: Child Self-Report = 0.88, Parent Proxy-Report = 0.90

Evidence of Validity: “Distinguishes between healthy children and children with acute and chronic health conditions; distinguishes disease severity within a chronic health condition.”1

Discriminative: Unknown

Predictive: Predictive of poorly perceived quality of life.

Strengths: Translated into several languages, easy to administer, does not require a lot of time to complete, can use younger age version if patient cannot comprehend current age level survey.

Weaknesses: If a patient does not understand a question the administrator is not allowed to interpret question for him/her. Costly if using it for funded academic research.

Clinical Applications: The PedsQL can be used to assess a patient’s outlook on his/her quality of life, or assess a parent’s outlook on their child’s quality of life, specifically in children with various types of chronic diseases. Patient responses on the outcome measure can also steer the direction of physical therapy or other type of medical treatment to focus more on activities that can improve a child’s quality of life.

 

The study by Baggott et al. focused on using multiple outcome measures to assess quality of life in children with various types of cancer one week after receiving chemotherapy and compared their results to normative data obtained from healthy children. Most of the participants were males, all children ranged from 10 to 18 years old, and all participants completed a memorial Symptom Assessment Scale, a PedsQL (Generic & Cancer Modules), and a Karnofsky Performance Status (KPS). All participants completed the questionnaires based on the week prior when they received chemotherapy treatment. During the treatment the most common side effects that were experienced by the patients included nausea, fatigue, pain, alopecia, and drowsiness.

The results of the study showed that when compared to scores of healthy children the participants reported lower scores overall, lower physical functioning scores, and lower school functioning scores of the PedsQL. This study also looked at symptoms associated with chemotherapy and their correlation to perceived quality of life and found that nausea had the biggest impact on negative perceptions of health related quality of life (HRQOL).  This is because nausea was the symptom causing patients to be in the hospital longer. The results also demonstrated that participants did not have significantly lower emotional or social functional scores on the PedsQL. This could be due to the fact that children do not understand the severity of their diagnoses, they may not acknowledge their negative emotions, or perhaps they are very optimistic. Overall, the study found that if there are more negative side effects of chemotherapy and cancer, the HRQOL will be lower.

 

  1. PedsQLTM. The PedsQL Measurement Model for the Pediatric Quality of Life InventoryTM Web Site. http://www.pedsql.org/index.html. Published 1998. Accessed March 12, 2015.
  2. Varni J, Seid M, Rode C. The PedsQL: Measurement Model for the Pediatric Quality of Life Inventory. Medical Care. 1999; 37(2):126-139.
  3. Baggott C, et al. An evaluation of the factors that affect the health-related quality of life of children following myelosuppressive chemotherapy. Support Care Cancer. 2011; 19:353-361.
  4. Vetter T, Bridgewater C, McGwin Jr G. An Observational Study of Patient versus Parental Perceptions of Health-related Quality of Life in Children and Adolescents with Chronic Pain Condition. Health and Quality of Life Outcomes. 2012;10(85)1-6.