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Table 1 Common QOL assessment tools

From: Health-related quality of life in patients with primary immunodeficiency disease

HRQOL Indicator

Type of test

Health concepts measured

Advantages

Disadvantages

Child Health Questionnaire (CHQ-PF50) [12, 64, 65]

Designed to measure physical and psychosocial functioning and well-being. Aims to target both the child and the emotional impact of the child’s health on the parents

Scores are converted to a 0–100 scale with higher scores indicating better functioning and well-being

Physical Functioning

Role/Social-physical

General health perceptions

Bodily pain

Parental time impact

Parental emotional Impact

Limitations in schoolwork or activities due to physical or emotional health

Self-esteem

Mental health

General behavior

Family activities

Family cohesion

Change in health

Strong feasibility and validity as well as consistency across clinical groups

Widely used

Available and valid in many languages

The application of CHQ in younger age groups requires adaptation

Generic questionnaire, not able to provide a detailed measurement of dimensions that are specific for certain disease conditions

Short Form-36 (SF-36) [7, 8]

Generic health status form which contains 36 items evaluating an 8-scale profile of health concept measures of functional status, well-being and overall evaluation of health

Physical functioning

Social functioning

Physical problems

Emotional problems

Mental health

Vitality

Bodily pain

General health perception

Brief, applicable to all populations and can be completed by individuals both with and without medical illness. Allows comparison across diverse groups, such as healthy and ill populations, or different age groups

Not disease specific

Not a great amount of detail on each item

Pediatric Quality of Life Inventory (PedsQL 4.0) [13, 66, 67]

23 item scale encompassing parallel child self-report and parent proxy-report

A 5-point response scale is utilized and items are translated to a 0–100 scale

Physical functioning (8)

Emotional functioning (5)

Social functioning (5)

School functioning (5)

Maintains consistency across a broad age range of respondents and generally has a high level of feasibility and reliability

 

Lansky’s Play Performance Scale (LPPS) [66, 68]

Observational scoring scale for children based on level of play and activity designed based on usual activities of the child, applicable across age groups and easily scored with ratings made by the parent

Based on a 10 point incremental scoring system which ranges from fully active (100) to unresponsive (0)

Good reliability and validity and widely used in pediatric oncology

Limited in that it looks only at functioning

Life Quality Index (LQI) [9, 10]

Developed to evaluate primary immunodeficiency patients on IVIG therapy and subsequently used in SCIG treatment

Comprised of 15 items with assessments made on a 7-point Likert scale ranging from extremely good (= 7) to extremely bad (= 1)

Convenience

Pain

Improved health

Interference with social/family life

Interference with work/school

Given in a comfortable place

Does not require excessive wait time

Given in a pleasant atmosphere

Opinion on worth

Anxiety/nervousness

Expense

Dependence on others

Travel time and cost

Limitations on my freedom

Scheduling convenience

More sensitive to specific treatment-related changes in HRQL

Data cannot be compared outside of specific disease setting