From: Health-related quality of life in patients with primary immunodeficiency disease
HRQOL Indicator | Type of test | Health concepts measured | Advantages | Disadvantages |
---|---|---|---|---|
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 | |
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 |  |
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 | |
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 (=Â 7) to extremely bad (=Â 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 |