Support services for adolescents and young adults with cancer or a blood disorder : measurement properties and validation of quality of life instruments for adolescents and young adults with cancer or a blood disorder

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Health-Related Quality of Life (HRQOL) is an important outcomes measure in cancer and there are specific issues depending on the site, stage, treatment and patient age. Although numerous instruments are available for cancer HRQOL, most are designed for adults, some for children, but none for adolescents and young adults (AYA) who have special age-specific concerns and poor improvement in survival compared with other age groups. An existing HRQOL instrument was modified to ensure its suitability for AYA, its validity, reliability and sensitivity were tested in Australians aged 16 to 25 years old diagnosed with cancer or a blood disorder. Varni’s PedsQLTM Measurement Model (13-18 year olds) was selected, modified then administered to families recruited from haematology/oncology clinics and wards at three Sydney Metropolitan Hospitals in person or by telephone. The Memorial Symptom Assessment Scale was used to categorise participants into groups reflecting sensitivity of symptom severity (slight, moderate and severe). The instruments demonstrated excellent internal consistency reliability, making them suitable for both group and individual comparisons. Clinical validity, construct validity, and discriminant validity were demonstrated by “known-groups” analysis, exploratory factor analysis and correlations, respectively. These new versions of the PedsQL Generic Core and Cancer Module are reliable, valid and sensitive measures of HRQOL in patients aged 16-25 years diagnosed with cancer or a blood disorder. The measures will soon be available for use as outcome measures in clinical trials and clinical practice with this age cohort in Australasia and internationally.
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