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.

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.

Sickle cell disease (SCD) is a genetic disorder that affects millions of people worldwide. According to the Centers for Disease Control and Prevention, over 100,000 Americans have SCD, and more than 2 million Americans have a sickle cell trait (SCT). People with SCD are more likely than others to suffer premature mortality. Genetic screening is an important step in improving quality of life and increasing longevity for those with SCD. Early detection may lead to effective management of the disease and reduction of complicating factors. The purpose of this quasi-experimental study was to determine whether health education about SCD would impact college students' knowledge, attitudes, perceived risk, and intention to seek genetic screening and counseling in relation to the disease. The theoretical foundation for this study was the health belief model (HBM). This study involved 80 college students selected from a North Texas college. These students completed pre and post versions of an SCD questionnaire. Independent samples t tests were used to determine if there were significant differences in pre- and posttest scores of participants in both groups, and a MANOVA was used to determine differences among the scores of participants in the experimental group when grouped by age, gender, race, religiosity, and socioeconomic status. The results of this study showed that SCD health education improved the knowledge of and attitudes towards participants. Future research could explore barriers to seeking SCD screening and genetic counseling. Results of this study may further social change by encouraging the development of college-based health education efforts to increase awareness about SCD.

Sickle cell disease (SCD) is a genetic disorder that affects millions of people worldwide. According to the Centers for Disease Control and Prevention, over 100,000 Americans have SCD, and more than 2 million Americans have a sickle cell trait (SCT). People with SCD are more likely than others to suffer premature mortality. Genetic screening is an important step in improving quality of life and increasing longevity for those with SCD. Early detection may lead to effective management of the disease and reduction of complicating factors. The purpose of this quasi-experimental study was to determine whether health education about SCD would impact college students' knowledge, attitudes, perceived risk, and intention to seek genetic screening and counseling in relation to the disease. The theoretical foundation for this study was the health belief model (HBM). This study involved 80 college students selected from a North Texas college. These students completed pre and post versions of an SCD questionnaire. Independent samples t tests were used to determine if there were significant differences in pre- and posttest scores of participants in both groups, and a MANOVA was used to determine differences among the scores of participants in the experimental group when grouped by age, gender, race, religiosity, and socioeconomic status. The results of this study showed that SCD health education improved the knowledge of and attitudes towards participants. Future research could explore barriers to seeking SCD screening and genetic counseling. Results of this study may further social change by encouraging the development of college-based health education efforts to increase awareness about SCD.