The Minneapolis-Manchester Quality of Life instrument: reliability and validity of the Adolescent Form.

PURPOSE: With improvement in survival after childhood cancer, increasing emphasis is being placed on the impact of treatment and its sequelae on the health-related quality of life (HRQL) of survivors. The Minneapolis-Manchester Quality of Life Instrument (MMQL) is a standardized patient self-report instrument designed to assess HRQL in survivors of childhood cancer. The MMQL is being developed for three age groups to address the changing developmental need of different ages: MMQL-Youth (8 to 12 years), MMQL-Adolescent (13 to 20 years), and MMQL-Young Adult (21 to 45 years). This report focuses on the development and testing of the MMQL-Adolescent Form. PATIENTS AND METHODS: To validate the instrument, the MMQL-Adolescent Form was administered to 397 adolescents (129 healthy individuals, 110 patients with cancer undergoing therapy, and 158 subjects off therapy for cancer). Factor analysis was conducted to refine the instrument. Construct validity was conducted by comparing similar constructs in the MMQL-Adolescent Form and the Child Health Questionnaire (CHQ). Discriminate validity was determined by comparing healthy children with children with cancer either on or off therapy. Stability of the MMQL was tested by readministering the MMQL-Adolescent Form 2 weeks later. RESULTS: Internal consistency reliability was in the acceptable range for this instrument. The MMQL was able to discriminate between the three study populations. There were high correlations between the MMQL scales and similar CHQ domains. Test-retest reliability of the MMQL-Adolescent Form demonstrated that the instrument was extremely stable in all scales tested. CONCLUSION: Overall, the data provide evidence for the validity and reliability of the MMQL-Adolescent Form as a comprehensive, multidimensional self-report instrument for measuring HRQL among adolescent survivors of childhood cancer.

High risk of subsequent neoplasms continues with extended follow-up of childhood Hodgkin's disease: report from the Late Effects Study Group.

PURPOSE: We present an update of a previously reported Late Effects Study Group cohort of 1,380 children with Hodgkin's disease (HD) diagnosed between 1955 and 1986 in patients aged 16 years or younger. We describe the pattern and incidence of subsequent neoplasms (SNs) occurring with extended follow-up. PATIENTS AND METHODS: Median age at diagnosis of HD was 11.7 years (range, 0.3 to 16.9 years) and at last follow-up was 27.8 years. Median length of follow-up was 17.0 years. RESULTS: An additional 103 SNs were ascertained (total SNs = 212). The cohort was at an 18.5-fold increased risk of developing SNs compared with the general population (standardized incidence ratio [SIR], 18.5, 95% CI, 15.6 to 21.7). The cumulative incidence of any second malignancy was 10.6% at 20 years, increasing to 26.3% at 30 years; and of solid malignancies was 7.3% at 20 years, increasing to 23.5% at 30 years. Breast cancer was the most common solid malignancy (SIR, 56.7). Other commonly occurring solid malignancies included thyroid cancer (SIR, 36.4), bone tumors (SIR, 37.1), and colorectal (SIR, 36.4), lung (SIR, 27.3), and gastric cancers (SIR, 63.9). Risk factors for solid tumors included young age at HD and radiation-based therapy. Thirty-two patients developed third neoplasms, with the cumulative incidence approaching 21% at 10 years from diagnosis of second malignancy. CONCLUSION: Additional follow-up of this large cohort of HD survivors documents an increasing occurrence of known radiation-associated solid tumors, (breast and thyroid cancers), as well as emergence of epithelial neoplasms common in adults, (colon and lung cancers) at a younger age than expected in the general population, necessitating ongoing surveillance of this high risk population.

The Minneapolis-Manchester Quality of Life instrument: Reliability and validity of the Youth Form.

OBJECTIVE: Improvements in survival after childhood cancer have increased emphasis on health-related quality of life (HRQoL) of survivors. We developed the Minneapolis-Manchester Quality of Life-Youth Form (MMQL-YF) as a standardized patient self-report instrument designed to assess HRQoL in childhood cancer survivors between the ages of 8 and 12 years. STUDY DESIGN: To validate the instrument, the MMQL-YF was administered to 643 children (481 healthy, 162 with cancer). Factor analysis was conducted to refine the instrument, and Cronbach's alpha coefficient was used to measure its internal reliability. Known-groups validity was determined by comparing healthy children with those with cancer. Construct validity was studied by a comparison of similar domains in the MMQL-YF and the Child Health Questionnaire (CHQ). Stability was tested by re-administration of the MMQL-YF 2 weeks later. RESULTS: Internal consistency reliability was in the acceptable range for this instrument. The MMQL-YF was able to distinguish between known groups, and its scales correlated highly with similar CHQ domains. Test-retest reliability showed that the instrument was extremely stable in all scales tested. CONCLUSION: Data provide evidence for the validity and reliability of the MMQL-YF as a comprehensive, multidimensional, self-report instrument for measuring HRQoL among childhood cancer survivors.