BACKGROUND: The aim of the present study was to investigate health-related quality of life (HRQOL) and the living conditions of young adults with congenital hypothyroidism (CH) detected on newborn screening. METHOD: Among medical institutions that care for CH patients in Japan and were approached to in the present study, 78 institutions agreed to participate. The World Health Organization Quality of Life-26 (WHO/QOL-26) was used for measurement of HRQOL. CH patients who gave consent after receiving an explanation from their physicians filled in questionnaires at home and sent them by mail. This survey involved 51 CH patients (15 male; 36 female) whose mean age was 21.1 +/- 2.7 years (+/-SD; range, 18-27 years). The data from WHO/QOL-26 forms completed by 43 patients (12 male; 31 female) were compared with those for healthy individuals. RESULTS: Mean WHO/QOL-26 scores were 3.51 +/- 0.43 for male patients and 3.59 +/- 0.42 for female patients, and there were no significant differences between them and healthy individuals (men, 3.32 +/- 0.42; women, 3.35 +/- 0.49). No significant difference was observed between patients and healthy individuals on any domain of the WHO/QOL-26. Their degree of educational attainment was not poor. CONCLUSIONS: The HRQOL of young adults with CH detected on newborn screening was not poor.
BACKGROUND: The aim of the present study was to investigate health-related quality of life (HRQOL) and the living conditions of young adults with congenital hypothyroidism (CH) detected on newborn screening. METHOD: Among medical institutions that care for CH patients in Japan and were approached to in the present study, 78 institutions agreed to participate. The World Health Organization Quality of Life-26 (WHO/QOL-26) was used for measurement of HRQOL. CH patients who gave consent after receiving an explanation from their physicians filled in questionnaires at home and sent them by mail. This survey involved 51 CH patients (15 male; 36 female) whose mean age was 21.1 +/- 2.7 years (+/-SD; range, 18-27 years). The data from WHO/QOL-26 forms completed by 43 patients (12 male; 31 female) were compared with those for healthy individuals. RESULTS: Mean WHO/QOL-26 scores were 3.51 +/- 0.43 for male patients and 3.59 +/- 0.42 for female patients, and there were no significant differences between them and healthy individuals (men, 3.32 +/- 0.42; women, 3.35 +/- 0.49). No significant difference was observed between patients and healthy individuals on any domain of the WHO/QOL-26. Their degree of educational attainment was not poor. CONCLUSIONS: The HRQOL of young adults with CH detected on newborn screening was not poor.
Authors: Liesbeth van der Sluijs Veer; Marlies Je Kempers; Heleen Maurice-Stam; Bob F Last; Tom Vulsma; Martha A Grootenhuis Journal: Child Adolesc Psychiatry Ment Health Date: 2012-10-03 Impact factor: 3.033