Quality of life in early adolescence: A sixteendimensional health-related measure (16D)

While data on the health-related quality of life (HRQOL) of adults are accumulating, very little is known about the HRQOL—and especially the perceived HRQOL—of children. In our study we introduced a 16-dimensional, generic self-assessment measure of HRQOL (16D) for early adolescents, and demonstrated its use with four populations of children aged 12–15: (1) 239 normal schoolchildren, (2) patients waiting for organ transplantation (n=5), (3) patients with genetic skeletal dysplasias (n=19), and (4) patients with epilepsy (n=32). The HRQOL profiles of the patients differed significantly according to the diagnosis, giving support to its construct validity. The reliability of the measure was high: its repeatability coefficient was 91%. The quality of life ratings of the healthy boys and their parents differed on the dimensions of distress, vitality, speech, mental function, and discomfort and symptoms (p<0.05). In addition, there were significant differences in the health-related valuations between the girls, boys and their parents. We conclude that the assessment of quality of life of adolescents should be based on data collected from the adolescents themselves. Further, the 16D is so far the only generic HRQOL measure designed specifically for this purpose. It is capable of differentiating the HRQOL of healthy adolescents as well as patients with various diagnoses. Our experience also indicates that it is easy to use, yet it seems comprehensive, reliable, and valid.

[1]  R. Eme Sex differences in childhood psychopathology: a review. , 1979, Psychological bulletin.

[2]  D L Patrick,et al.  Measurement of health status in the 1990s. , 1990, Annual review of public health.

[3]  D. Osoba Lessons learned from measuring health-related quality of life in oncology. , 1994, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[4]  J D Habbema,et al.  Management of children with acute pharyngitis: a decision analysis. , 1992, The Journal of family practice.

[5]  H. Sintonen An approach to measuring and valuing health states. , 1981, Social science & medicine. Medical economics.

[6]  G. Kieckhefer,et al.  Assessment of Children's Health Status: Field Test of New Approaches , 1989, Medical care.

[7]  S. Walker,et al.  Quality of Life Assessment: Key Issues in the 1990s , 1993, Springer Netherlands.

[8]  D. Feeny,et al.  The comprehensive assessment of health status in survivors of childhood cancer: application to high-risk acute lymphoblastic leukaemia. , 1993, British Journal of Cancer.

[9]  A. Bradlyn,et al.  An investigation of the validity of the quality of Well-Being Scale with pediatric oncology patients. , 1993, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[10]  I. Wiklund The Nottingham Health Profile--a measure of health-related quality of life. , 1990, Scandinavian journal of primary health care. Supplement.

[11]  B. Craig,et al.  Quality of life in surgically palliated complex congenital heart disease. , 1994, Archives of disease in childhood.

[12]  R. Doughty,et al.  Measuring health-related quality of life. , 1999, The New Zealand medical journal.

[13]  C. Gilligan New maps of development: new visions of maturity. , 1982, The American journal of orthopsychiatry.

[14]  C. Joyce Ethical questions and their implication for QOL studies , 1993 .

[15]  M. List,et al.  The measurement of performance in childhood cancer patients , 1987, Cancer.

[16]  I. Wiklund,et al.  Prepubertal children with short stature have a different perception of their well-being and stature than their parents , 1994, Quality of Life Research.

[17]  J. Piaget,et al.  The Psychology of the Child , 1969 .

[18]  M. Bergner,et al.  The sickness impact profile. Development of an outcome measure of health care. , 1975, American journal of public health.

[19]  D. Feeny,et al.  A comprehensive multiattribute system for classifying the health status of survivors of childhood cancer. , 1992, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[20]  An approach to economic evaluation of actions for health : a theoretic-methodological study in health economics with special reference to Finnish heal , 1981 .

[21]  R. Stein,et al.  A noncategorical approach to chronic childhood illness. , 1982, Public health reports.

[22]  V. Velanovich,et al.  Decision analysis in children with blunt splenic trauma: the effects of observation, splenorrhaphy, or splenectomy on quality-adjusted life expectancy. , 1993, Journal of pediatric surgery.

[23]  M. Häyry Measuring the quality of life: Why, how and what? , 1991, Theoretical medicine.

[24]  D. Lovell,et al.  Development of a disability measurement tool for juvenile rheumatoid arthritis. The Juvenile Arthritis Functional Assessment Scale. , 1989, Arthritis and rheumatism.

[25]  L. K. Bartholomew,et al.  Measurement of quality of well being in a child and adolescent cystic fibrosis population. , 1994, Medical care.

[26]  W. Gregory,et al.  Who should measure quality of life, the doctor or the patient? , 1988, British Journal of Cancer.

[27]  G. Kieckhefer,et al.  Assessment of Children's Health Status , 1989 .

[28]  B. Chavers,et al.  LONG‐TERM QUALITY OF LIFE AFTER KIDNEY TRANSPLANTATION IN CHILDHOOD , 1991, Transplantation.

[29]  G W Torrance,et al.  Economic evaluation of neonatal intensive care of very-low-birth-weight infants. , 1983, The New England journal of medicine.

[30]  D. Revicki Health-related quality of life in the evaluation of medical therapy for chronic illness. , 1989, The Journal of family practice.

[31]  H. Sintonen,et al.  A fifteen-dimensional measure of health-related quality of life (15D) and its applications , 1993 .

[32]  L. Mackeigan,et al.  Overview of health-related quality-of-life measures. , 1992, American journal of hospital pharmacy.

[33]  J. Read,et al.  Measuring overall health: an evaluation of three important approaches. , 1987, Journal of chronic diseases.

[34]  S. Greenfield,et al.  Recent developments and future issues in the use of health status assessment measures in clinical settings. , 1992, Medical care.

[35]  G. Torrance,et al.  Comparison of the health-related quality of life of extremely low birth weight children and a reference group of children at age eight years. , 1994, The Journal of pediatrics.

[36]  F. Almqvist,et al.  Social kompetens och beteendeproblem bland skolbam och bampsykiatriska patienter - en empirisk studie med CBCL , 1988 .

[37]  N. Aaronson Methodologic issues in assessing the quality of life of cancer patients , 1991, Cancer.

[38]  T M Gill,et al.  A critical appraisal of the quality of quality-of-life measurements. , 1994, JAMA.

[39]  H. Sweeting Reversals of fortune? Sex differences in health in childhood and adolescence. , 1995, Social science & medicine.

[40]  J M Bland,et al.  Statistical methods for assessing agreement between two methods of clinical measurement , 1986 .

[41]  H. Sintonen The 15-D Measure of Health Related Quality of Life: Reliability, Validity and Sensitivity of its Health State Descriptive System , 1994 .

[42]  C. Jenkins,et al.  Assessment of outcomes of health intervention. , 1992, Social science & medicine.

[43]  R. Stein,et al.  Functional Status II(R): A Measure of Child Health Status , 1990, Medical care.