Advertisement

Quality of Life Research

, Volume 5, Issue 2, pp 205–211 | Cite as

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

  • M. Apajasalo
  • H. Sintonen
  • C. Holmberg
  • J. Sinkkonen
  • V. Aalberg
  • H. Pihko
  • M. A. Siimes
  • I. Kaitila
  • A. Mäkelä
  • K. Rantakari
  • R. Anttila
  • J. Rautonen
Research Papers

Abstract

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.

Key words

Adolescents children measure quality of life self-assessment 

Preview

Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.

References

  1. 1.
    Greenfield S, Nelson EC. Recent developments and future issues in the use of health status assessment measures in clinical settings. Med Care 1992; 30(Suppl 5): 23–41.Google Scholar
  2. 2.
    Revicki DA. Health-related quality of life in the evaluation of medical therapy for chronic illness. J Fam Pract 1989; 29: 377–380.Google Scholar
  3. 3.
    Jenkins CD. Assessment of outcomes of health intervention. Soc Sci Med 1992; 35: 367–375.Google Scholar
  4. 4.
    Walker SR, Rosser RM, eds. Quality of life assessment: key issues in the 1990s. Dordrecht: Kluwer Academic Publishers, 1993.Google Scholar
  5. 5.
    Häyry M. Measuring the quality of life: why, how and what? Theor Med 1991; 12: 196–223.Google Scholar
  6. 6.
    Patrick DL, Bergner M. Measurement of health status in the 1990s. Annu Rev Public Health 1990; 11: 165–183.Google Scholar
  7. 7.
    Guyatt GH, Feeny DH, Patrick DL. Measuring healthrelated quality of life. Ann Intern Med 1993; 118: 622–629.Google Scholar
  8. 8.
    Boyle MH, Torrance GW, Sinclair JC, Horwood SP. Economic evaluation of neonatal intensive care of very-low-birth-weight infants. N Engl J Med 1983; 308: 1330–1337.Google Scholar
  9. 9.
    MacKeigan LD, Pathak DS. Overview of health-related quality of life measures. Am J Hosp Pharm 1992; 49: 2236–2245.Google Scholar
  10. 10.
    Read JL, Quinn RJ, Hoefer MA. Measuring overall health: an evaluation of three important approaches. J Chronic Dis 1987; 40(Suppl 1): 7–21.Google Scholar
  11. 11.
    Gilson BS, Gilson JS, Bergner M et al. The Sickness Impact Profile. Development of an outcome measure of health care. Am J Pulic Health 1975; 65: 1304–1310.Google Scholar
  12. 12.
    Wiklund I. The Nottingham Health Profile—a measure of health-related quality of life. Scand J Prim Health Care 1990; 1990(Suppl 1): 15–18.Google Scholar
  13. 13.
    Sintonen H, Pekurinen M. A fifteen-dimensional measure of health-related quality of life (15D) and its applications. In: Walker SR, Rosser RM eds. Quality of life assessment: key issues in the 1990s. Dordrecht: Kluwer Academic Publishers, 1993: 185–195.Google Scholar
  14. 14.
    Sintonen H. The 15D-measure of health-related quality of life. I. Reliability, validity and sensitivity of its health state descriptive system. Melbourne, Australia: National Centre for Health Program Evaluation, 1994. Working paper 41.Google Scholar
  15. 15.
    Sintonen H. The 15D-measure of health-related quality of life. II. Feasibility, reliability and validity of its valuation system. Melbourne, Australia: National Centre for Health Program Evaluation, 1995. Working paper 42.Google Scholar
  16. 16.
    Aaronson NK. Methologic issues in assessing the quality of life of cancer patients. Cancer 1991; 67: 844–850.Google Scholar
  17. 17.
    Osoba D. Lessons learned from measuring health-related quality of life in oncology. J Clin Oncol 1994; 12: 608–616.Google Scholar
  18. 18.
    Slevin ML, Plant H, Lynch D, Drinkwater J, Gregory WM. Who should measure quality of life, the doctor or the patient? Br J Cancer 1988; 57: 109–112.Google Scholar
  19. 19.
    Gill TM, Feinstein AR. A critical appraisal of the quality of quality of life measurements. JAMA 1994; 272: 619–626.Google Scholar
  20. 20.
    Morel P, Almond PS, Matas AJ, et al. Long-term quality of life after kidney transplantation in childhood. Transplantation 1991; 52: 47–53.Google Scholar
  21. 21.
    Velanovich V, Tapper D. Decision analysis in children with blunt splenic trauma: the effects of observation, splenorrhaphy, or splenectomy on quality adjusted life expectancy. J Pediatr Surg 1993; 28: 179–185.Google Scholar
  22. 22.
    Dippel DWJ, Touw-Otten F, Habbema JDF. Management of children with acute pharyngitis: A decision analysis. J Fam Pract 1992; 34: 149–159.Google Scholar
  23. 23.
    Casey FA, Craig BG, Mulholland HG. Quality of life in surgically palliated complex congenital heart disease. Arch Dis Child 1994; 70: 382–386.Google Scholar
  24. 24.
    Lansky SB, List MA, Lansky LL, C.R-S, Miller DR. The measurement of performance in childhood cancer patients. Cancer 1987; 60: 1651–1656.Google Scholar
  25. 25.
    Lovell DJ, Howe S, Shear E, et al. Development of a disability measurement tool for juvenile rheumatoid arthritis. The juvenile arthritis functional assessment scale. Arthritis Rheum 1989; 32: 1390–1395.Google Scholar
  26. 26.
    Lovell DJ. Newer functional outcome measurements in juvenile rheumathoid arthritis: a progress report. J Rheumatol 1992; 19(Suppl 33): 28–31.Google Scholar
  27. 27.
    Lewis CC, Pantell RH, Kieckhefer GM. Assessment of children's health status. Field test of new approaches. Med Care 1989; 27(Suppl 3): 54–65.Google Scholar
  28. 28.
    Stein REK, Jessop DJ. A noncategorical approach to chronic childhood illness. Public Health Rep 1982; 97: 354–362.Google Scholar
  29. 29.
    Stein REK, Jessop DJ. Functional status II(R). A measure of child health status. Med Care 1990; 28: 1041–1055.Google Scholar
  30. 30.
    Feeny D, Furlong W, Barr RD, Torrance GW, Rosenbaum P Weitzman S. A comprehensive multiattribute system for classifying the health status in survivors of childhood cancer. J Clin Oncol 1992: 10: 923–928.Google Scholar
  31. 31.
    Feeny D, Leiper A, Barr RD, et al. A comprehensive multiattribute system for classifying the health status in survivors of childhood cancer: application to high-risk acute lymphoblastic leukaemia. Br J Cancer 1993; 67: 1047–1052.Google Scholar
  32. 32.
    Sintonen H. An approach to measuring and valuing health states. Soc Sci Med 1981; 15C: 55–65.Google Scholar
  33. 33.
    Sintonen H. An approach to economic evaluation of actions of health: a theoretic-methodological study in health economics with special reference to Finnish health policy. Helsinki: Government Printing Centre, 1981. Official Statistics of Finland, Special Social Studies XXXII: 74.Google Scholar
  34. 34.
    Sintonen H, Lönnqvist J, Kiviruusu O. Cost-effectiveness/ utility analysis of two drug regimens in the treatment of depression. Melbourne, Australia: National Centre for Health Program Evaluation, 1994. Working paper 37.Google Scholar
  35. 35.
    Piaget J, Inhelder B. The psychology of the child. New York: Basic Books, 1969.Google Scholar
  36. 36.
    Bland JM, Altman DG. Statistical methods for assessing agreement between two methods of clinical measurement. Lancet 1986; ii: 307–310.Google Scholar
  37. 37.
    Joyce CRB. Ethical questions and their implications for QOL studies. In: Walker SR, Rosser RM, ed. Quality of life assessment: Key issues in the 1990s. Dordrecht: Kluwer Academic Publishers, 1993: 373–382.Google Scholar
  38. 38.
    Saigal S, Feeny D, Furlong W, Rosenbaum P, Burrows E, Torrance G. Comparison of the health-related quality of life of extremely low birth weight children and a reference group of children at age eight years. J Pediatr 1994; 125: 418–425.Google Scholar
  39. 39.
    Bradlyn AS, Harris CV, Warner JE, Ritchey K, Zaboy K. An investigation of the validity of the Quality of Well-Being Scale with pediatric oncology patients. Health Psychol 1993; 12: 246–250.Google Scholar
  40. 40.
    Czyzewski DI, Mariotto MJ, Bartholomew LK, LeCompte SH, Sockrider MM. Measurement of quality of well being in a child and adolescent cystic fibrosis population. Med Care 1994; 32: 965–972.Google Scholar
  41. 41.
    Erling A, Wiklund I, Albertsson-Wikland K. Prepubertal children with short stature have a different perception of their well-being and stature then their parents. Qual Life Res 1994; 3: 425–429.Google Scholar
  42. 42.
    Almqvist F, Bredenberg P, Suominen I, Leijala H. Social kompetens och beteendeproblem bland skolbarn och barnpsykiatriska patienter—en empirisk studie med CBCL. Nord Psykiatr Tidsskr 1988; 42: 311–319.Google Scholar
  43. 43.
    Eme RF. Sex differences in childhood psychopathology: a review. In: Chess S, Thomas A eds. Annual progress in child psychiatry and child development. New York: Brunner/Mazel, 1980: 436–469.Google Scholar
  44. 44.
    Sweeting H. Reversals of fortune? Sex differences in health in childhood and adolescence. Soc Sci Med 1995; 40: 77–90.Google Scholar
  45. 45.
    Gilligan C. New maps of development: new visions of maturity. Am J Orthopsychiatry 1982; 52: 199–212.Google Scholar

Copyright information

© Rapid Science Publishers 1996

Authors and Affiliations

  • M. Apajasalo
    • 1
  • H. Sintonen
    • 2
  • C. Holmberg
    • 1
  • J. Sinkkonen
    • 1
  • V. Aalberg
    • 3
  • H. Pihko
    • 1
  • M. A. Siimes
    • 1
  • I. Kaitila
    • 4
  • A. Mäkelä
    • 1
  • K. Rantakari
    • 1
  • R. Anttila
    • 1
  • J. Rautonen
    • 1
  1. 1.Children's HospitalUniversity of HelsinkiHelsinkiFinland
  2. 2.Department of Health Policy and ManagementUniversity of KuopioKuopioFinland
  3. 3.Department of PsychiatryUniversity of HelsinkiHelsinkiFinland
  4. 4.Department of Medical GeneticsUniversity of HelsinkiHelsinkiFinland

Personalised recommendations