Health Status of Children with Special Health Care Needs: Measurement Issues and Instruments

Abstract

The methods for measuring health care outcomes and monitoring the health status of the child with a chronic health condition must be available, accessible, and meaningful. This review was evoked by this need to identify reliable and valid instruments for measuring the health status of children with special health care needs. The objectives are as follows: (1) to review the methodologic and substantive issues related to the selection of instruments and (2) to identify those instruments available currently for collecting data regarding health status of children with special health care needs. A Medline search of the literature published since 1966 through 1998 and restricted to human subjects and the English language was conducted. Indexing terms included health status, quality of life, outcome assessment, functional status, and patient satisfaction. Multiple reviewers selected instruments based on their usefulness in clinical settings as generic, disease nonspecific, child health status instruments. Few instruments were identified that can be used by pediatricians for tracking and monitoring the health status of children with special health care needs. In conclusion, to progress in the field of outcomes measurement of children with special health care needs, it will be necessary to develop new measurement tools. These instruments must (1) provide valid and reliable information on health status; (2) be useful in guiding the management of patients; and (3) not be a burden for physicians, patients, or patients' families. Clin Pediatr. 1999;38:525-533

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References

Johnson & Johnson Pediatric Institute and the American Academy of Pediatrics. Pediatric practice: how to survive and thrive in the changing health care system. Pediatrics . 1995;96:iv.

Bradlyn AS , Harris CV , Warner JE , et al. An investigation of the validity of the Quality of Well-Being Scale with pediatric oncology patients. Health Psychol. 1993;12:246-250.

McDowell I. , Newell C. Measuring Health: a Guide to Rating Scales and Questionnaires. New York: Oxford University Press ; 1987.

Starfield B. , Bergner M. , Ensminger M. , et al. Adolescent health status measurement: Development of the Child Health and Illness Profile. Pediatrics. 1993 ;91:430-435.

Harrell FE , Marcus SE , Layde PM , et al. Statistical methods in SUPPORT. J Clin Epidemiol. 1990;43:89S-98S.

Pantell RH , Lewis CC Measuring the impact of medical care on children. J Chron Dis. 1987;40:99S-108S.

Cella DF , Tulsky DS Quality of life in cancer: definition, purpose, and method of measurement . Cancer Invest. 1993;11:327-336.

Perrin EC , Sayer AG , Willett JB Sticks and stones may break my bones.... Reasoning about illness causality and body functioning in children who have a chronic illness. Pediatrics. 1991;88:608-619.

Kazis LE , Anderson JJ , Meenan RF Effect sizes for interpreting changes in health status. Med Care. 1989;27:S178-S189.

10.

Deyo RA , Centor RM Assessing the responsiveness of functional scales to clinical change: an analogy to diagnostic test performance. J Chron Dis. 1986;39:897-906.

11.

Guyatt G. , Walter S. , Norman G. Measuring change over time: assessing the usefulness of evaluative instruments . J Chron Dis. 1987;40:171-178.

12.

Deyo RA , Inui TS Toward clinical applications of health status measures: sensitivity of scales to clinically important changes. Health Serv Res. 1984; 19:275-289.

13.

Stewart AL , Greenfield S. , Hays RD , et al. Functional status and well-being of patients with chronic conditions . JAMA. 1989;262:907-913.

14.

Bergman DA Thriving in the 21st century: outcome assessment, practice parameters, and accountability. Pediatrics. 1995;96:831-835.

15.

McGlynn EA , Halfon N. , Leibowitz A. Assessing the quality of care for children: prospects under health reform . Arch PediatrAdolesc Med. 1995;149:359-368.

16.

Nelson EC , Berwick DM The measurement of health status in clinical practice. Med Care. 1989;27:S77-S90.

17.

Eisen M. , Donald C. , Ware JE , Brook R. Conceptualization and Measurement of Health for Children in the Health Insurance Study. Santa Monica, CA: The Rand Corporation Publication R-2313-HEW ; 1980.

18.

Feeny DH , Furlong W. , Boyle M. , Torrance GW Multiattribute health status classification systems: health utilities index . Pharmacoeconomics. 1995 ;7:490-502.

19.

Torrence GW , Furlong W. , Feeny DH , Boyle M. Multiattribute preference functions: health utilities index. Pharmacoeconomics. 1995;6:503-520.

20.

Starfield B. , Riley AW , Green BF , et al. The adolescent child health and illness profile: a population-based measurement of health . Med Care. 1995;33:553-566.

21.

Torrance GW , Feeny DH , Furlong WJ , et al. Multi-attribute utility function for a comprehensive health status classification system. Health Utilities Index Mark 2. Med Care. 1996 ;34:702-722.

22.

Landgraf JM , Abetz L. , Ware JE The CHQ User's Manual. 1st ed. Boston: The Health Institute, New England Medical Center ; 1996.

23.

Rifkin L. , Wolf MH , Lewis CC , Pantell RH Children's perceptions of physicians and medical care: two measures . J Pediatr Psychol. 1988;13:247-254.

24.

Lewis CC , Scott DE , Pantell RH , Wolf MH Parent satisfaction with children's medical care: development, field test, and validation of a questionnaire. Med Care. 1986;24:209-215.

25.

Simonian SJ , Tarnowski KJ , Park A. , Bekeny P. Child, parent, and physician perceived satisfaction with pediatric outpatient visits. Dev Behav Pediatr. 1993;14:8-12.

26.

Breslau N. , Mortimer EA Seeing the same doctor: determinants of satisfaction with specialty care for disabled children. Med Care. 1981 ;19:741-758.

27.

Torrance GW Measurement of health state utilities for economic appraisal: a review. J Health Econ. 1986;5:1-30.

28.

Hughes JE , Riley A. Basic gross motor assessment: tool for use with children having minor motor dysfunction. Phys Ther. 1981;61:503-511.

29.

Msall ME , DiGaudio K. , Rogers BT , et al. The Functional Independence Measure for Children (WeeFIM). Clin Pediatr. 1994;33:421-430.

30.

Stein R. , Reissman C. , Jessop D. Tables documenting the properties of the Functional Status II® Measure . New York: Albert Einstein College of Medicine ; 1986.

31.

Lansky SB , List MA , Lansky LL , et al. The measurement of performance in childhood cancer patients . Cancer. 1987;62:1651-1656.

32.

Stein Rek , Riessmann CK The development of an Impact-on-Family Scale: preliminary findings . Med Care. 1980;18:465-472.