The PedsQL Family Impact Module: preliminary reliability and validity

James W Varni, Sandra A Sherman, Tasha M Burwinkle, Paige E Dickinson, Pamela Dixon, James W Varni, Sandra A Sherman, Tasha M Burwinkle, Paige E Dickinson, Pamela Dixon

Abstract

Background: The PedsQL Measurement Model was designed to measure health-related quality of life (HRQOL) in children and adolescents. The PedsQL 4.0 Generic Core Scales were developed to be integrated with the PedsQL Disease-Specific Modules. The newly developed PedsQL Family Impact Module was designed to measure the impact of pediatric chronic health conditions on parents and the family. The PedsQL Family Impact Module measures parent self-reported physical, emotional, social, and cognitive functioning, communication, and worry. The Module also measures parent-reported family daily activities and family relationships.

Methods: The 36-item PedsQL Family Impact Module was administered to 23 families of medically fragile children with complex chronic health conditions who either resided in a long-term care convalescent hospital or resided at home with their families.

Results: Internal consistency reliability was demonstrated for the PedsQL Family Impact Module Total Scale Score (alpha = 0.97), Parent HRQOL Summary Score (alpha = 0.96), Family Functioning Summary Score (alpha = 0.90), and Module Scales (average alpha = 0.90, range = 0.82 - 0.97). The PedsQL Family Impact Module distinguished between families with children in a long-term care facility and families whose children resided at home.

Conclusions: The results demonstrate the preliminary reliability and validity of the PedsQL Family Impact Module in families with children with complex chronic health conditions. The PedsQL Family Impact Module will be further field tested to determine the measurement properties of this new instrument with other pediatric chronic health conditions.

References

    1. Varni JW, Seid M, Kurtin PS. Pediatric health-related quality of life measurement technology: A guide for health care decision makers. J Clin Outcomes Manag. 1999;6:33–40.
    1. Matza LS, Swensen AR, Flood EM, Secnik K, Leidy NK. Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issue. Value in Health. 2004;7:79–92. doi: 10.1111/j.1524-4733.2004.71273.x.
    1. Varni JW, Wallander JL. Pediatric chronic disabilities. In: Routh DK, editor. In Handbook of Pediatric Psychology. New York: Guilford; 1988. pp. 190–221.
    1. Varni JW, Katz ER, Colegrove R, Dolgin M. Family functioning predictors of adjustment of children with newly diagnosed cancer: A prospective analysis. J Child Psychol Psychiat. 1996;37:321–328.
    1. Thompson RJ, Gustafson KE. Adaptation to Chronic Childhood Illness. Washington, DC: American Psychological Association; 1996.
    1. Wallander JL, Varni JW. Effects of pediatric chronic physical disorders on child and family adjustment. J Child Psychol Psychiat. 1998;39:29–46. doi: 10.1017/S0021963097001741.
    1. Moos RH, Moos BS. Family Environment Scale Manual. 2. Vol. 2. Palo Alto, CA: Consulting Psychologists Press; 1986.
    1. Stein RE, Jessop DJ. The Impact on Family Scale revisited: Further psychometric data. J Dev Behav Pediatr. 2003;24:9–16.
    1. Landgraf JM, Abetz L, Ware JE. The CHQ User's Manual. 1. Boston: The Health Institute, New England Medical Center; 1996.
    1. Varni JW, Seid M, Rode CA. The PedsQL™: Measurement model for the Pediatric Quality of Life Inventory. Med Care. 1999;37:126–139. doi: 10.1097/00005650-199902000-00003.
    1. Varni JW, Seid M, Kurtin PS. The PedsQL™ 4.0: Reliability and validity of the Pediatric Quality of Life Inventory™ Version 4.0 Generic Core Scales in healthy and patient populations. Med Care. 2001;39:800–812. doi: 10.1097/00005650-200108000-00006.
    1. Varni JW, Seid M, Knight TS, Uzark K, Szer IS. The PedsQL™ 4.0 Generic Core Scales: Sensitivity, responsiveness, and impact on clinical decision-making. J Behav Med. 2002;25:175–193. doi: 10.1023/A:1014836921812.
    1. Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL™ 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambul Pediatr. 2003;3:329–341. doi: 10.1367/1539-4409(2003)003<0329:TPAAPP>;2.
    1. Varni JW, Seid M, Knight TS, Burwinkle TM, Brown J, Szer IS. The PedsQL™ in pediatric rheumatology: Reliability, validity, and responsivenessof the Pediatric Quality of Life Inventory™ Generic Core Scales and Rheumatology Module. Arthritis Rheum. 2002;46:714–725. doi: 10.1002/art.10095.
    1. Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P. The PedsQL™ in pediatric cancer: Reliability and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer. 2002;94:2090–2106. doi: 10.1002/cncr.10428.
    1. Varni JW, Burwinkle TM, Jacobs JR, Gottschalk M, Kaufman F, Jones KL. The PedsQL™ in Type 1 and Type 2 diabetes: Reliability and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales and Type 1 Diabetes Module. Diabetes Care. 2003;26:631–637.
    1. Varni JW, Burwinkle TM, Rapoff MA, Kamps JL, Olson N. The PedsQL™ in pediatric asthma: Reliability and validity of the Pediatric Quality of Life Inventory™ Generic Core Scales and Asthma Module. J Behav Med. 2004;27:297–318. doi: 10.1023/B:JOBM.0000028500.53608.2c.
    1. Uzark K, Jones K, Burwinkle TM, Varni JW. The Pediatric Quality of Life Inventory™ in children with heart disease. Prog Pediatr Cardiol. 2003;18:141–148. doi: 10.1016/S1058-9813(03)00087-0.
    1. Varni JW, Burwinkle TM, Szer IS. The PedsQL™ Multidimensional Fatigue Scale in pediatric rheumatology: Reliability and validity. J Rheumatol.
    1. Varni JW, Quiggins DJL, Ayala GX. Development of the Pediatric Hematology/Oncology Parent Satisfaction survey. Child Health Care. 2000;29:243–255. doi: 10.1207/S15326888CHC2904_2.
    1. Varni JW, Burwinkle TM, Dickinson P, Sherman SA, Dixon P, Ervice JA, Leyden PA, Sadler BL. Evaluation of the built environment at a Children's Convalescent Hospital: Development of the PedsQL™ Parent and Staff Satisfaction Measures for pediatric health care facilities. J Dev Behav Peds. 2004;25:10–25. doi: 10.1097/00004703-200402000-00002.
    1. Fairclough DL. Design and Analysis of Quality of Life Studies in Clinical Trials: Interdisciplinary Statistics. New York: Chapman & Hall/CRC; 2002.
    1. Ware JE. SF-36 Health Survey: Manual and Interpretation Guide. Boston, MA: The Health Institute; 1993.
    1. Fairclough DL, Cella DF. Functional Assessment of Cancer Therapy (FACT-G): Non-response to individual questions. Qual Life Res. 1996;5:321–329.
    1. Cronbach LJ. Coefficient alpha and the internal structure of tests. Psychometrika. 1951;16:297–334.
    1. Nunnally JC, Bernstein IR. Psychometric Theory. 3. New York: McGraw-Hill; 1994.
    1. Pedhazur EJ, Schmelkin LP. Measurement, Design, and Analysis: An Integrated Approach. Hillsdale, NJ: Erlbaum; 1991.
    1. McHorney CA, Ware JE, Raczek AE. The MOS 36-item short-form health survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med Care. 1993;31:247–263.
    1. McHorney CA, Ware JE, Rogers W, Raczek AE, Lu JFR. The validity and relative precision of MOS short- and long-form health status scales and Dartmouth COOP charts: Results from the Medical Outcomes Study. Med Care. 1992;30:MS253–MS265.
    1. Cohen J. Statistical Power Analysis for the Behavioral Sciences. 2. Hillsdale, NJ: Erlbaum; 1988.

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