Abstract
Adolescents with chronic illnesses have unique and important perspectives on how their illness affects their daily lives. As adolescents are transitioning toward more independent care, measuring their symptoms and the effects of the disease on their daily functioning should be utilized to optimize quality of care. Patient-reported outcomes (PROs), such as health-related quality of life (HRQOL) measures, provide a meaningful tool for obtaining this information. This chapter emphasizes the benefits of utilizing PROs, particularly HRQOL measures, in a clinic setting. Further, we review current trends in PRO development, such as electronic patient-reported outcomes (ePROs). Finally, we address the recent movement toward family-centered care for patients with chronic conditions. Collaborative care is a paradigm in which the patient and physician make critical health care decisions together, which is particularly important for adolescents aiming toward greater independence and autonomy. It is recommended that psychologists, who have a strong background in psychometrics and instrument development, contribute to the development of new PROs and facilitate integration of these measures into clinical trials and family-centered care.
This is a preview of subscription content, log in via an institution.
Buying options
Tax calculation will be finalised at checkout
Purchases are for personal use only
Learn about institutional subscriptionsReferences
American Academy of Pediatrics. (1997). Guidelines for child health supervision III. Vol III. Elf Groce, IL: American Academy of Pediatrics.
Barker, D. H., & Quittner, A. L. (2010). A biopsychosocial model of CF: Social and emotional functioning, adherence and quality of life. In J. Allen, H. Panitch & R. Rubenstein (Eds.), Lung biology in health and disease series: Cystic fibrosis (pp. 468–481). New York: Informa Healthcare.
Barkovich, A. J., Szefler, S. J., Olson, E., Rymer, W. (2011). Scientific vision workshop on diagnostics and therapeutics [white paper]. Retrieved from National Institute of Child Health and Human Development http://www.nichd.nih.gov/vision/comments/whitepapers/Diag_Therp_White_Paper_040311.pdf.
Bausch, E., & Goldfarb, S. (2009). Electronic patient-reported outcomes for collecting sensitive information from patients. The Journal of Supportive Oncology, 7(3), 98–99.
Berwick, D. M. (2003). Disseminating innovations in health care. Journal of the American Medical Association, 289, 1969–1975.
Bodenheimer, T., Lorig, K., Homan, H., & Grumbach, K. (2002). Patient self-management of chronic disease in primary care. Journal of American Medicine Association, 288(19), 2469–2475.
Cohen, L., La Greca, A. M., Blount, R. L., Kazak, A. E., Holmbeck, G. N., & Lemanek, K. L. (2008). Introduction: Evidence-based assessment in pediatric psychology. Journal of Pediatric Psychology, 33, 2.
Coons, S. J., Gwanltney, C. J., Hays, R., Lundy, J. L., Sloan, J. A., Revicki, D. A., et al. (2009). Recommendations on evidence needed to support measurement equivalence between electronic and paper-based patient-reported outcome (PRO) measures: ISPOR ePRO Good Research Practices Task Force Report. Value in Health, 12(4), 419–429.
Cruz, I., Marciel, K. K., Cheney, J., Wainwright, C., Campbell, M., & Quittner, A. L. (2009). The preschool cystic fibrosis questionnaire‐revised: Initial validation results. Pediatric Pulmonology, 32(Suppl), 421 [Abstract].
Edwards, T. C., Huebner, C. E., Connell, F. A., & Patrick, D. L. (2002). Adolescent quality of life, part I: Conceptual and measurement framework. Journal of Adolescence, 25(3), 275–286.
Eiser, C., & Morse, R. (2001). Quality-of-life measures in chronic diseases of childhood. Health Technology Assessment, 5(4), 1–157.
Gawande, A. (2004, December 4). The Bell curve: What happens when patients find out how good their doctors really are? The New Yorker, 82–91.
Goss, C. H., & Quittner, A. L. (2007). Patient-reported outcomes in cystic fibrosis. Proceedings of the American Thoracic Society, 4, 378–386.
Guyatt, G. H., Osoba, D., Wu, A. W., Wyrwich, K. W., Norman, G. R., & Clinical Significance Consensus Meeting Group. (2002). Methods to explain the clinical significance of health status measures. Mayo Clinic Proceedings, 77, 371–383.
Gwaltney, C. J., Shields, A. L., & Shiffman, S. (2008). Equivalence of electronic and paper-and pencil administration of patient-reported outcome measures: A meta-analytic review. Value in Health, 11, 322–333.
Havermans, T., Vreys, M., Proesmans, M., & De Boeck, C. (2006). Assessment of agreement between parents and children on health-related quality of life in children with cystic fibrosis. Child: Care, Health and Development, 32(1), 1–7.
Hood, K. K., Peterson, C. M., Rohan, J. M., & Drotar, D. (2009). Association between adherence and glycemic control in pediatric type 1 diabetes: A meta-analysis. Pediatrics, 124, e1171–e1179.
Leape, L., Berwick, D., Clancy, C., Conway, J., Gluck, P., Guest, J., et al. (2009). Transforming healthcare: A safety imperative. Quality & Safety in Health Care, 18, 424–428.
Lenhart, A., Madden, M., & Hitlin, P. (2005, July 27). Teens and technology: You are leading the transition to a fully wired and mobile nation. Retrieved from www.pewInternet.org/pdfs/PIP_Teens_Tech_July2005web.pdf.
Stinson, J. N., & McGrath, P. J. (2011). Measurement and assessment of pain in pediatric patients. In M. E. Lynch, K. D. Craig, & P. W. H. Peng (Eds.), Clinical pain management: A practical guide (pp. 64). Oxford, UK: Wiley-Blackwell.
McCoy, K. S., Quittner, A. L., Oermann, C. M., Gibson, R. L., Retsch-Bogart, G. Z., & Montgomery, A. B. (2008). Inhaled aztreonam lysine for chronic airway pseudomonas aeruginosa in cystic fibrosis. American Journal of Respiratory and Critical Care Medicine, 178, 921–928.
Modi, A. C., Marciel, K. K., Slater, S. K., Drotar, D., & Quittner, A. L. (2008). The influence of parental supervision on medical adherence in adolescents with cystic fibrosis: Developmental shifts from early to late adolescence. Children’s Health Care, 37, 78–92.
Modi, A. C., & Quittner, A. L. (2003). Validation of a disease-specific measure of health-related quality of life for children with cystic fibrosis. Journal of Pediatric Psychology, 28, 535–546.
Modi, A. C., & Quittner, A. L. (2006). Barriers to treatment adherence for children with cystic fibrosis and asthma: What gets in the way? Journal of Pediatric Psychology, 31, 846–858.
Modi, A. C., Rausch, J. R., & Glauser, T. A. (2011). Patterns of nonadherence to antiepileptic drug therapy in children with newly diagnosed epilepsy. Journal of the American Medical Association, 305(16), 1669–1676.
Oermann, C. M., Retsch-Bogart, G. Z., Quittner, A. L., Gibson, R. L., McCoy, K. S., Montgomery, A. B., et al. (2010). An 18-month study of the safety and efficacy of repeated courses of inhaled aztreonam lysine in cystic fibrosis. Pediatric Pulmonology, 45(11), 1121–1134.
Palermo, T. M., Long, A. C., Lewandowski, A. S., Drotar, D., Quittner, A. L., & Walker, L. S. (2008). Evidence‐based assessment of health‐related quality of life and functional impairment in pediatric psychology. Journal of Pediatric Psychology, 33, 983–996.
Quittner, A. L., Buu, A., Messer, M. A., Modi, A. C., & Watrous, M. (2005). Development and validation of the cystic fibrosis questionnaire (CFQ) in the United States: A health‐related quality of life measure for cystic fibrosis. Chest 128, 2347–2354.
Quittner, A. L., Cruz, I., Modi, A. C., & Marciel, K. K. (2009). Health-related quality of life instruments for adolescents with chronic diseases. In W. O’Donohue & L. Tolle (Eds.), Behavioral approaches to chronic disease in adolescence: A guide to integrative care (pp. 311–327). New York: Springer.
Quittner, A. L., Modi, A. C., & Roux, A. L. (2003). Psychosocial challenges and clinical interventions for children with cystic fibrosis: A developmental approach. In R. Brown (Ed.), (pp. 333–361), Handbook of pediatric psychology in school settings. New Jersey: Lawrence Erlbaum Associates.
Quittner, A. L., Modi, A. C., Wainwright, C., Otto, K., Kirihara, J., & Montgomery, A. B. (2009). Determination of the minimal clinically important difference (MCID) scores for the Cystic Fibrosis Questionnaire-Revised (CFQ-R) Respiratory Symptom scale in two populations of patients with CF and chronic Pseudomonas aeruginosa airway infection. Chest, 135, 1610–1618.
Retsch-Bogart, G. Z., Quittner, A. L., Gibson, R. L., Oermann, C. M., McCoy, K. S., Montgomery, A. B., et al. (2009). Efficacy and safety of inhaled aztreonam lysine for airway Pseudomonas in cystic fibrosis. Chest, 135, 1223–1232.
Riley, A. W. (2004). Evidence that school-age children can self-report on their health. Ambulatory Pediatrics, 4S, 371–376.
Robinson, J. H., Callister, L. C., Berry, J. A., & Dearing, K. A. (2008). Patient-centered care and adherence: Definitions and applications to improve outcomes. Journal of the American Academy of Nurse Practitioners, 20, 600–607.
Safran, C. (2003). The collaborative edge: Patient empowerment for vulnerable populations. International Journal of Medical Informatics, 69(2–3), 185–190.
Sawicki, G. S., Rasouliyan, L., McMullen, A. H., Wagener, J. S., McColley, S. A., Pasta, D. J., et al. (2011). Longitudinal assessment of health-related quality of life in an observational cohort of patients with cystic fibrosis. Pediatric Pulmonology, 46(1), 36–44.
Schwarz, N., & Sudman, S. (1996). Answering questions: Methodology for determining cognitive and communicative processes in survey research. San Francisco: Jossey-Bass.
Scoggins, J. F., & Patrick, D. L. (2009). The use of patient-reported outcomes instruments in registered clinical trials: Evidence from ClinicalTrials.gov. Contemporary Clinical Trials, 30(4), 289–292.
Spencer, J., Cooper, H., & Milton, B. (2010). Qualitative studies of type 1 diabetes in adolescence: A systematic literature review. Pediatric Diabetes, 11(5), 364–375.
Starfield, B., Riley, A. W., Green, B. F., Ensminger, M. E., Ryan, S. A., Kelleher, K., et al. (1995). The adolescent child health and illness profile: A population-based measure of health. Medical Care, 33, 553–66.
Stone, A. A., Shiffman, S., Schwartz, J. E., et al. (2002). Patient non-compliance with paper diaries. British Medical Journal, 324, 1193–1194.
Turner, R. R., Quittner, A. L., Parasuraman, B. M., Kallich, J. D., & Cleeland, C. S. (2007). Patient-reported outcomes: Instrument development and selection issues. Value in Health, 10(s2), S86–S93.
U.S. Department of Health and Human Services, Food and Drug Administration. (2009). Guidance for industry, patient-reported outcome measures: Use in medical product development to support labeling claims. Federal Registration.
Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37, 126–39.
Verrips, G. H., Vogels, A. G., den Ouden, A. L., Paneth, N., & Verloove-Vanhorick, S. P. (2000). Measuring health-related quality of life in adolescents: Agreement between raters and between methods of administration. Child: Care, Health and Development, 26(6), 457–469.
Wyrwich, K. W., Tierney, W. M., Babu, A. N., Kroenke, K., & Wolinsky, F. D. (2005). A comparison of clinically important differences in health-related quality of life for patients with chronic lung disease, asthma or heart disease. Health Services Research, 40(2), 577–92.
Zemanick, E. T., Harris, K., Conway, S., Konstan, M. W., Marshall, B., Quittner, A. L., et al. (2010). Measuring and improving respiratory outcomes in cystic fibrosis lung disease: Opportunities and challenges to therapy. Journal of Cystic Fibrosis, 9(1), 1–16.
Zindani, G. N., Streetman, D. D., Streetman, D. S., & Nasr, S. Z. (2006). Adherence to treatment in children and adolescent patients with cystic fibrosis. Journal of Adolescent Health, 38, 13–17.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2013 Springer Science+Business Media New York
About this chapter
Cite this chapter
Quittner, A.L., Cejas, I., Blackwell, L.S. (2013). Advances in the Measurement and Utilization of Health-Related Quality of Life Instruments. In: O'Donohue, W., Benuto, L., Woodward Tolle, L. (eds) Handbook of Adolescent Health Psychology. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-6633-8_11
Download citation
DOI: https://doi.org/10.1007/978-1-4614-6633-8_11
Published:
Publisher Name: Springer, New York, NY
Print ISBN: 978-1-4614-6632-1
Online ISBN: 978-1-4614-6633-8
eBook Packages: Behavioral ScienceBehavioral Science and Psychology (R0)