A REVIEW OF HEALTH OUTCOME INSTRUMENTS FOR ASTHMATIC CHILDREN & THEIR CAREGIVERS


Maryam Se Hussein, Nahlah Elkudssiah Ismail

Abstract


There are various developed general-as well as disease-or condition-specific health outcome instruments to assess an impact of asthma among asthmatic children but few of these instruments were developed in paired versions of child and caregiver. The objective of this review was to determine currently available unpaired and paired health outcome instruments for asthmatic children and their caregivers. Systemic search from Medline, Scopus and Science Direct was conducted to identify asthmatic children’s and their caregivers’ health outcomes tracking instruments that characterize basic properties of instruments such as instrument’s developer and the published year, instrument’s description, targeted age and time for completion, items and domains, administration way, scoring and scaling of instrument, type of study setting, tested sample size, availability of instrument in different languages, reliability and validity of the instrument. The results showed in total, 21 instruments were identified whereby 16 of them were administered by either asthmatic children or their caregivers, and remaining (n = 5) have paired version that was administered directly to both asthmatic children and their caregivers. Most of these instruments reported good validity and reliability (Cronbach’s alpha between 0.60-0.95). There is a need to develop more paired disease-specific health outcome instruments targeted both asthmatic children and their caregivers to get full data of the impact and burden of asthma and its health intervention on the respective respondents.

 


Keywords


Asthmatic children, Caregivers, Health outcome instrument

| PDF | HTML |

References


Yawn BP. The impact of childhood asthma on daily life of the family-a qualitative study using recurrent thematic analysis. Primary Care Respiratory J 2003;12(3):82-5.

Bemt LVD, Kooijman S, Linssen V, Lucassen P, Muris J, Slabbers G, et al. How does asthma influence the daily life of children? Results of focus group interviews. Health Quality Outcomes 2010;8:5.

Lai CKW, de Guia TS, Kim YY, Kuo SH, Mukhopadhyay A, Soriano JB, et al. Asthma control in the asia-pacific region: the asthma insights and reality in asia-pacific (AIRIAP) study. J Allergy Clin Immunol 2003;111(2):263-8.

Masoli M, Fabian D, Holts S, Beasley R. Global burden of asthma developed for the global initiative for asthma; 2004.

Chapman KR. Impact of ‘mild’ asthma on health outcomes: findings of a systematic search of the literature. Respir Med 2005;99:1350-62.

Sajid MS, Tonsi A, Baig MK. Health-related quality of life measurement. Int J Health Care Quality Assurance 2007;21(4):365-73.

Guyatt GH, King DR, Feeny DH, Stubbing D, Goldstein RS. Generic and specific measurement of health-related quality of life in a clinical trail of respiratory rehabilitation. J Clin Epidemiol 1999;52(3):187-92.

Quittner AL, Modi A, Cruz L. Systematic review of health-related quality of life measures for children with respiratory conditions. Paediatric Respiratory Reviews 2008;9:220-32.

Annett RD. Assessment of health status and quality of life outcomes for children with asthma. J Allergy Clin Immunol 2001;107(5):473-81.

Olson LM, Radecki L, Frintner MP, Weiss KB, Korfmacher J, Siegel RM. At what age can children report dependably on their asthma health status? Paediatric 2007;119(1):93-102.

Petrou S. Methodological issues raised by preference-based approaches to measuring the health status of children. Health Economics 2003;12(8):697-702.

Rutishauser C, Sawyer SM, Bowes G. Quality-of-life assessment in children and adolescents with asthma. Eur Respir J 1998;12(2):486–94.

Davis E, Waters E, Mackinnon A, Reddihough D, Graham HK, Mehmet-Radji O, et al. Paediatric quality of life instruments: a review of the impact of the conceptual framework on outcomes. Dev Med Child Neurol 2006;48(4):311–8.

Solans M, Sabrina P, Estrada M, Serra-Sutton V, Berra S, Herdman M, et al. Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value Health 2008;11(4):742-64.

DeVellis RF. Scale development: theory and applications. 2nd ed. California: Sage Publications; 2003.

Fayers PM, Machin D. Quality of life: assessment, analysis and interpretation of patient-reported outcomes. Whiley: Chichester; 2007.

Cronbach LJ. Coefficient alpha and the internal structure of a test. Psychometrika 1951;16(3):297–334.

Bowling A. Measuring health: a review of quality of life measurement scales. 2nd ed. Buckingham: Open University Press; 1997.

White SA, van den Broek NR. Methods for assessing reliability and validity for a measurement tool: a case study and critique using the WHO haemoglobin colour scale. Statistics Med 2004;23(10):1603-19.

Cicchetti DV. Methodological commentary the precision of reliability and validity estimates re-visited: distinguishing between clinical and statistical significance of sample size requirements. J Clin Exp Neuropsychol 2001;23(5):695-700.

Streiner DL, Norman GR. Health measurement scales: A practical guide to their development and use. New York: Oxford university press; 2008.

Theunissen NCM, Vogela TGC, Koopman HM, Verripe GHW, Zwinderman KAH, Verloove-Vanhorick SR, et al. The proxy problem: child report versus parent report in health-related quality of life research. Quality Life Res 1998;7(5):387–97.

Asmussen LA, Weiss KB, Elfring D, Oslon LM. Parent and child reports of asthma symptoms, Activity limitations and emotional distress: early results from the child health information reporting project (CHIRP) [abstract]. J Allergy Clin Immunol 2004;627:S182.

Usherwood TP, Scrimgeour A, Barber JH. Questionnaire to measure perceived symptoms and disability in asthma. Arch Dis Child 1990;65(7):779-81.

Bukstein DA, McGrath MM, Buchnew DA, Landgraf J, Goss TF. Evaluation of a short form for measuring health-related quality of life among paediatric asthma patients. J Allergy Clin Immunol 2000;105(2):245-51.

Creer TL, Wigal JK, Kotses H, Hatala JC, McConnaughy K, Winder JA. ALife activities questionnaire for childhood asthma. J Asthma 1993;30(6):467-73.

Christie MJ, French D, Sowden A, West A. Development of child-centered disease-specific questionnaires for living with asthma. Psychosom Med 1993;55(6):541-8.

French D, Christie MJ, Goodhew A, Sowden A. The reliability and validity of the childhood asthma questionnaires as measures of quality-of-life for 4–7 year and 8–11-year-olds. Am Rev Respir Dis 1993;147:A463.

French DJ, Christie MJ, Sowden AJ. The reproducibility of the childhood asthma questionnaires: measures of quality of life for children with asthma aged 4-16 years. Quality Life Res 1994;3(3):215-24.

White A, Slade P, Hunt C, Hart A, Ernst A. Individualised homeopathy as an adjunct in the treatment of childhood asthma: a randomised placebo controlled trial. Thorax 2002;58(4):317–21.

Chong LY, Chay OM, Shu-Chuen L. Is the childhood asthma questionnaire a good measure of health-related quality of life of asthmatic children in Asia? Validation among paediatric patients with asthma in Singapore. Pharmacoeconomics 2006;24(6):609-21.

Mishoe SC, Baker RR, Poole S, Harrell LM, Arant CB, Rupp NT. Development of an instrument to assess stress levels and quality of life in children with asthma. J Asthma 1998;35(7):553-63.

Juniper EF, Guyatt GH, Feeny DH, Griffith LE, Ferrie PJ. Minimum skills required by children to complete health-related quality of life instruments for asthma: comparison of measurement properties. Eur Respir J 1997;10(10):2285-94.

Nocea G, Caloto T, Hinojosa M, Prieto L, Colas C, Feo F. PRP10 A randomized study comparing three health-related quality of life questionnaires in asthmatic patients. Value Health 2003;6(6):779-82.

Le Coq EM, Boeke AJ, Bezemer PD, Colland VT, van Eijk JT. Which source should we use to measure quality of life in children with asthma: The children themselves or their parents? Quality Life Res 2000;9(6):625–36.

Rutishauser C, Sawyer SM, Bond L, Coffey C, Bowes G. Development and validation of the adolescent asthma quality of life questionnaire (AAQOL). Eur Respir J 2001;17(1):52–8.

Monique OM, Van De Ven Rutger CME, Engels Susan M, Sawyer Roy Otten Regina JJM, Van Den Eijnden. The role of coping strategies in quality of life of adolescents with asthma. Quality of Life Res 2007;16(4):625-34.

Van De Ven M, Engels R. Quality of life of adolescents with asthma: The role of personality, coping strategies, and symptom reporting. J Psychosom Res 2011;71(3):166–73.

Asano M, Sugiura T, Ishiguro A. Development of a tool to measure quality of life of Japanese school aged children with asthma Ver. 1. Nihon Kangokagakugakkaisi. J Jpn Acad Nurs Sci 2001;22:53-63.

Sugiura T, Asano M, Ishiguro A, Miura K, Torii S. The trial of the QOL measurement utilized quality of life of Japanese school aged children with Asthma Ver.1. Nihon syoni nanchi zensoku arerugi sikkan gakkai zassi. JJPIAAD 2003;1:15-23.

Asano M, Sugiura T, Miura K, Torii S, Ishiguro A. Reliability and validity of the self-report quality of life questionnaire for japanese school-aged children with asthma (JSCA-QOL v.3). Allergol Int 2006;55:59-65.

Nathan A, Christine A, Mark K, Michael S, James T, Philip M, et al. Development of the asthma control test: a survey for assessing asthma control. J Allergy Clin Immunol 2004;113(1):59-65.

Schatz M, Sorkness CA, Li JT, Marcus Murray JMD, Nathan Kosinski M, Pendergraft TP, et al. Asthma control test: reliability, validity, and responsiveness in patients not previously followed by asthma specialists. J Allergy Clin Immunol 2006;117(3):549-56.

Ducharme FM, Davis GM, Noya F, Rich H, Ernst P. The asthma quiz for kidz: a validated tool for children to appreciate their level of asthma control. Canadian Respiratory J 2004;11(6):541-6.

Ducharme FM, Noya F, McGillivray D, Resendes S, Ducharme-Bénard S, Zemek R, et al. Two for one: a self-management plan coupled with a prescription sheet for children and adults with asthma. Canadian Respiratory J 2008;15(7):347-54.

Elzabeth A, Skinner M, Gregory B, Diette M, Pamela J, Algatt-Bergstrom, et al. The asthma therapy assessment questionnaire (ATAQ) for children and adolescents. Dis Manage 2004;7(4):305-13.

Chiou CF, Weaver MR, Bell MA. Development of the multi-attribute pediatric asthma health outcome measure (PAHOM). Int J Quality Health Care 2005;17(1):23–30.

Chiang L, Tzeng L, Fu L, Huang J. Testing a questionnaire to measure asthma-related quality of life among children. J Nursing Scholarship 2006;38(4):383–6.

Al-Motlaq M, Sellick K. Development and validation of an asthma knowledge test for children 8–10 years of age. Child Care, Health Development 2010;37(1):123-8.

Okelo SO, Eakin MN, Patino CM, Teodoro AP, Bilderback AL, Thompson DA. The pediatric asthma control and communication instrument asthma questionnaire: for use in diverse children of all ages. J Allergy Clin Immunol 2013;132(1):55-62.

Okelo SO, Eakin MN, Riekert KA, Patino CM, Teodoro AP, Bilderback AL. Validation of parental reports of asthma trajectory, Burden, and Risk by using the pediatric asthma control and communication instrument. J Allergy Clin Immunol 2014;2(2):186–92.

Goldberg EM, Laskowski-Kos U, Wu D, Gutierrez J, Bilderback A, Okelo SO, Garro A. The pediatric asthma control and communication instrument for the emergency department (PACCI-ED) improve physician assessment of asthma morbidity in pediatric emergency department patients. J Asthma 2014;51(2):200-8.

Sullivan SA, Olson LM. Developing condition-specific measures of functional status and well-being for children. Clin Performance Quality Health Care 1995;3(3):132-8.

Weiss KB, Lozano P, Finkelstein JA, Carey V, Sullivan S, Fuhlbrigge A, et al. A randomized controlled clinical trial to improve asthma care for children through provider education and health systems change: a description of the pediatric asthma care patient outcome research team (PAC-PORT II) study design. Health Services Outcomes Res Methodol 2003;4(4):265–82.

Asmussen L, Olson LM, Grant EN, Fagan J, Weiss KB. Reliability and validity of the children's health survey for asthma. Pediatrics 1999;104(6):e71.

Olson LM, Lara M, Frintner MP. Measuring health status and quality of life for us children: relationship to race, ethnicity, and income status. Ambulatory Pediatrics 2004;4(4):377 86.

Katon W, Lozano P, Russo J, McCauley E, Richardson L, Bush T. The prevalence of DSM-IV anxiety and depressive disorders in youth with asthma compared with controls. J Adolescent Health 2007;41(5):455–63.

McCauley E, Katon W, Russo J, Richardson L, Lozano P. Impact of anxiety and depression on functional impairment in adolescents with asthma. General Hospital Psychiatry 2007;29(3):214–22.

Radecki L, Olson LM, Frintner MP, Weiss KB. Reliability and validity of the children’s health survey for asthma–child version paediatric asthma. Allergy Immunol 2008;21(2):89-98.

Juniper EF, Guyatt GH, Feeny DH, Ferrie PJ, Griffith LE, Townsend M. Measuring quality of life in children with asthma. Quality Life Res 1996;5(1):35–46.

Juniper EF. How important is quality of life in pediatric asthma? Pediatric Pulmonology 1997;15:27-31.

Tauler E, Vilagut G, Grau G, González A, Sánchez E, Figueras G, et al. The spanish version of the paediatric asthma quality of life questionnaire (PAQLQ): Metric characteristics and equivalence with the original version. Quality Life Res 2001;10(1):81-91.

Vila G, Hayder R, Bertrand C, Falissard B, De Blic J, Mouren-Simeoni M, et al. Psychopathology and quality of life for adolescents with asthma and their parents. Psychosomatics 2003;44(4):319–28.

Okelo SO, Wu AW, Krishnan JA, Rand CS, Skinner EA, Diette GB. Emotional quality-of-life and outcomes in adolescents with asthma. J Pediatrics 2004;145(4):523-9.

Raat H, Bueving HJ, de Jongste JC, Grol MH, Juniper EF, Van der Wouden JC. Responsiveness, Longitudinal and cross-sectional construct validity of the paediatric asthma quality of life questionnaire (PAQLQ) in a dutch population of children with asthma. Quality Life Res 2005;14(1):265-72.

Poachanukoon O, Visitsunthorn N, Leurmarnkul W, Vichyanond P. Pediatric asthma quality of life questionnaire (PAQLQ): Validation among asthmatic children in Thailand. Pediatric Allergy Immunol 2006;17(3):207–12.

Walker J, Winkelstein M, Land C, Lewis-Boyer L, Quartey R, Pham L, et al. Factors that influence quality of life in rural children with asthma and their parents. J Pediatric Health Care 2008;22(6):343-50.

Horner SD, Brown SA, Walker V. Is rural school-aged children's quality of life affected by their responses to asthma? J Pediatric Nursing 2012;27(5):491–9.

Juniper EF, Guyatt GH, Feeny DH, Ferrie PJ, Griffith LE, Townsend M. Measuring quality of life in parents of children of asthma. Quality Life Res 1996;5(1):27–34.

Guyatt GH, Juniper EF, Griffith LF, Feeny DH, Ferrie PJ. Children and adult perceptions of childhood asthma. Paediatric 1997;99(2):165-8.

Hederosa CA, Jansonb S, Hedlina G. A gender perspective on parents’ answers to a questionnaire on children’s asthma. Respir Med 2007;101(3):554–60.

Varni JW, Burwinkle TM, Rapoff MA, Kamps JL, Olson N. The Peds QL in paediatric asthma: reliability and validity of the paediatric quality of life inventory generic core scales and asthma module. J Behav Med 2004;27(3):297-318.

Varni JW, Sherman SA, Burwinkle TM, Dickinson PE, Dixon P. The Peds QL™ family impact module: preliminary reliability and validity. Health Quality Life Outcomes 2004;2:55.

Varni JW, Burwinkle TM, Seid M. The Peds QL™ as a pediatric patient-reported outcome: reliability and validity of the Peds QL™ Measurement Model in 25,000 children. Expert Rev Pharmacoeconomics Outcomes Res 2005;5(6):705-19.

Chan KS, Mangione-Smith R, Burwinkle T, Rosen M, Varni JW. The Peds QL(TM): reliability and validity of the short-form generic core scales and asthma module. Medical Care 2005;43(3):256-65.

Josie KL, Greenley RN, Drotar D. Health-related quality of life measures for children with asthma: Reliability and validity of the children’s health survey for asthma and the pediatric quality of life inventory 3.0 asthma module. Ann Allergy Asthma Immunol 2007;98(3):218-24.

Greenley RN, Josie KL, Drotar D. Self-reported quality of life among inner-city youth with asthma: an empirical examination of the Peds QL 3.0 Asthma Module. Ann Allergy Asthma Immunol 2008;100(2):106–11.

Seid M, Limbers CA, Driscoll KA, Opipari-Arrigan LA, Gelhard LR, Varni JW. Reliability, Validity, and responsiveness of the pediatric quality of life Inventory™ (PedsQL™) Generic core scales and asthma symptoms scale in vulnerable children with asthma. J Asthma 2010;47(2):170-7.

Thissen D, Varni JW, Stucky BD, Liu Y, Irwin DE, DeWalt DA. Using the Peds QL™ 3.0 asthma module to obtain scores comparable with those of the PROMIS pediatric asthma impact scale (PAIS). Quality Life Res 2011;20(9):1497-505.

Martíneza CR, Sossab MP. Validation of an asthma knowledge questionnaire for use with parents or guardians of children with asthma. Arch Bronconeumologia 2005;41(8):419-24.

Saldaña ARB, Mendoza RC, Kiengelher LH, Siordia RO, Hernández JS. Development of a questionnaire to measure asthmatic patients’ knowledge of their disease. Arch Bronconeumologia 2007;43(5):248-55.

Flapper BCT, Koopman HM, Napel C, van der Schans CP. Psychometric properties of the TACQOL-asthma, a disease-specific measure of health related quality of life for children with asthma and their parents. Chronic Respiratory Dis 2006;3(2):65–72.

Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A, Castro CM. The pediatric cancer quality of life inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance. J Behav Med 1998;21(2):179–204.

Varni JW, Seid M, Rode CA. The Peds QL: measurement model for the pediatric quality of life inventory. Med Care 1999;37(2):126–39.

Eiser C, Havermans T, Craft A, Kernahan J. Development of a measure to assess the perceived illness experience after treatment for cancer. Arch Dis Child 1995;72(4):302–7.

Vogels T, Verrips GH, Verloove-Vanhorick SP, Fekkes M, Kamphuis RP, Koopman HM. Measuring health-related quality of life in children: the development of the TACQOL parent form. Quality Life Res 1998;7(5):457–65.

Kieckhefer GM, Lentz MJ, Shao-Yu Tsai, Ward TM. Parent-child agreement in report of nighttime respiratory symptoms and sleep disruptions and quality. J Pediatric Health Care 2009;23(5):315-26.

Bruil J. Development of a quality of life instrument for children with chronic illness. Netherlands: Leiden University; 1999.

Walker LS, Heflinger CA. Quality of life predictors of outcome in pediatric abdominal pain patients: findings at initial assessment and 5-year follow-up. In: Drotar D. editor. Measuring health-related quality of life in children and adolescents: implications for research and practice. Mahwah USA: Lawrence Erlbaum; 1998.

Wilson SR, Rand CS, Cabana MD, Foggs MB, Halterman JS, Olson L, et al. Asthma outcomes: quality of life. J Allergy Clin Immunol 2012;129(3):S88-123.




About this article

Title

A REVIEW OF HEALTH OUTCOME INSTRUMENTS FOR ASTHMATIC CHILDREN & THEIR CAREGIVERS

Keywords

Asthmatic children, Caregivers, Health outcome instrument

Date

15-06-2015

Additional Links

Manuscript Submission

Journal

International Journal of Pharmacy and Pharmaceutical Sciences
Vol 7, Issue 8, 2015 Page: 2-16

Online ISSN

0975-1491

Statistics

218 Views | 100 Downloads

Authors & Affiliations

Maryam Se Hussein
Clinical Bio Pharmaceutics Research Group (CBRG), Faculty of Pharmacy, Universiti Teknologi MARA, PuncakAlam Campus, 42300 Bandar Puncak Alam, Selangor, Malaysia
Malaysia

Nahlah Elkudssiah Ismail
Clinical Bio Pharmaceutics Research Group (CBRG), Faculty of Pharmacy, Universiti Teknologi MARA, PuncakAlam Campus, 42300 Bandar Puncak Alam, Selangor, Malaysia
Malaysia


Article Tools



Refbacks

  • There are currently no refbacks.