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29.01.2020

Health-related quality of life in neonates and infants: a conceptual framework

verfasst von: Carol Oliveira, Nicole T. de Silva, Wendy J. Ungar, Ahmed M. Bayoumi, Yaron Avitzur, Jeffrey S. Hoch, Julia Maxwell, Paul W. Wales

Erschienen in: Quality of Life Research | Ausgabe 5/2020

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Abstract

Purpose

With reduced mortality of neonatal conditions, health-related quality of life (HRQOL) has become an important clinical outcome. However, since the meaning of HRQOL in dependent, non-autonomous infants and neonates remains largely undefined, HRQOL measurement and economic evaluation are limited due to the lack of age-specific methodology. The objective was to construct a conceptual framework of neonatal and infant HRQOL (NIHRQOL) which identifies factors relevant to the neonate and infant, their relationship with each other and the caregiving environment.

Methods

Using qualitative methods, a concept was developed based on in-depth analysis of verbatim records of two focus groups (6 caregivers, 6 healthcare providers) and five interviews with caregivers of chronically ill neonates/infants (n = 2), and healthcare professionals of a pediatric tertiary healthcare center (n = 3). Two analysts independently performed thematic analysis using an inductive and contextual approach.

Results

The majority of participants regarded NIHRQOL as an individual entity, which was closely related and strongly influenced by caregivers and family. It may be gauged by the perceived degree of effort required to achieve expected normalcy in everyday life for the neonate/infant and its family. The importance of individual HRQOL factors is developmental stage-dependent.

Conclusion

Neonatal and infant HRQOL is a multidimensional, multilayered and interconnected concept, where the child’s needs contribute most directly, and the caregiver’s and society’s ability to meet those needs characterize the interdependence between the child and its caregiving environment. Developmental stage-specific HRQOL instruments for premature and mature neonates, and infants are warranted to allow for valid HRQOL measurement.

Nur mit Berechtigung zugänglich

The WHOQOL Group. (1998). The World Health Organization Quality of Life Assessment (WHOQOL): Development and general psychometric properties. Social Science and Medicine,46(12), 1569–1585.CrossRef

World Health Organization. (1946). Constitution of the World Health Organization. Geneva, Switzerland: World Health Organization.

World Health Organization. (2014). Basic Documents (48th ed.). Geneva, Switzerland: World Health Organization.

Diamond, I. R., de Silva, N., Pencharz, P. B., Kim, J. H., & Wales, P. W. (2007). Neonatal short bowel syndrome outcomes after the establishment of the first Canadian multidisciplinary intestinal rehabilitation program: Preliminary experience. Journal of Pediatric Surgery,42(5), 806–811. https://doi.org/10.1016/j.jpedsurg.2006.12.033.PubMedCrossRef

Oliveira, C., de Silva, N. T., Stanojevic, S., Avitzur, Y., Bayoumi, A. M., Ungar, W. J., et al. (2016). Change of outcomes in pediatric intestinal failure: Use of time-series analysis to assess the evolution of an intestinal rehabilitation program. Journal of the American College of Surgeons,222(6), 1180–1188. https://doi.org/10.1016/j.jamcollsurg.2016.03.007.PubMedCrossRef

Oster, M. E., Lee, K. A., Honein, M. A., Riehle-Colarusso, T., Shin, M., & Correa, A. (2013). Temporal trends in survival among infants with critical congenital heart defects. Pediatrics,131(5), e1502–1508. https://doi.org/10.1542/peds.2012-3435.PubMedPubMedCentralCrossRef

Murray, C. J., Atkinson, C., Bhalla, K., Birbeck, G., Burstein, R., Chou, D., et al. (2013). The state of US health, 1990–2010: Burden of diseases, injuries, and risk factors. JAMA,310(6), 591–608. https://doi.org/10.1001/jama.2013.13805.PubMedCrossRef

Olieman, J. F., Penning, C., Poley, M. J., Utens, E. M., Hop, W. C., & Tibboel, D. (2012). Impact of infantile short bowel syndrome on long-term health-related quality of life: A cross-sectional study. Journal of Pediatric Surgery,47(7), 1309–1316.PubMedCrossRef

Eiser, C., & Morse, R. (2001). The measurement of quality of life in children: Past and future perspectives. Journal of Developmental and Behavioral Pediatrics,22(4), 248–256.PubMedCrossRef

10.

Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL TM 40: Reliability and validity of the Pediatric Quality of Life Inventory; Version 40 Generic Core Scales in healthy and patient populations. Medical Care,39(8), 800–812.PubMedCrossRef

11.

Fekkes, M., Theunissen, N. C., Brugman, E., Veen, S., Verrips, E. G., Koopman, H. M., et al. (2000). Development and psychometric evaluation of the TAPQOL: A health-related quality of life instrument for 1–5-year-old children. Quality of Life Research,9(8), 961–972.PubMedCrossRef

12.

Varni, J. W., Limbers, C. A., Neighbors, K., Schulz, K., Lieu, J. E. C., Heffer, R. W., et al. (2011). The PedsQLTM Infant Scales: Feasibility, internal consistency reliability, and validity in healthy and ill infants. Quality of Life Research,20(1), 45–55.PubMedCrossRef

13.

Landgraf, J. M., Vogel, I., Oostenbrink, R., van Baar, M. E., & Raat, H. (2013). Parent-reported health outcomes in infants/toddlers: Measurement properties and clinical validity of the ITQOL-SF47. Quality of Life Research,22(3), 635–646. https://doi.org/10.1007/s11136-012-0177-8.PubMedCrossRef

14.

Raat, H., Landgraf, J. M., Oostenbrink, R., Moll, H. A., & Essink-Bot, M.-L. (2007). Reliability and validity of the Infant and Toddler Quality of Life Questionnaire (ITQOL) in a general population and respiratory disease sample. Quality of Life Research,16(3), 445–460. https://doi.org/10.1007/s11136-006-9134-8.PubMedCrossRef

15.

De Civita, M., Regier, D., Alamgir, A. H., Anis, A. H., Fitzgerald, M. J., & Marra, C. A. (2005). Evaluating health-related quality-of-life studies in paediatric populations: Some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics,23(7), 659–685.PubMedCrossRef

16.

Matza, L. S., Swensen, A. R., Flood, E. M., Secnik, K., & Leidy, N. K. (2004). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value in Health,7(1), 79–92.PubMedCrossRef

17.

Bunge, E. M., Essink-Bot, M. L., Kobussen, M. P., van Suijlekom-Smit, L. W., Moll, H. A., & Raat, H. (2005). Reliability and validity of health status measurement by the TAPQOL. Archives of Diseases in Childhood,90(4), 351–358. https://doi.org/10.1136/adc.2003.048645.CrossRef

18.

Hays, R. M., Valentine, J., Haynes, G., Geyer, J., Villareale, N., McKinstry, B., et al. (2006). The seattle pediatric palliative care project: Effects on family satisfaction and health-related quality of life. Journal of Palliative Medicine,9(3), 716–728. https://doi.org/10.1089/jpm.2006.9.716.PubMedCrossRef

19.

Rajmil, L., Abad, S., Sardon, O., Morera, G., Perez-Yarza, E. G., Moreno, A., et al. (2011). Reliability and validity of the Spanish version of the TAPQOL: A health-related quality of life (HRQOL) instrument for 1- to 5-year-old children. International Journal of Nursing Studies,48(5), 549–556. https://doi.org/10.1016/j.ijnurstu.2010.09.004.PubMedCrossRef

20.

Brisson, M., Senecal, M., Drolet, M., & Mansi, J. A. (2010). Health-related quality of life lost to rotavirus-associated gastroenteritis in children and their parents: A Canadian prospective study. Pediatric Infectious Disease Journal,29(1), 73–75. https://doi.org/10.1097/INF.0b013e3181b41506.PubMedCrossRef

21.

Engelen, V., Koopman, H. M., Detmar, S. B., Raat, H., van de Wetering, M. D., Brons, P., et al. (2011). Health-related quality of life after completion of successful treatment for childhood cancer. Pediatric Blood and Cancer,56(4), 646–653. https://doi.org/10.1002/pbc.22795.PubMedCrossRef

22.

Hielkema, T., Hamer, E. G., Reinders-Messelink, H. A., Maathuis, C. G., Bos, A. F., Dirks, T., et al. (2010). LEARN 2 MOVE 0–2 years: Effects of a new intervention program in infants at very high risk for cerebral palsy; A randomized controlled trial. BMC Pediatrics,10, 76. https://doi.org/10.1186/1471-2431-10-76.PubMedPubMedCentralCrossRef

23.

Cole, C. R., Bucuvalas, J. C., Hornung, R. W., Krug, S., Ryckman, F. C., Atherton, H., et al. (2004). Impact of liver transplantation on HRQOL in children less than 5 years old. Pediatric Transplantation,8(3), 222–227. https://doi.org/10.1111/j.1399-3046.2004.00126.x.PubMedCrossRef

24.

de Wee, E. M., Fijnvandraat, K., de Goede-Bolder, A., Mauser-Bunschoten, E. P., Eikenboom, J. C., Brons, P. P., et al. (2011). Impact of von Willebrand disease on health-related quality of life in a pediatric population. Journal of Thrombosis and Haemostasis,9(3), 502–509. https://doi.org/10.1111/j.1538-7836.2010.04175.x.PubMedCrossRef

25.

Ungar, W. J. (2011). Challenges in health state valuation in paediatric economic evaluation: Are QALYs contraindicated? Pharmacoeconomics,29(8), 641–652. https://doi.org/10.2165/11591570-000000000-00000.PubMedCrossRef

26.

Ambuehl, J., Karrer, A., Meer, A., Riedel, T., & Schibler, A. (2007). Quality of life of survivors of paediatric intensive care. Swiss Medical Weekly,137(21–22), 312–316.PubMed

27.

Dalziel, S. R., Lim, V. K., Lambert, A., McCarthy, D., Parag, V., Rodgers, A., et al. (2007). Psychological functioning and health-related quality of life in adulthood after preterm birth. Developmental Medicine & Child Neurology,49(8), 597–602.CrossRef

28.

Basu, A., & Meltzer, D. (2005). Implications of spillover effects within the family for medical cost-effectiveness analysis. Journal of Health Economics,24(4), 751–773. https://doi.org/10.1016/j.jhealeco.2004.12.002.PubMedCrossRef

29.

Brouwer WBF, Van Exel NJA, Tilford MJ (2010) Incorporating caregiver and family effects in economic evaluations of child health. In: Ungar W (ed.). Economic evaluation in child health. Oxford University Press, Oxford.

30.

Lavelle, T. A., Wittenberg, E., Lamarand, K., & Prosser, L. A. (2014). Variation in the spillover effects of illness on parents, spouses, and children of the chronically ill. Applied Health Economics and Health Policy,12(2), 117–124. https://doi.org/10.1007/s40258-014-0079-8.PubMedPubMedCentralCrossRef

31.

Wittenberg, E., Ritter, G. A., & Prosser, L. A. (2013). Evidence of spillover of illness among household members: EQ-5D scores from a US sample. Medical Decision Making,33(2), 235–243. https://doi.org/10.1177/0272989X12464434.PubMedCrossRef

32.

. Guidelines for the economic evaluation of health technologies: Canada (2017). (4th ed.). Ottawa: Canadian Agency for Drugs and Technologies in Health (CADTH).

33.

Neumann, P. J., Sanders, G. D., Russell, L. B., Siegel, J. E., & Ganiats, T. G. (2017). Cost-effectiveness in health and medicine (2nd ed.). New York: Oxford University Press.

34.

Kahneman, D., & Tversky, A. (1979). Prospect theory: An analysis of decision under risk. Econometrica,47(2), 263–291.CrossRef

35.

Grange, A., Bekker, H., Noyes, J., & Langley, P. (2007). Adequacy of health-related quality of life measures in children under 5 years old: Systematic review. Journal of Advanced Nursing,59(3), 197–220. https://doi.org/10.1111/j.1365-2648.2007.04333.x.PubMedCrossRef

36.

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology,3(2), 77–101.CrossRef

37.

Struijs, M. C., Diamond, I. R., de Silva, N., & Wales, P. W. (2009). Establishing norms for intestinal length in children. Journal of Pediatric Surgery,44(5), 933–938. https://doi.org/10.1016/j.jpedsurg.2009.01.031.PubMedCrossRef

38.

Barclay-Goddard, R., King, J., Dubouloz, C. J., Schwartz, C. E., & Group Response Shift Think Tank Working. (2012). Building on transformative learning and response shift theory to investigate health-related quality of life changes over time in individuals with chronic health conditions and disability. Archives of Physical Medicine and Rehabilitation,93(2), 214–220. https://doi.org/10.1016/j.apmr.2011.09.010.CrossRef

39.

Bowlby, J. (1958). The nature of the child's tie to his mother. International Journal of Psychoanalysis,39, 350–371.PubMed

40.

Park, J., Hoffman, L., Marquis, J., Turnbull, A. P., Poston, D., Mannan, H., et al. (2003). Toward assessing family outcomes of service delivery: Validation of a family quality of life survey. Journal of Intellectual Disability Research,47(Pt 4–5), 367–384.PubMedCrossRef

41.

Scheinberg, A. M. (2011). Screening for children born extremely preterm and at extremely low birthweight—A role for health-related quality of life measures? Developmental Medicine and Child Neurology,53(10), 878–880. https://doi.org/10.1111/j.1469-8749.2011.04046.x.PubMedCrossRef

42.

McDowell, I. (2006). Measuring health. A guide to rating scales and questionnaires (3rd ed.). New York: Oxford University Press.CrossRef

Titel: Health-related quality of life in neonates and infants: a conceptual framework
verfasst von: Carol Oliveira
Nicole T. de Silva
Wendy J. Ungar
Ahmed M. Bayoumi
Yaron Avitzur
Jeffrey S. Hoch
Julia Maxwell
Paul W. Wales
Publikationsdatum: 29.01.2020
Verlag: Springer International Publishing
Erschienen in: Quality of Life Research / Ausgabe 5/2020
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-020-02432-6

Live-Webinar: Aktuelle Leitlinien bei Herz-Kreislauf-Erkrankungen

Springer Medizin

Health-related quality of life in neonates and infants: a conceptual framework

Abstract

Purpose

Methods

Results

Conclusion

Live-Webinar: Aktuelle Leitlinien bei Herz-Kreislauf-Erkrankungen

Springer Medizin

Abstract

Purpose

Methods

Results

Conclusion

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