Preferences in the Design and Delivery of Neurodevelopmental Follow-Up Care for Children: A Systematic Review of Discrete Choice Experiments

References

• Doernberg E, Hollander E. Neurodevelopmental disorders (asd and adhd): dsm-5, icd-10, and icd-11. CNS Spectr. 2016;21(4):295–299. doi:10.1017/S1092852916000262
   PubMed Web of Science ®Google Scholar
• Jeste SS. Neurodevelopmental behavioral and cognitive disorders. CONTINUUM. 2015;21(3):690–714. doi:10.1212/01.CON.0000466661.89908.3c
   PubMedGoogle Scholar
• Boyle CA, Boulet S, Schieve LA, et al. Trends in the prevalence of developmental disabilities in US children, 1997–2008. Pediatrics. 2011;127(6):1034–1042. doi:10.1542/peds.2010-2989
   PubMed Web of Science ®Google Scholar
• Hu WF, Chahrour MH, Walsh CA. The diverse genetic landscape of neurodevelopmental disorders. Annu Rev Genomics Hum Genet. 2014;15(15):195–213. doi:10.1146/annurev-genom-090413-025600
   PubMedGoogle Scholar
• Bhatt AB, Foster E, Kuehl K, et al. Congenital heart disease in the older adult: a scientific statement from the American Heart Association. Circulation. 2015;131(21):1884–1931. doi:10.1161/CIR.0000000000000204
   PubMed Web of Science ®Google Scholar
• Soto CB, Olude O, Hoffmann RG, et al. Implementation of a routine developmental follow‐up program for children with congenital heart disease: early results. Congenit Heart Dis. 2011;6(5):451–460. doi:10.1111/j.1747-0803.2011.00546.x
   PubMed Web of Science ®Google Scholar
• Marino BS. New concepts in predicting, evaluating, and managing neurodevelopmental outcomes in children with congenital heart disease. Curr Opin Pediatr. 2013;25(5):574–584. doi:10.1097/MOP.0b013e328365342e
   PubMed Web of Science ®Google Scholar
• Marino BS, Lipkin PH, Newburger JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation. 2012;126(9):1143–1172. doi:10.1161/CIR.0b013e318265ee8a
   PubMed Web of Science ®Google Scholar
• Matsuzaki T, Matsui M, Ichida F, et al. Neurodevelopment in 1‐year‐old Japanese infants after congenital heart surgery. Pediatr Int. 2010;52(3):420–427. doi:10.1111/j.1442-200X.2009.02974.x
   PubMed Web of Science ®Google Scholar
• Majnemer A, Limperopoulos C, Shevell MI, Rohlicek C, Rosenblatt B, Tchervenkov C. A new look at outcomes of infants with congenital heart disease. Pediatr Neurol. 2009;40(3):197–204. doi:10.1016/j.pediatrneurol.2008.09.014
   PubMed Web of Science ®Google Scholar
• McGowan EC, Vohr BR. Neurodevelopmental follow-up of preterm infants: what is new? Pediatr Clin. 2019;66(2):509–523. doi:10.1016/j.pcl.2018.12.015
   PubMed Web of Science ®Google Scholar
• Salt A, Redshaw M. Neurodevelopmental follow-up after preterm birth: follow up after two years. Early Hum Dev. 2006;82(3):185–197. doi:10.1016/j.earlhumdev.2005.12.015
   PubMed Web of Science ®Google Scholar
• Ahmed R, Borst JM, Yong CW, Aslani P. Do parents of children with attention-deficit/hyperactivity disorder (ADHD) receive adequate information about the disorder and its treatments? A qualitative investigation. Patient Prefer Adherence. 2014;8:661. doi:10.2147/PPA.S60164
   PubMedGoogle Scholar
• Angelo D, Jones S, Kokoska S. Family perspective on augmentative and alternative communication: families of young children. Augmentat Alternat Commun. 1995;11(3):193–202. doi:10.1080/07434619512331277319
   Google Scholar
• Bailes AF, Gannotti M, Bellows DM, Shusterman M, Lyman J, Horn SD. Caregiver knowledge and preferences for gross motor function information in cerebral palsy. Dev Med Child Neurol. 2018;60(12):1264–1270. doi:10.1111/dmcn.13994
   PubMed Web of Science ®Google Scholar
• Davis CC, Claudius M, Palinkas LA, Wong JB, Leslie LK. Putting families in the center: family perspectives on decision making and ADHD and implications for ADHD care. J Atten Disord. 2012;16(8):675–684. doi:10.1177/1087054711413077
   PubMed Web of Science ®Google Scholar
• Kawarai S, Symon JB, Hernández A, Fryling MJ. Assessing preferences among behavioral interventions with Japanese Parents of Children With Developmental Disabilities. Child Fam Behav Ther. 2017;39(3):191–199. doi:10.1080/07317107.2017.1338450
   Web of Science ®Google Scholar
• Payne JW, Bettman JR, Johnson EJ. The use of multiple strategies in judgment and choice. Archiv Ophthalmol. 1993;111(2):194–196. doi:10.1001/archopht.1993.01090020048021
   PubMedGoogle Scholar
• Phillips KA, Johnson FR, Maddala T. Measuring what people value: a comparison of “attitude” and “preference” surveys. Health Serv Res. 2002;37(6):1659–1679. doi:10.1111/1475-6773.01116
   PubMed Web of Science ®Google Scholar
• de Bekker‐Grob EW, Ryan M, Gerard K. Discrete choice experiments in health economics: a review of the literature. Health Econ. 2012;21(2):145–172. doi:10.1002/hec.1697
   PubMed Web of Science ®Google Scholar
• Lancsar E, Fiebig DG, Hole AR. Discrete choice experiments: a guide to model specification, estimation and software. Pharmacoeconomics. 2017;35(7):697–716. doi:10.1007/s40273-017-0506-4
   PubMed Web of Science ®Google Scholar
• Ghijben P, Lancsar E, Zavarsek S. Preferences for oral anticoagulants in atrial fibrillation: a best–best discrete choice experiment. Pharmacoeconomics. 2014;32(11):1115–1127. doi:10.1007/s40273-014-0188-0
   PubMed Web of Science ®Google Scholar
• Bruch EE, Mare RD. Methodological issues in the analysis of residential preferences, residential mobility, and neighborhood change. Sociol Methodol. 2012;42(1):103–154. doi:10.1177/0081175012444105
   PubMed Web of Science ®Google Scholar
• Lancsar E, Louviere J. Conducting discrete choice experiments to inform healthcare decision making. Pharmacoeconomics. 2008;26(8):661–677. doi:10.2165/00019053-200826080-00004
   PubMed Web of Science ®Google Scholar
• Soekhai V, Whichello C, Levitan B, et al. Methods for exploring and eliciting patient preferences in the medical product lifecycle: a literature review. Drug Discov Today. 2019;24(7):1324–1331. doi:10.1016/j.drudis.2019.05.001
   PubMed Web of Science ®Google Scholar
• Cunningham CE, Deal K, Rimas H, Chen Y, Buchanan DH, Sdao-Jarvie K. Providing information to parents of children with mental health problems: a discrete choice conjoint analysis of professional preferences. J Abnorm Child Psychol. 2009;37(8):1089–1102. doi:10.1007/s10802-009-9338-9
   PubMed Web of Science ®Google Scholar
• Cunningham CE, Deal K, Rimas H, et al. Modeling the information preferences of parents of children with mental health problems: a discrete choice conjoint experiment. J Abnorm Child Psychol. 2008;36(7):1123–1138. doi:10.1007/s10802-008-9238-4
   PubMed Web of Science ®Google Scholar
• Cross J, Yang J-C, Johnson FR, et al. Caregiver preferences for the treatment of males with fragile X syndrome. J Dev Behavl Pediatr. 2016;37(1):71–79. doi:10.1097/DBP.0000000000000234
   PubMed Web of Science ®Google Scholar
• Hugh ML, Johnson LD, Cook C. Preschool teachers’ selection of social communication interventions for children with autism: an application of the theory of planned behavior. Autism. 2022;26(1):188–200. doi:10.1177/13623613211024795
   PubMed Web of Science ®Google Scholar
• Page MJ, McKenzie JE, Bossuyt PM, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. Syst Rev. 2021;10(1):1–11. doi:10.1186/s13643-021-01626-4
   PubMed Web of Science ®Google Scholar
• EndNote. EndNote. Available from: https://endnote.com/. Accessed December 12, 2022.
   Google Scholar
• Mourad Ouzzani HH, Fedorowicz Z, Elmagarmid A. Rayyan — a web and mobile app for systematic reviews. Available from: https://www.rayyan.ai/. Accessed December 12, 2022.
   Google Scholar
• Excel MCM Microsoft Corporation Microsoft Excel. Available from: https://office.microsoft.com/excel. Accessed December 12, 2022.
   Google Scholar
• Mandeville KL, Lagarde M, Hanson K. The use of discrete choice experiments to inform health workforce policy: a systematic review. BMC Health Serv Res. 2014;14(1):1–14. doi:10.1186/1472-6963-14-367
   PubMedGoogle Scholar
• Arora S, Goodall S, Viney R, Einfeld S. Using discrete-choice experiment methods to estimate the value of informal care: the case of children with intellectual disability. Pharmacoeconomics. 2019;37(4):501–511. doi:10.1007/s40273-018-0637-2
   PubMed Web of Science ®Google Scholar
• dosReis S, Ng X, Frosch E, Reeves G, Cunningham C, Bridges JF. Using best–worst scaling to measure caregiver preferences for managing their child’s ADHD: a pilot study. Patient. 2015;8(5):423–431. doi:10.1007/s40271-014-0098-4
   PubMedGoogle Scholar
• Glenngård AH, Hjelmgren J, Thomsen PH, Tvedten T. Patient preferences and willingness-to-pay for ADHD treatment with stimulants using discrete choice experiment (DCE) in Sweden, Denmark and Norway. Nord J Psychiatry. 2013;67(5):351–359. doi:10.3109/08039488.2012.748825
   PubMed Web of Science ®Google Scholar
• Mühlbacher AC, Rudolph I, Lincke H-J, Nübling M. Preferences for treatment of attention-deficit/hyperactivity disorder (ADHD): a discrete choice experiment. BMC Health Serv Res. 2009;9(1):1–10. doi:10.1186/1472-6963-9-149
   PubMedGoogle Scholar
• Nafees B, Setyawan J, Lloyd A, et al. Parent preferences regarding stimulant therapies for ADHD: a comparison across six European countries. Eur Child Adolesc Psychiatry. 2014;23(12):1189–1200. doi:10.1007/s00787-013-0515-6
   PubMed Web of Science ®Google Scholar
• Regier D, Friedman J, Makela N, Ryan M, Marra C. Valuing the benefit of diagnostic testing for genetic causes of idiopathic developmental disability: willingness to pay from families of affected children. Clin Genet. 2009;75(6):514–521. doi:10.1111/j.1399-0004.2009.01193.x
   PubMed Web of Science ®Google Scholar
• Tsai J-H, Crossnohere NL, Strong T, Bridges JF. Measuring meaningful benefit-risk tradeoffs to promote patient-focused drug development in Prader-Willi syndrome: a discrete-choice experiment. MDM Policy Pract. 2021;6(2):23814683211039457. doi:10.1177/23814683211039457
   Google Scholar
• Waschbusch DA, Cunningham CE, Pelham WE Jr, et al. A discrete choice conjoint experiment to evaluate parent preferences for treatment of young, medication naive children with ADHD. J Clin Child Adoles Psychol. 2011;40(4):546–561. doi:10.1080/15374416.2011.581617
   PubMed Web of Science ®Google Scholar
• Webb EJ, Lynch Y, Meads D, et al. Finding the best fit: examining the decision-making of augmentative and alternative communication professionals in the UK using a discrete choice experiment. BMJ open. 2019;9(11):e030274. doi:10.1136/bmjopen-2019-030274
   PubMed Web of Science ®Google Scholar
• Wymbs FA, Chen Y, Rimas HM, Deal K, Waschbusch DA, Pelham WE. Examining parents’ preferences for group parent training for ADHD when individual parent training is unavailable. J Child Fam Stud. 2017;26(3):888–904. doi:10.1007/s10826-016-0588-1
   Web of Science ®Google Scholar
• Wymbs FA, Cunningham CE, Chen Y, et al. Examining parents’ preferences for group and individual parent training for children with ADHD symptoms. J Clin Child Adoles Psychol. 2016;45(5):614–631. doi:10.1080/15374416.2015.1004678
   PubMed Web of Science ®Google Scholar
• Fegert JM, Slawik L, Wermelskirchen D, Nuebling M, Muehlbacher A. Assessment of parents’ preferences for the treatment of school-age children with ADHD: a discrete choice experiment. Expert Rev Pharmacoecon Outcomes Res. 2011;11(3):245–252. doi:10.1586/erp.11.22
   PubMed Web of Science ®Google Scholar
• Bliemer MC, Rose JM. Designing Stated Choice Experiments: State-of-The-Art. Kyoto University; 2006:1–35.
   Google Scholar
• American Psychiatric Association D, Association AP. Diagnostic and Statistical Manual of Mental Disorders: DSM-5. Vol. 5. Washington, DC: American psychiatric association; 2013.
   Google Scholar
• Bialkova S, Grunert KG, Juhl HJ, Wasowicz-Kirylo G, Stysko-Kunkowska M, van Trijp HC. Attention mediates the effect of nutrition label information on consumers’ choice. Evidence from a choice experiment involving eye-tracking. Appetite. 2014;76:66–75. doi:10.1016/j.appet.2013.11.021
   PubMed Web of Science ®Google Scholar
• Shen J, Saijo T. Does an energy efficiency label alter consumers’ purchasing decisions? A latent class approach based on a stated choice experiment in Shanghai. J Environ Manage. 2009;90(11):3561–3573. doi:10.1016/j.jenvman.2009.06.010
   PubMed Web of Science ®Google Scholar
• Van Der Pol M, Currie G, Kromm S, Ryan M. Specification of the utility function in discrete choice experiments. Value Health. 2014;17(2):297–301. doi:10.1016/j.jval.2013.11.009
   PubMed Web of Science ®Google Scholar
• Torres C, Hanley N, Riera A. How wrong can you be? Implications of incorrect utility function specification for welfare measurement in choice experiments. J Environ Econ Manage. 2011;62(1):111–121. doi:10.1016/j.jeem.2010.11.007
   Web of Science ®Google Scholar
• Caussade S, de Dios Ortúzar J, Rizzi LI, Hensher DA. Assessing the influence of design dimensions on stated choice experiment estimates. Transp Res B. 2005;39(7):621–640. doi:10.1016/j.trb.2004.07.006
   Google Scholar
• DeShazo J, Fermo G. Designing choice sets for stated preference methods: the effects of complexity on choice consistency. J Environ Econ Manage. 2002;44(1):123–143. doi:10.1006/jeem.2001.1199
   Web of Science ®Google Scholar
• Hensher DA. Identifying the influence of stated choice design dimensionality on willingness to pay for travel time savings. J Trans Econom Policy. 2004;38(3):425–446.
   Google Scholar
• Chrzan K. Using partial profile choice experiments to handle large numbers of attributes. Int J Mark Res. 2010;52(6):827–840. doi:10.2501/S1470785310201673
   Web of Science ®Google Scholar
• Sándor Z, Wedel M. Heterogeneous conjoint choice designs. J Market Res. 2005;42(2):210–218. doi:10.1509/jmkr.42.2.210.62285
   Web of Science ®Google Scholar
• Kessels R. Homogeneous versus heterogeneous designs for stated choice experiments: ain’t homogeneous designs all bad? J Choice Model. 2016;21:2–9. doi:10.1016/j.jocm.2016.08.001
   Web of Science ®Google Scholar
• Hensher DA, Stopher PR, Louviere JJ. An exploratory analysis of the effect of numbers of choice sets in designed choice experiments: an airline choice application. J Air Trans Manage. 2001;7(6):373–379. doi:10.1016/S0969-6997(01)00031-X
   Web of Science ®Google Scholar
• Bech M, Kjaer T, Lauridsen J. Does the number of choice sets matter? Results from a web survey applying a discrete choice experiment. Health Econ. 2011;20(3):273–286. doi:10.1002/hec.1587
   PubMed Web of Science ®Google Scholar
• Rose JM, Hensher DA, Caussade S, de Dios Ortúzar J, Jou R-C. Identifying differences in willingness to pay due to dimensionality in stated choice experiments: a cross country analysis. J Transp Geogr. 2009;17(1):21–29. doi:10.1016/j.jtrangeo.2008.05.001
   Web of Science ®Google Scholar
• Louviere JJ, Street D, Burgess L, Wasi N, Islam T, Marley AA. Modeling the choices of individual decision-makers by combining efficient choice experiment designs with extra preference information. J Choice Model. 2008;1(1):128–164. doi:10.1016/S1755-5345(13)70025-3
   Web of Science ®Google Scholar
• Collins AT, Bliemer MC, Rose JM. Constrained stated choice experimental designs. 2014.
   Google Scholar
• Bliemer MC, Collins AT. On determining priors for the generation of efficient stated choice experimental designs. J Choice Model. 2016;21:10–14. doi:10.1016/j.jocm.2016.03.001
   Web of Science ®Google Scholar
• Street DJ, Burgess L, Louviere JJ. Quick and easy choice sets: constructing optimal and nearly optimal stated choice experiments. Int J Res Market. 2005;22(4):459–470. doi:10.1016/j.ijresmar.2005.09.003
   Web of Science ®Google Scholar
• de Bekker-Grob EW, Donkers B, Jonker MF, Stolk EA. Sample size requirements for discrete-choice experiments in healthcare: a practical guide. Patient. 2015;8(5):373–384. doi:10.1007/s40271-015-0118-z
   PubMedGoogle Scholar
• Barthold D, Brah AT, Graham SM, Simoni JM, Hauber B. Improvements to survey design from pilot testing a discrete-choice experiment of the preferences of persons living with HIV for long-acting antiretroviral therapies. Patient. 2022;15(5):513–520. doi:10.1007/s40271-022-00581-z
   PubMedGoogle Scholar
• Rose JM, Bliemer MC. Sample size requirements for stated choice experiments. Transportation. 2013;40(5):1021–1041. doi:10.1007/s11116-013-9451-z
   Web of Science ®Google Scholar
• McFadden D. Conditional logit analysis of qualitative choice behavior. 1973.
   Google Scholar
• Hensher DA, Greene WH. The mixed logit model: the state of practice. Transportation. 2003;30(2):133–176. doi:10.1023/A:1022558715350
   Web of Science ®Google Scholar
• Vass C, Boeri M, Karim S, et al. Accounting for preference heterogeneity in discrete-choice experiments: an ISPOR special interest group report. Value Health. 2022;25(5):685–694. doi:10.1016/j.jval.2022.01.012
   PubMed Web of Science ®Google Scholar
• Karim S, Craig BM, Vass C, Groothuis-Oudshoorn CG. Current practices for accounting for preference heterogeneity in health-related discrete choice experiments: a systematic review. PharmacoEconomics. 2022;40(10):1–14.
   Web of Science ®Google Scholar