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Am J Perinatol
DOI: 10.1055/a-1948-2580
Original Article

Costs of Neonatal Medical Complexity: Impact on New Parent Stress and Decision-Making

Mattea E. Miller 
1   Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, Maryland
,
Pamela Donohue
1   Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, Maryland
2   Department of Population and Family Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
,
Rebecca Seltzer
1   Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, Maryland
2   Department of Population and Family Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland
3   Berman Institute of Bioethics, Baltimore, Maryland
,
Cecilia Kwak
1   Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, Maryland
,
Renee D. Boss
1   Department of Pediatrics, Johns Hopkins School of Medicine, Baltimore, Maryland
3   Berman Institute of Bioethics, Baltimore, Maryland
› Author Affiliations Funding None.
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Abstract

Objective Parents of children with medical complexity experience substantial financial burdens. It is unclear how neonatal intensive care unit (NICU) clinicians prepare new parents of medically complex infants for this reality. This study explored new parent awareness of health care costs, desire to discuss costs with clinicians, and impact of costs on parents' medical decision-making.

Study Design The study design comprised semistructured interviews and surveys of parents of infants with medical complexity currently or previously in a NICU. Conventional content analysis was performed on interview transcripts, and descriptive analyses were applied to surveys.

Results Thematic saturation was reached with 27 families (15 NICU families and 12 post-NICU families) of diverse race/ethnicity/education/household income. Most were worried about their infants' current/future medical expenses and approximately half wanted to discuss finances with clinicians, only one parent had. While finances were not part of most parent's NICU decision-making, some later regretted this and wished cost had been incorporated into treatment choices. The family desire to discuss costs did not vary by family financial status. Parents described their infant's health care costs as: “We are drowning”; and “We'll never pay it off.”

Conclusion Most parents were worried about current and future medical expenses related to their infant's evolving medical complexity. Many wanted to discuss costs with clinicians; almost none had. NICU clinicians should prepare families for the future financial realities of pediatric medical complexity.

Key Points

  • Many families want to discuss costs with NICU clinicians.

  • Some families want costs to be a part of medical decisions.

  • Few families currently discuss costs with NICU providers.

Keywords

NICU - medical complexity - health care costs - family decision-making

Supplementary Material



Publication History

Received: 30 March 2022

Accepted: 01 September 2022

Accepted Manuscript online:
21 September 2022

Article published online:
21 December 2022

© 2022. Thieme. All rights reserved.

Thieme Medical Publishers, Inc.
333 Seventh Avenue, 18th Floor, New York, NY 10001, USA

 

  • References

  • 1 Dasta JF, McLaughlin TP, Mody SH, Piech CT. Daily cost of an intensive care unit day: the contribution of mechanical ventilation. Crit Care Med 2005; 33 (06) 1266-1271
    CrossrefPubMedGoogle Scholar
  • 2 Zupancic JAF, Richardson DK, O'Brien BJ, Schmidt B, Weinstein MC. Daily cost prediction model in neonatal intensive care. Int J Technol Assess Health Care 2003; 19 (02) 330-338
    CrossrefPubMedGoogle Scholar
  • 3 McLaurin KK, Hall CB, Jackson EA, Owens OV, Mahadevia PJ. Persistence of morbidity and cost differences between late-preterm and term infants during the first year of life. Pediatrics 2009; 123 (02) 653-659
    CrossrefPubMedGoogle Scholar
  • 4 Lakshmanan A, Agni M, Lieu T. et al. The impact of preterm birth <37 weeks on parents and families: a cross-sectional study in the 2 years after discharge from the neonatal intensive care unit. Health Qual Life Outcomes 2017; 15 (01) 38
    CrossrefPubMedGoogle Scholar
  • 5 McCormick MC, Bernbaum JC, Eisenberg JM, Kustra SL, Finnegan E. Costs incurred by parents of very low birth weight infants after the initial neonatal hospitalization. Pediatrics 1991; 88 (03) 533-541
    PubMedGoogle Scholar
  • 6 Underwood MA, Danielsen B, Gilbert WM. Cost, causes and rates of rehospitalization of preterm infants. J Perinatol 2007; 27 (10) 614-619
    CrossrefPubMedGoogle Scholar
  • 7 Petrou S, Yiu HH, Kwon J. Economic consequences of preterm birth: a systematic review of the recent literature (2009-2017). Arch Dis Child 2019; 104 (05) 456-465
    CrossrefPubMedGoogle Scholar
  • 8 Petrou S, Abangma G, Johnson S, Wolke D, Marlow N. Costs and health utilities associated with extremely preterm birth: evidence from the EPICure study. Value Health 2009; 12 (08) 1124-1134
    CrossrefPubMedGoogle Scholar
  • 9 Hodek JM, von der Schulenburg JM, Mittendorf T. Measuring economic consequences of preterm birth—methodological recommendations for the evaluation of personal burden on children and their caregivers. Health Econ Rev 2011; 1 (01) 6
    CrossrefPubMedGoogle Scholar
  • 10 Carter J, Dwyer N, Roselund J. et al. Systematic changes to help parentsof medically complex infants manage medical expenses. Adv Neonatal Care 2017; 17 (06) 461-469
    CrossrefPubMedGoogle Scholar
  • 11 Shapiro MC, Boss RD, Donohue PK. et al. A snapshot of chronic critical illness in pediatric intensive care units. J Pediatr Intensive Care 2021; (e-pub ahead of print) DOI: 10.1055/s-0041-1736334.
    Article in Thieme ConnectPubMedGoogle Scholar
  • 12 Schmitt J, Arnold K, Druschke D. et al. Early comprehensive care of preterm infants-effects on quality of life, childhood development, and healthcare utilization: study protocol for a cohort study linking administrative healthcare data with patient reported primary data. BMC Pediatr 2016; 16: 104
    CrossrefPubMedGoogle Scholar
  • 13 McAndrew S, Acharya K, Westerdahl J. et al. A prospective study of parent health-related quality of life before and after discharge from the neonatal intensive care unit. J Pediatr 2019; 213: 38-45.e3
    CrossrefPubMedGoogle Scholar
  • 14 Pritchard VE, Montgomery-Hönger A. A comparison of parent and staff perceptions of setting-specific and everyday stressors encountered by parents with very preterm infants experiencing neonatal intensive care. Early Hum Dev 2014; 90 (10) 549-555
    CrossrefPubMedGoogle Scholar
  • 15 Wright-Sexton LA, Compretta CE, Blackshear C, Henderson CM. Isolation in parents and providers of children with chronic critical illness. Pediatr Crit Care Med 2020; 21 (08) e530-e537
    CrossrefPubMedGoogle Scholar
  • 16 Boss RD, Raisanen JC, Detwiler K. et al. Lived experience of pediatric home health care among families of children with medical complexity. Clin Pediatr (Phila) 2020; 59 (02) 178-187
    CrossrefPubMedGoogle Scholar
  • 17 Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005; 15 (09) 1277-1288
    CrossrefPubMedGoogle Scholar
  • 18 Dedoose. Version, web application for managing, analyzing, and presenting qualitative and mixed method research data (2018). Los Angeles, CA: SocioCultural Research Consultants, LLC.
    PubMedGoogle Scholar
  • 19 Lindley LC, Mark BA. Children with special health care needs: impact of health care expenditures on family financial burden. J Child Fam Stud 2010; 19 (01) 79-89
    CrossrefPubMedGoogle Scholar
  • 20 Russell RB, Green NS, Steiner CA. et al. Cost of hospitalization for preterm and low birth weight infants in the United States. Pediatrics 2007; 120 (01) e1-e9
    CrossrefPubMedGoogle Scholar
  • 21 Fitch M, Longo CJ. Exploring the impact of out-of-pocket costs on the quality of life of Canadian cancer patients. J Psychosoc Oncol 2018; 36 (05) 582-596
    CrossrefPubMedGoogle Scholar
  • 22 Cohn RJ, Goodenough B, Foreman T, Suneson J. Hidden financial costs in treatment for childhood cancer: an Australian study of lifestyle implications for families absorbing out-of-pocket expenses. J Pediatr Hematol Oncol 2003; 25 (11) 854-863
    CrossrefPubMedGoogle Scholar
  • 23 Amorim M, Alves E, Kelly-Irving M, Ribeiro AI, Silva S. Quality of life of parents of very preterm infants 4 months after birth: a mixed methods study. Health Qual Life Outcomes 2018; 16 (01) 178
    CrossrefPubMedGoogle Scholar
  • 24 Tsimicalis A, Stevens B, Ungar WJ, Castro A, Greenberg M, Barr R. Shifting priorities for the survival of my child: managing expenses, increasing debt, and tapping into available resources to maintain the financial stability of the family. Cancer Nurs 2020; 43 (02) 147-157
    CrossrefPubMedGoogle Scholar
  • 25 Khan KA, Petrou S, Dritsaki M. et al. Economic costs associated with moderate and late preterm birth: a prospective population-based study. BJOG 2015; 122 (11) 1495-1505
    CrossrefPubMedGoogle Scholar
  • 26 Allen KM, Smith B, Iliev I, Evans J, Werthammer J. Short term cost of care for the surviving periviable neonate. J Neonatal Perinatal Med 2017; 10 (02) 191-194
    CrossrefPubMedGoogle Scholar
  • 27 Stephens AS, Lain SJ, Roberts CL, Bowen JR, Nassar N. Survival, hospitalization, and acute-care costs of very and moderate preterm infants in the first 6 years of life: a population-based study. J Pediatr 2016; 169: 61-8.e3
    CrossrefPubMedGoogle Scholar
  • 28 Keim-Malpass J, Constantoulakis L, Letzkus LC. Variability in states' coverage of children with medical complexity through home and community-based services waivers. Health Aff (Millwood) 2019; 38 (09) 1484-1490
    CrossrefPubMedGoogle Scholar
  • 29 Alexander GC, Casalino LP, Meltzer DO. Patient-physician communication about out-of-pocket costs. JAMA 2003; 290 (07) 953-958
    CrossrefPubMedGoogle Scholar
  • 30 Bassett HK, Beck J, Coller RJ. et al. Parent preferences for transparency of their child's hospitalization costs. JAMA Netw Open 2021; 4 (09) e2126083
    CrossrefPubMedGoogle Scholar
  • 31 Henrikson N. Communication with physicians about health care costs: survey of an insured population. permj [Internet]. 2017 [cited 2022 Feb 22]. Accessed October 7, 2022 at: http://www.thepermanentejournal.org/issues/2017/spring/6377-communication-with-physicians.html
    PubMedGoogle Scholar
  • 32 Bullock AJ, Hofstatter EW, Yushak ML, Buss MK. Understanding patients' attitudes toward communication about the cost of cancer care. J Oncol Pract 2012; 8 (04) e50-e58
    CrossrefPubMedGoogle Scholar
  • 33 Zafar SY, Chino F, Ubel PA. et al. The utility of cost discussions between patients with cancer and oncologists. Am J Manag Care 2015; 21 (09) 607-615
    PubMedGoogle Scholar
  • 34 Allshouse C, Comeau M, Rodgers R, Wells N. Families of children with medical complexity: a view from the front lines. Pediatrics 2018; 141 (Suppl 3): S195-S201
    CrossrefPubMedGoogle Scholar
  • 35 Caicedo C. Families with special needs children: family health, functioning, and care burden. J Am Psychiatr Nurses Assoc 2014; 20 (06) 398-407
    CrossrefPubMedGoogle Scholar
  • 36 Flessas T, Jackson E. Too expensive to treat? Non-treatment decisions at the margins of viability. Med Law Rev 2019; 27 (03) 461-481
    CrossrefPubMedGoogle Scholar
  • 37 Wilkinson D. Which newborn infants are too expensive to treat? Camosy and rationing in intensive care. J Med Ethics 2013; 39 (08) 502-506
    CrossrefPubMedGoogle Scholar
  • 38 Griswold KJ, Fanaroff JM. An evidence-based overview of prenatal consultation with a focus on infants born at the limits of viability. Pediatrics 2010; 125 (04) e931-e937
    CrossrefPubMedGoogle Scholar
  • 39 Zizzo N, Bell E, Racine E. What is everyday ethics? A review and a proposal for an integrative concept. J Clin Ethics 2016; 27 (02) 117-128
    CrossrefPubMedGoogle Scholar
  • 40 Sloan CE, Millo L, Gutterman S, Ubel PA. Accuracy of physician estimates of out-of-pocket costs for medication filling. JAMA Netw Open 2021; 4 (11) e2133188
    CrossrefPubMedGoogle Scholar
  • 41 Altomare I, Irwin B, Zafar SY. et al. Physician experience and attitudes toward addressing the cost of cancer care. J Oncol Pract 2016; 12 (03) e281-e288 , 247–248
    CrossrefPubMedGoogle Scholar
  • 42 Schrag D, Hanger M. Medical oncologists' views on communicating with patients about chemotherapy costs: a pilot survey. J Clin Oncol 2007; 25 (02) 233-237
    CrossrefPubMedGoogle Scholar
  • 43 Rock TA, Xiao R, Fieldston E. General pediatric attending physicians' and residents' knowledge of inpatient hospital finances. Pediatrics 2013; 131 (06) 1072-1080
    CrossrefPubMedGoogle Scholar
  • 44 Manja V, Monteiro S, You J, Guyatt G, Lakshminrusimha S, Jack SM. Incorporating content related to value and cost-considerations in clinical decision-making: enhancements to medical education. Adv Health Sci Educ Theory Pract 2019; 24 (04) 751-766
    CrossrefPubMedGoogle Scholar
  • 45 Natt N, Starr SR, Reed DA, Park YS, Dyrbye LN, Leep Hunderfund AN. High-value, cost-conscious communication skills in undergraduate medical education: validity evidence for scores derived from two standardized patient scenarios. Simul Healthc 2018; 13 (05) 316-323
    CrossrefPubMedGoogle Scholar
  • 46 Politi MC, Forcino RC, Parrish K, Durand MA, O'Malley AJ, Elwyn G. Cost talk: protocol for a stepped-wedge cluster randomized trial of an intervention helping patients and urologic surgeons discuss costs of care for slow-growing prostate cancer during shared decision-making. Trials 2021; 22 (01) 422
    CrossrefPubMedGoogle Scholar
  • 47 Espinoza Suarez NR, LaVecchia CM, Ponce OJ. et al. Using shared decision-making tools and patient-clinician conversations about costs. Mayo Clin Proc Innov Qual Outcomes 2020; 4 (04) 416-423
    CrossrefPubMedGoogle Scholar
  • 48 Carr DD. Building collaborative partnerships in critical care: the RN case manager/social work dyad in critical care. Prof Case Manag 2009; 14 (03) 121-132 , quiz 133–134
    CrossrefPubMedGoogle Scholar