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The REACH protocol: an innovative strategy for home management of infants with complex CHD

  • Desiree A. Fleck (a1) (a2), Bradley S. Marino (a3), John M. Costello (a3), Chitra Ravishankar (a2), Deborah Torowicz (a2), Carrie Alden (a3), Kathleen Van’t Hof (a3) and Barbara Medoff-Cooper (a1) (a2)...

Abstract

Approximately 32,000 infants are born with CHDs each year in the United States of America. Of every 1000 live births, 2.3 require surgical or transcatheter intervention in the first year of life. There are few more stressful times for parents than when their neonate receives a diagnosis of complex CHD requiring surgery. The stress of caring for these infants is often unrelenting and may last for weeks, months, and often years, placing parents at risk for developing post-traumatic stress disorder, as well as a drastic decrease in quality of life. Anxiety often peaks in the days and weeks after discharge from the hospital as families no longer have immediate access to nursing and medical staff. The purpose of this paper is to describe the methods of a randomised controlled trial that was designed to determine whether REACH would favourably affect parental and infant outcomes by decreasing parental stress, improve parental quality of life, increase infant stability, and decrease resource utilisation in infants with complex CHD.

Copyright

Corresponding author

Author for correspondence: D. Fleck, PhD, ACNP-BC, CPNP-AC, School of Nursing, Family and Community Health, Claire M Fagin Hall, 418 Curie Boulevard, Room 481, Philadelphia, PA 19104-4217, USA. Tel: 215 833 5584; Fax: 215 898 3056; E-mail: desiree.fleck@gmail.com

References

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1. Hoffman, JL, Kaplan, S. The incidence of congenital heart disease. J Am Coll Cardiol 2002; 39: 18901900.
2. Gillum, RF. Epidemiology of congenital heart disease in the United States. Am Heart J 1994; 127 (Pt 1): 919927.
3. Melnyk, BM, Alpert-Gillis, L, Feinstein, NF, et al. Creating opportunities for parent empowerment: program effects on the mental health/coping outcomes of critically ill young children and their mothers. Pediatrics 2004; 113: e597e607.
4. Manne, SL, Du Hamel, K, Gallelli, K, Sorgen, K, Redd, WH. Posttraumatic stress disorder among mothers of pediatric cancer survivors: diagnosis, comorbidity, and utility of the PTSD checklist as a screening instrument. J Pediatr Psychol 1998; 23: 357366.
5. Morgan, GJ, Craig, B, Grant, B, Sands, A, Doherty, N, Casey, F. Home videoconferencing for patients with severe congenital heart disease following discharge. Congenit Heart Dis 2008; 3: 317324.
6. Vilhjalmsson, R., Kristjansdottir, G. Sociodemographic variables in parental role strain: Results from a national general population survey. Scand J of Pub Health 2006; 34: 262271.
7. Visconti, KJ, Saudino, KJ, Rappaport, LA, Newberger, JW, Bellinger, DC. Influence of parental stress and social support on the behavioral adjustment of children with transposition of the great arteries. Dev Behav Pediatr 2002; 23: 314321.
8. Breslau, N, Staruch, KS, Mortimer, EA Jr. Psychological distress in mothers of disabled children. Am J Dis Child 1982; 136: 682686.
9. Hintermair, M. Children who are hearing impaired with additional disabilities and related aspects of parental stress. Exceptional Child 2000; 66: 327334.
10. Hartman, D, Medoff-Cooper, B. Transition to home after neonatal surgery for congenital heart disease. MCN Am J Matern Child Nurs 2012; 37: 95100.
11. Ghanayem, NS, Cava, JR, Jaquiss, RD, Tweddell, JS. . Home monitoring of infants after stage one palliation for hypoplastic left heart syndrome. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2004; 7: 3238.
12. Tregay, J, Brown, KL, Crowe, S, et al. Signs of deterioration infants discharged home following congenital heart surgery in the first year of life: a qualitative study. Arch Dis Child 2016; 101: 902908.
13. Anderson, JB, Marino, BS, Irving, SY, et al. Poor post-operative growth in infants with two-ventricle physiology. Cardiol Young 2011; 21: 421429.
14. Ghanayem, NS, Hoffman, GM, Mussatto, KA, et al. Home surveillance program prevents interstage mortality after the Norwood procedure. J Thorac Cardiovasc Surg 2003; 126: 13671377.
15. Carlo, WF, Cnota, J, Dabal, RJ, Anderson, JB. Practice trends overtime in the care of infants with hypoplastic left heart syndrome: a report from the national Pediatric Cardiology Quality Improvement Collaborative. Congenit Heart Dis 2017; 12: 315321.
16. Ugonabo, N, Hirsch-Romano, JC, Uzark, K. The role of home monitoring in interstage management of infants following the Norwood procedure. World J Pediatr Congenit Heart Surg 2015; 6: 266273.
17. Nieves, JA, Uzark, K, Rudd, NA, Starwn, J, Schmelzer, A, Dobrolet, N. Interstage home monitoring after newborn first-stage palliation for hypoplastic left heart syndrome: family education strategies. Crit Care Nurse, 37: 7288.
18. Weston, C, Adil Husain, S, Curzon, CL, et al. Improving outcomes for infants with single ventricle physiology through standardized feeding during the interstage. Nurs Res Pract, 2016; Article ID 9505629, 7 pages.
19. Rudd, N, Fommelt, MA, Hehir, DA, Slicker, JA, Mussatto, KA, Ghanayem, NS. Improving interstage survival after Norwood operation: outcomes following 10 years of home monitoring. J Thorac Cardiovasc Surg 2014; 148: 15401547.
20. Harahshesh, AS, Hom, LA, Clauss, SB, et al. The impact of a designated cardiology team involving telemedicine home monitoring on the care of children with single-ventricle physiology after Norwood palliation. Pediatr Cardiol 2016; 37: 899912.
21. Petit, CJ, Fraser, CD, Mattamal, R, Slesnick, TC, Cephus, CE, Ocampo, EC. The impact of a dedicated single-ventricle home-monitoring program on interstage somatic growth, interstage attrition, and 1-year survival. J Thorac Cardiovasc Surg, 142: 13581366.
22. Stoffel, G, Spirig, R, Stiasny, B, Bernet, V, Dave, H, Knirsch, W. Psychosocial impact on families with an infant with a hypoplastic left heart syndrome during and after the interstage monitoring period – a prospective mixed-method study. J Clin Nurs 2016; 26: 33633370.
23. Grabowski, DC, O’Malley, AJ. Use of telemedicine can reduce hospitalizations of nursing home residents and generate savings for Medicare. Health Aff 2014; 33: 244250.
24. Thomas, CL, Man, MS, O’Cathain, A. Effectiveness and cost-effectiveness of a telehealth intervention to support the management of long term conditions: study protocol for two linked randomized controlled trials. Trials 2014; 24: 1536.
25. Tappenden, P, Campbell, F, Rawdin, A, Wong, R, Kalita, N. The clinical effectiveness and cost-effectiveness of home-based, nurse led health promotion for older people: a systematic review. Health Technol Assess 2012; 16: 172.
26. McCrossan, B, Morgan, G, Grant, B, Sands, A, Craig, B, Casey, F. Assisting the transition from hospital to home for children with major congenital heart disease by telemedicine: a feasibility study and initial results. Medical Informatics & the Internet in Medicine 2007; 232: 97304.
27. Bowles, KH, Holland, DE, Horowitz, DA. A comparison of in-person home care, home care with telephone contact and home care with telemonitoring for disease management. J Telemed Telecare 2009; 15: 344350.
28. Dehghani, P, Atallah, J, Rebeyka, I, et al. Management of adults with congenital heart disease using videoconferencing across Western Canada: a 3-year experience. Can J Cardiol 2013; 29: 873878.
29. Adriaanse, BM, Tromp, CH, Simpson, JM, et al. Interobserver agreement in detailed prenatal diagnosis of congenital heart disease by telemedicine using four-dimensional ultrasound with spatiotemporal image correlation. Ultrasound Obstet Gynecol 2012; 39: 203209.
30. de Jongh, T, Gurol-Urganci, I, Vodopivec-Jamsek, V, Car, J, Atun, R. Mobile phone messaging for facilitating self-management of long-term illnesses. Cochrane Database Syst Rev 2012; 12: CD007459.
31. Grant, B, Morgan, GJ, McCrossan, BA, et al. Remote diagnosis of congenital heart disease: the impact of telemedicine. Arch Dis Child 2009; 95: 276280.
32. Black, AK, Sadanala, UK, Mascio, CE, Hornung, CA, Keller, BB. Challenges in implementing a pediatric cardiovascular home Telehealth project. Telemed e-Health 2014; 20: 858867.
33. Cross, R., Steury, R, Randall, A, Fuska, M, Sable, C. Single-ventricle palliation for high-risk neonates: examining the feasibility of an automated home monitoring system after Stage 1 palliation. Future Cardiol 2012; 8: 227235.
34. Abiden, R. Parenting Stress Index Long Form: Test Manual. Western Psychological Services, Los Angeles, 1990.
35. Goldbeck, L, Melches, J. Quality of life in families of children with congenital heart disease. Qual Life Res 2005; 14: 19151924.
36. Vaglio, J Jr., Conard, M, Poston, WS, et al. Testing the performance of the ENRICHD Social Support Instrument in cardiac patients. Health Qual Life Outcomes 2004; 2: 24.
37. Medoff-Cooper, B, Carey, WB, McDevitt, SC. The early infancy temperament questionnaire. J Dev Behav Pediatr 1993; 14: 230235.
38. Wright, CM, Parkinson, KN, Drewett, RF. How does maternal and child feeding behavior relate to weight gain and failure to thrive? Data from a prospective birth cohort. Pediatrics 2006; 117: 12621269.
39. Beller, E, Gebski, V, Keech, A. Randomization in clinical trials. Med J Aust 2002; 177: 565568.
40. Selvin, S. Statistical Analysis of Epidemiologic Data, 3rd edn. Oxford University Press, Oxford, 2004.
41. Greene, W. Econometric Analysis, 6th edn. Prentice Hall, Upper Saddle River, NJ, 2008.

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