Hostname: page-component-cd9895bd7-jkksz Total loading time: 0 Render date: 2024-12-22T23:32:32.290Z Has data issue: false hasContentIssue false
  • English
  • Français

State of the science and future research directions in palliative and end-of-life care in paediatric cardiology: a report from the Harvard Radcliffe Accelerator Workshop

Published online by Cambridge University Press:  24 June 2021

Melissa K. Cousino Open the ORCID record for Melissa K. Cousino [Opens in a new window] ,
Blyth T. Lord  and
Elizabeth D. Blume
Melissa K. Cousino*
Affiliation:
Department of Pediatrics, Michigan Medicine, Ann Arbor, MI, USA University of Michigan Congenital Heart Center, C.S. Mott Children’s Hospital, Ann Arbor, MI, USA
Blyth T. Lord
Affiliation:
Courageous Parents Network, Newton, MA, USA
Elizabeth D. Blume
Affiliation:
Department of Pediatrics, Harvard Medical School, Boston, MA, USA Heart Center at Boston Children’s Hospital, Boston, MA, USA
*
Author for correspondence: Melissa K. Cousino, PhD, Department of Pediatrics, Michigan Medicine, 1500 E. Medical Center Dr., Ann Arbor, MI 48109, USA. Tel: (734) 615-2577. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Workshop proceedings, priorities, and recommendations from the “State of the Science and Future Directions in Palliative and End-of-Life Care in Pediatric Cardiology,” a Harvard Radcliffe Accelerator Workshop, are detailed. Eight priorities for research were identified, including patient and family decision making, communication, patient and family experience, patient symptom measurement and management, training and curriculum development, teamwork, family hardships and bereavement, and ethical considerations. Barriers to research in this area were also identified: lack of outcome/measurement tools, lack of research funding, small population sizes, lack of effort/protected time for research, undervalued research topic by field and colleagues, and heterogeneous research participant diversity. Priorities and barriers were mostly consistent with those reported by the field of paediatric palliative care at large. These collective, consensus-based findings from diverse, multidisciplinary leaders in the field, as well as parent representatives, provide a catalyst for scientific advancement specific to paediatric and end-of-life care in paediatric cardiology.

Keywords

Palliative careend of lifepaediatric cardiologyresearch
Type
Original Article
Information
Cardiology in the Young , Volume 32 , Issue 3 , March 2022 , pp. 431 - 436
Check for updates
Copyright
© The Author(s), 2021. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Footnotes

*

The Harvard Radcliffe Accelerator Work Group included (in alphabetical order): Elizabeth D. Blume, MD; Kristin M. Burns, MD; Melissa K. Cousino, PhD; Janet Duncan, MSN, CPNP; Angela M. Feraco, MD, MMSc; Seth A. Hollander, MD; Dio Kavalieratos, PhD; Blyth T. Lord, EdM; Kate Middlemiss; Emily Morell, MD; Katie Moynihan, MBBS; Kerri Padgett; Nelangi M. Pinto, MD; Abby R. Rosenberg, MD, MS; Michelle Rybka, MD; Kurt R. Schumacher, MD, MS; Jill M. Steiner, MD, MS; Jennifer K. Walter, MD, PhD, MS.

References

Oster, ME, Lee, KA, Honein, MA, Riehle-Colarusso, T, Shin, M, Correa, A. Temporal trends in survival among infants with critical congenital heart defects. Pediatrics 2013; 131: e1502–e1508.10.1542/peds.2012-3435CrossRefGoogle ScholarPubMed
Rossano, JW, Kim, JJ, Decker, JA, et al. Prevalence, morbidity, and mortality of heart failure–related hospitalizations in children in the United States:a population-based study. J Card Fail 2012; 18: 459–470.10.1016/j.cardfail.2012.03.001CrossRefGoogle ScholarPubMed
Blume, ED, Balkin, EM, Aiyagari, R, et al. Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study. Pediatr Crit Care Med 2014; 15: 336–342.10.1097/PCC.0000000000000072CrossRefGoogle Scholar
Morell, E, Wolfe, J, Scheurer, M, et al. Patterns of care at end of life in children with advanced heart disease. Arch Pediatr Adolesc Med 2012; 166: 745–748.10.1001/archpediatrics.2011.1829CrossRefGoogle ScholarPubMed
Cousino, MK, Yu, S, Blume, E, et al. Circumstances surrounding end of life in pediatric heart transplant: a report from the pediatric heart transplant society. Circulation 2020; 142 (Suppl_3): A14806–A14806.10.1161/circ.142.suppl_3.14806CrossRefGoogle Scholar
Rossano, JW, Singh, TP, Cherikh, WS, et al. The International Thoracic Organ Transplant Registry of the International Society for Heart and Lung Transplantation: twenty-second pediatric heart transplantation report–2019; Focus theme: donor and recipient size match. J Heart Lung Transplant 2019; 38: 1028–1041.10.1016/j.healun.2019.08.002CrossRefGoogle ScholarPubMed
Miller, R, Tumin, D, Cooper, J, Hayes, D Jr., Tobias, JD. Prediction of mortality following pediatric heart transplant using machine learning algorithms. Pediatr Transplant 2019; 23: e13360.10.1111/petr.13360CrossRefGoogle ScholarPubMed
Rossano, JW, Cherikh, WS, Chambers, DC, et al. The Registry of the International Society for Heart and Lung Transplantation: twentieth pediatric heart transplantation report—2017; focus theme: allograft ischemic time. J Heart Lung Transplant 2017; 36: 1060–1069.10.1016/j.healun.2017.07.018CrossRefGoogle ScholarPubMed
Morell, E, Moynihan, K, Wolfe, J, Blume, ED. Palliative care and paediatric cardiology: current evidence and future directions. Lancet Child Adolesc Health 2019; 3: 502–510.10.1016/S2352-4642(19)30121-XCrossRefGoogle ScholarPubMed
Feudtner, C, Rosenberg, AR, Boss, RD, et al. Challenges and priorities for pediatric palliative care research in the US and similar practice settings: report from a pediatric palliative care research network workshop. J Pain Symptom Manage 2019; 58: 909–917. e903.10.1016/j.jpainsymman.2019.08.011CrossRefGoogle Scholar
Rosenberg, AR, Wolfe, J. Approaching the third decade of paediatric palliative oncology investigation: historical progress and future directions. Lancet Child Adolesc Health 2017; 1: 56–67.10.1016/S2352-4642(17)30014-7CrossRefGoogle ScholarPubMed
Cousino, MK, Miller, VA, Smith, C, et al. Medical and end-of-life decision making in adolescents’ pre-heart transplant: a descriptive pilot study. Palliative Med 2020; 34: 272–280.10.1177/0269216319874689CrossRefGoogle ScholarPubMed
Cousino, MK, Schumacher, KR, Magee, JC, et al. Communication about prognosis and end-of-life in pediatric organ failure and transplantation. Pediatr Transplant 2019; 23: e13373.10.1111/petr.13373CrossRefGoogle ScholarPubMed
Walter, JK, Schall, TE, DeWitt, AG, et al. Interprofessional team member communication patterns, teamwork, and collaboration in pre–family meeting huddles in a pediatric cardiac intensive care unit. J Pain Symptom Manage 2019; 58: 11–18.10.1016/j.jpainsymman.2019.04.009CrossRefGoogle Scholar
Walter, JK, Sachs, E, Schall, TE, et al. Interprofessional teamwork during family meetings in the pediatric cardiac intensive care unit. J Pain Symptom Manage 2019; 57: 1089–1098.10.1016/j.jpainsymman.2019.03.002CrossRefGoogle ScholarPubMed
Hilton-Kamm, D, Sklansky, M, Chang, R-K. How not to tell parents about their child’s new diagnosis of congenital heart disease: an internet survey of 841 parents. Pediatr Cardiol 2014; 35: 239–252.10.1007/s00246-013-0765-6CrossRefGoogle ScholarPubMed
Kovacevic, A, Simmelbauer, A, Starystach, S, et al. Counseling for prenatal congenital heart disease—recommendations based on empirical assessment of counseling success. Front Pediatr 2020; 8: 26.10.3389/fped.2020.00026CrossRefGoogle ScholarPubMed
Steiner, JM, Stout, K, Soine, L, Kirkpatrick, JN, Curtis, JR. Perspectives on advance care planning and palliative care among adults with congenital heart disease. Congenit Heart Dis 2019; 14: 403–409.10.1111/chd.12735CrossRefGoogle ScholarPubMed
Steiner, JM, Kirkpatrick, JN, Heckbert, SR, et al. Hospital resource utilization and presence of advance directives at the end of life for adults with congenital heart disease. Congenit Heart Dis 2018; 13: 721–727.10.1111/chd.12638CrossRefGoogle ScholarPubMed
Bratt, E-L, Järvholm, S, Ekman-Joelsson, B-M, Mattson, L-Å, Mellander, M. Parent’s experiences of counselling and their need for support following a prenatal diagnosis of congenital heart disease-a qualitative study in a Swedish context. BMC Pregnancy Childbirth 2015; 15: 1–7.10.1186/s12884-015-0610-4CrossRefGoogle Scholar
Machado, DS, Hollander, SA, Murray, J, Philip, J, Bleiweis, M, Kittelson, S. Ventricular assist device deactivation in children: preparedness planning and procedural checklist. J Heart Lung Transplant 2019; 38: 1116–1118.10.1016/j.healun.2019.06.013CrossRefGoogle ScholarPubMed
Kaufman, BD, Hollander, SA, Zhang, Y, et al. Compassionate deactivation of ventricular assist devices in children: A survey of pediatric ventricular assist device clinicians’ perspectives and practices. Pediatr Transplant 2019; 23: e13359.10.1111/petr.13359CrossRefGoogle ScholarPubMed
Kaltman, JR, Burns, KM, Pearson, GD. Perspective on congenital heart disease research. Circ Res 2017; 120: 898–900.10.1161/CIRCRESAHA.116.310334CrossRefGoogle ScholarPubMed
Moons, P, Luyckx, K, Thomet, C, et al. Patient-reported outcomes in adults with congenital heart disease following hospitalization (from APPROACH-IS). Am J Cardiol 2021; 145: 135–142.10.1016/j.amjcard.2020.12.088CrossRefGoogle Scholar
Pasquali, SK, Ravishankar, C, Romano, JC, et al. Design and initial results of a programme for routine standardised longitudinal follow-up after congenital heart surgery. Cardiol Young 2016; 26: 1590–1596.10.1017/S1047951116001669CrossRefGoogle ScholarPubMed
Marino, BS, Sood, E, Cassidy, AR, et al. The origins and development of the cardiac neurodevelopment outcome collaborative: creating innovative clinical, quality improvement, and research opportunities. Cardiol Young 2020; 30: 1597–1602.10.1017/S1047951120003510CrossRefGoogle ScholarPubMed
Lorts, A, Smyth, L, Gajarski, RJ, et al. The creation of a pediatric health care learning network: the ACTION quality improvement collaborative. ASAIO J 2020; 66: 441–446.10.1097/MAT.0000000000001133CrossRefGoogle ScholarPubMed
Gaies, M, Anderson, J, Kipps, A, et al. Cardiac networks united: an integrated paediatric and congenital cardiovascular research and improvement network. Cardiol Young 2019; 29: 111–118.10.1017/S1047951118001683CrossRefGoogle ScholarPubMed
Martin, GR, Anderson, JB, Vincent, RN. Impact registry and national pediatric cardiology quality improvement collaborative: contributions to quality in congenital heart disease. World J Pediatr Congenit Heart Surg 2019; 10: 72–80.10.1177/2150135118815059CrossRefGoogle ScholarPubMed
Pickles, D, Lannon, C, Wooton, S, et al. The future is now for transforming outcomes nationally: the Fontan outcomes network. Prog Pediatr Cardiol 2020; 59: 101302.10.1016/j.ppedcard.2020.101302CrossRefGoogle Scholar
Rosenberg, AR, Yi-Frazier, JP, Eaton, L, et al. Promoting resilience in stress management: a pilot study of a novel resilience-promoting intervention for adolescents and young adults with serious illness. J Pediatr Psychol 2015; 40: 992–999.10.1093/jpepsy/jsv004CrossRefGoogle Scholar
Rosenberg, AR, Bradford, MC, McCauley, E, et al. Promoting resilience in adolescents and young adults with cancer: results from the PRISM randomized controlled trial. Cancer 2018; 124: 3909–3917.10.1002/cncr.31666CrossRefGoogle Scholar
Rogers, JG, Patel, CB, Mentz, RJ, et al. Palliative care in heart failure: the PAL-HF randomized, controlled clinical trial. J Am Coll Cardiol 2017; 70: 331–341.10.1016/j.jacc.2017.05.030CrossRefGoogle ScholarPubMed
Kavalieratos, D, Gelfman, LP, Tycon, LE, et al. Palliative care in heart failure. J Am Coll Cardiol 2017; 70: 1919–1930.10.1016/j.jacc.2017.08.036CrossRefGoogle ScholarPubMed
Friedel, M, Aujoulat, I, Dubois, A-C, Degryse, J-M. Instruments to measure outcomes in pediatric palliative care: a systematic review. Pediatrics 2019; 143: e20182379.10.1542/peds.2018-2379CrossRefGoogle ScholarPubMed
Almond, CS, Chen, S, Dykes, JC, et al. The Stanford acute heart failure symptom score for patients hospitalized with heart failure. J Heart Lung Transplant 2020; 39: 1250–1259.10.1016/j.healun.2020.08.002CrossRefGoogle ScholarPubMed
Gelfman, LP, Kavalieratos, D, Teuteberg, WG, Lala, A, Goldstein, NE. Primary palliative care for heart failure: what is it? How do we implement it? Heart Fail Rev 2017; 22: 611–620.10.1007/s10741-017-9604-9CrossRefGoogle Scholar
Balkin, EM, Kirkpatrick, JN, Kaufman, B, et al. Pediatric cardiology provider attitudes about palliative care: a multicenter survey study. Pediatric Cardiol 2017; 38: 1324–1331.10.1007/s00246-017-1663-0CrossRefGoogle ScholarPubMed
Moynihan, KM, Snaman, JM, Kaye, EC, et al. Integration of pediatric palliative care into cardiac intensive care: a champion-based model. Pediatrics 2019; 144: e20190160.10.1542/peds.2019-0160CrossRefGoogle ScholarPubMed
Balkin, EM, Sleeper, LA, Kirkpatrick, JN, et al. Physician perspectives on palliative care for children with advanced heart disease: a comparison between pediatric cardiology and palliative care physicians. J Palliative Med 2018; 21: 773–779.10.1089/jpm.2017.0612CrossRefGoogle ScholarPubMed
Char, D, Hollander, SA. The decision to withdraw in children with ventricular assist devices. Am J Bioethics: AJOB 2019; 19: 61–62.10.1080/15265161.2018.1563655CrossRefGoogle ScholarPubMed
Good, M, McElroy, SJ, Berger, JN, Wynn, JL. Name and characteristics of National Institutes of Health R01-funded pediatric physician-scientists: hope and challenges for the vanishing pediatric physician-scientists. JAMA Pediatr 2018; 172: 297–299.10.1001/jamapediatrics.2017.4947CrossRefGoogle ScholarPubMed
Schumacher, KR, Stringer, KA, Donohue, JE, et al. Social media methods for studying rare diseases. Pediatrics 2014; 133: e1345–e1353.10.1542/peds.2013-2966CrossRefGoogle ScholarPubMed
Schumacher, KR, Lee, JM. Harnessing social media for child health research: pediatric research 2.0. JAMA Pediatr 2016; 170: 5–6.10.1001/jamapediatrics.2015.2696CrossRefGoogle ScholarPubMed
Sood, E, Wysocki, T, Alderfer, MA, et al. Topical review: crowdsourcing as a novel approach to qualitative research. J Pediatr Psychol 2020; 2: 189–196.Google Scholar