Hostname: page-component-848d4c4894-ttngx Total loading time: 0 Render date: 2024-05-14T07:58:56.834Z Has data issue: false hasContentIssue false
  • English
  • Français

Patient and parent-reported outcomes in paediatric ventricular assist device support: a multi-center ACTION learning network feasibility and pilot experience

Published online by Cambridge University Press:  19 January 2023

Melissa K. Cousino Open the ORCID record for Melissa K. Cousino [Opens in a new window] ,
Lindsay J. May Open the ORCID record for Lindsay J. May [Opens in a new window] ,
Lauren Smyth ,
Melissa McQueen ,
Katherine Thompson ,
Tiffany Hunter ,
Courtney Ventresco ,
Katrina Fields ,
Jenna Murray  and
Desiree S. Machado
...Show all authors
Melissa K. Cousino
Affiliation:
Department of Pediatrics, University of Michigan, C.S. Mott Children’s Hospital, Ann Arbor, MI, USA
Lindsay J. May*
Affiliation:
Department of Pediatrics, Primary Children’s Hospital, Salt Lake City, UT, USA
Lauren Smyth
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Melissa McQueen
Affiliation:
Phoenix Children’s Hospital, Phoenix, AZ, USA
Katherine Thompson
Affiliation:
Department of Pediatrics, Primary Children’s Hospital, Salt Lake City, UT, USA
Tiffany Hunter
Affiliation:
Department of Pediatrics, University of Michigan, C.S. Mott Children’s Hospital, Ann Arbor, MI, USA
Courtney Ventresco
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
Katrina Fields
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Jenna Murray
Affiliation:
Department of Pediatrics, Stanford University, Palo Alto, CA, USA
Desiree S. Machado
Affiliation:
Department of Pediatric Cardiac Critical Care, Congenital Heart Center, University of Florida, Gainesville, FL, USA
Muhammad Shezad
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Farhan Zafar
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
David N. Rosenthal
Affiliation:
Department of Pediatrics, Stanford University, Palo Alto, CA, USA
Angela Lorts
Affiliation:
The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Elizabeth D. Blume
Affiliation:
Department of Cardiology, Boston Children’s Hospital, Boston, MA, USA
*
Author for correspondence: Dr L. J. May, Department of Pediatrics, Primary Children’s Hospital, 100 N Mario Capecchi Drive, Salt Lake City, UT 84113, USA. Tel: 801-213-7613; Fax: 801-213-7778. E-mail: Lindsay.may@hsc.utah.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

Background:

Patient- and proxy-reported outcomes (PROs) are an important indicator of healthcare quality and can be used to inform treatment. Despite the widescale use of PROs in adult cardiology, they are underutilised in paediatric cardiac care. This study describes a six-center feasibility and pilot experience implementing PROs in the paediatric and young adult ventricular assist device population.

Methods:

The Advanced Cardiac Therapies Improving Outcomes Network (ACTION) is a collaborative learning network comprised of 55 centres focused on improving clinical outcomes and the patient/family experience for children with heart failure and those supported by ventricular assist devices. The development of ACTION’s PRO programme via engagement with patient and parent stakeholders is described. Pilot feasibility, patient/parent and clinician feedback, and initial PRO findings of patients and families receiving paediatric ventricular assist support across six centres are detailed.

Results:

Thirty of the thirty-five eligible patients (85.7%) were enrolled in the PRO programme during the pilot study period. Clinicians and participating patients/parents reported positive experiences with the PRO pilot programme. The most common symptoms reported by patients/parents in the first month post-implant period included limitations in activities, dressing change distress, and post-operative pain. Poor sleep, dressing change distress, sadness, and fatigue were the most common symptoms endorsed >30 days post-implant. Parental sadness and worry were notable throughout the entirety of the post-implant experience.

Conclusions:

This multi-center ACTION learning network-based PRO programme demonstrated initial success in this six-center pilot study experience and yields important next steps for larger-scale PRO collection, research, and clinical intervention.

Keywords

Patient-reported outcomesventricular assist deviceheart failure
Type
Original Article
Information
Cardiology in the Young , Volume 33 , Issue 11 , November 2023 , pp. 2258 - 2266
Check for updates
Copyright
© The Author(s), 2023. 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

Melissa K. Cousino and Lindsay J. May contributed equally to the manuscript.

References

Uzark, K, Jones, K, Burwinkle, TM, Varni, JW. The Pediatric Quality of Life InventoryTM in children with heart disease. Prog Pediatr Cardiol 2003; 18: 141–149.CrossRefGoogle Scholar
Pyngottu, A, Werner, H, Lehmann, P, Balmer, C. Health-related quality of life and psychological adjustment of children and adolescents with pacemakers and implantable cardioverter defibrillators: a systematic review. Pediatr Cardiol 2019; 40: 1–16.CrossRefGoogle ScholarPubMed
Marshall, KH, D'Udekem, Y, Sholler, GF, et al. Health-related quality of life in children, adolescents, and adults with a fontan circulation: a meta-analysis. J Am Heart Assoc 2020; 9: e014172.CrossRefGoogle ScholarPubMed
Bevans, KB, Moon, J, Carle, AC, et al. Patient reported outcomes as indicators of pediatric health care quality. Acad Pediatr 2014; 14: S90–S96.10.1016/j.acap.2014.06.002CrossRefGoogle ScholarPubMed
Rumsfeld, JS, Alexander, KP, Goff, DC Jr, et al. Cardiovascular health: the importance of measuring patient-reported health status: a scientific statement from the American Heart Association. Circulation 2013; 127: 2233–2249.CrossRefGoogle ScholarPubMed
Sepehrvand, N, Savu, A, Spertus, JA, et al. Change of health-related quality of life over time and its association with patient outcomes in patients with heart failure. J Am Heart Assoc 2020; 9: e017278.10.1161/JAHA.120.017278CrossRefGoogle ScholarPubMed
Greene, SJ, Butler, J, Spertus, JA, et al. Comparison of New York Heart Association class and patient-reported outcomes for heart failure with reduced ejection fraction. JAMA Cardiol 2021; 6: 522–531.10.1001/jamacardio.2021.0372CrossRefGoogle ScholarPubMed
Moons, P, Luyckx, K, Kovacs, AH. Patient-reported outcomes in adults with congenital heart disease: what have we learned from APPROACH-IS? Int J Cardiol Congenit Heart Dis 2021; 2: 100074.10.1016/j.ijcchd.2020.100074CrossRefGoogle 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.CrossRefGoogle ScholarPubMed
O’Connor, MJ, Lorts, A, Kwiatkowski, D, et al. Learning networks in pediatric heart failure and transplantation. Pediatr Transplant 2021; 25: e14073.CrossRefGoogle ScholarPubMed
Olsen, L, Aisner, D, McGinnis, JM. New approaches—learning systems in progress. In The Learning Healthcare System: Workshop Summary, 2007.Google Scholar
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 Scholar
Varni, JW, Burwinkle, TM, Seid, M, Skarr, D. The PedsQLTM* 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr 2003; 3: 329–341.10.1367/1539-4409(2003)003<0329:TPAAPP>2.0.CO;22.0.CO;2>CrossRefGoogle Scholar
Forrest, CB, Bevans, KB, Tucker, C, et al. Commentary: the patient-reported outcome measurement information system (PROMIS®) for children and youth: application to pediatric psychology. J Pediatr Psychol 2012; 37: 614–621.CrossRefGoogle ScholarPubMed
Anker, SD, Agewall, S, Borggrefe, M, et al. The importance of patient-reported outcomes: a call for their comprehensive integration in cardiovascular clinical trials. Eur Heart J 2014; 35: 2001–2009.CrossRefGoogle Scholar
McIlvennan, CK, Magid, KH, Ambardekar, AV, Thompson, JS, Matlock, DD, Allen, LA. Clinical outcomes after continuous-flow left ventricular assist device: a systematic review. Circ Heart Fail 2014; 7: 1003–1013.10.1161/CIRCHEARTFAILURE.114.001391CrossRefGoogle ScholarPubMed
White-Williams, C, Fazeli, P, Kirklin, J, Pamboukian, S, Grady, K. Health-related quality of life differs by pre-operative implant strategy from before through mid-term after surgery: findings from INTERMACS. J Heart Lung Transplant 2020; 39: S208.CrossRefGoogle Scholar
Hawkins, B, Priest, M, Murray, J, et al. Obstacles to acquiring quality of life assessments for pediatric ventricular assist device support: perspectives from VAD coordinators. J Heart Lung Transplant 2017; 36: S357.CrossRefGoogle Scholar
Molloy, MA, DeWitt, ES, Morell, E, et al. Parent-reported symptoms and perceived effectiveness of treatment in children hospitalized with advanced heart disease. J Pediatr 2021; 238: 221–227.e221.CrossRefGoogle ScholarPubMed
Birnie, KA, Noel, M, Chambers, CT, Uman, LS, Parker, JA. Psychological interventions for needle-related procedural pain and distress in children and adolescents. Cochrane Database Syst Rev 2018; 10: CD005179.Google ScholarPubMed
Scheffler, M, Koranyi, S, Meissner, W, Strauss, B, Rosendahl, J. Efficacy of non-pharmacological interventions for procedural pain relief in adults undergoing burn wound care: a systematic review and meta-analysis of randomized controlled trials. Burns 2018; 44: 1709–1720.CrossRefGoogle Scholar
Rea, KE, McCormick, AM, Lim, HM, Cousino, MK. Psychosocial outcomes in pediatric patients with ventricular assist devices and their families: a systematic review. Pediatr Transplant 2021; 25: e14001.CrossRefGoogle ScholarPubMed
Diaz, I, Thurm, C, Hall, M, et al. Disorders of adjustment, mood, and anxiety in children and adolescents undergoing heart transplantation and the association of ventricular assist device support. J Pediatr 2020; 217: 20–24.e21.10.1016/j.jpeds.2019.10.022CrossRefGoogle ScholarPubMed
Ozbaran, B, Kose, S, Yagdi, T, et al. Psychiatric evaluation of children and adolescents with left ventricular assist devices. Psychosom Med 2012; 74: 554–558.CrossRefGoogle ScholarPubMed
Lorts, A, Conway, J, Schweiger, M, et al. ISHLT consensus statement for the selection and management of pediatric and congenital heart disease patients on ventricular assist devices Endorsed by the American Heart Association. J Heart Lung Transplant 2021; 40: 709–732.10.1016/j.healun.2021.04.015CrossRefGoogle ScholarPubMed
Cousino, MK, Rea, KE, Schumacher, KR, Magee, JC, Fredericks, EM. A systematic review of parent and family functioning in pediatric solid organ transplant populations. Pediatr Transplant 2017; 21: e12900.10.1111/petr.12900CrossRefGoogle ScholarPubMed
Leeman, J, Crandell, JL, Lee, A, Bai, J, Sandelowski, M, Knafl, K. Family functioning and the well-being of children with chronic conditions: a meta-analysis. Research Nurs Health 2016; 39: 229–243.CrossRefGoogle ScholarPubMed
Cousino, MK, Pasquali, SK, Romano, JC, et al. Impact of the COVID-19 pandemic on CHD care and emotional wellbeing. Cardiol Young 2021; 31: 822–828.CrossRefGoogle ScholarPubMed
Supplementary material: PDF

Cousino et al. supplementary material

Cousino et al. supplementary material 1

Download Cousino et al. supplementary material(PDF)
PDF 87.5 KB
Supplementary material: PDF

Cousino et al. supplementary material

Cousino et al. supplementary material 2

Download Cousino et al. supplementary material(PDF)
PDF 225.5 KB
Supplementary material: PDF

Cousino et al. supplementary material

Cousino et al. supplementary material 3

Download Cousino et al. supplementary material(PDF)
PDF 111.6 KB
Supplementary material: PDF

Cousino et al. supplementary material

Cousino et al. supplementary material 4

Download Cousino et al. supplementary material(PDF)
PDF 258.8 KB