Involving patients, families and medical staff in the evaluation of 3D printing models of congenital heart disease

Authors

  • Giovanni Biglino Centre for Cardiovascular Imaging UCL Institute of Cardiovascular Science & Great Ormond Street Hospital for Children
  • Claudio Capelli Centre for Cardiovascular Imaging UCL Institute of Cardiovascular Science & Great Ormond Street Hospital for Children
  • Lindsay-Kay Leaver Great Ormond Street Hospital for Children
  • Silvia Schievano Centre for Cardiovascular Imaging UCL Institute of Cardiovascular Science & Great Ormond Street Hospital for Children
  • Andrew M. Taylor Centre for Cardiovascular Imaging UCL Institute of Cardiovascular Science & Great Ormond Street Hospital for Children
  • Jo Wray Great Ormond Street Hospital for Children

DOI:

https://doi.org/10.1558/cam.28455

Keywords:

congenital heart disease, patient and public involvement, personalised medicine, rapid prototyping

Abstract

Objective: To evaluate the usefulness of 3D printing patient-specific models of congenital heart disease (CHD) from the perspective of different stakeholders potentially benefiting from the technology (patients, parents, clinicians and nurses). Methods: Workshops, focus groups and teaching sessions were organized, each targeting a different group of stakeholders. Sessions involved displaying and discussing different 3D models of CHD. Model evaluation involved questionnaires, audio-recorded discussions and written feedback. Results: All stakeholders expressed a liking for the 3D models and for the patient-specific quality of such models. Patients indicated that 3D models can help them imagine “what’s going on inside” and parents agreed that these tools can spark curiosity in the young people. Clinicians indicated that teaching might be the most relevant application of such novel technology and nurses agreed that 3D models improved their learning experience during a course focused on CHD. Conclusion: The successful engagement of different stakeholders to evaluate 3D printing technology for CHD identified different priorities, highlighting the importance of eliciting the views of different groups. Practice Implications: A PPI-based approach in the evaluation and translation of 3D printing technology may increase patient empowerment, improve patient-doctor communication and provide better access to a new teaching and training tool.

Author Biographies

  • Giovanni Biglino, Centre for Cardiovascular Imaging UCL Institute of Cardiovascular Science & Great Ormond Street Hospital for Children
    Giovanni Biglino studied bioengineering at Imperial College London. He has a PhD in cardiovascular mechanics from Brunel Institute of Bioengineering and a diploma in biostatistics from Harvard Medical School. He is currently working at University College London on modelling of congenital heart disease as part of a fellowship with the National Institute of Health Research (NIHR).
  • Claudio Capelli, Centre for Cardiovascular Imaging UCL Institute of Cardiovascular Science & Great Ormond Street Hospital for Children
    Claudio Capelli graduated in biomedical engineering from Politecnico di Milano and gained his PhD from University College London. His research interests involve patient-specific computational simulations, 3D modelling from medical imaging and structural simulation for studying medical devices.
  • Lindsay-Kay Leaver, Great Ormond Street Hospital for Children
    Lindsay-Kay Leaver is the Adolescent Nurse Specialist at Great Ormond Street Hospital. Her research focuses on loss to follow-up. She runs workshops with patients and liaises with charities and organisations to support patients’ development into independent individuals.
  • Silvia Schievano, Centre for Cardiovascular Imaging UCL Institute of Cardiovascular Science & Great Ormond Street Hospital for Children
    Silvia Schievano is a Senior Lecturer in Biomedical Engineering at University College London. Her main research interest is patient-specific modelling for cardiovascular applications (particularly cardiovascular devices) and for craniofacial modelling. She pioneered the use of 3D printing for testing devices during the development of the Melody Valve (Medtronic®), a percutaneous pulmonary device.
  • Andrew M. Taylor, Centre for Cardiovascular Imaging UCL Institute of Cardiovascular Science & Great Ormond Street Hospital for Children
    Andrew M. Taylor is a Professor of Cardiovascular Imaging at the UCL Institute of Cardiovascular Science, and Divisional Director and Cardiac Academic Lead of Cardiorespiratory Services at Great Ormond Street Hospital for Children.
  • Jo Wray, Great Ormond Street Hospital for Children
    Jo Wray is a Health Psychologist and a Senior Research Fellow at Great Ormond Street Hospital. Her PhD research focused on the psychological impact of congenital heart disease and cardiac surgery for children and families. She has worked with paediatric transplant patients and leads on psychosocial research and patient-reported outcomes and experiences in the Critical Care and Cardiorespiratory Division at Great Ormond Street Hospital.

References

Aldiss, S., Taylor, R. M., Soanes, L., Maguire, R., Sage, M., Kearney, N. and Gibson, F. (2010) Working in collaboration with young people and health professionals: A staged approach to the implementation of a randomised controlled trial. Journal of Research in Nursing 16 (6): 561–576. http://dx.doi.org/10.1177/1744987110380803


Biglino, G., Capelli, C., Wray, J., Schievano, S., Leaver, L. K., Khambadkone, S., Giardini, A., Derrick, G., Jones, A. and Taylor, A. M. (2015) 3D-manufactured patient-specific models of congenital heart defects for communication in clinical practice: Feasibility and acceptability. BMJ Open 5 (4): e007165. http://dx.doi.org/10.1136/bmjopen-2014-007165


Biglino, G., Schievano, S. and Taylor, A. M. (2011) The use of rapid prototyping in clinical applications. In M. E. Hoque (ed.) Advanced Applications of Rapid Prototyping Technology in Modern Engineering. Rijeka, Croatia: InTech. http://dx.doi.org/10.5772/24128


Biglino, G., Verschueren, P., Zegels, R., Taylor, A. M. and Schievano, S. (2013) Rapid prototyping compliant arterial phantoms for in-vitro studies and device testing. Journal of Cardiovascular Magnetic Resonance 15 (2). Retrieved from https://jcmr-online.biomedcentral.com/articles/10.1186/1532-429X-15-2


Boote, J., Baird, W. and Beecroft, C. (2010) Public involvement at the design stage of primary health research: A narrative review of case examples. Health Policy 95 (1): 10–23. http://dx.doi.org/10.1016/j.healthpol.2009.11.007


Brett, J., Staniszewska, S., Mockford, C., Herron-Marx, S., Hughes, J., Tysall, C. and Suleman, R. (2014) A systematic review of the impact of patient and public involvement on service users, researchers and communities. The Patient 7 (4): 387–395. http://dx.doi.org/10.1007/s40271-014-0065-0


Chiang, Y. T., Chen, C. W., Su, W. J., Wang, J. K., Lu, C. W., Li, Y. F. and Moons, P. (2015) Between invisible defects and visible impact: The life experiences of adolescents and young adults with congenital heart disease. Journal of Advanced Nursing 71 (3): 599–608. http://dx.doi.org/10.1111/jan.12546


Costello, J. P., Olivieri, L. J., Krieger, A., Thabit, O., Marshall, M. B., Yoo, S. J., Kim, P. C., Jonas, R. A. and Nath, D. S. (2014) Utilizing three-dimensional printing technology to assess the feasibility of high-fidelity synthetic ventricular septal defect models for simulation in medical education. World Journal for Pediatric & Congenital Heart Surgery 5 (3): 421–426. http://dx.doi.org/10.1177/2150135114528721


Dant, T. (2005) Materiality and Society. Buckingham, UK: Open University Press.


Gamble, C., Dudley, L., Allam, A., Bell, P., Goodare, H., Hanley, B., Preston, J., Walker, A., Williamson, P. and Young, B. (2014) Patient and public involvement in the early stages of clinical trial development: A systematic cohort investigation. BMJ Open 4 (7): e005234. http://dx.doi.org/10.1136/bmjopen-2014-005234


Gordon, J. E., Deland, E. and Kelly, R. E. (2015) Let’s talk about improving communication in healthcare. Columbia Medical Review 1 (1): 23–27.


Ha, J. F. and Longnecker, N. (2010) Doctor-patient communication: A review. The Ochsner Journal 10 (1): 38–43.


Hanley, C. (ed.) (2005) Research as Empowerment? Report of a Series of Seminars Organised by the Toronto Group York, UK: Joseph Rowntree Foundation.


Kellett, M. (2005) Children as active researchers: A new research paradigm for the 21st century? NCRM Methods Review Papers 003. Retrieved from http://oro.open.ac.uk/7539/1/


Maguire, P. and Pitceathly, C. (2002) Key communication skills and how to acquire them. BMJ 325 (7366): 697–700. http://dx.doi.org/10.1136/bmj.325.7366.697


Majeed-Ariss, R., Baildam, E., Campbell, M., Chieng, A., Fallon, D., Hall, A., McDonagh, J. E., Stones, S. R,. Thomson, W. and Swallow, V. (2015) Apps and adolescents: A systematic review of adolescents’ use of mobile phone and tablet apps that support personal management of their chronic or long-term physical conditions. Journal of Medical Internet Research 17 (12): e287. http://dx.doi.org/10.2196/jmir.5043


Maruthappu, M. and Keogh, B. (2014) How might 3D printing affect clinical practice? BMJ 349: g7709. http://dx.doi.org/10.1136/bmj.g7709


Schievano, S., Migliavacca, F., Coats, L., Khambadkone, S., Carminati, M., Wilson, N., Deanfield, J. E., Bonhoeffer, P. and Taylor, A. M. (2007) Percutaneous pulmonary valve implantation based on rapid prototyping of right ventricular outflow tract and pulmonary trunk from MR data. Radiology 242 (2): 490–497. http://dx.doi.org/10.1148/radiol.2422051994


Shellmer, D. A., Dew, M. A., Mazariegos, G. and DeVito Dabbs, A. (2016) Development and field testing of Teen Pocket PATH®, a mobile health application to improve medication adherence in adolescent solid organ recipients. Pediatric Transplantation 20 (1): 130–140. http://dx.doi.org/10.1111/petr.12639


Stewart, M., Brown, J. B., Boon, H., Galajda, J., Meredith, L. and Sangster, M. (1999) Evidence on patient-doctor communication. Cancer Prevention & Control 3 (1): 25–30.


Taylor, R. M., Mohain, J., Gibson, F., Solanki, A., Whelan J. and Fern, L. A. (2015) Novel participatory methods of involving patients in research: Naming and branding a longitudinal cohort study, BRIGHTLIGHT. BMC Medical Research Methodology 15: 20. http://dx.doi.org/10.1186/s12874-015-0014-1


Teutsch, C. (2003) Patient-doctor communication. Medical Clinics of North America 87 (5): 1115–1145. http://dx.doi.org/10.1016/S0025-7125(03)00066-X


Travaline, J. M., Ruchinskas, R. and D’Alonzo, G. E. Jnr (2005) Patient-physician communication: Why and how. The Journal of the American Osteopathic Association 105 (1): 13–18.


Verstappen, A., Pearson, D. and Kovacs, A. H. (2006) Adult congenital heart disease: The patient’s perspective. Cardiology Clinics 24 (4): 515–529. http://dx.doi.org/10.1016/j.ccl.2006.08.004


Williams, S., Weinman, J. and Dale, J. (1998) Doctor-patient communication and patient satisfaction: A review. Family Practice 15 (5): 480–492. http://dx.doi.org/10.1093/fampra/15.5.480


Xiao, Y. (2005) Artifacts and collaborative work in healthcare: Methodological, theoretical, and technological implications of the tangible. Journal of Biomedical Informatics 38 (1): 26–33. http://dx.doi.org/10.1016/j.jbi.2004.11.004


Yoo, S. J., Lo Rito, M., Seed, M. and Grosse-Wortmann, L. (2014) Magnetic resonance imaging as a decision-making tool in congenital heart disease surgery. Operative Techniques in Thoracic and Cardiovascular Surgery 19 (2): 152–163. http://dx.doi.org/10.1053/j.optechstcvs.2014.06.002

Published

2016-11-07

How to Cite

Biglino, G., Capelli, C., Leaver, L.-K., Schievano, S., Taylor, A. M., & Wray, J. (2016). Involving patients, families and medical staff in the evaluation of 3D printing models of congenital heart disease. Communication and Medicine, 12(2-3), 157–169. https://doi.org/10.1558/cam.28455

Most read articles by the same author(s)

1 2 3 4 5 6 7 8 9 10 > >>