Introduction

Congenital heart disease (CHD) is the most common form of congenital abnormality present at birth representing 57.1 per 10 000 live births in England.¹ In the United Kingdom (UK), approximately 4 000 operations for CHD in children are performed annually. Of these, around 75% require a period of post-operative recovery on a Paediatric Intensive Care Unit (PICU).²

Physiotherapy practice on PICU has historically focused on respiratory management of ventilated patients. The effects of anaesthesia, surgery and mechanical ventilation can lead to reduced lung volume and secretion retention in children post cardiac surgery. This can increase the risk of developing ventilator acquired pneumonia (VAP). Higher incidences of VAP have been reported in children with CHD post cardiac surgery compared to other patient groups on PICU.³ Physiotherapists have in-depth knowledge regarding the assessment and management of secretion retention associated with being intubated and ventilated.

Due to increased awareness that a period of critical illness can lead to a loss or delay in motor function, physiotherapy practice on PICU has expanded to include assessment and rehabilitation of motor function.⁴ A period of illness requiring a PICU admission can lead to motor delay or a loss of motor function in children.⁵ CHD can impact antenatal brain development leading to motor developmental delay.⁶ The effects of being critically ill on PICU, in addition to pathological risk factors associated with CHD, mean many children require rehabilitation following surgery. Physiotherapists have specialist skills in the assessment and rehabilitation of motor delay and loss of motor function.

Sternal precaution advice is routinely used in clinical practice for patients who have undergone a sternotomy.⁷ However, this advice can impact developmental and rehabilitation activities completed by physiotherapists.

There is a role for physiotherapists in the assessment and management of children with CHD post cardiac surgery. However, there is a lack of literature exploring physiotherapy service provision and practice in this patient group.

This project evaluated physiotherapy practice and service structure for children with CHD post cardiac surgery in the UK and Ireland, in three key areas.

1. Respiratory physiotherapy practice and service provision in children following cardiac surgery.

2. Physiotherapy rehabilitation practice and service provision in children following cardiac surgery.

3. Clinical practice on sternal precaution advice.

Methods

A self-completed questionnaire of physiotherapy departments in UK and Ireland level 1 centres providing paediatric cardiac surgery, was conducted. This method was chosen as it captured quantifiable data from individuals at a single point in time.⁸ Although not a web-based questionnaire the project was designed using the CHERRIES guidelines.⁹ As a service evaluation, this project was not classed as research, therefore formal ethical approval was not required, as per UK Health Research Authority guidance. It was registered and approved by the Trust (CARMS 31431).

The questionnaire content was derived from relevant literature and clinical experience of authors SC and NM (supplementary material 1). The questionnaire took approximately 15 minutes to complete and included 32 multiple-choice and open-ended questions. An e-link to the questionnaire was shared in July 2022. To ensure a variety of Trusts were represented nationally, demographic information collected was limited to the location of the responding Trusts. No identifiable personal information was collated. Face and content validity was achieved by pilot testing the questionnaire using physiotherapists from two Trusts. Following pilot testing, the introductory wording was modified, seven questions were rephrased, and the layout was altered.

The physiotherapy UK extracorporeal membrane oxygenation (ECMO) specialist interest group were approached regarding the project as this group had representatives in level 1 cardiac Trusts. A verbal explanation of the project was completed and an email mailing list of individuals within the specialist interest group was obtained. The questionnaire could be distributed to other physiotherapists within their organisation if these individuals were best placed to complete the questionnaire. The results were stored on a secure NHS drive. Descriptive statistics were used to analyse and report results.

Results

Ten sites completed the questionnaire, with a response rate of 84%. All questionnaires were completed in full. Responses were from sites in the UK and Ireland.

All 10 sites provided physiotherapy input as part of their service provision. Four sites (40%) reported ring-fenced monies for physiotherapy staffing for post-surgical cardiac patients; of these, two (50%) reported one or more dedicated Whole Time Equivalent (WTE) (37/5 h/week) physiotherapists. All sites reported having other member(s) of the multidisciplinary team as part of their work force establishment in post-surgical cardiac patients (supplementary material 2).

Post cardiac surgery, eight sites (80%) reported all new patients were automatically referred for respiratory physiotherapy assessments. Seven sites (70%) stated a respiratory assessment was completed for all patients post operatively, two sites (20%) completed assessments on specific patient groups and one site (10%) only completed assessments on patients that were referred.

Clinical practice when conducting a respiratory assessment varied. Five sites (50%) reported their assessment process included a full bedside assessment, bedside discussions, and chest radiography screening practice. Two sites (20%), used chest x-ray screening and bedside discussions, and a further two sites (20%) completed a full bedside assessment and one site (10%) used full bedside assessment and discussion.

Nine sites (90%) reported that, post cardiac surgery, routine assessment of motor delay and motor function were not completed on all new patients. Four sites (40%) used a formal referral criterion for assessment of motor delay and motor function. Other methods of referral included physiotherapy screening of patients (70%), members of the multidisciplinary team (50%) and parents (30%).

The timing of initial assessment of motor delay and motor function post operatively varied. Sites reported patients were commonly assessed either intubated or extubated on PICU (50%). One site (10%) reported assessment occurred on the cardiac ward and one site (10%) stated it was not part of their service provision (Table 1).

Seven sites (70%) used standardised outcome measures as part of their assessment process; amongst these sites, the Alberta Infant Motor Scale (AIMS) was the most reported measure (n=5, 71%), followed by the Bayley Scale of Infant Development (n=4, 58%). Other measures reported included Peabody Developmental Motor Score, Hammersmith Infant Neurological Examination, and Prechtal’s General Movement Assessment (each at 1 site, 14%).

Rehabilitation of motor delay and loss of motor function in children post cardiac surgery varied. Five sites (50%) did not offer a standardised treatment frequency or length, and eight sites (80%) did not have a standard duration of treatment (Table 2).

The practice of providing families formal developmental advice prior to discharge also differed. Six sites (60%) gave developmental advice prior to discharge, either on PICU or the wards, via a combination of verbal advice, written literature or by individual treatment plans (Table 3).

Eight sites (80%) did not offer outpatient physiotherapy follow up after discharge. At the two sites where outpatient follow up occurs, referral practice and follow up format varied (Table 4).

Seven sites (70%) referred patients to community physiotherapy services however, referral criteria differed (supplementary material 3)

Eight sites (80%) provided advice on sternal precautions. Advice was delivered to families on the cardiac ward at seven sites (n=7, 87%). Four sites (n=4, 50%) also reported providing advice on sternal precautions on PICU, and one site (12%) prior to admission. Sternal precaution advice was shared verbally or via written literature. Four sites (50%) used written literature, two sites (25%) a combination of written literature and verbal advice, and two sites (25%) provided verbal advice only. Physiotherapists commonly delivered sternal precaution advice to families (n=7, 87%). Other professionals included cardiac nurse specialists (n=4, 50%), occupation therapists (n=2, 25%) and therapy assistants (n=1, 12%). Sternal precaution advice varied across each site (Table 5).

Discussion

To our knowledge, this is the first project to evaluate UK paediatric physiotherapy practice, and service provision, for children with CHD post cardiac surgery. All responding sites reported providing postoperative physiotherapeutic intervention to children with CHD but clinical practice and service delivery varied.

Adult intensive care guidelines recommend one WTE physiotherapist for every four, level three ICU beds.¹⁰ This is a higher staffing ratio compared to paediatric critical care quality standards, which recommend one physiotherapist five days a week.¹¹ Protected funding and recommendations regarding physiotherapy staffing ratios for specialist service provision including CHD are currently lacking in the UK. This is reflected in our findings.

This project demonstrated that respiratory physiotherapy was the most reported service provision. However, the effectiveness of ongoing respiratory physiotherapy treatment in ventilated children remains inconclusive.¹² Furthermore, the completion of prophylactic chest physiotherapy in patients post cardiac surgery failed to prevent pneumonia or reduce episodes of atelectasis.¹³ Further evidence is needed to guide respiratory physiotherapy service provision in this patient group. This is emulated in this project as a variety of clinical assessment processes and service provision were demonstrated.

Rehabilitation practice and service provision differed within this project. Most sites used screening methods to highlight at-risk patients. Practice recommendation guidelines for early rehabilitation and mobilisation in children endorsed the process of screening for eligibility within 24 hours of admission.¹⁴ This may explain why sites are adopting this practice. The positive impact of early rehabilitation and mobilisation during a period of critical illness is documented in adult literature.¹⁵ There is a lack of evidence establishing the impact of early rehabilitation and mobilisation, and what dosage of rehabilitation is optimal in children.¹⁶ This is reflected in this project with many sites offering different frequencies, duration and lengths of treatment sessions.

Sternal precautions are utilised within many hospitals with the aim of minimising complications such as wound dehiscence, and poor sternal healing following median sternotomy.⁷ Local sternotomy protocols, as shown in this project, vary and can be based on institutional preference, adult literature, and historical practice.⁷ The development of an evidence-based national guideline could be used to support the standardisation of sternal precaution practice in children.

The importance of, and need for, ongoing developmental screening and referral for specialist rehabilitation in children with CHD is recognised in the literature.¹⁷ Multiple small studies have demonstrated improvements in motor function, strength, and developmental milestones in children with CHD who access ongoing outpatient physiotherapy.^18,19 This project highlights that outpatient physiotherapy service provision is lacking and referral to community physiotherapy services varies.

The variances in clinical practice and service provision demonstrated in this project may be due to a lack of clinically impactful literature and guidelines. Research to evaluate the impact of physiotherapy in children with CHD could aid standardisation of care, although the heterogeneity of this population may make this challenging.

Limitations

Limitations of this project include obtaining responses from only one physiotherapist per site, as this assumes everyone follows the same clinical practice. The use of the ECMO paediatric physiotherapy specialist interest group relied on therapists disseminating the questions. Asking physiotherapists to comment on clinical practical and service provision across a heterogeneous population may have diluted differences in service provision across conditions, ages, and types of surgery.

Conclusion

This service evaluation indicates children with CHD have access to physiotherapists following cardiac surgery but there is a disparity of service provision and a variety of clinical practice. The results of this project highlight that certain sites offer a more comprehensive level of service provision. These sites could be used for benchmarking in local service development projects thus aiding standardisation of care.

Key Points 

Children with CHD commonly access respiratory physiotherapy post-operatively.

Rehabilitation practice post-operatively and on discharge varies between sites.

Further development of guidelines may lead to standardisation of care. 

Acknowledgements

We thank the paediatric physiotherapists who completed the questionnaire and the ECMO paediatric physiotherapy specialist interest group.

Funding

This project received no specific grant from any funding agency in the public, commercial or not-for-profit sectors

Ethical and R&D approval

As a service evaluation, formal ethical approval was not required as this project was not deemed as research, as per UK Health Research Authority guidance. The project was registered and approved by Birmingham Women’s and Children’s NHS Trust (CARMS 31431).

• 1.

  Stevens S, Platt MW. The national congenital anomaly and rare disease registration service (NCARDRS). Reproductive Toxicology. 2018;80:139. doi:10.1016/j.reprotox.2018.07.023
• 2.

  de Belder M, Pow R, Deanfield Jo. NICOR publishes National Cardiac Audit Programme (NCAP) Annual Report 2021. NICOR. 2021. https:/​/​www.nicor.org.uk/​2021/​10/​14/​nicor-publishes-national-cardiac-audit-programme-ncap-annual-report-2021/​
• 3.

  Roeleveld PP, Guijt D, Kuijper EJ, Hazekamp MG, de Wilde RBP, de Jonge E. Ventilator-associated pneumonia in children after cardiac surgery in The Netherlands. Intensive Care Medicine. 2011;37(10):1656-1663. doi:10.1007/s00134-011-2349-3
• 4.

  Hawkins E, Jones A. What is the role of the physiotherapist in paediatric intensive care units? A systematic review of the evidence for respiratory and rehabilitation interventions for mechanically ventilated patients. Physiotherapy. 2015;101(4):303-309. doi:10.1016/j.physio.2015.04.001
• 5.

  Ong C, Lee JH, Leow MKS, Puthucheary ZA. Functional Outcomes and Physical Impairments in Pediatric Critical Care Survivors. Pediatric Critical Care Medicine. 2016;17(5):e247-59. doi:10.1097/PCC.0000000000000706
• 6.

  Sprong MCA, Broeders W, van der Net J, Breur JMPJ, de Vries LS, Slieker MG, et al. Motor Developmental Delay After Cardiac Surgery in Children With a Critical Congenital Heart Defect: A Systematic Literature Review and Meta-analysis. Pediatric Physical Therapy. 2021;33(4):186-197. doi:10.1097/PEP.0000000000000827
• 7.

  Rodman Uher L, Nguyen N, Monge M. Sternal Precautions After Pediatric Cardiac Surgery: A Survey of Current Practice. American Journal of Occupational Therapy. 2016;70(4_Supplement_1):7011510235p1. doi:10.5014/ajot.2016.70S1-PO7104
• 8.

  Lavrakas P. Encyclopedia of Survey Research Methods. Encyclopedia of Survey Research Methods. 2008;1(1). doi:10.4135/9781412963947
• 9.

  Eysenbach G. Improving the Quality of Web Surveys: The Checklist for Reporting Results of Internet E-Surveys (CHERRIES). Journal of Medical Internet Research. 2004;6(3):e34. doi:10.2196/jmir.6.3.e34
• 10.

  FICM. Guidelines for the Provision of Intensive Care. Services - Version 2. 2019. Accessed October 18, 2021. https:/​/​www.ficm.ac.uk/​sites/​default/​files/​gpics-v2.pdf
• 11.

  Quality Standards for the Care of Critically Ill or Injured Children 6 th Edition. October 2021. https:/​/​pccsociety.uk/​wp-content/​uploads/​2021/​10/​PCCS-Standards-2021.pdf
• 12.

  Shkurka E, Wray J, Peters M, Shannon H. Chest Physiotherapy for Mechanically Ventilated Children: A Systematic Review. Journal of Pediatric Intensive Care. Published online August 17, 2021. doi:10.1016/j.physio.2022.11.004
• 13.

  Beningfield A, Jones A. Peri-operative chest physiotherapy for paediatric cardiac patients: a systematic review and meta-analysis. Physiotherapy. 2018;104(3):251-263. doi:10.1016/j.physio.2017.08.011
• 14.

  Choong K, Canci F, Clark H, Hopkins R, Kudchadkar S, Lati J, et al. Practice Recommendations for Early Mobilization in Critically Ill Children. Journal of Pediatric Intensive Care. 2017;07(01):014-026. doi:10.1055/s-0037-1601424
• 15.

  Wang YT, Lang JK, Haines KJ, Skinner EH, Haines TP. Physical Rehabilitation in the ICU. Critical Care Medicine. 2021;(3).
• 16.

  Wieczorek B, Burke C, Al-Harbi A, Kudchadkar S. Early Mobilization in the Pediatric Intensive Care Unit: A Systematic Review. Journal of Pediatric Intensive Care. 2015;04(04):212-217. doi:10.1055/s-0035-1563386
• 17.

  Marino BS, Lipkin PH, Newburger JW, Peacock G, Gerdes M, Gaynor JW, et al. Neurodevelopmental Outcomes in Children With Congenital Heart Disease: Evaluation and Management. Circulation. 2012;126(9):1143-1172. doi:10.1161/CIR.0b013e318265ee8a
• 18.

  Ferrer-Sargues FJ, Peiró-Molina E, Cebrià i Iranzo MÀ, Carrasco Moreno JI, Cano-Sánchez A, Vázquez-Arce MI, et al. Effects of Cardiopulmonary Rehabilitation on the Muscle Function of Children with Congenital Heart Disease: A Prospective Cohort Project. International Journal of Environmental Research and Public Health. 2021;18(11):5870. doi:10.3390/ijerph18115870
• 19.

  Fourdain S, Simard MN, Dagenais L, Materassi M, Doussau A, Goulet J, et al. Gross Motor Development of Children with Congenital Heart Disease Receiving Early Systematic Surveillance and Individualized Intervention: Brief Report. Developmental Neurorehabilitation. 2020;24(1):56-62. doi:10.1080/17518423.2020.1711541