Design

A retrospective, descriptive, longitudinal, observational study using process evaluation was undertaken to understand and assess the quality of implementation, and the mechanisms of impact and contextual factors of this complex intervention.^{7, 8} As this was a service evaluation, full ethical approval was not required, but it was registered with the local clinical governance department (Project Number: 18-175C).

Service evaluation model

This paper represents the activity for the sole regional paediatric neuroscience centre in one health region in England, total population about 4 million (800 000 <18y). There are 17 such centres situated across the nine health regions in England. After an initial pump-priming pilot of the service model commencing October 2014, ongoing NHS England specialist services funding was agreed in March 2016.⁹ The service delivers early intensive neurorehabilitation and early supported discharge to all children (0–18y) admitted to a specialist regional centre with an ABI or other neurological injury (including spinal cord injury). The team consists of a 0.2 whole time equivalent (WTE) consultant neurodisability paediatrician, 1.5 WTE physiotherapists, 1.5 WTE occupational therapists, 0.5 WTE speech and language therapist, 0.4 WTE clinical psychologist, and 1 WTE therapy support worker.

The service evaluation model consisted of the following components: a detailed description of the intervention (service) and implementation; analysis of mechanisms of impact and contextual factors (routinely collected data and family feedback); evaluation of the effectiveness of the service from analysis of the data and identification of areas for service improvement.

Participants and setting

Routinely collected service data from 70 children referred to the service with ABI or central nervous system injury from April 2017 to March 2018 were included. Family, team member, and stakeholder feedback was collected via questionnaires and forums.

Process and reach

Children with a recognized ABI or central nervous system injury admitted to the hospital are referred to the service. Each child is assessed and assigned to one of five patient pathways according to neurological deficits. Rehabilitation as per pathway plan commences as soon as the child is medically stable (i.e. stable observations, including vital signs) and well enough to participate (Fig. 1).

Rehabilitation is delivered through a combination of single profession and multi-professional sessions, as required. Intensive therapy is delivered daily (weekdays) during the inpatient stay (1–3h/d, more than one profession, depending on patients’ needs). After discharge from hospital, the team provide outreach therapy through a combination of outpatient appointments, and home and school visits, determined by need and geographical location (1–3 times a week). This continues until either the child has fully recovered or their care is transferred to the local community team. The team meets weekly, to discuss all children currently under the care of the service and to set goals. Attendance at neurology, neurosurgical, and neuro-oncology team meetings ensures collaboration with the wider multidisciplinary team. Multi-agency discharge planning meetings are arranged as required and continue at regular intervals during rehabilitation, and post-discharge where there are ongoing service provision needs.

Outcome measures

Patient demographics, ethnicity, geographical location, admission and discharge information, and LOS data are collected routinely for every child referred to the service. The service also routinely collects standardized outcome measures which are nationally recognized to evaluate outcome, patient complexity, and service satisfaction (Table 1).^10-12

In addition, children seen by the team during 2017 and 2018, and their families, were invited to a family feedback forum through postal, telephone, or face-to-face invites. They were asked open-ended questions – ‘what went well’ and ‘even better if’ – to promote discussion.

Data analysis

Data for 2017 and 2018 were extracted, and checked for accuracy and completeness using hospital systems. There was no missing data; all children referred to the team were included, including those who died during admission. Data for 2017 to 2018 were also compared with previous years’ LOS data from service audits and baseline data collected in 2011 and 2012 during the business case development. All analyses were performed in Stata 15.0 (StataCorp 2015, College Station, TX, USA). Descriptive statistics were used to define the cohort in relation to demographics, including sex, age, ethnicity, region admitted from, and patient pathway. The geometric mean was used to model average LOS with more precision than the median for right-skewed count data, which facilitated analysis of the geometric mean ratio relative to a reference group. LOS in each year since service introduction were compared to LOS in 2011 and 2012, the pre-service period. The geometric mean LOS for 2017 to 2018 specifically was then assessed according to demographics, including patient pathway and diagnosis, with the geometric mean ratio. The geometric mean LOS values are plotted with 95% confidence intervals (CIs) providing the expected limits of the mean within the population. Comparisons were made between admission and discharge outcome measure scores ( King's Outcome Scale of Childhood Head Injury [KOSCHI], Rehabilitation Complexity Scale – Extended [RCS-E]). Wilcoxon signed-rank tests were used to assess differences in matched observations, median values are presented with interquartile range (IQR). A significance threshold of p<0.05 was applied throughout.

Qualitative data collected through the feedback forum and questionnaire were analysed using Braun and Clarke’s reflexive thematic analysis to identify key themes.¹³

Demographics

A total of 70 children were referred to the service between April 2017 and March 2018. The majority were male and 28 out of 70 (40%) were under 4 years of age. Twenty-six (37%) children had suffered non-traumatic brain injuries. There was a broad distribution across the region (Table 2). Half were admitted to the tertiary unit having been transferred from another regional hospital to access specialist services. From a total of 70 children, three (4%) died as inpatients because of the severity of their injuries; 60 out of 70 (86%) children required some therapy input, with 7 out of 70 (10%) having no acute rehabilitation needs. From those requiring therapy, 26 (37%) received intensive inpatient rehabilitation whilst an early supported discharge (with rehabilitation provided at home or as an outpatient) was provided for 14 out of 70 (20%). A further 14 out of 70 (20%) received supportive rehabilitation care whilst receiving oncological or other acute medical treatment and 6 out of 70 (9%) were young infants who received therapy to support their development.

Of the 67 survivors, 14 (21%) children were transferred to other hospitals for ongoing specialist care or repatriated to their local hospital, with the majority being discharged directly home (53/67; 79%). For those not repatriated, after discharge home, 14 out of 67 (21%) children received outreach from the team through home visits and outpatient appointments, before being transferred to local therapy teams or discharged; 14 out of 67 (21%) were referred directly to local therapy services for follow-up; and 25 out of 67 (37%) required no ongoing therapy.

Long-term follow-up was ensured for all children with the brain injury specialist (funded by The Children's Trust) and either the service’s consultant, local paediatrician, or other consultant and neuropsychologist, where required.

Analysis of LOS

The LOS for 2017 to 2018 was compared to 2011 to 2012 baseline data and the previous years’ data (2014–2017) (Fig. 2; Tables S1 and S2, online supporting information). In the cohort of 67 surviving individuals, between 2017 and 2018, mean LOS was 10.6 days (95% CI 8.5–13.2d). This was statistically lower than baseline data from 2011 to 2012 (41d, p<0.001), before the service was launched (October 2014). In previous years, local audits focussed on children who stayed 7 days or more (representing a higher complexity of rehabilitation need). Comparing the 2017 to 2018 data to previous years for those children who had a LOS equal to or greater than 7 days, the mean stay was 17.2 days (95% CI 14.1–21.0d), which was also statistically lower than baseline data (p<0.001). No overall associations were found within the 2017 to 2018 LOS data according to demographics of age, ethnicity, sex, region admitted from, admission type, or speciality.

Analysis of mechanisms of impact and contextual factors

KOSCHI

Where a score of 5B reflects full recovery, median score on admission for the 70 children included was 4A (IQR 3A–4B) and on discharge was 4B (IQR 4A–5A) (p<0.001); 26 children had the same KOSCHI score at admission and discharge, whilst 41 (59%) had an improvement in score. For children on the early supported discharge and intensive rehabilitation pathways who received higher levels of rehabilitation because of higher level needs (n=40), the median KOSCHI discharge score of 4B (IQR 4A–4B) was statistically higher than median admission score of 3B (IQR 3A–4A) (p<0.001). Eight (20%) children stayed the same, whilst 32 (80%) improved (Fig. 3).

RCS-E

RCS-E scores for admission and discharge for the 26 children on the intensive inpatient rehabilitation pathway were analysed. Where a score of 0 indicates no rehabilitation required, median RCS-E scores at discharge (7, IQR 5–11) were statistically lower than admission scores (13.5, IQR 11–16) (p<0.001). Scores improved (reduced) in 24 out of 26 children and remained the same in 2 out of 26 children (Fig. 4).

Support

Families were enthusiastic about the level and quality of rehabilitation and support they received whilst in hospital and during discharge home. Whilst families talked of the positives of being at home and ‘home being therapy’, parents also reported that more long-term support was required as the impact of the child’s ABI on the whole family was ‘exhausting’ and ‘never-ending’. Parents reported needing to ‘project manage’ day-to-day life, cope with ‘information overload’, and try to understand how the different health, social care, and education systems work. Families felt they lacked a long-term key point of contact (key worker) for help and support, particularly regarding accessing the support their child needed from all the services – ‘It's exhausting fighting for everything – ones who get are the ones who shout the loudest’.

Families felt that they needed long-term support from the whole specialist team. Psychological support was a particular gap. Whilst some families received support in their local area, most did not. The limited provision of psychology within the regional service (0.4 WTE) also meant that the families could not access the support for their child and wider family they felt they required. Parents and children also stated the need for peer support and the desire to be able to link up with other families through social media and in person.

Participation

Some children had experienced a slow return to school and parents/carers were concerned about the impact this had on them, particularly socially. Families also reported needing more support to enable return to other activities, especially sport. Two families had engaged private physiotherapists to enable this.

Information

Parents felt they needed to be provided with factual information (magnetic resonance imaging, reports, etc.) for a long time after the injury in order to access services their child needed. Children wanted detailed information in order to ‘fill in the gaps’ in their memory from the stages of accident/illness/recovery they could not remember. Some parents reported finding this hard to do and ‘not wanting to go back there’. The families discussed the importance of creating diaries and taking photographs, but also recognized the need for support from the team to do so. This was found to be particularly important in the early days after the injury, when their child was acutely unwell, but parents found it hard to take photographs and document events.