Cancer prehabilitation survey: findings report

Executive Summary

This report summarises the findings from a survey undertaken in 2022 about cancer prehabilitation and rehabilitation services in Scotland. Its findings were analysed by Scottish Government (SG) analysts, on behalf of Scotland's Cancer Prehabilitation Implementation Steering Group (CPISG). Its purpose was to support CPISG to re-assess the current and planned prehabilitation position within Scotland, in order to understand awareness of the eight Key Principles for Implementing Cancer Prehabilitation across Scotland ('Key Principles') and deliver its objective of effective national roll-out of prehabilitation services.

For the purposes of the survey the following definitions were provided to respondents:

Prehabilitation "constitutes nutrition, physical activity/exercise and psychological support and the associated interventions delivered before definitive cancer treatment. You may consider individual services or multi-modal programmes."

Rehabilitation "constitutes nutrition, physical activity/exercise and psychological support and the associated interventions delivered after definitive cancer treatment. Rehabilitation is proactive and personalised."

There were 187 respondents to the 2022 survey, compared with 295 to a similar survey in 2019. Around three quarters of respondents were employed by the NHS in secondary or tertiary care. Nearly three quarters were Allied Health Professionals (AHPs), Physicians (secondary or tertiary care) or Nurses.

Survey findings have been summarised thematically as shown below.

Attitudes and Awareness

Nearly all respondents attached high importance to prehabilitation, with just over half viewing it as a crucial component of care before treatment, similar to the 2019 survey. Findings were similar for rehabilitation. Around two fifths had high or very high awareness of the 'Key Principles'. A similar proportion had low awareness or were not aware at all. Respondents with prehabilitation services in their local area were more likely to have high awareness.

Service Availability and Resourcing

Local prehabilitation activities were offered in half of survey respondents' areas, with findings similar for rehabilitation. Around two thirds of respondents with either a local prehabilitation or a local rehabilitation service in place had both services, while the remaining third had one service.

There was a small numerical and large percentage increase in the availability of local prehabilitation services compared with 2019. This could either reflect that those with greater awareness or interest in prehabilitation were more likely to participate in the 2022 survey, or an actual increase in the availability or awareness of local services.

Following the start of the COVID-19 pandemic, many local services were scaled back or stopped, or their progress was slowed. However in 2022, services were reported to be resuming or increasing, and new services were starting. During the pandemic many services switched from face to face to phone or video appointments. This experience informed the resumption of some services in hybrid / blended delivery modes. This was viewed as a positive development, but with recognition that while video appointments increased access for some groups they were not appropriate for others.

With regard to staff delivering prehabilitation activities, nurses, dietitians and physiotherapists were most often mentioned. Compared with 2019, there were notable increases in mentions of dietitians, clinical psychologists, counsellors and fitness instructors. One fifth of responses mentioned staff from all three prehabilitation modes; in most cases a nurse and other staff were involved too.

Staffing barriers to supporting prehabilitation included staff shortages, heavy workload and pressures on existing staff. Compared with 2019, there was a considerable increase in local services with temporary funding and a decrease in permanent funding. The need for designated staffing and dedicated and permanent funding to develop sustainable prehabilitation services was emphasised.

Around one quarter of survey respondents said that there were local plans to introduce or add to local prehabilitation activities; two thirds did not know.

Service Delivery and Pathways

Respondents were asked how far local service delivery was underpinned by the 'Key Principles'. The highest level of agreement was for the principle that activities are multi-modal (around three fifths). Agreement was at around half for four of the other principles (prehabilitation starts as early as possible; runs in parallel with usual decision-making processes; is part of the rehabilitation continuum; and that screening is recorded by the cancer multidisciplinary team). Agreement was less than a quarter for the remaining three principles (screening, co-produced personalised care plans and validated tools used for assessment; care planning; and outcomes measurement).

Three fifths of respondents with local services either referred to or provided prehabilitation services, with similar findings for rehabilitation services. Poor timeliness of referrals was highlighted as a key issue, with referrals not made automatically or made late. The need for earlier screening, identification and offer of prehabilitation was emphasised, as well as appropriate referral to universal, targeted and specialist services. It was suggested that the Single Point of Contact approach, pathway navigators and cancer support workers could support this process.

Of those with local services, nearly three quarters stated that services screened or triaged for one or more of the three prehabilitation modes. Only one fifth said that services screened for all three modes, compared with the three fifths who agreed that this key principle underpinned local services. Although some suggested that multi-modal interventions were relatively common, others commented that existing interventions did not involve all three modes or that these were not linked to each other. Various approaches to screening were reported for each mode.

Around half of respondents with local prehabilitation services agreed that these services were part of the rehabilitation continuum. However, most of this group did not describe how this continuum worked in practice, so the extent to which their patients moved along a seamless pathway was not clear. Some third sector respondents whose organisations provided both prehabilitation and rehabilitation did describe service delivery throughout the cancer journey. The need for improvement in this area was acknowledged.

The need for senior-level leadership and buy-in for prehabilitation in principle was highlighted, to set the tone for less senior staff. Such leadership could also support service availability and resourcing if it led to the provision of longer-term funding and sustainable staffing. As in 2019, the need for consistent prehabilitation programmes was highlighted, with suggestions to develop a formalised prehabilitation intervention and guidance to support a consistent local offer.

Access to Services

The need to maximise patient access to services was emphasised, as was the need to improve equity of access. It was suggested that both hospital-based and community-based services were needed, to facilitate access at initial referral and during interventions. Specific patient groups at risk of inequitable access included those living in remote and rural areas and on islands, patients in under-served tumour groups and people experiencing socio-economic inequalities. The potential impact of service delivery mode on equity of access was also highlighted.

Communication and Collaboration

Among respondents with local services, multidisciplinary team (MDT) involvement was viewed as an important enabler of an effective pathway. However, there were mixed experiences of MDT engagement. Some described prehabilitation services integrated within or working closely with the MDT, while others commented on services not being part of or linked into the MDT. The need for improved MDT awareness and understanding of the benefits of prehabilitation was highlighted, as well as for improved communication between service providers.

NHS respondents with local services highlighted partnership working with third sector projects, such as the Maggie's pilot projects and Macmillan/ICJ projects, as a potential enabler of effective prehabilitation. However, awareness of these projects and working relationships with them varied, with some stating or implying that local prehabilitation was something separate undertaken by third sector organisations such as Maggie's. The need for improved links with third sector services was highlighted.

Monitoring, Evaluation and Outcome Measurement

Many respondents with local services were uncertain about whether and how monitoring data about patient uptake, adherence and experience was captured. Monitoring processes mentioned included recording patient referrals, uptake, and attendance, and feedback forms or questionnaires. Around one third stated that outcome measures were used to determine the effectiveness of prehabilitation activities. They highlighted a range of measures used, including objective measures of muscle strength and body mass index (BMI); patient-reported outcome measures; and service-level outcomes. The need for better monitoring, evaluation and outcome measurement, to demonstrate the benefits of prehabilitation, was acknowledged. This could help make the case for long-term funding and sustainable staffing.