Aim and intended learning outcomes

The aim of this article is to prompt nurses working in cancer care to reflect on how holistic needs assessments (HNAs) can be effectively delivered to all patients with cancer as and when required. The literature on HNAs is limited and the article is partly based on the author’s experience.

After reading this article and completing the time out activities you should be able to:

Introduction

An HNA – or eHNA, in its electronic format – is a structured way of identifying the concerns of a person living with cancer. The aims of an HNA are to (Macmillan Cancer Support 2019):

HNAs are one of the interventions used by clinical nurse specialists (CNSs) and others in the wider cancer care team. They help guide the implementation of the necessary support in the form of a personalised care and support plan.

There are many tools that can be used to conduct an HNA. Richardson et al (2007) carried out a literature review of tools used to assess patients’ needs in cancer care. Commonly used tools included the Sheffield Profile for Assessment and Referral for Care (SPARC), originally developed in palliative care and found to be relevant and effective for conducting HNAs (Hughes et al 2015); and the Concerns Checklist, which had been used following a cancer diagnosis (Harrison et al 1994) and in the hospice setting (Heaven and Maguire 1998). A further example is the Distress Thermometer and Problem List (Biddle et al 2016).

HNAs were introduced as part of the National Cancer Survivorship Initiative, launched in 2007 in England (Department of Health 2013), and are now seen as a vital component of cancer care across the UK. HNAs are a required reporting item in the Cancer Outcomes and Services Data set (COSD) completed by secondary care trusts in England (digital.nhs.uk/ndrs/data/data-sets/cosd), alongside personalised care and support plans and end of treatment summaries.

However, cancer patient experience surveys conducted in the four countries of the UK (www.macmillan.org.uk/about-us/what-we-do/research/cancer-experience) and nationally reported cancer data in England (NHS England 2023a) show that not all people with cancer receive HNAs. In its 2021 report on personalised and integrated cancer care, Macmillan Cancer Support (2021) noted that very few people with cancer interviewed for the report were familiar with HNAs.

Cancer and other long-term conditions

It is estimated that there are three million people living with cancer in the UK, a number expected to rise to 5.3 million by 2040 (Macmillan Cancer Support 2023a). This is due not only to the growing incidence of cancer but also to an expansion of the range of treatment options and regimens (which often results in longer treatment periods and more complex side effects, especially from newer treatments such as immunotherapy) (Macmillan Cancer Support 2013).

The increasing number of people living with cancer means there are more people experiencing late and long-term effects from the disease and its treatment, such as fatigue, sleep disorders, early menopause, nerve damage and pain (Kristoffersen et al 2022). The consequences of cancer and its treatment can continue for months or years after the end of treatment and result in significant physical, psychological and social issues (Foster et al 2009). In 2013, it was estimated that at least 500,000 people living with cancer in the UK experienced one or more physical or psychosocial consequences of cancer and its treatment. These included chronic fatigue, sexual difficulties, mental health problems, pain, urinary and gastrointestinal issues, and lymphoedema (Macmillan Cancer Support 2013).

Cancer is one of the six major health condition groups covered by the Major Conditions Strategy policy paper, which recognises the importance of supporting people to manage long-term conditions, including through care coordination, symptom management and family and carer support (Department of Health and Social Care 2023). Howell et al (2021) reported that the shift from a paternalistic healthcare model to one of partnership between patients and healthcare professionals had been helpful for managing the detrimental consequences of cancer and its treatment and for supporting self-management. A systematic review of self-management interventions for older adults with cancer found that effective interventions were those delivered by a multidisciplinary team and designed to develop people’s problem-solving, self-monitoring, goal setting and planning abilities (Haase et al 2021).

Although HNAs have been developed for patients with cancer, their approach is not cancer specific. HNAs can therefore be used with people who have cancer and other long-term conditions, and potentially also with people with any long-term condition.

Personalised cancer care

The aim of personalised cancer care is to ensure that people have choice and control over the way their care is planned and delivered (Macmillan Cancer Support 2019). Macmillan Cancer Support (2019) proposed that personalised cancer care delivery in local services should have five core components, listed in Box 1.

The NHS Long Term Plan (NHS England 2019a) stated that ‘by 2021, where appropriate every person diagnosed with cancer will have access to personalised care, including needs assessment, a care plan and health and well-being information and support’, all delivered in line with the NHS comprehensive model of personalised care (NHS England 2019b), which offers an all-age, whole-population approach and is applicable to any health condition, not just cancer.

Potential benefits of holistic needs assessments

People with cancer have differing and varying needs, so it is essential to take a personalised approach to assessment. HNAs can provide a framework to ensure conversations with patients are driven by what matters to each individual. Asking patients ‘What matters to you?’ at all stages of their cancer journey empowers them to actively participate in the management of their disease and health and well-being (Robson 2021). HNAs can support healthcare professionals to focus the conversation on identifying patients’ needs and determining how to address them. Using the HNA ranking system – whereby concerns raised are scored in order of the importance of their effects on the patient – can enable healthcare professionals to prioritise patients’ concerns.

HNAs can support healthcare professionals to understand not only the physical effects of cancer and its treatment on the person, but also the psychological and emotional issues caused by living with cancer; practical concerns such as money, work, housing and personal care; issues in relation to family, partners or friends; spiritual concerns; and concerns regarding co-morbidities (Macmillan Cancer Support 2019). Since their concerns may not be directly related to cancer and its treatment, the person may not think to raise them with their CNS or may not think it appropriate to do so. If their concerns are of a sensitive nature – for example, if they relate to sexual relationships or body image – they may feel embarrassed to raise them. The HNA can support people to identify and articulate the issues of most concern to them (Macmillan Cancer Support 2019). Using a paper or electronic version allows them to highlight their concerns without having to verbalise them.

Once the person’s concerns have been identified and their needs determined, HNAs can prompt a conversation about how to address those concerns and needs. A personalised care and support plan is then developed, which provides the person with an action plan with timelines. It may be, for example, that the person wants to focus on one issue in the short term but acknowledge other issues that will need to be addressed later. The personalised care and support plan also allows the healthcare professional to record the HNA conversation and to signpost the person to relevant services.

HNAs are reported to have a significant role in reducing anxiety and isolation and in helping to promote self-management, including the ability to undertake daily tasks, remain at work and maintain family relationships (Macmillan Cancer Support 2019). Addressing people’s concerns early can reduce the risk of these concerns becoming more significant over time.

Considerations for effective delivery

When and where HNAs are conducted, who delivers them and how they are undertaken is critical to their effective delivery.

Considering health inequalities

Health inequalities are about differences in people’s health status, in the care people receive and in the opportunities they have to lead healthy lives. Health inequalities can involve differences in access to care, in the quality and experience of care, in behavioural risks to health, and in wider determinants of health (King’s Fund 2022). People living in areas of high deprivation, people from minority ethnic backgrounds and people from inclusion health groups – such as the homeless, migrants and sex workers – are at highest risk of experiencing health inequalities (NHS England 2023c).

People with cancer may experience language barriers, have poor health literacy, lack access to transport and childcare, or be unable to take time off work. Poor previous experiences of healthcare and cultural issues such as stigma related to a cancer diagnosis, misinformation and fear can lead to people declining interventions and treatments, which adversely affects their outcomes and life expectancy (NHS England 2023c). These factors need to be considered when conducting HNAs and healthcare professionals who conduct them must ensure that barriers to receiving HNAs are understood and reduced.

Cancer care is traditionally seen as the domain of secondary care specialist teams, but delivering personalised care requires a broader approach taking into consideration local populations and communities to ensure that everyone living with cancer is offered the same opportunities to access care and support. Understanding the local community and the intersection of multiple health inequalities is important (Marmot et al 2020) and is most effectively achieved when services are co-produced with people with lived experience (Ayiwe et al 2022).

Involving people – and employing staff – from the local community helps to better understand the needs of the local population in terms of access to cancer care. The Health Equity Assessment Tool (HEAT) is designed to support healthcare professionals to identify and act on health inequalities locally (Public Health England 2020). It provides a practical framework that is flexible to the needs of different work programmes and services. To identify and reduce health inequalities, the author recommends carrying out a HEAT assessment of local cancer services and acting on the findings.

Cancer care across services

It important to consider how cancer care is delivered in secondary care and primary care. Although patients will be under the care of a specialist cancer team in secondary care, many of the elements considered in an HNA relate to their life outside of that specialist environment. Patients often experience fragmented and uncoordinated care, and a greater integration of health services would optimise outcomes for people with cancer (Rubin 2015). Communication between the specialist cancer team and the patient’s GP is important and sharing HNAs and personalised care and support plans can support it.

Patients should be encouraged and empowered to take their HNA and personalised care and support plan to primary care appointments, in particular their cancer care review. This is a conversation between the patient and their GP or a primary care nurse and is part of the national Quality and Outcomes Framework (QOF) cancer-specific requirements for primary care (NHS England 2022, Macmillan Cancer Support 2023b). Cancer care reviews should include a discussion of the patient’s experiences and concerns and provide them with details of local support and services. The HNA approach is advocated as an effective method of approaching cancer care reviews, since their aim is to deliver personalised care in a setting local to the patient (Macmillan Cancer Support 2023b). HNAs delivered in secondary care can be taken to cancer care review appointments in primary care while HNAs can also be delivered in primary care as part of cancer care reviews.

Developments in the primary care workforce include the introduction of three new roles that can support the delivery of personalised care – social prescribing link worker, care coordinator, and health and well-being coach (NHS England 2023d). These roles are well placed to support personalised care through their knowledge of services available locally and of services that have a wider reach than cancer-specific services. To ensure a more joined-up approach, the author recommends that secondary-care based healthcare professionals establish links with their colleagues in primary and community care. This can result in sharing of best practice and determining who is best placed to support patients.

Examples of innovative models

There are examples of innovative models aimed at improving cancer care across services that use different delivery strategies than the traditional secondary care nurse-led model.

In 2014, Glasgow City Council and Macmillan Cancer Support set up the Improving Cancer Journey service. The service aimed to offer an HNA to everyone eligible in Glasgow using a non-clinical council-employed link worker who would deliver the intervention in a local community setting, at home or in hospital, depending on the patient’s preference. The service was evaluated in 2020 and outcomes included improved patient outcomes and experience, the unlocking of £18 million in benefits and grants, and avoiding 50 people with cancer becoming homeless. The service also released time for CNSs and doctors. It has been extended to other parts of Scotland (Young et al 2020).

In 2019, Wessex and Thames Valley Cancer Alliances and Health Education England piloted new cancer nurse roles. These nurses worked with practice nurses and other primary care professionals, upskilling them to develop their confidence in supporting patients with cancer, including undertaking cancer care reviews. Outcomes included improved communication between CNSs and primary care professionals around the management of co-morbidities, and GPs discussing issues relating to the patient’s disease directly with the CNS, potentially avoiding outpatient clinic appointments and hospital admissions (O’Donnell 2020).

From anecdotal evidence, the author understands that Bath and North East Somerset, Swindon and Wiltshire Integrated Care Board has developed a new role of practice nurse facilitator. These nurses provide a link between primary and secondary care and support patients with cancer from each of the three secondary care hospitals within the integrated care board.

Conclusion

Despite the fact that HNAs are seen as a vital component of personalised cancer care, there are still shortcomings in their delivery. HNAs are often first carried out soon after diagnosis, at a time when many patients feel overwhelmed. CNS teams are increasingly busy and increasingly low on numbers. Furthermore, cancer care is often structured around the needs of services, not patients. Cancer care is traditionally seen as the domain of secondary care specialist teams, but delivering personalised care requires a broader approach. When, where and how HNAs are conducted is key to their successful delivery. CNSs, cancer support workers and allied health professionals working together, and secondary and primary care teams collaborating, will help deliver HNAs as and when patients need them, which can be at any point during their cancer journey.