How cancer nurses built new pathway for patient mental well-being

Early phase trials nursing team helps ensure that people living with cancer will receive effective holistic care right at the start of their treatment

  • Responses from patients to the cancer pathway have been positive and it has led to referrals to counselling and other services
  • Better communication between patients and staff has allowed them to broach subjects that might otherwise have been unaddressed
  • Nurses feel supported to discuss emotional topics with patients who have no other treatment options left
The early phase clinical trials team at Oxford University Hospitals NHS Foundation Trust team (left to right) Abodunrin Babatunde, Rosie Lomas, Cesaria Ehibhatiomham, Caroline Haddon and Caroline Miles
Team members (left to right) Abodunrin Babatunde, Rosie Lomas, Cesaria Ehibhatiomham, Caroline Haddon and Caroline Miles Picture: Tim George

At any one time there are a number of early phase cancer clinical trials ongoing in the UK.

Yet while the focus is on improving patients’ health, a participant’s mental health may be overlooked. One group of nurses is trying to change that.

The introduction of a mental well-being assessment for people living with cancer who are joining early phase trials at Churchill Hospital in Oxford has had ‘clear, positive impacts’ over the past year, despite the challenges of the pandemic.

Cancer research nurses at the hospital – part of Oxford University Hospitals NHS Foundation Trust – say the assessment has helped to facilitate a safe and welcoming environment for patients to discuss their emotional well-being.

‘Cancer patients are at risk of common mental health issues – depression and anxiety are associated with poor treatment adherence’

Rosie Lomas, research nurse

The early phase clinical trials team has developed a clear pathway for patients displaying low mood, which involves early access to counselling and other services including palliative care. Patient feedback has been positive.

In recognition of its work, the team won the Excellence in Cancer Research Nursing Award, sponsored by charity Cancer Research UK, in the 2021 RCN Nursing Awards.

Research nurse Rosie Lomas, who led the award-winning project, says: ‘The research shows that cancer patients are at risk of common mental health issues and that depression and anxiety are associated with poor treatment adherence.

Previous holistic nursing assessment tool was just a tick box exercise

‘Most of our patients have exhausted standard care options such as chemotherapy before they come to our 13-bed early phase trials outpatient unit. I decided to look at what we were doing in our unit and found there was no effective emotional/psychological assessment, nor clear referral system.

Rosie Lomas guiding Rohini Unni Krishnan Nair in the use of the Warwick-Edinburgh Mental Health Well-being scale
Rosie Lomas guiding Rohini Unni Krishnan Nair in the use of the Warwick-Edinburgh Mental Health Well-being scale Picture: Tim George

‘We wanted to make it better for patients and improve our assessment of psychological well-being and develop an effective treatment pathway.’

The team had a holistic nursing assessment tool, which briefly mentioned emotional state. Ms Lomas recalls: ‘Under “emotional well-being” there were five boxes to tick – no issues, memory loss, depression, anxiety and adjustments to diagnosis treatment – but this was a tick box exercise rather than a discussion about how a patient felt.

‘The tool was also inconsistently used. I completed an audit of patient notes, which showed it was only used for 40% of patients.’

She took her evidence to her manager, senior research nurse Caroline Miles, and they decided to use an approach developed in the 1940s by psychologist Kurt Lewin to change their nursing practice.

Three stages before change becomes part of a system

Change theory pioneer Kurt Lewin identified three stages through which change agents must proceed before change becomes part of a system:

• Unfreezing (when change is needed) – examine the status quo, increase driving forces for change

• Moving (when change is initiated) – take action, make changes, involve people

• Refreezing (when equilibrium is established) – make changes permanent, establish new way of things, reward desired outcomes

Ms Miles says: ‘In line with this model of change, we had to think of a way of unfreezing our existing practice and creating the thinking that change was needed.

‘This meant involving the team from the start. Good communication and sharing knowledge within the team was vital. We wanted to implement an easy-to-understand tool with regular reviews of what we were doing, talking about the advantages and disadvantages before deciding whether we wanted to continue, and then freezing the changes we were making.’

In February 2020 they launched a pilot using the Warwick-Edinburgh Mental Health Well-being scales, which were developed to measure the psychological well-being of the general public and can be used to evaluate projects aimed at improving mental well-being.

In total, 14 questions are scored from one to five, with a final score of between 60 and 70 establishing good/high mood and 14 to 42 mood indicating low mood.

Ms Miles says: ‘The nurses trialled the scales on 35 patients and I looked through the data with colleagues. Our sample of six was much smaller than the comparison group of more than 1,000 but we wanted to get an idea of how our patients scored against the general population.

‘We found the early phase trial patient scores were roughly the same as the general population, 51.2 against 51.6 respectively.

An assessment is undertaken at the first screening appointment

‘So we compared the lowest scoring 25% of patients in the early phase unit, on average a score of 42, against the lowest scoring 25% of the general population, which had an average score of 47 – this was quite a significant difference.’

In March 2020 the project had to adapt to the pandemic. ‘Staff were redeployed and we moved to a small clinic room,’ Ms Miles recalls. ‘We were low on staff and needed something that would assess patients more rapidly.

‘So we used a shortened version of the tool with seven questions. Scores of 28-35 indicated high mood and 7-19 low mood. We reviewed the result in October and have continued using it since.’

A new pathway to refer patients scoring below 20 has been developed. The assessment is undertaken at the first screening appointment.

Three strands in pathway to refer patients for support

There are three strands to the pathway for patients scoring less than 20 on the shorter questionnaire or who have expressed low mood or loneliness during their discussions with the nurse.

1. Refer to GP for low mood management if the patient has travelled to the hospital from another area

2. Refer to Maggie’s Centre for counselling on the hospital site if the patient is local

3. Introduce palliative care for patients for low mood and other further assessments

Research nurse Rosie Lomas says: ‘As a team we feel that this introduction of palliative care for our patients very early on has been so beneficial.

‘Before, we would introduce early phase patients to the palliative care team straight from coming off studies, which was a stressful time for them.’

Medical staff have credited the nurses’ communication with patients as the reason why the move to introduce palliative care has been so positive.

One wrote to the nursing team: ‘Being able to refer to ourselves as the palliative care team without causing patients alarm has been mainly because of your team’s excellent communication around our role in symptom support.’

Patient feedback around the palliative care support has also been positive.

Ms Lomas says: ‘We weren’t sure this was the right time. The patient had not yet built up a relationship with the nurse, so they might not have felt comfortable about talking about emotional issues. Also we were worried about overloading the patient with information at the screening interview.

‘We have considered whether it is worth doing on more than one occasion, such as when there is a significant clinical change. However, we have found that if the assessment is introduced early on you build trust and an atmosphere where patients are comfortable talking about their emotional well-being, which facilitates the conversations later in the journey.’

Important for nurses to still use their assessment skills as well as the pathway

Other concerns were whether the team should have used a more cancer-specific assessment and that nurses might start relying on the numerical score.

‘We wanted the team to still use their nursing assessment skills but use the tool to help them,’ says Ms Lomas. ‘Patients are not always honest. We have all had patients who say they feel fine but as soon as their wife has left the room they have said, “I don’t want to do this any more as I can’t cope, but I can’t let her down”.

‘He might not have slept properly for three weeks or have terrible diarrhoea but not tell us in case we take him off the study, but we can help with that.’

Nurse Caroline Haddon carries out a well-being assessment
Nurse Caroline Haddon carries out a well-being assessment Picture: Tim George

Ms Miles says: ‘It’s a case of starting the conversation – just letting them know you are there and open to hearing about how they feel. Too often patients think we are too busy – and of course we are busy and look busy on the unit, but the tool makes sure the patient can see we are making time to listen to them.’

The team is also prioritising its own well-being. Ms Miles says: ‘Other research nurses are going to start doing debrief sessions for the team and push forward well-being. We see patients at end of life and there has been lots of stress because of COVID-19. It has been a hard time for all nurses, and if we don’t look after ourselves who will be there to help the patients?’

Effective and early assessment of early phase patients’ mental well-being

As well as regular audits of the questionnaire, the team is looking to develop training and share its work with other oncology areas. It is also interested to see if the pathway improves retention on its studies as patients get palliative care for symptoms so early in their journey.

Ms Lomas says: ‘After the anxiety and worries during COVID-19 regarding cancer treatment, we feel this additional assessment has helped us to provide holistic care. We have an effective and early assessment of early phase patients’ mental well-being and a new, clear pathway.

‘It has empowered nurses so they are more confident in having discussions about emotions as they know they can help their patient through the referral pathway.

‘As well as positive feedback from patients and colleagues, the inclusion of the palliative care team in our weekly multidisciplinary meetings has been a real benefit. When these patients come off studies, they often have no other options. It must be so distressing ,so if we can help them just a bit that’s great to see.’

Building trust and being honest about the context of care

RCN Nursing Awards logo

The early phase clinical trials team from Oxford University Hospitals NHS Foundation Trust was winner of the Excellence in Cancer Research Nursing category of the RCN Nursing Awards 2021. Cancer Research UK sponsored the award.

Cancer Research UK lead research nurse Anne Croudass says: ‘This team is a worthy winner of this highly contested award. Their initiative focusing on the mental well-being of cancer patients entering early phase trials demonstrated a real person-centred approach to providing truly holistic care to this vulnerable patient group.

‘Their commitment to integrate this project into routine practice during the pandemic is to be congratulated. The positive patient reviews are testament to the value of their work and demonstrate that they have made a difference to patient well-being.’

Foundation of Nursing Studies chief executive and awards judging panel chair Joanne Bosanquet said: ‘Rosie and her team has focused directly and overtly on the mental well-being of her client group, recognising the importance of building trust and being honest about the context of care.

‘This approach brings mental and physical health and well-being closer together, and prioritises mental well-being across the service. Watch this space as there will be more to come from this team. Congratulations to them all.’

Cancer Research UK logo
The Excellence in Cancer Research
Nursing category of the RCN
Nursing Awards 2021 was
sponsored by Cancer Research UK

As well as presenting their work to the judging panel, as winners the team presented on the Cancer Nursing Practice webinar.

Team lead Rosie Lomas says it was a tremendous accolade to win such a prestigious award: ‘Winning our category has boosted the profile of our department and research in general at our trust. It has also raised awareness with people who are undergoing cancer care and would like to be considered for one of our clinical trials. We are honoured that our hard work and commitment to patient well-being has been recognised nationally.’