Design and setting

This qualitative study was part of the Health and Lifestyle of Patients with Mesothelioma (Help-Meso) study undertaken at Northumbria Healthcare NHS Foundation Trust between January 2022 and October 2023 (Taylor et al 2022). The Help-Meso study aimed to explore the health and lifestyle of people with mesothelioma from the perspectives of patients, informal carers and healthcare professionals. Participants’ perceptions and experiences were gathered with the aim of considering opportunities for developing effective interventions that would have meaningful benefits for patients and their families. This article reports the perceptions and experiences of healthcare professionals regarding the nutritional management of patients with mesothelioma, which were elicited using individual semi-structured interviews.

Recruitment, participants and data collection

Healthcare professionals were recruited over an 18-month period using opportunity sampling. The first author and lead researcher (LT) sent email invitations to healthcare professionals with experience in lung cancer and mesothelioma, alongside a copy of the information sheet explaining the Help-Meso study and the purpose of the interviews. Those willing to take part were asked to respond to the first author.

Interviews were arranged to take place either face to face or via an online communication platform, depending on participants’ preference. The first author, who has extensive clinical experience in mesothelioma, had developed an interview schedule with open-ended questions. Interviews were conducted with 14 healthcare professionals – eight lung cancer or oncology nurse specialists (cancer nurse specialists (CNSs)) and six respiratory consultants – of whom 12 were female and two were male. Interviews lasted 20 minutes on average and were recorded and transcribed verbatim.

Data analysis

Interview transcripts were analysed using Braun and Clark’s (2019) reflexive thematic analysis. An inductive approach was used, where the emergent themes were generated from the data without analytic preconceptions or a pre-existing coding frame. The fifth author (LD) read and re-read the transcripts and generated initial codes to summarise ideas and concepts. These codes were then collated into potential themes which were reviewed and discussed by the first, second and fifth authors (LT, KS, LD) then defined and named. Participant quotes that best represented each theme were selected.

Ethical considerations

The Help-Meso study had been granted ethical approval from Wales Research Ethics Committee 7 (REC 287193) and had received local NHS research and development approvals. All participants gave informed consent and were allocated a number to protect their confidentiality.

Importance of early nutritional screening

Participants described weight loss and poor appetite as commonly reported symptoms in patients with mesothelioma. They perceived that weight loss and poor appetite was more complex to address in mesothelioma than in other lung cancers and was compounded by other symptoms, such as breathlessness or pain, side effects of medicines and comorbidities:

‘By the time the patient gets to see us, they generally have had some significant weight loss and often are comorbid as well, which already might put them in a nutritionally depleted state. Often [mesothelioma] can tend to have a more aggressive profile, so symptoms can develop faster, often people can have a lot more pain associated with mesothelioma. Also associated with that is medicines associated with pain which might cause nausea and constipation, which have an additive effect on poor appetite.’ (Participant 12)

Participants recognised that poor appetite and nutritional issues have wider adverse effects on patients’ overall health and well-being, since they affect response to treatment, symptom severity and psychosocial functioning. It was suggested that optimal symptom management had an important role in improving appetite:

‘It’s certainly something that we should address because it has a spin-off effect, not just for them managing treatment, but [for] well-being. If you’re losing weight, it’s harder for you to then have the energy, harder to walk so you might be more breathless. We need to focus on each symptom and have that person feeling the best that they can.’ (Participant 4)

Early nutritional screening was viewed as highly advantageous in terms of optimising patients’ response to treatment. Holistic patient care was considered to include nutritional screening but approaches to screening varied. Screening was mostly done without specific guidelines and based on a subjective assessment of the patient’s overall condition:

‘I think we’re learning more, or being aware more, of how to support more patients with lung cancer in many ways, rather than just treating them. They need holistic care and I think diet and nutrition is at the heart of that. But I don’t think it’s in my first meeting with them, it’s maybe not something that’s my priority, maybe wrongly.’ (Participant 8)

‘I don’t have a formal assessment that I carry out personally, so it’s gaining as much knowledge and information from the patient relating to their symptoms and how they present in clinic, really.’ (Participant 1)

An assessment of patients’ nutritional status using a formal tool was often undertaken as part of pre-treatment screening for patients due to receive chemotherapy or immunotherapy to determine whether they were malnourished. However, these assessments were conducted inconsistently and often depended on the cancer care team or the treating healthcare professional:

‘We do one for people who are having chemo or immunotherapy, [using] the MUST score, but I have to say I don’t routinely do that with those patients, so I think it depends on where they are and what cancer care team [they have], so I think it probably is a bit dependable on patients and who is around and who’s seeing them most regularly.’ (Participant 8)

Although participants agreed that early nutritional screening using a formal tool was important to support decision-making about nutritional management, they also mentioned several barriers, including: lack of time and issues with logistics and calibrating weighing scales; concerns about overburdening patients with additional appointments; issues with diagnostic pathways; the need for long-term follow up and for a linked-up approach with GPs; lack of resources about nutrition specific to mesothelioma; and ensuring consistency in approaches. Participants also mentioned the potential issues created by remote follow up, since not seeing patients face to face could make it more challenging to provide holistic care and lead to missed opportunities to address nutritional issues.

Lack of dietetics availability and lack of training and resources

Participants reported several barriers to referring patients to a dietitian, including the time it takes for patients to receive a diagnosis of mesothelioma and the time it takes to obtain an appointment with dietetics services. Therefore, participants tended to provide patients with their own advice and support on diet and nutrition, without specific guidance and without having received training:

‘We all know that the dietitian input is going to be helpful, but there are quite a few steps in getting there that means it might not ever happen or at least not [quickly] enough.’ (Participant 13)‘I think it’s so difficult to get a dietitian at the moment. I don’t think I’ve got the kind of expertise to know exactly what to prescribe.’ (Participant 8)

‘There’s no kind of guidelines or anything in place, there’s nothing specifically set out for that group of patients in those areas.’ (Participant 5)

Nutritional advice included eating ‘little and often’ and consuming foods with high protein, calorie and/or fat content. To counter weight loss and stimulate appetite, participants also prescribed corticosteroids and dietary supplements. However, there was variability in prescribing dietary supplements depending on who had undertaken the nutritional screening and was providing the advice. Participants often felt that they were learning about diet and nutrition ‘on the side’ and by observing dietitians in clinical practice:

‘I encourage them to have little and often that sort of high-end calorific foods, give them the written information of splitting up meals, smaller portions, grazing, smaller plates and so on. Sometimes, you know, as well as the nutritional advice, it might be that we start them on a low dose of steroids and speak to the GP about supplements. So, you would maybe do those steps before directing to dietetics.’ (Participant 4)

‘A lot of these patients are given steroids and hopefully we’ll see a bit of weight gain as part of that. But for me, I’m not so good at looking at other options. Thinking of a situation recently where I’ve said to a patient “we should get you started on some nutritional supplements”: despite the fact that we can do that as it doesn’t have to come through a dietitian, I think we’re pretty rubbish at that as well. I think we deal with it in terms of “we’ll look to see why they’re losing weight and then we’ll give them drugs to stop them losing weight”, but I’m not sure we’re so good at doing the simple things, to be honest. With a lot of the nutritional stuff, it’s learned on the side, isn’t it?’ (Participant 9)

There was a general lack of awareness, among participants, of resources that patients could be directed to for advice and guidance about diet and nutrition. Participating CNSs were more familiar with the available resources than the participating consultants, but the consultants were better informed about the causes of poor appetite and weight loss than the CNSs. Some participants reflected on the challenges of offering advice on diet and nutrition to patients following a specific diet, such as a vegan diet.

Role of cancer nurse specialists and the need for a joined-up approach with dietitians

While participating consultants recognised the importance of nutritional care, all participants highlighted that CNSs are best placed to provide such care. CNSs develop rapport with patients, are more likely to notice a deterioration in patients’ health and well-being and are more likely to discuss nutritional issues with them. CNSs were viewed as having a key role in assessing patients holistically, but it was acknowledged that they needed to do more regarding diet and nutrition. Participating CNSs felt that they were not equipped to fully address nutritional issues in patients with mesothelioma and needed further training and education.

Participants highlighted the need for better availability of dietetics services, a nutrition care pathway for patients with mesothelioma and a joined-up approach with dietitians, who could train and educate CNSs:

‘If we had a dietetics service right up front, I think that would make a difference and then, you know, regular assessments so we can see the changes, or if it tails off [or] if the intervention is actually working. Because I think that we don’t have an exact science for managing what we advise. It’s whether dietetics have got the capacity to take these patients upfront and do work with them.’ (Participant 6)

‘We need a pathway, but we also need, as clinicians, a prompt – don’t we? Specific to dealing with meso or dealing with cancer and then this can trigger x, y or z and a pathway. It just feels like it would make things a lot easier rather than kind of, you know, doing what we think is right but isn’t necessarily evidence based because none of us are terribly well trained in it.’ (Participant 9)

Need for a holistic approach with input from physiotherapists

A ‘one-size-fits-all’ approach was considered unsuitable for nutritional management and dietary advice, since weight loss and poor appetite are influenced by individual patient factors – for example, the presence (or absence) of cachexia, frailty, emotional issues or inactivity. An individualised approach to assessing weight loss and nutritional needs was therefore viewed as beneficial. Participants also noted the importance of interventions promoting physical activity and thought that allied health professionals, such as physiotherapists, could have a role in ensuring a holistic approach to management:

‘There’s sort of, again, no targeted area you can send them to, to say “this will help you”. Exercise isn’t just about going to the gym or getting your heart rate up and making you feel breathless, there’s other things around that we could introduce people to. Cardiac rehab is great, but I don’t know of anything for specifically meso patients. I don’t know of any resources that we could tap into to help them with their exercise or keep fit. We need to have that bigger team that we know we can refer people to.’ (Participant 2)

Participants recognised that there is a gap in service provision, since there are no referral pathways and no provision of suitable interventions for patients with mesothelioma that specifically target nutrition and physical activity. Participants suggested that patients could receive nutritional and physical activity interventions between routine appointments:

‘I think that’s the other crucial thing is that we see these patients, what, once every three months or whatever in clinic, but actually that’s a long period of time where other interventions could happen in the meantime.’ (Participant 9)

However, participants were also aware that there would be barriers to offering additional interventions to patients between clinical appointments, such as overburdening patients with additional appointments and/or workforce capacity issues.

Family was considered central to patient care and patient experience, and participants suggested including relatives in conversations about weight loss and nutrition. They thought that relatives often considered weight loss more of an issue than patients themselves and that the patient’s weight loss often made relatives’ feel distressed and anxious. Educating relatives about weight loss and poor appetite was viewed as important and suggested as a strategy to ease carer burden and manage potential conflict within the family.

Limitations and strengths

The sample size was small, two of the eight CNSs interviewed had less than two years’ experience and the sample did not include allied health professionals. However, meaning in qualitative research is generated through the interpretation of data, not excavated from data, and judging when data saturation has been reached is subjective (Braun and Clarke 2019). The researcher who conducted the interviews had extensive experience in mesothelioma and had regular supervision during data collection to discuss potential pre-existing assumptions. The findings can therefore be considered meaningful. Exploring the perceptions and experiences of allied health professionals, in particular dietitians and physiotherapists, would provide further insights.