Nutritional management in mesothelioma: qualitative insights into healthcare professionals’ perceptions and experiences
Intended for healthcare professionals
Evidence and practice    

Nutritional management in mesothelioma: qualitative insights into healthcare professionals’ perceptions and experiences

Leah Taylor Senior mesothelioma clinical nurse specialist, Northumbria Healthcare NHS Foundation Trust, Tyne and Wear, England
Katherine Swainston Director of research, School of Psychology, Newcastle University, Newcastle, England
Christopher Hurst Research associate, Newcastle University, Newcastle, England
Avinash Aujayeb Respiratory consultant, Northumbria Healthcare NHS Foundation Trust, Tyne and Wear, England
Lorelle Dismore Health psychologist, Northumbria Healthcare NHS Trust, Tyne and Wear, England

Why you should read this article:
  • To enhance your understanding of the importance of optimal nutrition in patients with mesothelioma

  • To recognise the need for consistent implementation of existing guidelines on nutrition in cancer and on screening adults for malnutrition

  • To understand that nutritional management of patients with mesothelioma requires a multidisciplinary approach

Background Despite high rates of malnutrition and known links between malnutrition and adverse patient outcomes, nutrition support for patients with cancer is inconsistent. In mesothelioma, nutritional management is key for optimising physical functioning, quality of life and survival.

Aim To describe the perceptions and experiences of healthcare professionals regarding the nutritional management of patients with mesothelioma.

Method Semi-structured interviews were conducted with 14 healthcare professionals with experience in lung cancer and mesothelioma – eight cancer nurse specialists (CNSs) and six respiratory consultants. Data were analysed using reflexive thematic analysis.

Findings Participants recognised that nutritional issues are common in patients with mesothelioma and associated with a high symptom burden. They viewed early nutritional screening as important but approaches to screening varied. Participants found it challenging to obtain input from dietetics services and lacked training and resources in nutrition and diet. They viewed CNSs as having a central role in the nutritional management of patients but emphasised that more input from dietitians and physiotherapists was needed for CNSs to fulfil that role.

Conclusion Specific training, multidisciplinary input and better availability of resources are needed for CNSs to fulfil their role of providing optimal nutritional management for patients with mesothelioma.

Cancer Nursing Practice. doi: 10.7748/cnp.2024.e1868

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

@lorelle_dismore

Correspondence

lorelle.dismore@northumbria-healthcare.nhs.uk

Conflict of interest

None declared

Taylor L, Swainston K, Hurst C et al (2024) Nutritional management in mesothelioma: qualitative insights into healthcare professionals’ perceptions and experiences. Cancer Nursing Practice. doi: 10.7748/cnp.2024.e1868

Acknowledgments

The authors wish to thank the participants for their time and Mesothelioma UK for funding the research

Published online: 18 June 2024

Background

Mesothelioma is a rare and fatal malignancy principally related to exposure to asbestos (Moore et al 2008). Research suggests that, in the UK, exposure to asbestos accounts for up to 85% of cases of mesothelioma in men (Rake et al 2009). While five-year survival rates are slowly increasing, and despite advances in anticancer medicines such as nivolumab and ipilimumab (Assié and Jean 2023), mesothelioma remains a disease with a high symptom burden and poor quality of life (Hoon et al 2021).

In patients with mesothelioma, poor appetite, weight loss and malnutrition are common and can have prognostic importance (Moore et al 2008, Jeffery et al 2019). Weight loss may be an initial sign or symptom of mesothelioma and indicates that the disease is likely to be advanced (Acherman et al 2003). Adequate management of the nutritional status of patients with mesothelioma is key in optimising quality of life and survival (Hoon et al 2020).

Poor nutritional status can adversely affect the quality of life of people with cancer (Arends et al 2017); it can compromise nutritional well-being and physical function, prevent patients with advanced cancer from undergoing treatment and is emotionally disturbing (Ferrer et al 2023). Patients’ and informal carers’ experience of cancer-related weight loss and anorexia is multi-dimensional, and these symptoms are not adequately recognised or managed by healthcare professionals (Cooper et al 2015). In Reid et al (2010), patients with cancer and their families explained that they wanted healthcare professionals to acknowledge their weight loss issues and that they needed information about its causes and to be offered interventions to address it.

Nutritional screening and assessment are recommended in patients with cancer so that malnourished patients can be referred for appropriate interventions (Arends et al 2017). However, despite the high rates of malnutrition in this population, and the known links between malnutrition and adverse outcomes, nutrition support is inconsistent in cancer care (Hébuterne et al 2014). Furthermore, views on nutritional management may differ between patients and healthcare professionals (Sánchez-Sánchez et al 2023). Understanding nutritional management in mesothelioma from the perspective of healthcare professionals could be useful for developing an optimal model of supportive care for patients and their informal carers.

Aim

To describe the perceptions and experiences of healthcare professionals regarding the nutritional management of patients with mesothelioma.

Method

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.

Implications for practice

  • Nutritional screening needs to become integral to the mesothelioma care pathway

  • Existing guidelines on nutrition in cancer and screening adults for malnutrition need to be implemented more consistently

  • Nutritional management in mesothelioma requires a multidisciplinary approach with input from dietitians and physiotherapists

  • Cancer nurse specialists and dietitians could develop a nutritional pathway and resources about diet and nutrition specific to mesothelioma

  • There is a need for multimodal interventions with a nutritional element designed to help manage the symptoms experienced by patients with mesothelioma

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.

Findings

The thematic analysis generated four themes:

  • Importance of early nutritional screening.

  • Lack of dietetics availability and lack of training and resources.

  • Role of CNSs and the need for a joined-up approach with dietitians.

  • Need for a holistic approach with input from physiotherapists.

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.

Discussion

The findings detailed above offer insights into opportunities for developing effective interventions that would have meaningful benefits for patients with mesothelioma and their families.

One important finding was that participants recognised that weight loss and poor appetite are common in mesothelioma and are associated with a high symptom burden. When patients are malnourished, they are more likely to be fatigued and have a poor quality of life (Jeffery et al 2019). Difficulty controlling physical symptoms is challenging and sometimes embarrassing for patients (Arber and Spencer 2013, Nagamatsu et al 2018) and severe symptoms may trigger a psychological reaction (Dooley et al 2010). Better management of the different symptoms of mesothelioma supports patients (Moore et al 2010) and nurses can actively contribute to positive patient outcomes if they help manage symptoms in a way that enhances nutrition (Grant and Kravits 2000). It is important to understand what symptoms patients find burdensome, particularly given that there can be disparities between patients’ experience of symptoms and healthcare professionals’ assessments of patients’ symptoms, notably pain (Salminen et al 2013).

Participants in the present study recognised that informal carers are affected by the nutritional issues experienced by their relative and suggested including carers in conversations about nutrition and diet. In Sherborne et al (2024), informal carers of people with mesothelioma were more likely to report clinically significant scores for depression and post-traumatic stress disorder symptoms than patients, and scored lower for well-being than the person they cared for. Carers can be too busy to notice that their relative’s condition is also affecting them – for example, that they exercise less or eat less. Informal carers in Sherborne et al (2024) expressed the need for encouragement and early advice on looking after themselves.

Another key finding of the present study was that participants considered early nutritional screening as important but approaches to screening varied. Dewey and Dean (2007) conducted a qualitative study of hospital- and community-based nurses’ management of patients with advanced cancer, weight loss and eating-associated problems. The researchers found that most nutritional activities took place on an opportunistic basis in hospital, that many nurses did not routinely undertake early assessment or ongoing monitoring of patients’ nutritional status and that they had received limited training in nutritional management but were keen to learn more about it (Dewey and Dean 2007).

The European Society for Clinical Nutrition and Metabolism (ESPEN) recommends that healthcare professionals involved in the management of patients with cancer provide optimal nutritional care (Arends et al 2017). Undertaking systematic nutritional screening using a validated tool, at cancer diagnosis and periodically throughout treatment, is necessary to provide optimal, equitable cancer care (Corriveau et al 2022). The National Institute for Health and Care Excellence (NICE) (2017) recommends that adults are systematically screened, in hospitals, care homes and general practices, for malnutrition and the risk of malnutrition by healthcare professionals with appropriate skills and training. In hospital, NICE (2017) recommends screening inpatients on admission and weekly thereafter and outpatients at their first clinic appointment and when there is a clinical concern.

However, as shown by the present study, nutritional screening for patients with mesothelioma is inconsistent and there are several barriers to effective nutritional screening and management. Millar et al (2013) and Cooper et al (2015) identified a lack of resources, time and staff, insufficient knowledge and a culture of avoidance as major factors in the suboptimal management of cachexia in advanced cancer and of cancer-related weight loss and anorexia. Patients with cancer are often referred to a dietitian late in their care, which means that they may already be malnourished (Lorton et al 2020). Nutritional interventions can potentially reduce weight loss and improve appetite, which can have positive effects on physical functioning and quality of life and possibly on survival (Hoon et al 2020), but routine nutritional screening will not take place unless it is appropriately resourced and highlighted in policy as an integral part of nursing interventions (Green and James 2013).

In the present study, CNSs were viewed as having an important role in the nutritional management of patients but were learning about diet and nutrition ‘on the side’. Palliative care nurse specialists interviewed by Hopkinson and Corner (2006) had low expectations of being able to help alleviate the nutritional issues experienced by patients with advanced cancer and their families and felt uncertain about how to support people with eating difficulties. Specific education and training is needed to ensure CNSs are equipped to provide effective nutritional management in mesothelioma (Lorton et al 2020), and this was emphasised by participants in the present study. In a quasi-experimental study in Jordan, Sharour (2019) found that a structured educational programme improved oncology nurses’ knowledge, self-confidence and self-efficacy in the nutritional assessment and counselling of patients. Improving CNSs’ competencies in those areas would likely enhance the quality of patient care and patient outcomes.

Nurses have a central role in the early detection of malnutrition in patients with cancer and in referring patients to a dietitian for specialist nutritional assessment (Davies 2005). Participants in the present study emphasised that CNSs have an important role in the nutritional management of patients with mesothelioma, but that for them to fulfil that role, a joined-up approach with dietitians and input from physiotherapists was required. A multidisciplinary approach would be beneficial, as nutritional management cannot be provided through a ‘one-size-fits-all’ approach.

Nutritional interventions targeted at patients with mesothelioma are yet to be developed. Prehabilitation is a multimodal intervention usually consisting of exercise, nutrition and psychosocial support, which helps prepare patients for anticancer treatment physically and psychologically (Wade-McBane et al 2023). Multimodal interventions with a nutritional element targeted at patients with mesothelioma would likely help optimise patient outcomes.

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.

Conclusion

Mesothelioma is a rare and fatal malignancy, and patients commonly experience weight loss and low appetite with adverse effects on their physical functioning, well-being and quality of life. Findings from this study showed that nutritional screening and management for patients with mesothelioma lacked consistency, structure and resources. The role of CNSs in nutritional management was considered essential, however more input from dietitians and physiotherapists, more training in diet and nutrition and more resources are required to guide practice. Nutritional screening needs to be embedded within the mesothelioma care pathway, guidelines on nutrition in cancer and screening adults for malnutrition should be implemented more consistently and multimodal interventions that aim to alleviate symptoms and enhance nutritional status in patients with mesothelioma should be developed.

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