Support for adult survivors of lymphoma: a literature review

This literature review will discuss the support available from health professionals for adult survivors of lymphoma. The term ‘survivorship’ is a concept originally derived from the USA, addressing the holistic needs of people who have successfully finished cancer treatment programmes (National Institute for Health and Care Excellence (NICE), 2004). For the purpose of this review, the term survivor is defined as a person who has come to the end of successful treatment, and the term survivorship is defined as the period following the end of treatment.

Lymphoma is cancer of the lymphatic system, which is traditionally categorised into two broad main types, Hodgkin lymphoma (HL) and non-Hodgkin lymphoma (NHL), which can be broken down into many further subtypes. Cancer care is rapidly changing and improvements in diagnoses and treatments are leading to a growing population of survivors. Survival of at least 10 years is high, at 55% for NHL and 75% for HL (Cancer Research UK, 2022). Treatment for lymphoma can include use of targeted therapies, steroids, chemotherapy and radiotherapy; however, this review will focus on survivors who were previously given chemotherapy due to the common inclusion in regimens.

Despite improvements in cancer treatments, lymphoma survivors are at risk of developing secondary malignancies and cardiovascular diseases as a result of being treated with toxic chemotherapies, leading to a reduced life expectancy with greater morbidity (Husson et al, 2017; Boyne et al, 2018). In addition to the physical late effects of chemotherapy, lymphoma treatment can cause psychological distress and have an impact on cognition, leading to issues with memory, concentration, sleep, nerve damage and epilepsy (van der Meulen et al, 2018; Troy et al, 2019). Experiences of anxiety and depression following high-dose chemotherapy regimens are high in lymphoma survivors and a lack of support at the end of treatment can lead to survivors experiencing a sense of loss and fear of cancer reoccurrence (Troy et al, 2019; Heveran and Andrewes, 2020). The quality of life (QoL) of lymphoma survivors can therefore be impacted as a result of the late effects of treatment and a lack of support services, demonstrating the need for support in survivorship.

Although there are no specific guidelines on HL survivorship care in the UK, NICE's NHL survivorship guidelines recommend that treatment summaries should be given to patients at the end of treatment, including information on the risk and recognition of late effects related to their subtype of lymphoma and the treatment provided (NICE, 2016a). Further guidelines suggest that late effects should be monitored for 3 years post-completion of lymphoma treatment, which should be managed by a nurse-or GP-led service (NICE, 2016b). The cancer charity Macmillan promotes the use of personalised care and support planning through holistic needs assessments and end-of-treatment summaries to ensure that survivors' emotional, physical, psychological and social needs are addressed (Macmillan, 2021). These documents can be shared by hospital clinicians with the patient and their GP at the end of treatment to support cancer care reviews in the community. Despite these recommendations, there is a recognised risk that people's needs may not be met in survivorship (Johnston et al, 2021). Evidence on the benefits of survivorship care is predominantly based on survivors of breast and prostate cancers, and research into post-treatment support for survivors of lymphoma is more commonly conducted on those who were diagnosed in childhood (Matheson et al, 2016; Husson et al, 2017; Barcenas et al, 2018; Sanft et al, 2019). Therefore this literature review aimed to discover whether adult survivors' needs are being met by exploring the types of support available and the effects on QoL.

Methods and search strategy

The literature search was conducted between 1 November and 15 November 2020, and comprehensive searching was used to ensure that all relevant research was identified (Aveyard et al, 2016). Table 1 shows the databases used and a list of the search terms that captured the topic of support in lymphoma survivorship.

The searches were conducted with limits set to exclude non-English language and non-peer reviewed articles and, where available, an additional filter was added to only include articles based on adults (aged 19 years+). Boolean operators were also used to expand electronic database searching. Across the six databases, a total of 223 articles were found. Articles were individually assessed for eligibility, using the inclusion and exclusion criteria in Table 2. All articles were then reviewed to distinguish whether there was discussion of post-treatment clinical support, leaving 23 that were suitable and relevant.

A quality evaluation of the articles was undertaken using the Critical Appraisal Skills Programme (CASP) checklists to assess the credibility, reliability and validity of each article's research processes (CASP, 2019). One article was removed at this stage due to a lack of defined research strategies and analysis procedures. The findings from each article were plotted using Thomas and Harden's (2008) process of thematic analysis, allowing the main themes to be identified and conclusions from across the literature to be synthesised.

Findings

Table 3 displays the methodology of the 22 articles examined in this literature review. All of the articles concerned lymphoma survivors diagnosed during adulthood, but nine studies covered a broader range of cancer types as they compared lymphoma survivors against those with other diagnoses (Beekers et al, 2015; McNulty and Nail, 2015; Brant et al, 2016; Jefford et al, 2017; Arts et al, 2018; de Rooij et al, 2018; Smith et al, 2019; Schuit et al, 2020; van der Hout et al, 2021). All of the articles discussed post-treatment support for those who had previously been treated with chemotherapy regimens, and the findings were synthesised into two main themes: specialist support and primary care involvement.

Specialist support

In many of the studies, contacts with haematology specialists were positively correlated with experiencing the burden of physical and psychological symptoms of late effects. This suggests that those with a poorer QoL may need more support in survivorship (Jefford et al, 2017; Taylor et al, 2018; Parker et al, 2020). One study demonstrating the role of the clinical nurse specialist (CNS) in navigating survivorship care found that contact with the CNS was more likely if patients had a higher number of comorbidities. Although those with more comorbidities had a lower reported QoL, those with fewer may have been at risk of their needs being unmet, due to making less contact with a health professional (Brant et al, 2016). Although there are online tools providing information on late effects to encourage self-management and decrease the fear of cancer reoccurrence, findings across the literature demonstrate that these may not be appropriate for those experiencing psychological distress (Beekers et al, 2015; Ng et al, 2016; de Rooij et al, 2018; Frick et al, 2018; de Wit et al, 2019; Smith et al, 2019; Schuit et al, 2020; van der Hout et al, 2021). Despite available clinical guidelines and recommendations for survivorship tools, some participants stated that they were unaware that their treatment had ended, highlighting the risk of unmet needs in lymphoma survivors (NICE 2016a; 2016b; Hackett and Dowling, 2019; Macmillan, 2021).

Contact with a CNS, as part of a CNS-led lymphoma survivorship clinic, has been shown to increase survivors' confidence and positivity (McNulty and Nail, 2015; Taylor et al, 2018). Clinic attendance was associated with the provision of individualised survivorship care plans (SCPs), which helped survivors to feel supported and recognised, suggesting that their needs could be met with structured specialist support. However, Parker et al (2018) examined the difference between the QoL of survivors who had survivorship planning consultations with haematology specialists, and those who had general wellness rehabilitation consultations run by health professionals outside of the haematology field. Both groups received nutrition and exercise rehabilitation advice, and those in the survivorship clinic group were given an additional SCP, containing treatment summaries, information on the late effects of chemotherapy, and screening and vaccination recommendations. Improvements in QoL were shown in both groups, supporting the use of clinics in survivorship. However no significant difference was found between intervention types, implying that increased knowledge through provision of an SCP does not directly improve QoL. These findings offer new insights into other routes of survivorship care as the pressure on a single sub-type of health professional is lowered. This is a valuable finding in current times where the population of survivors is increasing, yet healthcare staff shortages are worsening (van der Hout et al, 2021).

Although self-management tools are available for survivors, a lack of information relating to late effects was prevalent throughout the research, impacting the QoL for those who feared cancer reoccurrence (Frick et al, 2018; Hackett and Dowling, 2019; de Wit et al, 2019; Schuit et al, 2020). Attendance at an advanced practitioner-led clinic following treatment has been shown to improve information recall on potential toxicities and available help for survivors (Viscuse et al, 2019). However, attendance did not improve overall health, psychological distress or QoL, offering contradictory findings on the benefit of specialist contact in survivorship. The structure of CNS-led survivorship programmes was also reported as an interruption to the return to the routines and practices survivors had prior to their cancer diagnosis (Madsen and Handberg, 2019). Returning to clinics within a hospital setting was deemed to be traumatising and caused participants to feel as if they were still in treatment (Taylor et al, 2018; Hackett and Dowling, 2019). This offers an explanation as to why some survivors of lymphoma do not participate in cancer survivorship care, and how attendance at clinics may not improve QoL. Further research may be needed into survivorship care that preserves normal everyday life, as this may improve participation (Madsen and Handberg, 2019).

Focus is also needed on creating awareness among survivors of the management of potential late effects, and the purpose and content of post-treatment support, as further analysis of these studies showed that many participants were not given information on the risks of long-term health issues, suggesting that patients did not have all of the information required at the end of treatment (Madsen and Handberg, 2019). If the risks of adverse effects are explained before the end of treatment, survivors of lymphoma will have the information needed to make decisions with a full understanding of consequences, which may combat this barrier to participation in survivorship care.

Hathiramani et al (2019) studied the impact of a CNS-led home-based intervention, finding that 86.7% of participants (n=30) found it a positive experience, stating that the advice and encouragement received aided recovery. Therefore home-based clinics may be a beneficial model of survivorship care for those who fear hospital attendance as contact with a specialist is still provided. However, 14.3% of participants (n=5) found that the intervention did not aid recovery as they either had no issues that needed support, or did not have time to commit to the programme, demonstrating that individual differences will influence preference for support in survivorship, and that one model will not fit all survivors of lymphoma. Findings across the literature also demonstrated that differences in national guidelines for the treatment of patients with lymphoma influenced the likelihood of survivors making contact with specialists in the future (Arts et al, 2018). Not all survivors are receiving the recommended support, screenings and testing in early survivorship, highlighting that there is a gap in the delivery of post-treatment care, regardless of recommendations (Hahn et al, 2019). Therefore, further research into the reasoning behind this may help improve services and ensure that survivors are receiving the best standard of care.

Primary care involvement

Support from primary care was demonstrated throughout the literature. Compaci et al (2015) studied the effect of the Ambulatory Medical Assistance – After Cancer (AMA-AC) model, a shared-care surveillance programme consisting of quarterly GP appointments and telephone consultations with a CNS during the first year after completing treatment. This model allowed for effective capturing of physical and psychological issues; however, it proved to be a time-consuming process. This is a potential barrier to this method of support as many survivors have stated that they do not have time for survivorship care due to a desire to return to the life they had before their lymphoma diagnosis (Madsen and Handberg, 2019). Compaci et al (2015) was the only study that explored a shared model of care; a shift from management by haematology specialists to a GP alone was seen over time in Frick et al's (2018) study. Arts et al (2018) found that lymphoma survivors are more likely to contact their GP more frequently than a cancer-free control group, suggesting that there is a required role for primary care in survivorship support (Arts et al, 2018).

Individual differences between survivors have been shown to influence contact with primary care providers. Those with anxiety and depression are more likely to make contact with their GP, and younger survivors are less likely to use the services available (Arts et al, 2018). Younger participants were also associated with a lower QoL, demonstrating that poorer outcomes could be a result of healthcare services being underutilised (Rae et al, 2016). However, this literature review encompasses studies from across the world where public healthcare is not always accessible, suggesting that finance may be an influencing barrier (Ng et al, 2016; Rae et al, 2016). Further research into socioeconomic differences would help to establish the confounding influences over service use.

SCPs were seen across the literature as an aid to communication and care responsibility within the multidisciplinary team (MDT), and a facilitator in discussions between survivors and their GP (Brant et al, 2016; Frick et al, 2018; Taylor et al, 2018; Hackett and Dowling, 2019). However, GPs often reported issues with access to SCPs as links to online GP medical records were not made, or survivors did not bring a copy to GP appointments (Frick et al, 2018; de Wit et al, 2019). This limited collaboration within the MDT, and between health professionals and patients, suggests that poor communication as a result of fragmented systems could contribute towards survivors' needs being unmet. However, one study showed that the provision of care plans directly to primary care providers does not determine discussion of survivorship as SCPs were not always discussed with survivors (Brant et al, 2016; Taylor et al, 2018). Further research into this area may help to reduce this barrier surrounding primary care involvement. Survivors' perceptions of primary care providers were also shown to be a barrier that could impact GPs' access to SCPs; many participants stated that they would not share the content of their SCP with primary care staff due to beliefs that it included irrelevant information, or that their GP would not care about the contents (Brant et al, 2016; Frick et al, 2018).

A positive correlation between care satisfaction and those who had comorbidities was found; survivors with additional health conditions were more likely to discuss their lymphoma SCP with their GP and were more likely to believe that primary care providers will manage their needs as a result (Brant et al, 2016). Participants' perceptions of their physician's level of empathy was also shown to be a significant moderator of physical, psychological and social QoL, suggesting that an empathic stance could help optimise the effectiveness of survivorship care (Parker et al, 2020). Findings across the literature demonstrate that individual differences in survivors' perceptions and healthcare needs can impact the effectiveness of primary care in survivorship. The dynamic nature of confounding variables also highlights the complexity of measuring the impact of survivorship support.

Conclusions

Despite the impact of late effects on QoL, there is a discrepancy between recommended guidelines for the care of lymphoma survivors and peoples' reported experiences (Brant et al, 2016; Frick et al, 2018; Taylor et al, 2018). A lack of information surrounding post-treatment support for survivors was seen across the literature, suggesting that people's needs are not being met (Hackett and Dowling, 2019; Hathiramani et al, 2019). SCPs and CNS-led clinics are an effective way of improving knowledge on late effects, helping to increase survivors' self-efficacy and positivity (McNulty and Nail, 2015; Taylor et al, 2018; Viscuse et al, 2019). Contact with a CNS may provide the structure and reassurance that some individuals require in survivorship, to ensure that all needs are met (Jefford et al, 2017; Hackett and Dowling, 2019). However, clinics can be viewed as an extension of treatment and therefore those who have completed their treatment may be reluctant to attend (Madsen and Handberg, 2019; Hathiramani et al, 2019; Parker et al, 2020). There is limited evidence that care plans directly improve QoL, whereas survivorship clinics have been shown to improve QoL (Jefford et al, 2017; Frick et al, 2018; Parker et al, 2018; Hackett and Dowling, 2019; Viscuse et al, 2019). However, similar findings have been found with wellness rehabilitation clinics ran by general health professionals, suggesting that support from a CNS may not be a necessity in improving survivor outcomes (Viscuse et al, 2019). There is a role for GPs in survivorship, but there are many patient- and provider-related barriers to the effectiveness of this method (Brant et al, 2016; Arts et al, 2018; Frick et al, 2018; Taylor et al, 2018; Hathiramani et al, 2019; Parker et al, 2020). As the majority of research in this field does not focus on a single subtype of haematological cancer, this review combined the findings most related to lymphoma, which may help to improve supportive care interventions in the future.

Recommendations

Further research into the adoption of clinical guidelines and recommendations are required to establish whether lymphoma patients are getting the required support in survivorship (NICE 2016a; 2016b; Macmillan, 2021). Efforts to improve staff knowledge and training surrounding lymphoma survivorship care would help improve survivors' outcomes, and further research into the reasoning behind survivors' underutilisation of after care would increase understanding, which may be influential in future practice (Parker et al, 2018; de Wit et al, 2019). Research exploring the socio-economic differences between survivors would be beneficial, as findings across the literature highlight confounding factors that may influence the use of services (Rae et al, 2016; Arts et al, 2018; Hahn et al, 2019). The findings of this research contribute to the limited knowledge on post-treatment support for adult survivors of lymphoma who have undergone chemotherapy, and draws attention to the need to improve their QoL.

KEY POINTS

• This literature review aimed to understand the types of support available to survivors of lymphoma treatment and their effectiveness
• Survivorship care plans are an effective way of improving the knowledge of GPs and survivors on the late effects of treatment
• Information provision can empower survivors and increase their sense of control
• Contact with a clinical nurse specialist in survivorship may provide the structure and reassurance that some individuals require
• Tailoring care to survivors' needs will help improve outcomes as individual differences can influence the effectiveness of post-treatment support

CPD reflective questions

• Reflect on a patient you have cared for with lymphoma and consider whether they have been provided with information on the late effects of chemotherapy
• Consider the ways in which motivation and empowerment can be improved in survivors of lymphoma
• Consider how the role of clinical nurse specialists in survivorship may support patients at the end of treatment
• Reflect on how you can use your understanding of the different methods of support available to improve the care of lymphoma survivors