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National Guideline Alliance (UK). Non-Hodgkin's Lymphoma: Diagnosis and Management. London: National Institute for Health and Care Excellence (NICE); 2016 Jul. (NICE Guideline, No. 52.)
The number of people achieving long term disease free survival from Non-Hodgkin's Lymphoma (NHL) has increased since the early 1970s. Cancer Research UK 2014 show that while more people are being diagnosed with NHL, especially in older age groups, the 5 year survival rates have now increased to about 60%. The success in treating NHL is bringing about new concerns as more patients achieving long term disease free survival increases the risks of developing delayed or late physical/psychological side effects of treatment.
Chemotherapy and radiotherapy can cause physical problems long after the treatment has ended. Heart damage, peripheral neuropathy, cognitive disorders, second cancers, infertility, chronic tiredness and inability to do day to day tasks are some of the late side effects that can happen after lymphoma treatment. People can also have long term psychological and emotional late effects following NHL treatment, such as depression, anxiety and even post-traumatic stress disorder, affecting families and carers too. The quality of life of long term NHL survivors at 10 years after treatment indicates that up to a quarter of patients surveyed have poor or worsening physical and mental health. This suggests that late effects can continue for many years.
More older people are now diagnosed, treated and achieve long term disease free survival from NHL. This has implications as older people often have other health problems, such as heart disease and diabetes. The 2013 national cancer survey, including lymphoma patients, suggested that cancer treatment makes other health problems worse and reduces quality of life.
There are standard methods of surveillance for late effects and there is also a move away from hospital based follow up. Patients may be discharged earlier but offered an open lymphoma follow up appointment if concerns arise. However, there is concern that the late adverse effects of treatment for NHL could go unrecognised by patients and General Practitioners (GPs), who can be unaware of the increased risks linked to treatment and its effect on mental health.
While late effects monitoring for survivors of paediatric and young adult cancers is better established, it is speculated that late effects surveillance in the United Kingdom for NHL patients is limited and practice varied. As the number of NHL survivors grows, there is scope for nurse led services to support both patients and GPs in the monitoring of late effects and rapid referral to medical teams. There is also scope to link cancer registry data with other national databases to capture specific late effects, such as second cancers or cardiac disease.
Clinical question: What is the effectiveness of surveillance protocols for late adverse effects of treatment in people with non-Hodgkin's lymphoma?
Evidence came from a prospective case series and retrospective cohort study.
Very low quality evidence from one study suggested that waiting times (n=120) were reduced from 65 min (medic-led) to 10 min (nurse-led) and patients satisfaction (n=50) was either higher or similar for nurse-led compared to medic-led survivorship care).
Very low quality evidence from one study with 957 patients reported 75/957 patients had new diagnosis of cardiovascular disease (validated in 57/71 patients: 18 heart failures, 9 myocardial infarctions, 21 arrhythmia, 2 pericarditis, and 10 valvular heart disease. Cumulative incidence of cardiovascular disease at 1, 3, 5, and 7 years was 1.3%, 3.7%, 5.2%, and 7.4%, respectively. Older age was associated with increased risk of overall cardiovascular disease. Gender, radiation therapy, and anthracycline treatment were not associated with the incidence of overall cardiovascular disease. Anthracycline use was associated with development of heart failure and arrhythmia. Radiation was associated with development of arrhythmia. Older age was associated with development of heart failure and arrhythmia.
A literature review of published cost-effectiveness analyses did not identify any relevant papers for this topic. Whilst there were potential cost implications of making recommendations in this area, other questions in the guideline were agreed as higher priorities for economic evaluation. Consequently no further economic modelling was undertaken for this question.
| Recommendations | Provide end-of-treatment summaries for people with non-Hodgkin's lymphoma (and their GPs). Discuss these with the person, highlighting personal and general risk factors, including late effects related to their lymphoma subtype and/or its treatment. Provide information to people with non-Hodgkin's lymphoma when they complete treatment about how to recognise possible relapse and late effects of treatment. At 3 years after a person with non-Hodgkin's lymphoma completes a course of treatment, consider switching surveillance of late effects of treatment to nurse-led or GP-led services. |
|---|---|
| Relative value placed on the outcomes considered | The GC considered detection of treatment-related morbidity (late effects) to be the critical outcome when drafting the recommendations because early detection improves the chance of successfully treating late effects. Other importantant outcomes, overall-survival, cause-specific survival, health-related quality of life, patient preference and psychological well-being, were not reported in the evidence. |
| Quality of the evidence | The quality of the evidence was very low for all reported outcomes as assessed using GRADE. The primary reason for the very low quality of the evidence because of study design (observational, non-comparative) and imprecision. These issues meant that the GC treated the evidence with caution and used their clinical expertise alongside the evidence when making the recommendations. |
| Trade-off between clinical benefits and harms | The GC noted that a significant proportion of patients with NHL will experience treatment-related morbidity and that this can have severe health consequences. The evidence indicated that certain patient and treatment factors were associated with late cardiovascular disease. The GC recognised that in general, management of treatment-related morbidity is a non-specialist issue that can be undertaken by general practitioners, but that prompt treatment of any adverse effects crucially depends on patients acting on any new signs and symptoms that may be related to either treatment or NHL. The GC noted that late effects of treatment typically do not occur in the first 2-3 years after the completion of treatment for NHL. The evidence indicated that cardiovascular effects, can occur sooner (with a cumulative incidence of 3.7% at 3 years) however the GC considered that patients who experience early cardiovascular effects will still be followed up in hospital so this is not likely to present a problem for general practitioners. To highlight to patients and their general practitioners, possible late effects and the importance of acting on them, the GC decided to recommend that end of treatment summaries and late effects risk summaries are offered to patients and their GPs, highlighting personal and general risk factors arising. The GC also recommended based on their experience and evidence about treatment related adverse effects elsewhere in the guideline that self-management education on health and well-being, and possible late effects is offered to all patients on completion of NHL treatment. As the late effects of treatment typically do not occur in the first 2-3 years after the completion of treatment for NHL, the GC decided to recommend nurse-led or GP-led long term surveillance of late effects starting 2-3 years post completion of lymphoma therapy, as the evidence indicated patients were satisfied with nurse-led survivorship care. The GC thought that the benefits of the recommendation to offer training to patients to help them recognise possible relapse and late effects will be that more patients who experience treatment-related morbidity will recognise and act on them at an earlier stage and that this will translate into longer overall survival and better quality of life, although there was no published evidence about this outcome. The GC acknowledged some patients and clinicians may feel that putting the balance of responsibility of long term surveillance on to patients or nurses may not be effective because patients and nurses may not be perceived as having the required level of in-depth information. Although it was not reported in the evidence, the GC thought that some patients may suffer increased anxiety as a result of the responsibility being placed on them and the need to process and understand all the additional information required. The GC thought that discussion of end-of-treatment summaries with patients would help to mitigate anxiety. The GC acknowledged that hospital-based medical surveillance of late effects will become increasingly hard to maintain, as the numbers of people living with long term disease control increase. The GC therefore made recommendations they consider will support patients to self-manage their long term health after NHL, while allowing access back to specialist care via nurses or GPs. The GC considered that the benefits to this approach outweigh the harms by providing capacity to effectively manage more patients and give a better patient experience. |
| Trade-off between net health benefits and resource use | No health economic evidence was identified and no health economic model was built for this topic. The GC estimated that the recommendations may involve a change in practice for some centres. Thus, there may be an increase in costs through increased nurse or GP led surveillance, the provision of end of treatment summaries and the time spent educating patients when they complete treatment. However, through increasing awareness and surveillance, the recommendations should lead to the earlier detection of treatment related morbidity. Thus, it is anticipated that the increased costs associated with the recommendations will be offset by a decrease in costs and QALY improvements due to identifying, and therefore acting upon, treatment-related morbidity earlier. Thus the recommendations were considered likely to be cost-effecitve in cost per QALY terms. |
| Other considerations | The GC considered that the recommendations will involve a moderate change in practice. In regions where the recommendations are not current practice, services will need to be developed for:
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