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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.)
People living with non-Hodgkin's lymphoma (NHL) or supporting someone who has NHL must have access to the right information at the right time. Including information about the diagnostic tests, disease itself, treatment options, complications associated with NHL, available clinical trials and practical issues. They must cope with the stresses created by a potentially physically demanding illness and health impairment. These effects may be magnified if the right information and support is not available.
In 2004, the National Audit Office found that nearly 40% of cancer patients did not receive information they required. National approaches by leading cancer charities and the National Cancer Action Team (NCAT) have aimed to improve this. There is no standard agreement or approach how best to provide the full array of information needed at various times during and after the cancer treatment. However, it is documented that information should be tailored to the individual needs. It is evident that satisfaction improves and anxiety decreases when information is provided at the right time.
There are many approaches to informing cancer patients about their diagnosis, disease and treatment. The key is to ensure that the right information is in a format accessible to the patient (e.g. paper materials, electronic materials, visual and audio materials). This is of particular relevance for patients with NHL due to the fact there are a number of differing types of NHL, there is the possibility of transformation to a different type of NHL and treatment may be influenced by co-morbidities. Information related to the practical issues is generic and this must not be overlooked as evidence indicates that issues such as finance and work concerns are as important as the disease and treatment itself to patients and carers. A system of providing such information that is up to date, accurate, and reliable and in a language that carers and patients can read and understand needs to be agreed and monitored.
Clinical question: What are the information and support needs of patients with a diagnosis of non-Hodgkin's lymphoma and their carers?
Evidence came from 27 cross-sectional studies, four prospective cohort studies and one retrospective case series. Two studies were qualitative in design the remainder were quantitative survey studys of patients with NHL. The overall quality of the evidence was moderate.
Analysis of the subgroup of 2530 patients with non-Hodgkin's lymphoma included in the 2014 Cancer Patient Experience Survey suggested the following (see Appendix H):
Participants reported moderate levels of satisfaction (∼60%) with the information they were given during their treatment (Husson et al. 2013, Netherlands; Oerlemans et al., 2012, Netherlands), with the majority of participants (71%) reporting that their physician always spent enough time during their visits and appointments (Arora et al. 2013, USA).
Participant's information needs were individualistic. Whilst, the majority of participants (59%) reported that they considered their treatment decision making to be collaborative (whereby the doctor and they shared responsibility for any decisions; Poe et al., 2012) and felt that they were at the heart of the communication process and information exchanges made (Wall et al., 2011, UK) there were some participants (13%) who preferred for their doctor to make all their treatment decisions (Poe et al., 2012, USA), actively avoided seeking out information for fear of further upset to themselves or their family (Wall et al. 2011, UK).
Feeling informed and possessing adequate knowledge about investigations and treatments being undertaken was vital to coping with the process.
Participants reported using previous practical knowledge to make sense of what was happening, probably due to their experience undergoing similar investigations (e.g. ultrasounds, blood tests) or from other people's accounts of such investigations (Wall et al. 2011, UK).
Patients undergoing protective isolation as a consequence of receiving high-dose chemotherapy, who felt well-informed for the need for the protective environment, appeared to cope better with the experience, with knowledge having an mediating effect on the experience which was viewed as ‘something that I have to do if I want to get well’ (Campbell et al. 1999, USA). Knowledge of the remission length and levels of treatment toxicity were important attributes considered by patients with follicular lymphoma when deciding whether or not to go for transplantation, with participants requiring 0.6 years absolute increase in progression-free survival or a 6% absolute increase in 5-year progression-free survival in order to accept the toxicity of autologous stem cell transplantation (relative to chemotherapy) but 3.9 years increase in progression-free survival or a 39% increase in 5-year progression-free survival in order to accept the toxicity of allogeneic stem cell transplantation (relative to chemotherapy) (Shafey et al. 2011, Canada).
Whilst the majority of participants were willing to discuss any physical functioning issues (93.9%), daily functioning issues (81.6%) and emotional functioning issues (75.5) they may have or had with their doctor, less than half of participants were willing to discuss social (42.8%) or sexual (48.9%) functioning issues with their doctor with the majority of the remaining participants stating that they would prefer not to discuss these issues with their doctor. Participants believed that it was not their doctor's job to discuss these issues (47% social functioning issues, 30% sexual functioning issues) with almost 30% stating that they would not feel comfortable discussing these issues with their doctor. However, less than 20% of participants reported that they felt nothing could be done to help with social (11%) or sexual (16%) functioning issues, suggesting that they may like to access help with these issues but are either unsure whether their doctor is the correct person to discuss these issues with (Arora et al., 2013, USA).
Around 30% of patients and survivors would have wanted more information provision during treatment (Husson et al. 2013; Oerlemans et al., 2012; Jonker-Pool et al., 2004, Netherlands), with 22% still reporting an unmet information need one year after the completion of their initial survey (Jonker-Pool et al., 2004, Netherlands).
Patients currently receiving treatment wanted more information concerning financial issues and emotional health compared to patients not actively in treatment and those experiencing a recurrence reported significantly higher unmet needs regarding financial concern, access and continuity of care and emotional health compared to participants without recurrence (or unsure if they have a recurrence, p<0.05: Hall et al. 2014, Australia).
28.8% of survivors of adolescent and young adult NHL reported a need for additional information on how to talk about cancer with their family and friends and half wanting additional information on ways to help them meet other adolescents or young adult cancer patients/survivors (Kent et al. 2013).
28% of adult survivors of aggressive NHL wanted more information about factors associated with sexual functioning after a cancer diagnosis and 13% wanted more information about fertility issues, with the greatest reported need for more fertility-related information from younger participants (23-40 years old, p<0.01), non-white-race participants (p<0.01) and participants that perceived their quality of care received as less-than excellent (p<0.05; Hammond et al. 2008, USA). Male participants (p<0.05) and participants who had received a bone marrow/stem-cell transplantation (p<0.05) reported a greater need for more sexual function-related information.
Just over half of participants would have liked to have received exercise counseling and would have felt able to participate in tailored exercise programme. With 80% expressing interest in exercise programmes designed specifically for NHL patients. However, the majority (56.3%) would have preferred to start an exercise programme after treatment was complete (Vallance et al. 2005a, Canada).
30% of participants reported that they had not been offered an appointment to attend a fertility clinic during their cancer treatment with only 8% of those offered reporting that they attended a fertility clinic at some point during or after their treatment (Greaves et al., 2013, UK).
Patients undergoing protective isolation as a consequence of receiving high-dose chemotherapy appreciated having a natural view (which made them feel less shut out from the outside world), being involved in a nurse-led routine (providing an incentive to do things such as get up for bed-making) and felt that having a clock in the room was useful, enabling them to plan their day ahead. The geographical location of the bedrooms was significant to the patients not feeling alone (“I can't see them [nurses and doctors] from here and I can't hear them, and at times it feels as if it's the Marie Celeste [laughing]…nothing happens”). Whilst visitors were instrumental in providing support, many discouraged family and particularly friends from visiting so as to protect themselves from infection. Whilst face-to face contact was discouraged telephone and media were important ways that the patients could maintain contact with the outside world (Campbell et al. 1999). Finally, those who had previously received treatment on the ward where they were in isolation valued the familiarity that they felt towards the nurses, who were commonly portrayed as friends, serving to ameliorate the anxiety associated with the isolation experience (Campbell et al. 1999, UK).
Support from others: Almost half of male NHL participants surveyed reported that they had received insufficient support (48%) during their treatment, although when measured again one year later after treatment, participants no longer reported any unmet additional support (Jonker-Pool et al., 2004, Netherlands). Participants reported that the major emotional support provided to them during decision making came from their family (83.2%; Glover et al., 2011, USA). Informational and instrumental support needs mainly came from nurses (79%) with only 12.6% of participants reporting that this support came from the physician (Glover et al., 2011, USA). Over 90% of participants reported receiving no formal peer or group support during treatment decision making, and whilst it was not reported whether participants wanted to receive support from these avenues, access to a formal peer support group significantly reduced the time between treatment decisions in patients with relapsed Follicular lymphoma considering undergoing stem cell transplantation (p=0.045; Glover et al., 2011, USA).
Psychological impact of treatment decision making: Whilst participants did not report significant conflict or regret surrounding their last treatment decision, they did report that treatment decision making was associated with psychological distress (mild: 57% sample, moderate: 33% sample), anxiety (57% sample) and severe levels of cancer specific distress (37% of the sample scored above average for: avoidance subscale and 27% of the sample scored above average: intrusive subscale, Poe et al., 2012, USA).
Psychological impact of treatment: Undergoing treatment for non-Hodgkin's lymphoma was associated with poorer overall health related quality of life compared to age-matched norms (p<0.01), with patients reporting higher levels of fatigue, dyspnea, sleeping problems, appetite loss and financial problems compared to age-matched norms (p<0.05; Oerlemans et al. 2014, Netherlands). Certain treatments were associated with poorer physical health and mental well-being, with participants treated with R-CHOP14 reporting significantly more often tingling in hands and feet (p<0.05), lower global health status/quality of life (p<0.05), higher levels of fatigue (p<0.01) and a feeling of being slowed down (p<0.05) compared to patients treatment with R-CHOP21 (Oerlemans et al. 2014, Netherlands). Levels of psychological distress (fatigue and depression) increased and health related quality of life decreased (measured over 56 weeks, Jerkeman et al. 2001, Norway) during chemotherapy, with patients receiving CHOP reporting significantly higher levels of fatigue on day 10 compared to day 21 of the treatment cycle and baseline levels (p<0.01; Menshadi et al., 2013, Israel) and patients receiving any chemotherapy reporting significantly higher levels of fatigue and depression on day 7 of the treatment cycle compared to baseline (p<0.05, El-Banna et al., 2004, USA). However, increased levels of fatigue and depression returned to baseline levels two weeks post chemotherapy treatment (Menshadi et al., 2013, Israel [only fatigue measured] El-Banna et al., 2004, USA [fatigue and depression]) and varied during treatment depending on individual coping strategies, with patients who had high levels of learned resourcefulness (use of problem-solving strategies, ability to delay gratification and general belief in one's own ability to regulate internal events) reporting significantly lower levels of treatment-related fatigue (no p-values reported, Menshadi et al., 2013). Health related quality of life scores (except role function) measured at the 56th week of the treatment cycle in the majority of patients returned to baseline levels, comparable to an age-matched population (Jerkeman et al. 2001, Norway).
Vallance et al. (2005b, Canada) reported on patients' levels of exercise engagement during treatment, finding that quality of life and well-being did not differ depending on level of engagement when considering demographic and clinical characteristics.
The majority (>60%) of participants reported that their follow-up care they had received to date was excellent (Forsythe et al. 2014; Arora et al. 2013, USA).
Most survivors reported moderate to low levels of need for additional health information (Forsythe et al., 2014, USA) about cancer treatment information provision, financial concerns, access and continuity of care, relationships and emotional health (measured levels of unmet needs in the past month; Hall et al., 2014, Australia). However, younger participants (<60 years old) reported significantly higher unmet needs (p<0.001: Hall et al., 2014, Australia).
When considering what they would want for their longer-term follow-up care/survivorship care, participants reported that continued screening for a possible return of cancer was their most important factor, with monitoring overall health, nutrition and exercise support, insurance and adequate money to afford such monitoring also important (compared to physicians needs) (Friedman et al. (2010, USA). Participants rated psychosocial issues as less important compared to medical issues, with male survivors rating sexuality and fertility health issues as more important than women (p=0.004) and younger patients at diagnosis (<60 years old at time of diagnosis) rated having their overall health monitored and have care that took into account sexually and fertility, mental health services and financial issues as more important compared to patients who were over 60 years old at diagnosis (all p<0.05). The majority of participants (63%) would want an oncologist and a primary care physician to co-manage their survivorship/longer-term follow-up care.
The majority of participants reported that they were not as interested in sex and that their sex life was less satisfying now compared to prior to their cancer diagnosis, with 30% reporting that they attributed these low satisfaction rates due to their cancer diagnosis (Greaves et al., 2013, UK). Beckjord et al. (2011, USA) reported that survivors with a lower than average health status were less satisfied with their sex life compared to participants reporting an above average health status.
Psychological support: Health related quality of life varied across studies with some reporting that the majority of survivors reported medium/high levels of quality of life (Glaser et al., 2014, UK; Smith et al., 2013, USA; Vissers et al., 2013, Netherlands, Tchen et al., 2002, France) and others reporting lower levels of quality of life, general health perceptions and high levels of psychological distress compared to age-matched normative samples (Van der poel et al., 2014; Oerlemans et al., 2014, Netherlands; Smith et al., 2009, USA; Mols et al., 2007, Netherlands; Tchen et al., 2002, France). One study reported that survivor's reported mental health status was comparable to population norms but their physical function was lower (Jensen et al., 2014, USA). Two follow-up studies reported that 25.5% of survivors report a worsening of health related quality of life (measured at least 7 years post diagnosis) and between 20-33% of survivors report persistent symptoms and worries concerning their health and quality of life (measured at least 1 year after diagnosis, mean: 2.6 years) (Oerlemans et al., 2014, Netherlands; Smith et al., 2013, USA).
Jensen et al. (2014, USA) reported that health related quality of life varied according to participants cognitive health appraisal competencies (Perceived Health Competence Scale and Perceived Personal Control) with participants reporting low levels of health competencies reporting lower levels of physical and mental component summary scores and higher levels of anxiety, depression and fatigue compared to participants who reported high levels of health appraisal competency (p<0.001). Meaningful differences were also identified between survivors with low and medium levels of health competency across all health related quality of life outcomes except mental component summary scores. With the exception of physical component summary scores, greater perceptions of personal control was associated with significantly better quality of life outcomes (p<0.01).
Older participants scored significantly lower on the physical functioning items compared to younger participants (p<0.05 Mols et al., 2007, Netherlands) and reported reduced perceptions of cancer having positively impacted on one's life (Smith et al., 2013, USA). Younger survivors (18-59 years old) reported higher physical functioning scores (p<0.01), higher global health status scores p<0.05), higher levels of financial problems (p<0.01), lower levels of appetite loss (p<0.01) and lower levels of constipation (p<0.05) compared to older survivors (76-85 years old) with survivors aged between 60-75 years reporting higher global health status scores (p<0.05) and low levels of appetite loss (p<0.01) compared to survivors aged between 76-85 years old (Van der Poel et al., 2014, Netherlands). Finally, Kourkoukis et al. (2004, Canada) reported that older survivors (>65 years) reported more concern about how they consider their appearance to others (p<0.05), more impact of general toxicity (p<0.01) and the importance of their faith (p<0.01) compared to younger patients (≤65 years). Younger patients reported more concern about sex/intimacy issues compared to older patients (p<0.01). However, the authors doubted the differences reflected true differences in quality of life due to multiple comparisons increasing the likelihood of finding spurious differences.
Greater number of comorbidities was a significant predictors of lower physical component scores measured at follow-up (p<0.01) (Smith et al., 2013, USA). In addition, compared to participants with no additional long-term conditions, the presence of one or two or more long-term conditions was significantly associated with lower quality of life scores, poorer outcomes on the social difficulties inventory (SD) and the functional assessment of cancer therapy (lymphoma items: p<0.001: Glaser et al., 2013, UK), poorer physical functioning (p<0.05) and more pain (p<0.01: Mols et al., 2007, Netherlands).
Survivors who reported a greater negative impact on their life at follow-up were more likely to have undergone a transplant (Smith et al., 2013, USA), whereas survivors who had received chemotherapy were more likely to report lower scores on psychological well-being, social well-being and total quality of life (p<0.01; Mols et al., 2007, Netherlands).
Participants who were employed reported being more vital and had better mental well-being scores compared to participants not working (p<0.01: Mols et al., 2007, Netherlands).
Longer time since diagnosis was positively associated with social (p<0.01) and psychological well-being (p<0.05: Mols et al., 2007, Netherlands).
Survivors who report good levels of social support were more likely to report greater perceptions of cancer having positively impacted on one's life at follow-up (Smith et al., 2013, USA).
Compared to participants in remission, participants currently in active treatment, experiencing a recurrence or who were not sure about their disease status had increased odds of reporting lower quality of life and poorer outcomes on the social difficulties inventory (SD) and the functional assessment of cancer therapy (lymphoma items) (p<0.001: Glaser et al., 2013, UK).
Higher levels of reported physical activity were associated with increased quality of life in survivors, with each additional day of physical activity reducing the odds of lower quality of life score by 9% (Glaser et al., 2013, UK). However, Vallance et al. (2005b, Canada) reported that survivors post treatment exercise levels were not associated with health related quality of life when considering demographic and clinical factors.
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 | To help people with non-Hodgkin's lymphoma (and their family members or carers as appropriate) to make decisions about care, follow the recommendations in the NICE guidelines on patient experience in adult NHS services, improving outcomes in haematological cancers – the manual (patient-centred care), improving supportive and palliative care for adults with cancer and care of dying adults in the last days of life. Pay particular attention to the following areas:
Ensure that people with non-Hodgkin's lymphoma have:
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| Relative value placed on the outcomes considered | The GC considered the information and support needs reported by patients and their carers, patient experience and treatment decision making to be the critical measures of information and support needs of patients with a diagnosis of non-Hodgkin's lymphoma and their carers. |
| Quality of the evidence | The overall quality of the evidence was assessed as moderate using the NICE qualitative study and cohort study checklists. The included qualitative studies generally used appropriate methods and analysis and provided rich data, however recall bias was a potential issue. Some of the cross sectional survey studies had potential for recall bias, some had low response rates and some used non-validated measures. These survey studies were included because they provided information about the scale and relative importance of information and support needs. |
| Trade off between clinical benefits and harms | There was a lack of evidence about information and support needs during palliative care for people with NHL. However the GC noted that recommendations on information and support needs during end of life care were adequately covered by other published NICE guidance (CSG4: Improving supportive and palliative care for adults with cancer) and decided not to make further recommendations in this area Based upon the evidence review, the results of the 2014 National Cancer Patient Experience Survey and their own experience, the GC identified a number of key issues of particular unmet needs for people with NHL which warranted recommendations. These included:
Uncertainty around rates of transformation was highlighted in the evidence as a particularly important issue to people with low grade NHL, and the GC agreed based on their consensus and experience, that a recommendation should be added to explain this likelihood to patients. Several issues were identified from the 2014 National Cancer Patient Experience Survey for people diagnosed with NHL. These included:
The GC considered the benefits of the recommendations would include better informed patients, with an increased likelihood of better quality of life, less anxiety and potential for earlier identification of recurrence. Although discussions about transformation and late-effects could increase anxiety for some patients, the GC consensus was that the recommendations for better informed patients and carers would improve their experience and the benefits outweighed the relatively small risks that had been identified. |
| Trade off between net health benefits and resource use | No health economic evidence was identified and no health economic model was developed for this topic. The GC noted that it is difficult to know whether the recommendations would require an increased resource use, as it depends upon the time currently spent discussing the highlighted issues with patients. However, it is a possibility that the provision of additional information and discussion could lead to an increase in consultation time. However, the cost associated with spending this additional time was thought to be justified by the benefits of giving patients better knowledge about exercise, lifestyle, late effects and a named key worker. These improvements in patient experience would be expected to translate into QALY gains. In addition, it was thought that they could even lead to cost savings in some instances. For example, if providing more information leads to the earlier detection of recurrence then there could be cost savings associated with this. Therefore, even if the provision of more information is more costly, the GC thought it is likely to be cost-effective in cost per QALY terms. |
| Other considerations | The GC thought that there would only be a modest change in practice as most MDTs are providing the majority of these information and support services already. No equalities issues were identified. |
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