Perspectives of bereaved relatives of patients with haematological malignancies concerning preferred place of care and death: A qualitative study.

BACKGROUND: People with haematological malignancies have different end-of-life care patterns from those with other cancers and are more likely to die in hospital. Little is known about patient and relative preferences at this time and whether these are achieved. AIM: To explore the experiences and reflections of bereaved relatives of patients with leukaemia, lymphoma or myeloma, and examine (1) preferred place of care and death; (2) perceptions of factors influencing attainment of preferences; and (3) changes that could promote achievement of preferences. DESIGN: Qualitative interview study incorporating 'Framework' analysis. SETTING/PARTICIPANTS: A total of 10 in-depth interviews with bereaved relatives. RESULTS: Although most people expressed a preference for home death, not all attained this. The influencing factors include disease characteristics (potential for sudden deterioration and death), the occurrence and timing of discussions (treatment cessation, prognosis, place of care/death), family networks (willingness/ability of relatives to provide care, knowledge about services, confidence to advocate) and resource availability (clinical care, hospice beds/policies). Preferences were described as changing over time and some family members retrospectively came to consider hospital as the 'right' place for the patient to have died. Others shared strong preferences with patients for home death and acted to ensure this was achieved. No patients died in a hospice, and relatives identified barriers to death in this setting. CONCLUSION: Preferences were not always achieved due to a series of complex, interrelated factors, some amenable to change and others less so. Death in hospital may be preferred and appropriate, or considered the best option in hindsight.

Palliative care specialists' perceptions concerning referral of haematology patients to their services: findings from a qualitative study.

BACKGROUND: Haematological malignancies (leukaemias, lymphomas and myeloma) are complex cancers that are relatively common, affect all ages and have divergent outcomes. Although the symptom burden of these diseases is comparable to other cancers, patients do not access specialist palliative care (SPC) services as often as those with other cancers. To determine the reasons for this, we asked SPC practitioners about their perspectives regarding the barriers and facilitators influencing haematology patient referrals. METHODS: We conducted a qualitative study, set within the United Kingdom's (UK's) Haematological Malignancy Research Network (HMRN: www.hmrn.org ), a population-based cohort in the North of England. In-depth, semi-structured interviews were conducted with 20 SPC doctors and nurses working in hospital, community and hospice settings between 2012 and 2014. Interviews were digitally audio-recorded, transcribed and analysed for thematic content using the 'Framework' method. RESULTS: Study participants identified a range of barriers and facilitators influencing the referral of patients with haematological malignancies to SPC services. Barriers included: the characteristics and pathways of haematological malignancies; the close patient/haematology team relationship; lack of role clarity; late end of life discussions and SPC referrals; policy issues; and organisational issues. The main facilitators identified were: establishment of inter-disciplinary working patterns (co-working) and enhanced understanding of roles; timely discussions with patients and early SPC referral; access to information platforms able to support information sharing; and use of indicators to 'flag' patients' needs for SPC. Collaboration between haematology and SPC was perceived as beneficial and desirable, and was said to be increasing over time. CONCLUSIONS: This is the first UK study to explore SPC practitioners' perceptions concerning haematology patient referrals. Numerous factors were found to influence the likelihood of referral, some of which related to the organisation and delivery of SPC services, so were amenable to change, and others relating to the complex and unique characteristics and pathways of haematological cancers. Further research is needed to assess the extent to which palliative care is provided by haematology doctors and nurses and other generalists and ways in which clinical uncertainty could be used as a trigger, rather than a barrier, to referral.

Risk factors and time to symptomatic presentation in leukaemia, lymphoma and myeloma.

BACKGROUND: UK policy aims to improve cancer outcomes by promoting early diagnosis, which for many haematological malignancies is particularly challenging as the pathways leading to diagnosis can be difficult and prolonged. METHODS: A survey about symptoms was sent to patients in England with acute leukaemia, chronic lymphocytic leukaemia (CLL), chronic myeloid leukaemia (CML), myeloma and non-Hodgkin lymphoma (NHL). Symptoms and barriers to first help seeking were examined for each subtype, along with the relative risk of waiting >3 months' time from symptom onset to first presentation to a doctor, controlling for age, sex and deprivation. RESULTS: Of the 785 respondents, 654 (83.3%) reported symptoms; most commonly for NHL (95%) and least commonly for CLL (67.9%). Some symptoms were frequent across diseases while others were more disease-specific. Overall, 16% of patients (n=114) waited >3 months before presentation; most often in CML (24%) and least in acute leukaemia (9%). Significant risk factors for >3 months to presentation were: night sweats (particularly CLL and NHL), thirst, abdominal pain/discomfort, looking pale (particularly acute leukaemias), and extreme fatigue/tiredness (particularly CML and NHL); and not realising symptom(s) were serious. CONCLUSIONS: These findings demonstrate important differences by subtype, which should be considered in strategies promoting early presentation. Not realising the seriousness of some symptoms indicates a worrying lack of public awareness.

Caring for terminal patients in haematology: the urgent need of a new research agenda.

Although major therapeutic advances have led to improved survival for many hematologic malignancies in recent years, survival remains poor for some disease subtypes and a substantial proportion of patients are ultimately destined to die from their disease and/or related complications. Despite this, there is evidence that patients are not always referred to palliative/home care services as often as those with other cancers, although this situation may be improving in some areas. More research is needed, however, to explore reasons for this and identify whether patients may consequently have unmet needs that impact on their quality of life at this time.

Change in physiological variables in the last 2 weeks of life: an observational study of hospital in-patients with cancer.

BACKGROUND: Recognising dying remains a difficult clinical skill which has gained increasing importance in the United Kingdom since the Neuberger review. Clinical and research methods exist to aid recognition of dying but do not exhibit the level of accuracy required for such an important decision. AIM: To explore change in key clinical parameters as cancer patients near the end of life. DESIGN: This is a retrospective cohort study of terminally ill patients. Data were collected from hospital case-notes. Case-note data were analysed using multilevel modelling to explore absolute values and rates of change of given variables. SETTING/PARTICIPANTS: Hospital in-patients who died from solid-tumour malignancies within a 3-month period in 2009 formed the cohort. The setting was an acute hospital trust in the North of England. RESULTS: A total of 15,337 data points from the case-notes of 102 patients were analysed. There was a clinically and statistically significant deterioration in respiratory function and renal function over the last 2 weeks of life. Heart rate and serum sodium also changed but did not vary greatly from normal limits. White cell parameters, haemoglobin and albumin showed evidence for change over longer periods. CONCLUSION: Results demonstrate statistically and clinically significant change in routinely measured respiratory and renal function variables during the final 2 weeks of life in people dying with cancer. Although useful in acute early warning scores, in a terminally ill patient, relative haemodynamic stability should not be interpreted as reassuring. Further work is needed to understand how these findings apply to the individual or inform other prognostic work.

Place of death in haematological malignancy: variations by disease sub-type and time from diagnosis to death.

BACKGROUND: The reasons patients with haematological malignancies die in hospital more often than those with other cancers is the subject of much speculation. We examined variations in place of death by disease sub-type and time from diagnosis to death, to identify groups of 'at-risk' patients. METHODS: The study is based in the United Kingdom within the infrastructure of the Haematological Malignancy Research Network (HMRN), a large on-going population-based cohort including all patients newly diagnosed with haematological malignancies in the north of England. Diagnostic, demographic, prognostic, treatment and outcome data are collected for each patient and individuals are 'flagged' for death. This study includes all adults (≥18 years) diagnosed 1st September 2004 to 31st August 2010 (n = 10,325), focussing on those who died on/before 31st August 2012 (n = 4829). RESULTS: Most deaths occurred in hospital (65.9%), followed by home (15.6%), nursing home (11%) and hospice (7.5%) and there was little variation by diagnostic sub-type overall. Differences in place of death were, however, observed by time from diagnosis to death, and this was closely related to sub-type; 87.7% of deaths within a month of diagnosis happened in hospital and these largely occurred in patients with acute myeloid leukaemia, diffuse large B-cell lymphoma and myeloma. Patients surviving longer, and particularly beyond 1 year, were less likely to die in hospital and this corresponded with an increase in the proportion of home deaths. CONCLUSIONS: Time from diagnosis to death was clearly a major determinant of place of death and many patients that died within three months of diagnosis did so in hospital. This was closely related to disease sub-type, with early deaths occurring most notable in the more aggressive diseases. This is likely to be due to a combination of factors including acute presentation, rapid disease progression without transition to a palliative approach to care and complications of treatment. Nonetheless, hospital deaths also occurred frequently in indolent diseases, suggesting that other factors were likely to contribute to the large proportion of hospital deaths overall. More evidence is needed to fully understand these complex cancers.

Patient perspectives of 'Watch and Wait' for chronic haematological cancers: Findings from a qualitative study.

PURPOSE: Chronic blood cancers are incurable, and characterised by unpredictable, remitting-relapsing pathways. Management often involves periods of observation prior to treatment (if required), and post-treatment, in an approach known as 'Watch and Wait'. This study aimed to explore patient experiences of 'Watch and Wait'. METHODS: In-depth interviews with 35 patients (10 accompanied by relatives) with chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma or myeloma. Data were analysed using descriptive qualitative techniques. RESULTS: Patient views of Watch and Wait ranged along a continuum, from immediate acceptance, to concern about treatment deferral. Significant ongoing anxiety and distress were described by some, due to the uncertain pathways associated with Watch and Wait. Infrequent contact with clinical staff was said to exacerbate this, as there was limited opportunity to ask questions and seek reassurance. Patients indicated that the impact of their malignancy could be underestimated by clinicians; possibly due to them comparing chronic and acute subtypes. Most patients lacked knowledge of blood cancers. Support from clinicians was considered greater among treated patients, possibly due to increased contact, and many drew on relatives for aid. Most patients were satisfied with their time-allocation with haematology staff, although experiences could be improved by greater access to clinical nurse specialists, counselling services, and community-based facilities. CONCLUSION: Experiences varied. Anxiety about unpredictable futures could be more distressing than any physical symptoms and have a greater impact on quality of life. Ongoing assessment could facilitate identification of difficulties, and is particularly important among individuals without supportive networks.

Incurable but treatable: Understanding, uncertainty and impact in chronic blood cancers-A qualitative study from the UK's Haematological Malignancy Research Network.

OBJECTIVE: Most blood cancers are incurable and typically follow unpredictable remitting-relapsing pathways associated with varying need for treatment, which may be distressing for patients. Our objective was to conduct a qualitative study to explore understanding among patients with such malignancies, including the explanations given by HCPs and the impact of uncertain trajectories, to generate evidence that could guide improvements in clinical practice. METHODS: The study is set within a population-based patient cohort (the Haematological Malignancy Research Network), in which care is delivered across 14 hospitals according to national guidelines. In-depth interviews were conducted with 35 patients with chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma or myeloma; and 10 accompanying relatives. Purposive sampling ensured selection of information-rich participants and the data were interrogated using reflective thematic analysis. RESULTS: Rich data were collected and four themes (11 sub-themes) were identified: 1) Knowledge and understanding of chronic haematological malignancies; 2) Incurable but treatable; 3) Uncertainty about the future; and 4) Treatable (but still incurable): Impact on patients. Patients had rarely heard of blood cancer and many expressed difficulty understanding how an incurable malignancy that could not be removed, was treatable, often for long periods. While some were reassured that their cancer did not pose an immediate survival threat, others were particularly traumatised by the uncertain future it entailed, suffering ongoing emotional distress as a result, which could be more burdensome than any physical symptoms. Nonetheless, most interviewees understood that uncertain pathways were caused by the unpredictability of their disease trajectory, and not information being withheld. CONCLUSIONS: Many participants lacked knowledge about chronic haematological malignancies. HCPs acted to reassure patients about their diagnosis, and while this was appropriate and effective for some, it was less so for others, as the cancer-impact involved struggling to cope with ongoing uncertainty, distress and a shortened life-span.

Haematological malignancy: are patients appropriately referred for specialist palliative and hospice care? A systematic review and meta-analysis of published data.

Haematological malignancies are complex diseases, affecting the entire age spectrum, and having marked differences in presentation, treatment, progression and outcome. Patients have a significant symptom burden and despite treatment improvements for some sub-types, many patients die from their disease. We carried out a systematic review and meta-analysis to examine the proportion of patients with haematological malignancies that received any form of specialist palliative or hospice care. Twenty-four studies were identified, nine of which were suitable for inclusion in the meta-analysis. Our review showed that patients with haematological malignancies were far less likely to receive care from specialist palliative or hospice services compared to other cancers (Risk Ratio 0.46, [95% confidence intervals 0.42-0.50]). There are several possible explanations for this finding, including: ongoing management by the haematology team and consequent strong bonds between staff and patients; uncertain transitions to a palliative approach to care; and sudden transitions, leaving little time for palliative input. Further research is needed to explore: transitions to palliative care; potential unmet patient needs; where patients want to be cared for and die; existing practices in the delivery of palliative and end-of-life care; and barriers to specialist palliative care and hospice referral and how these might be overcome.

Preferred and actual place of death in haematological malignancies: a report from the UK haematological malignancy research network.

OBJECTIVES: Hospital death is comparatively common in people with haematological cancers, but little is known about patient preferences. This study investigated actual and preferred place of death, concurrence between these and characteristics of preferred place discussions. METHODS: Set within a population-based haematological malignancy patient cohort, adults (≥18 years) diagnosed 2004-2012 who died 2011-2012 were included (n=963). Data were obtained via routine linkages (date, place and cause of death) and abstraction of hospital records (diagnosis, demographics, preferred place discussions). Logistic regression investigated associations between patient and clinical factors and place of death, and factors associated with the likelihood of having a preferred place discussion. RESULTS: Of 892 patients (92.6%) alive 2 weeks after diagnosis, 58.0% subsequently died in hospital (home, 20.0%; care home, 11.9%; hospice, 10.2%). A preferred place discussion was documented for 453 patients (50.8%). Discussions were more likely in women (p=0.003), those referred to specialist palliative care (p<0.001), and where cause of death was haematological cancer (p<0.001); and less likely in those living in deprived areas (p=0.005). Patients with a discussion were significantly (p<0.05) less likely to die in hospital. Last recorded preferences were: home (40.6%), hospice (18.1%), hospital (17.7%) and care home (14.1%); two-thirds died in their final preferred place. Multiple discussions occurred for 58.3% of the 453, with preferences varying by proximity to death and participants in the discussion. CONCLUSION: Challenges remain in ensuring that patients are supported to have meaningful end-of-life discussions, with healthcare services that are able to respond to changing decisions over time.

Destined to die in hospital? Systematic review and meta-analysis of place of death in haematological malignancy.

BACKGROUND: Haematological malignancies are a common, heterogeneous and complex group of diseases that are often associated with poor outcomes despite intensive treatment. Research surrounding end-of-life issues, and particularly place of death, is therefore of paramount importance, yet place of death has not been formally reviewed in these patients. METHODS: A systematic literature review and meta-analysis was undertaken using PubMed to identify all studies published between 1966 and 2010. Studies examining place of death in adult haematology patients, using routinely compiled morbidity and mortality data and providing results specific to this disease were included. 21 studies were identified with descriptive and/or risk-estimate data; 17 were included in a meta-analysis. RESULTS: Compared to other cancer deaths, haematology patients were more than twice as likely to die in hospital (Odds Ratio 2.25 [95% Confidence Intervals, 2.07-2.44]). CONCLUSION: Home is generally considered the preferred place of death but haematology patients usually die in hospital. This has implications for patients who may not be dying where they wish, and also health commissioners who may be funding costly end-of-life care in inappropriate acute hospital settings. More research is needed about preferred place of care for haematology patients, reasons for hospital deaths, and how these can be avoided if home death is preferred.

Hodgkin lymphoma detection and survival: findings from the Haematological Malignancy Research Network.

BACKGROUND: Hodgkin lymphoma is usually detected in primary care with early signs and symptoms, and is highly treatable with standardised chemotherapy. However, late presentation is associated with poorer outcomes. AIM: To investigate the relationship between markers of advanced disease, emergency admission, and survival following a diagnosis of classical Hodgkin lymphoma (CHL). DESIGN & SETTING: The study was set within a sociodemographically representative UK population-based patient cohort of ~4 million, within which all patients were tracked through their care pathways, and linked to national data obtained from Hospital Episode Statistics (HES) and deaths. METHOD: All 971 patients with CHL newly diagnosed between 1 September 2004-31 August 2015 were followed until 18th December 2018. RESULTS: The median diagnostic age was 41.5 years (range 0-96 years), 55.2% of the patients were male, 31.2% had stage IV disease, 43.0% had a moderate-high or high risk prognostic score, and 18.7% were admitted via the emergency route prior to diagnosis. The relationship between age and emergency admission was U-shaped: more likely in patients aged <25 years and ≥70 years. Compared to patients admitted via other routes, those presenting as an emergency had more advanced disease and poorer 3-year survival (relative survival 68.4% [95% confidence interval {CI} = 60.3 to 75.2] versus 89.8% [95% CI = 87.0 to 92.0], respectively [P<0.01]). However, after adjusting for clinically important prognostic factors, no difference in survival remained. CONCLUSION: These findings suggest that CHL survival as a whole could be increased by around 4% if the cancer in patients who presented as an emergency had been detected at the same point as in other patients.

Disease-related factors affecting timely lymphoma diagnosis: a qualitative study exploring patient experiences.

BACKGROUND: Expediting cancer diagnosis is widely perceived as one way to improve patient outcomes. Evidence indicates that lymphoma diagnosis is often delayed, yet understanding of issues influencing this is incomplete. AIM: To explore patients' and their relatives' perceptions of disease-related factors affecting time to diagnosis of Hodgkin and non-Hodgkin lymphoma. DESIGN AND SETTING: Qualitative UK study involving patients with indolent and aggressive lymphomas, and their relatives, from an established population-based cohort in the north of England. METHOD: Semi-structured interviews with 35 patients and 15 of their relatives. Interviews were audiorecorded and transcribed, and qualitative descriptive analysis was undertaken. RESULTS: Participant accounts suggest that certain features of lymphoma can impact on patients' and healthcare providers' (HCPs) responses to disease onset. Three characteristics stand out: disease occurrence (rare), manifestation (varied), and investigative options (often inconclusive). Interviewees described how they, and some HCPs, lacked familiarity with lymphoma, seldom considering it a likely explanation for their symptoms. Symptoms reported were highly variable, frequently non-specific, and often initially thought to be associated with various benign, self-limiting causes. Blood tests and other investigations, while frequently able to detect abnormalities, did not reliably indicate malignancy. Interviewees reported the potential for improvements among HCPs in information gathering, communication of uncertainty, and re-presentation advice for non-resolving/progressive health changes. CONCLUSION: This study demonstrates the complex characteristics of lymphoma, perceived by patients as prolonging time to diagnosis, often despite significant effort by themselves, their relatives, and HCPs to expedite this process. The findings also illustrate why simple solutions to delayed diagnosis of lymphoma are lacking.

Haematology nurses' perspectives of their patients' places of care and death: A UK qualitative interview study.

PURPOSE: Patients with haematological malignancies are more likely to die in hospital, and less likely to access palliative care than people with other cancers, though the reasons for this are not well understood. The purpose of our study was to explore haematology nurses' perspectives of their patients' places of care and death. METHOD: Qualitative description, based on thematic content analysis. Eight haematology nurses working in secondary and tertiary hospital settings were purposively selected and interviewed. Transcriptions were coded and analysed for themes using a mainly inductive, cross-comparative approach. RESULTS: Five inter-related factors were identified as contributing to the likelihood of patients' receiving end of life care/dying in hospital: the complex nature of haematological diseases and their treatment; close clinician-patient bonds; delays to end of life discussions; lack of integration between haematology and palliative care services; and barriers to death at home. CONCLUSIONS: Hospital death is often determined by the characteristics of the cancer and type of treatment. Prognostication is complex across subtypes and hospital death perceived as unavoidable, and sometimes the preferred option. Earlier, frank conversations that focus on realistic outcomes, closer integration of palliative care and haematology services, better communication across the secondary/primary care interface, and an increase in out-of-hours nursing support could improve end of life care and facilitate death at home or in hospice, when preferred.

Change in Physiological Variables in the Last Two Weeks of Life: An Observational Study of Hospitalized Adults With Heart Failure.

CONTEXT: Recognition of dying is a difficult task in end-stage heart failure, yet it remains an important clinical skill in providing good palliative care to these patients. OBJECTIVES: To use routinely collected data to explore evidence for physiological change in the final two weeks of life in end-stage heart failure. METHODS: This was a retrospective cohort study of routinely collected data from hospital inpatients dying as a result of heart failure during a one-year period in a U.K. hospital. Data were analyzed using descriptive techniques and multilevel modeling. RESULTS: Results were obtained on 81 patients. Respiratory function (evidenced by falling oxygen saturation and rising respiratory rate) deteriorated by a clinically significant amount in the final two weeks of life (P < 0.001). Renal function (evidenced by rising serum urea and creatinine) also demonstrated a clinically significant deterioration over the same period (P < 0.001 and P = 0.005, respectively). Serum albumin fell over a period of months (P < 0.001). Heart rate and blood pressure did not demonstrate clinically significant change over the same period. CONCLUSIONS: Deteriorating respiratory and renal function may indicate imminent dying in heart failure. A fall in serum albumin may signify poor prognosis over a timescale of weeks to months. Conversely, hemodynamic parameters may remain relatively stable in the final days of life and should not be reassuring in end-stage heart failure patients.

Determinants of hospital death in haematological cancers: findings from a qualitative study.

OBJECTIVES: Current UK health policy promotes enabling people to die in a place they choose, which for most is home. Despite this, patients with haematological malignancies (leukaemias, lymphomas and myeloma) are more likely to die in hospital than those with other cancers, and this is often considered a reflection of poor quality end-of-life care. This study aimed to explore the experiences of clinicians and relatives to determine why hospital deaths predominate in these diseases. METHODS: The study was set within the Haematological Malignancy Research Network (HMRN-www.hmrn.org), an ongoing population-based cohort that provides infrastructure for evidence-based research. Qualitative interviews were conducted with clinical staff in haematology, palliative care and general practice (n=45) and relatives of deceased HMRN patients (n=10). Data were analysed for thematic content and coding and classification was inductive. Interpretation involved seeking meaning, salience and connections within the data. RESULTS: Five themes were identified relating to: the characteristics and trajectory of haematological cancers, a mismatch between the expectations and reality of home death, preference for hospital death, barriers to home/hospice death and suggested changes to practice to support non-hospital death, when preferred. CONCLUSIONS: Hospital deaths were largely determined by the characteristics of haematological malignancies, which included uncertain trajectories, indistinct transitions and difficulties predicting prognosis and identifying if or when to withdraw treatment. Advance planning (where possible) and better communication between primary and secondary care may facilitate non-hospital death.

Myeloma: Patient accounts of their pathways to diagnosis.

BACKGROUND: Pathways to myeloma diagnosis can be prolonged, and are often preceded by multiple GP consultations and emergency presentation. This is the first qualitative study to examine events leading to diagnosis by asking patients about their experiences during this time. METHODS: Set within a UK population-based cohort, semi-structured interviews were conducted with 20 myeloma patients with varying characteristics and pathways, 12 of whom invited their relatives to take part. Interviews were audio-recorded and qualitative analysis undertaken. RESULTS: Pre-diagnostic awareness of myeloma was minimal. Disease onset was typically described as gradual, and health changes vague but progressive, with increasing loss of function. A wide range of symptoms was reported, with the similarity of these to self-limiting conditions failing to raise suspicion of myeloma among patients and GPs. Patients tended to normalise symptoms at first, although all eventually sought GP advice. GPs often initially suggested benign diagnoses, which were sometimes only revised after multiple consultations with persistent/worsening symptoms. Referrals were made to various hospital specialities, and haematology if associated with abnormal blood tests suggestive of myeloma. Once in secondary care, progress towards diagnosis was generally rapid. CONCLUSIONS: Accounts confirmed that pathways to diagnosis could be difficult, largely due to the way myeloma presents, and how symptoms are interpreted and managed by patients and GPs. Recognition of 'normal' health and consultation patterns for the individual could promote appropriate help-seeking and timely referral when changes occur, and may be more effective than raising awareness about the myriad of potential symptoms associated with this disease.

Time-to-diagnosis and symptoms of myeloma, lymphomas and leukaemias: a report from the Haematological Malignancy Research Network.

BACKGROUND: Prior to diagnosis, patients with haematological cancers often have multiple primary care consultations, resulting in diagnostic delay. They are less likely to be referred urgently to hospital and often present as emergencies. We examined patient perspectives of time to help-seeking and diagnosis, as well as associated symptoms and experiences. METHODS: The UK's Haematological Malignancy Research Network (http://www.hmrn.org) routinely collects data on all patients newly diagnosed with myeloma, lymphoma and leukaemia (>2000 annually; population 3.6 million). With clinical agreement, patients are also invited to participate in an on-going survey about the circumstances leading to their diagnosis (presence/absence of symptoms; type of symptom(s) and date(s) of onset; date medical advice first sought (help-seeking); summary of important experiences in the time before diagnosis). From 2004-2011, 8858 patients were approached and 5038 agreed they could be contacted for research purposes; 3329 requested and returned a completed questionnaire. The duration of the total interval (symptom onset to diagnosis), patient interval (symptom onset to help-seeking) and diagnostic interval (help-seeking to diagnosis) was examined by patient characteristics and diagnosis. Type and frequency of symptoms were examined collectively, by diagnosis and compared to UK Referral Guidelines. RESULTS: Around one-third of patients were asymptomatic at diagnosis. In those with symptoms, the median patient interval tended to be shorter than the diagnostic interval across most diseases. Intervals varied markedly by diagnosis: acute myeloid leukaemia being 41 days (Interquartile range (IQR) 17-85), diffuse large B-cell lymphoma 98 days (IQR 53-192) and myeloma 163 days (IQR 84-306). Many symptoms corresponded to those cited in UK Referral Guidelines, but some were rarely reported (e.g. pain on drinking alcohol). By contrast others, absent from the guidance, were more frequent (e.g. stomach and bowel problems). Symptoms such as tiredness and pain were common across all diseases, although some specificity was evident by sub-type, such as lymphadenopathy in lymphoma and bleeding and bruising in acute leukaemia. CONCLUSIONS: Pathways to diagnosis are varied and can be unacceptably prolonged, particularly for myeloma and some lymphomas. More evidence is needed, along with interventions to reduce time-to-diagnosis, such as public education campaigns and GP decision-making aids, as well as refinement of existing Referral Guidelines.