'It's not meant to be for life, but it carries on': a qualitative investigation into the psychosocial needs of young retinoblastoma survivors.

OBJECTIVE AND DESIGN: Retinoblastoma (Rb) is a rare childhood eye cancer, with 45% of individuals impacted by heritable disease and the remainder impacted non-heritably. The condition can leave survivors with life-long psychological and social challenges. This qualitative study examined the psychosocial needs of teenagers and young adults living beyond Rb. SETTING: A qualitative, exploratory study was conducted using focus groups with teenagers and interviews with young adults. Participants were recruited via the Childhood Eye Cancer Trust and the two national Rb treatment centres in the UK. Reflexive thematic analysis was used to analyse data using exploratory and inductive methods. PARTICIPANTS: 32 young survivors of Rb (10 heritable, 21 non-heritable, 1 unknown; 23 unilateral, 9 bilateral) aged between 13 and 29 years (12 male, 20 female). RESULTS: Data were rich and spanned the life course: three key themes were generated, containing eight subthemes. Theme 1 describes participants' experiences of childhood and trauma, including survivor guilt, memories from treatment and impact on personality. Theme 2 focuses on the challenges of adolescence, including the psychological impact of Rb, the impact on identity, and the sense of normality and adaptation to late effects. The third theme considered adulthood and the development of acceptance, a state of being widely considered unachievable during childhood, as well as the 'work' needed to feel supported, including seeking out information, peer support and therapeutic strategies. CONCLUSIONS: This study provides in-depth insight into the experiences of life beyond Rb. Findings highlight the need for specific psychosocial interventions informed by codesign.

Lymphoid blood cancers, incidence and survival 2005-2023: A report from the UK's Haematological Malignancy Research Network.

BACKGROUND: Population-based information on cancer incidence and outcome are required to inform clinical practice and research; but contemporary data are lacking for many lymphoid cancer subtypes. METHODS: Set within a socio-demographically representative UK population of ∼4 million, data are from an established UK patient cohort (N = 22,414 diagnoses). Information on incidence (crude and age-standardised) and survival (overall and net) is presented for > 40 subtypes. RESULTS: The median diagnostic age was 69.9 years (interquartile range 59.1-78.3), but unlike many other cancers, lymphoid malignancies can be diagnosed at any age; different subtypes dominating at different ages. Males were more likely to be diagnosed than females (age-standardised sex rate ratio: 1.55 (95% Confidence Interval: 1.50,1.59)), and most subtypes had a male predominance, some more than three-fold (e.g. Burkitt lymphoma 3.26 (2.42, 4.40)). Five-year net survival estimates varied hugely, ranging from 97.4% (95% CI: 56.5, 99.9) in patients with hairy cell leukaemia to 31.6% (95% CI: 2.5, 69.8) in those with T-cell prolymphocytic leukaemia. No significant sex difference in survival were observed for the majority of diagnoses; one exception being classical Hodgkin lymphoma, where males had a higher mortality (Excess Mortality Ratio: 1.44 (95% CI: 1.11, 1.87)). An improvement in survival over time was observed for some, but not all, of the major diagnostic groups. CONCLUSIONS: Marked incidence and survival variations by subtype, sex and age confirm the heterogeneity of lymphoid neoplasms and highlight the importance of accurately characterising disease entities. Despite recent improvements, routine cancer registration of lymphoid neoplasms remains challenging and new issues continue to emerge; including the lack of an international consensus on classification and the recording of progressions and transformations. Furthermore, the increasing need for additional molecular and genomic information required for accurate classification is likely to impact negatively on the quality of cancer registration data, especially in low income countries.

Cohort profile: the United Kingdom Childhood Cancer Study (UKCCS) - a UK-wide population-based study examining the health of cancer survivors.

PURPOSE: The United Kingdom Childhood Cancer Study's (UKCCS's) matched cohort was established to examine the longer term morbidity and mortality of individuals previously diagnosed with cancer before 15 years of age, comparing future healthcare patterns in 5-year cancer survivors to baseline activity seen in age- and sex-matched individuals from the general population. PARTICIPANTS: Predicated on a national childhood cancer case-control study conducted in the early 1990s (4430 cases, 9753 controls) in England, Scotland and Wales, the case population comprises 3125 cancer survivors (>5 years), and the control population 7156 age- and sex-matched individuals from the general population who did not have cancer as a child. Participants are now being followed up via linkage to national administrative healthcare databases (deaths, cancers and secondary care hospital activity). FINDINGS TO DATE: Enabling the creation of cohorts with minimal selection bias and loss to follow-up, the original case-control study registered all newly diagnosed cases of childhood cancer and their corresponding controls, regardless of their family's participation. Early findings based on the registered case population found marked survival variations with age and sex across subtypes and differences with deprivation among acute lymphoblastic leukaemia (ALL) survivors. More recently, comparing the health-activity patterns of the case and control populations revealed that survivors of childhood ALL experienced excess outpatient and inpatient activity across their teenage/young adult years. Adding to increased risks of cancer and death and involving most clinical specialties, excesses were not related to routine follow-up monitoring and showed no signs of diminishing over time. FUTURE PLANS: With annual linkage updates, the UKCCS's maturing population-based matched cohorts provide the foundation for tracking the health of individuals through their lifetime. Comparing the experience of childhood cancer survivors to that of unaffected general-population counterparts, this will include examining subsequent morbidity and mortality, secondary care hospital activity and the impact of deprivation on longer term outcomes.

Chronic myeloid leukaemia: A qualitative interview study exploring disease impact from patient and practitioner perspectives.

PURPOSE: Improvements in chronic myeloid leukaemia treatment mean it is now relevant to examine the experiences of living with this cancer over a lifetime. This qualitative study aimed to investigate the impact of chronic myeloid leukaemia, from patient and healthcare practitioner perspectives. METHODS: The research was set within the UK's Haematological Malignancy Research Network; a population-based cohort of patients newly diagnosed with blood cancer, treated at one of fourteen hospitals. Purposive sampling led to interviews with seventeen patients and thirteen health care practitioners. Data were analysed using thematic analysis. RESULTS: Two analytical themes, "Significant impact of disease and treatment" and "Mediators of the impact of disease and treatment", and six sub-themes, were derived from patient interviews and supported with data from practitioners. Chronic myeloid leukaemia was described by patients as having significant widespread impact, which could be mediated by their knowledge, social support, and the quality of healthcare systems. Practitioners reflected patient accounts, but could underestimate the impact of this cancer. They generally viewed chronic myeloid leukaemia as less complex, severe and impactful than acute blood cancers; a message that reassured patients at diagnosis, but could later unintentionally contribute to difficulties discussing side effects and struggles to cope. CONCLUSION: Chronic myeloid leukaemia may significantly impact individuals, particularly as it is experienced over the lifetime. Greater understanding and discussion of the breadth and extent to which patients are affected, including potential mediators, could enhance clinical care.

Experiences and preferences for psychosocial support: a qualitative study exploring the views of patients with chronic haematological cancers.

OBJECTIVES: Patients with chronic haematological cancers are often treated on a relapsing-remitting pathway, which may extend for many years. Such diagnoses are associated with uncertainties that often cause anxiety and distress, meaning patients (and families) are susceptible to potentially prolonged emotional difficulties, across the cancer journey. Experiences and preferences regarding psychosocial needs and support over time are relatively unexplored, which this study aimed to address. SETTING AND DESIGN: Set within the UK's Haematological Malignancy Research Network (an ongoing population-based cohort that generates evidence to underpin improved clinical practice) a qualitative, exploratory study was conducted, using semistructured interviews. Reflexive thematic analysis was used to assess the interview data via an exploratory, inductive approach, underpinned by the research questions. PARTICIPANTS: Thirty-five patients were included with chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma or myeloma; 10 of whom were interviewed alongside a relative. RESULTS: Five themes were identified from the data: (1) accessing support, (2) individual coping behaviour affecting support preferences, (3) divergent and fluctuating thoughts on patient support forums, (4) the role, influence and needs of family and friends and (5) other sources of support and outstanding needs. Findings suggest that patients' individual attitudes towards support varied over time. This also influenced whether support was perceived to be available, and if it was then used. CONCLUSION: This study highlighted the variation in preferences towards psychosocial support among patients with chronic haematological cancers. As patients can live for many years with significant emotional difficulties, they may benefit from frequent monitoring of their psychosocial well-being, as well as signposting to holistic support, if this is needed.

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.

An Economic Model to Establish the Costs Associated With Routes to Presentation for Patients With Multiple Myeloma in the United Kingdom.

OBJECTIVES: Patients with myeloma often face significant diagnostic delay, with up to one-third of UK patients diagnosed after an emergency presentation (EP). Compared with other routes, patients presenting as an emergency have more advanced disease, increased complications, and poorer prognosis. METHODS: An economic model was developed using a decision-tree framework and lifetime time horizon to estimate costs related to different presentation routes (EP, general practitioner [GP] 2-week wait, GP urgent, GP routine, and consultant to consultant) for UK patients diagnosed as having myeloma. After diagnosis, patients received one of 3 first-line management options (observation, active treatment, or end-of-life care). Inputs were derived from UK health technology assessments and targeted literature reviews, or based on authors' clinical experience where data were unavailable. Active treatment, complication, and end-of-life care costs were included. RESULTS: The average per-patient cost of treating myeloma (across all routes) was estimated at £146 261. The average per-patient cost associated with EP (£152 677) was the highest; differences were minimal compared with GP 2-week wait (£149 631) and consultant to consultant (£147 237). GP urgent (£140 025) and GP routine (£130 212) were associated with marginally lower costs. Complication (£42 252) and end-of-life care (£11 273) costs were numerically higher for EP than other routes (£25 021-£38 170 and £9772-£10 458, respectively). CONCLUSIONS: An economic benefit may be associated with earlier diagnosis, gained via reduced complication and end-of-life care costs. Strategies to expedite myeloma diagnosis and minimize EPs have the potential to improve patient outcomes and may result in long-term savings that could offset any upfront costs associated with their implementation.

Excess morbidity and mortality among survivors of childhood acute lymphoblastic leukaemia: 25 years of follow-up from the United Kingdom Childhood Cancer Study (UKCCS) population-based matched cohort.

OBJECTIVES: To examine morbidity and mortality among teenagers and young adults (TYAs) previously diagnosed with acute lymphoblastic leukaemia (ALL) in childhood, and compare to the general TYA population. DESIGN: National population-based sex-matched and age-matched case-control study converted into a matched cohort, with follow-up linkage to administrative healthcare databases. SETTING: The study population comprised all children (0-14 years) registered for primary care with the National Health Service (NHS) in England 1992-1996. PARTICIPANTS: 1082 5-year survivors of ALL diagnosed<15 years of age (1992-1996) and 2018 unaffected individuals; followed up to 15 March 2020. MAIN OUTCOME MEASURES: Associations with hospital activity, cancer and mortality were assessed using incidence rate ratios (IRR) and differences. RESULTS: Mortality in the 5-year ALL survivor cohort was 20 times higher than in the comparison cohort (rate ratio 21.3, 95% CI 11.2 to 45.6), and cancer incidence 10 times higher (IRR 9.9 95% CI 4.1 to 29.1). Hospital activity was increased for many clinical specialties, the strongest associations being for endocrinology; outpatient IRR 36.7, 95% CI 17.3 to 93.4 and inpatient 19.7, 95% CI 7.9 to 63.2 for males, and 11.0, 95% CI 6.2 to 21.1 and 6.2 95% CI 3.1 to 13.5, respectively, for females. Notable excesses were also evident for cardiology, neurology, ophthalmology, respiratory medicine and general medicine. Males were also more likely to attend gastroenterology; ear, nose and throat; urology; and dermatology, while females were more likely to be seen in plastic surgery and less likely in midwifery. CONCLUSIONS: Adding to excess risks of death and cancer, survivors of childhood ALL experience excess outpatient and inpatient activity across their TYA years, which is not related to routine follow-up monitoring. Involving most clinical specialties, associations are striking, showing no signs of diminishing over time. Recognising that all survivors are potentially at risk of late treatment-associated effects, our findings underscore the need to take prior ALL diagnosis into account when interpreting seemingly unrelated symptoms later in life.

Treatment decision making (TDM): a qualitative study exploring the perspectives of patients with chronic haematological cancers.

OBJECTIVES: Haematological malignancies are the fifth most common cancer in the UK, with chronic subtypes comprising around a third of all new diagnoses. These complex diseases have some similarities with other cancers, but often require different management. Surgical resection is not possible, and while some are curable with intensive chemotherapy, most indolent subtypes are managed with non-aggressive intermittent or continuous treatment, often over many years. Little is known about the views of patients with chronic haematological cancers regarding treatment decision making (TDM), a deficit our study aimed to address. SETTING AND DESIGN: Set within the Haematological Malignancy Research Network (HMRN: www.hmrn.org), an ongoing population-based cohort that provides infrastructure to support evidence-based research, HMRN data were augmented by qualitative information from in-depth interviews. Data were analysed for thematic content, combining inductive and deductive approaches. Interpretation involved seeking meaning, salience and connections within data. PARTICIPANTS: Thirty-five patients with four chronic subtypes: chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma, and myeloma. Ten relatives were present and contributed to varying extents. RESULTS: Five themes were discerned: (1) Preference for clinician recommendations; (2) Factors implicated in patient involvement in TDM; (3) Perceptions of proactive/non-proactive approaches to TDM; (4) Experiences of TDM at various points in the disease trajectory; (5) Support from others. Our principal finding relates to a strong preference among interviewees for treatment recommendations from haematologists, based on trust in their expertise and perceptions of empathetic patient-clinician relationships. CONCLUSION: Interviewees wanted to be involved in TDM to varying extents, contingent on complex, inter-related factors, that are dynamic and subject to change according to differing clinical and personal contexts. Patients may benefit from clinicians assessing their shifting preferences for involvement on multiple occasions. Strong preferences for acceptance of recommendations was associated with cancer complexity, trust in clinician expertise and positive perceptions of patient-clinician relationships.

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.

Health impact of monoclonal gammopathy of undetermined significance (MGUS) and monoclonal B-cell lymphocytosis (MBL): findings from a UK population-based cohort.

OBJECTIVE: To examine mortality and morbidity patterns before and after premalignancy diagnosis in individuals with monoclonal gammopathy of undetermined significance (MGUS) and monoclonal B-cell lymphocytosis (MBL) and compare their secondary healthcare activity to that of the general population. DESIGN: Population-based patient cohort, within which each patient is matched at diagnosis to 10 age-matched and sex-matched individuals from the general population. Both cohorts are linked to nationwide information on deaths, cancer registrations and Hospital Episode Statistics. SETTING: The UK's Haematological Malignancy Research Network, which has a catchment population of around 4 million served by 14 hospitals and a central diagnostic laboratory. PARTICIPANTS: All patients newly diagnosed during 2009-2015 with MGUS (n=2193) or MBL (n=561) and their age and sex-matched comparators (n=27 538). MAIN OUTCOME MEASURES: Mortality and hospital inpatient and outpatient activity in the 5 years before and 3 years after diagnosis. RESULTS: Individuals with MGUS experienced excess morbidity in the 5 years before diagnosis and excess mortality and morbidity in the 3 years after diagnosis. Increased rate ratios (RRs) were evident for nearly all clinical specialties, the largest, both before and after diagnosis, being for nephrology (before RR=4.29, 95% CI 3.90 to 4.71; after RR=13.8, 95% CI 12.8 to 15.0) and rheumatology (before RR=3.40, 95% CI 3.18 to 3.63; after RR=5.44, 95% CI 5.08 to 5.83). Strong effects were also evident for endocrinology, neurology, dermatology and respiratory medicine. Conversely, only marginal increases in mortality and morbidity were evident for MBL. CONCLUSIONS: MGUS and MBL are generally considered to be relatively benign, since most individuals with monoclonal immunoglobulins never develop a B-cell malignancy or any other monoclonal protein-related organ/tissue-related disorder. Nonetheless, our findings offer strong support for the view that in some individuals, monoclonal gammopathy has the potential to cause systemic disease resulting in wide-ranging organ/tissue damage and excess mortality.

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.

Experiences of living with chronic myeloid leukaemia and adhering to tyrosine kinase inhibitors: A thematic synthesis of qualitative studies.

PURPOSE: To investigate the experiences of adults living with chronic myeloid leukaemia and treated with tyrosine kinase inhibitors, with particular reference to factors influencing adherence. METHODS: A thematic synthesis of all published qualitative studies examining adults with chronic myeloid leukaemia, receiving tyrosine kinase inhibitors. Eligible publications were identified by searching five electronic databases using defined criteria. The synthesis involved complete coding of extracted data and inductive theme development. RESULTS: Nine studies were included and three overarching themes defined. Overarching themes were: 1) Disease impacts whole life; 2) Disease management strategies; and 3) Valued aspects of care. Side-effects often required physical and psychological adaptation. Patients developed individual decision-making processes to promote adherence and manage side effects. Unintentional non-adherence occurred due to forgetfulness and system failures. Intentional omission also occurred, which together with side effects, was unlikely to be reported to healthcare professionals (HCPs). HCP reassurance about missed doses could reinforce non-adherence. Information needs varied over time and between individuals. Knowledge among patients about treatment was often lacking and could lead to misunderstandings. Patients valued psychological support from HCPs and suggested an individualised approach, facilitating discussion of symptoms, adherence and their perspectives about living with chronic myeloid leukaemia, would improve care. CONCLUSIONS: Patients with chronic myeloid leukaemia experienced significant side-effects from treatment and changes to their psychological and physical well-being. They developed their own strategies to manage their disease and treatment. This should be recognised in interventions to improve education, support and the delivery of care that is compassionate and adequately resourced.

'Unpacking' pathways to lymphoma and myeloma diagnosis: Do experiences align with the Model of Pathways to Treatment? Findings from a UK qualitative study with patients and relatives.

OBJECTIVES: To explore alignment of experiences before lymphoma and myeloma diagnosis with the appraisal, help seeking and diagnostic intervals in the Model of Pathways to Treatment (MPT). DESIGN: A qualitative study using in-depth semistructured interviews with patients and relatives. Interviews were transcribed verbatim, anonymised and analysed using qualitative description. SETTING: A UK population-based haematological malignancy patient cohort. PARTICIPANTS: Fifty-five patients (35 lymphoma, 20 myeloma: diagnosed 2014-2016) and 28 relatives participated, within around a year of the patient's diagnosis. Patients were selected from those in the cohort who had returned a questionnaire about their symptoms and help seeking, and consented to contact for further research. Sampling was purposive, to achieve maximum variation in age, sex and time to diagnosis. RESULTS: Participants described time from symptom onset to diagnosis as ranging from several weeks to years. Pathways largely aligned with MPT components and help seeking could lead to the rapid investigations and identification of abnormalities. However, symptoms could be vague and/or inadvertently interpreted as other conditions, which if perpetuated, could cause diagnostic delay. The latter was associated with chaotic pathways, with activities rarely occurring only once or in a linear sequence. Rather, intermittent or ongoing processes were described, moving forward and backwards through intervals. This is 'unpacked' within five themes: (1) appraisal and reappraisal; (2) patient-initiated self-management/treatment; (3) initial help seeking; (4) re-presentation; and (5) patient-initiated actions, decisions and emotions during re-presentation. Within these themes, various healthcare professionals were consulted, often many times, as symptoms persisted/progressed. Input from family/friends was described as substantial, as was the extent to which information seeking occurred. CONCLUSION: Lymphoma and myeloma pathways align with the MPT, but do not fully capture the repetition and complexity described by participants. Time to diagnosis was often prolonged, despite the best efforts of patients, relatives and healthcare professionals. The impact of National Health Service England's Multi-diagnostic Disciplinary Centres on time to haematological cancer diagnosis remains to be seen.

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.

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.

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.

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.

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.