scholarly journals Cohort Profile: The Haematological Malignancy Research Network (HMRN): a UK population-based patient cohort

2018 ◽  
Vol 47 (3) ◽  
pp. 700-700g ◽  
Author(s):  
Alexandra Smith ◽  
Debra Howell ◽  
Simon Crouch ◽  
Dan Painter ◽  
John Blase ◽  
...  
Keyword(s):  
Haematological Malignancy ◽  
Population Based ◽  
Research Network ◽  
Patient Cohort

scholarly journals Cell‐of‐origin in diffuse large B‐cell lymphoma: findings from theUK's population‐based Haematological Malignancy Research Network

2018 ◽  
Vol 185 (4) ◽  
pp. 781-784 ◽  
Author(s):  
Daniel Painter ◽  
Sharon Barrans ◽  
Stuart Lacy ◽  
Alexandra Smith ◽  
Simon Crouch ◽  
...  
Keyword(s):  
B Cell ◽  
Cell Lymphoma ◽  
Haematological Malignancy ◽  
B Cell Lymphoma ◽  
Population Based ◽  
Research Network ◽  
Cell Of Origin ◽  
Large B Cell Lymphoma ◽  
Large B Cell

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

2017 ◽  
Vol 8 (1) ◽  
pp. 78-86 ◽  
Author(s):  
Dorothy McCaughan ◽  
Eve Roman ◽  
Alexandra G Smith ◽  
Anne Garry ◽  
Miriam Johnson ◽  
...  
Keyword(s):  
Haematological Malignancy ◽  
Qualitative Interviews ◽  
Population Based ◽  
Poor Quality ◽  
Research Network ◽  
Hospital Death ◽  
Haematological Malignancies ◽  
Home Death ◽  
Hospital Deaths ◽  
Advance Planning

ObjectivesCurrent 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.MethodsThe 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.ResultsFive 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.ConclusionsHospital 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.

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

2020 ◽  
Author(s):  
Maxine Lamb ◽  
Alexandra G Smith ◽  
Daniel Painter ◽  
Eleanor Kane ◽  
Tim Bagguley ◽  
...  
Keyword(s):  
General Population ◽  
B Cell ◽  
Monoclonal Gammopathy ◽  
Haematological Malignancy ◽  
Population Based ◽  
Research Network ◽  
Mortality And Morbidity ◽  
Before And After ◽  
Age And Sex ◽  
Undetermined Significance

ABSTRACTObjectiveTo examine co-morbidity patterns in individuals with monoclonal gammopathy of undetermined significance (MGUS) and monoclonal B-cell lymphocytosis (MBL), both before and after premalignancy diagnosis; and compare their activity to that of the general population.DesignPopulation-based patient cohort, within which each patient is matched at diagnosis to 10 age and sex-matched individuals from the general population. Both cohorts are linked to nationwide information on deaths, cancer registrations, and Hospital Episode Statistics (HES).SettingThe UK’s Haematological Malignancy Research Network; which has a catchment population of around 4 million served by 14 hospitals and a central diagnostic laboratory.ParticipantsAll patients newly diagnosed 2009–15 with MGUS (n = 2203) or MBL (n = 561), and their age and sex-matched comparators (n = 27,638).Main Outcome measuresSurvival, and hospital inpatient and outpatient activity in the five years before, and three years after, diagnosis.ResultsIndividuals with MGUS experienced excess morbidity in the 5-years before diagnosis, and excess mortality and morbidity in the 3-years after. Increased rate-ratios (RR) were evident for nearly all clinical specialties; the largest, both before and after diagnosis, being for nephrology (before RR = 4.38, 95% Confidence Interval 3.99–4.81; after RR = 14.7, 95% CI 13.5–15.9) and rheumatology (before RR = 3.38, 95% CI 3.16–3.61; after RR = 5.45, 95% CI 5.09–5.83). Strong effects were also evident for endocrinology, neurology, dermatology and respiratory medicine. Conversely, only marginal increases in mortality and morbidity were evident for MBL.ConclusionsFrom a haematological malignancy perspective, MGUS and MBL are generally considered to be relatively benign. Nonetheless, monoclonal gammopathy has the potential to cause systemic disease and wide-ranging damage to most organs and tissues. Hence, even though most people with monoclonal immunoglobulins never develop a B-cell malignancy or suffer from any other form of M-protein related organ/tissue related disorder, the consequences for those that do can be extremely serious.

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

2020 ◽  
pp. bmjspcare-2019-002097
Author(s):  
Rebecca Sheridan ◽  
Eve Roman ◽  
Alex G Smith ◽  
Andrew Turner ◽  
Anne C Garry ◽  
...  
Keyword(s):  
Cause Of Death ◽  
Haematological Malignancy ◽  
Care Home ◽  
Healthcare Services ◽  
Population Based ◽  
Place Of Death ◽  
Research Network ◽  
Hospital Death ◽  
The Uk ◽  
Proximity To Death

ObjectivesHospital 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.MethodsSet 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.ResultsOf 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.ConclusionChallenges 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.

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