Information preferences of patients with chronic blood cancer: A qualitative investigation.

Background: Haematological malignancies (blood cancers) often follow chronic trajectories that can span many months or years. Management of these diseases typically involves periods of 'Watch & Wait', whereby patients are monitored by the hospital and only treated at progression, if or when this occurs, which might be never or on multiple occasions. Such remitting-relapsing pathways are unpredictable and can cause anxiety and distress.

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'.

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.

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).

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).

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.