Teresa Beynon

Improving end-of-life care for patients with chronic heart failure: "Let's hope it'll get better, when I know in my heart of hearts it won't".

Background: Although chronic heart failure (CHF) has a high mortality rate and symptom burden, and clinical guidance stipulates palliative care intervention, there is a lack of evidence to guide clinical practice for patients approaching the end of life. Aims: (1) To formulate guidance and recommendations for improving end-of-life care in CHF; (2) to generate data on patients’ and carers’ preferences regarding future treatment modalities, and to investigate communication between staff, patients and carers on end-of-life issues. Design: Semistructured qualitative interviews were conducted with 20 patients with CHF (New York Heart Association functional classification III–IV), 11 family carers, 6 palliative care clinicians and 6 cardiology clinicians. Setting: A tertiary hospital in London, UK. Results: Patients and families reported a wide range of end-of-life care preferences. None had discussed these with their clinicians, and none was aware of choices or alternatives in future care modalities, such as adopting a palliative approach. Patients and carers live with fear and anxiety, and are uninformed about the implications of their diagnosis. Cardiac staff confirmed that they rarely raise such issues with patients. Disease- and specialism-specific barriers to improving end-of-life care were identified. Conclusions: The novel, integrated data presented here provide three recommendations for improving care in line with policy directives: sensitive provision of information and discussion of end-of-life issues with patients and families; mutual education of cardiology and palliative care staff; and mutually agreed palliative care referral criteria and care pathways for patients with CHF.

Meeting the communication and information needs of chronic heart failure patients.

There is a lack of evidence on how best to meet policy guidance in fulfilling the information needs of patients with chronic heart failure (CHF) and their families. We aimed to generate guidance for appropriate information provision to CHF patients and their families through a cross-sectional qualitative methodology with constant comparison of emergent themes. Participants were 20 CHF patients (New York Heart Association Functional Classification III, III-IV, and IV); 11 family carers; six palliative care staff; and six cardiology staff. Patients and carers severely lacked understanding of CHF and its symptoms. None had discussed disease progression or advanced care planning with staff. Although patients expected honest discussion of disease implications, data from clinicians described an unwillingness to disclose poor prognosis. We identified four types of barriers to the discussion of disease progression: disease-specific; patient-specific; specialism-specific; and staff time and resources. This is the first study to integrate cardiology, palliative care, and patient and family views to develop feasible recommendations on meeting information needs. Three recommendations for hospital-based clinical practice were generated from the data: (1) improved methods of providing information; (2) introduction of mutual education and joint working; and (3) development of care pathways and referral criteria.

What are the perceived needs and challenges of informal caregivers in home cancer palliative care? Qualitative data to construct a feasible psycho-educational intervention

PurposeTailored and specific interventions for informal caregivers in palliative care are rare. We aimed to generate evidence to inform a subsequent appropriate intervention based on caregivers’ experiences.MethodSingle, semi-structured qualitative interviews were undertaken with 20 informal cancer caregivers of home cancer palliative care.ResultsCarers reported the need to be prepared for their caring role, to be visible to professionals, to receive clear and specific information about the patient’s condition, and to be emotionally supported. They described challenges as uncertainty, distress at witnessing disease progression and the daily struggle with financial issues, personal time, own health and sleep problems.ConclusionsConsidering the time pressures and restricted caregiver time, the intervention should be brief and should aim to enhance their visibility as service recipients, patient-specific information giving, preparation for their role, and emotional support.

Prevalence and Severity of Pruritus and Quality of Life in Patients With Cutaneous T-Cell Lymphoma

CONTEXT Cutaneous T-cell lymphoma (CTCL), although rare, is associated with a significant symptom burden. Pruritus appears to be one of the most prominent and disturbing symptoms. OBJECTIVES To describe the prevalence and severity of pruritus and quality of life (QOL) in patients with CTCL. METHODS Patients with CTCL able to complete two questionnaires were invited to complete a visual analogue scale for itch (VAS(itch)) and the Skindex-29. Prevalence of pruritus, mean score, and SD were estimated for the VAS(itch) and Skindex-29, and the Pearsons correlation coefficient was calculated to evaluate the relationship between severity of pruritus and QOL. RESULTS One hundred patients were recruited (mean [SD] age 57.9 [12.9] years, range 30-86 years). Eighty-eight percent reported pruritus in the preceding four weeks, 46% indicating that it was often or always a problem. The mean (SD) of VAS(itch) (n=92) was 3.2 (3.2), range zero to 10. The mean (SD) total Skindex-29 score was 43.3 (27.7). More advanced disease stage was associated with poorer QOL. The Skindex-29 correlated strongly with the VAS(itch) (Pearsons correlation coefficient=0.72, P<0.001). CONCLUSION All aspects of QOL are affected in CTCL. Pruritus is a common and troublesome symptom. A more advanced disease stage and more severe pruritus symptoms were associated with poorer QOL in this study.

A study of the prevalence of vitamin K deficiency in patients with cancer referred to a hospital palliative care team and its association with abnormal haemostasis

Background: Many patients with advanced cancer are malnourished. Anorexia is common, as is the use of chemotherapy, which may cause nausea and poor appetite. Ten per cent of these patients experience haemorrhagic events. Aim: Since vitamin K deficiency (VKD) causes bleeding, to establish the prevalence of VKD in patients with advanced cancer receiving palliative care. Methods: Serum concentrations of vitamin K1 and undercarboxylated factor II (PIVKA-II) were determined in 46 (17 male/29 female) inpatients aged 26–85 (mean 58) years. INR and liver function tests (bilirubin, ALT, GGT and ALP) were also performed. Results: Vitamin K1 was below the lower limit of the reference range (0.33 nmol/l) in 22% of patients. 78% of patients had some degree of functional VKD indicated by raised (>0.2 AU/ml) PIVKA-II. Six patients (13%) had a prolonged INR, all of whom had raised PIVKA-II and GGT; 4 also had vitamin K1 <0.33 nmol/l. Three patients (6.5%) had clinically significant VKD characterised by INR >1.5, PIVKA-II >10 AU/ml, and undetectable vitamin K1. Conclusions: Patients with advanced cancer are prone to VKD which, while usually subclinical, may develop to a clinically relevant prolongation of the INR. Serum measurements of vitamin K1 and PIVKA-II can be used to detect VKD and monitor vitamin K status before an increased risk of bleeding develops.

Does spirometry predict dyspnoea in advanced cancer

This study explores the similarities and differences between subjective assessments of dyspnoea and objective spirometric indices of respiratory function in advanced cancer. Of 155 patients investigated, 71 (46%) were dyspnoeic and 108 (70%) had spirometry (94 post-salbutamol). Of the 94, 84 had height and weight measured to calculate predicted spirometry. Average dyspnoea levels over 24 h were measured by patient visual analogue scales (VASMe 24). Forced expiratory volume after 1 s (FEV1) and forced vital capacity (FVC) were almost always lower than predicted, indicating frequent impaired respiratory function. Mean spirometric increase post-salbutamol was 21% for FEV1 and 12% for FVC. Correlations between VAS dyspnoea scores and spirometry were low; hence, the latter cannot be relied upon as a measure of the former. Respiratory impairment tended to be obstructive (mean FEV1/FVC = 65%).

What are the supportive and palliative care needs of patients with cutaneous T-cell lymphoma and their caregivers? A systematic review of the evidence

Primary cutaneous T‐cell lymphoma (CTCL) is progressive, can cause significant symptoms, and impacts on quality of life. Therefore supportive and palliative care might have a role in the care of patients and families.

'We're all carrying a burden that we're not sharing': A qualitative study of the impact of cutaneous T-cell lymphoma on the family

Cutaneous T‐cell lymphoma (CTCL) is a rare, progressive cancer that can be life limiting and highly disfiguring. Patients with CTCL experience poor quality of life; however, there is little published about the experiences of their families.

‘We had to change to single beds because I itch in the night’: a qualitative study of the experiences, attitudes and approaches to coping of patients with cutaneous T‐cell lymphoma

Primary cutaneous T‐cell lymphoma (CTCL) is a rare but prevalent condition which can have a significant impact on many aspects of quality of life. However, there is little evidence of patients’ lived experience of CTCL.

Lutrol gel: A potential role in wounds?

Excoriated skin from malignant wounds or from their effluent are uncommon but difficult situations. Many preparations are available that may relieve discomfort; however, difficulties arise because such wounds often occur in areas where dressings are difficult to apply and keep in place. Lutrol gel is a thermoreversible gel, first reported as a potentially useful base substance by MacGregor in 1994. We report three cases where lutrol gel appeared to reduce discomfort, improve functional ability, and quality of life for the patient. We also discuss other potentially useful agents for similar situations.