The cost of providing care by family and friends (informal care) in the last year of life: A population observational study.

INTRODUCTION: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. AIM: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics. DESIGN: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs. SETTING/PARTICIPANTS: Adult national survey respondents - England. RESULTS: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only. CONCLUSION: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.

Spirometry services in England post-pandemic and the potential role of AI support software: a qualitative study of challenges and opportunities.

BACKGROUND: Spirometry services to diagnose and monitor lung disease in primary care were identified as a priority in the NHS Long Term Plan, and are restarting post-COVID-19 pandemic in England; however, evidence regarding best practice is limited. AIM: To explore perspectives on spirometry provision in primary care, and the potential for artificial intelligence (AI) decision support software to aid quality and interpretation. DESIGN AND SETTING: Semi-structured interviews with stakeholders in spirometry services across England. METHOD: Participants were recruited by snowball sampling. Interviews explored the pre- pandemic delivery of spirometry, restarting of services, and perceptions of the role of AI. Transcripts were analysed thematically. RESULTS: In total, 28 participants (mean years' clinical experience = 21.6 [standard deviation 9.4, range 3-40]) were interviewed between April and June 2022. Participants included clinicians (n = 25) and commissioners (n = 3); eight held regional and/or national respiratory network advisory roles. Four themes were identified: 1) historical challenges in provision of spirometry services; 2) inequity in post- pandemic spirometry provision and challenges to restarting spirometry in primary care; 3) future delivery closer to patients' homes by appropriately trained staff; and 4) the potential for AI to have supportive roles in spirometry. CONCLUSION: Stakeholders highlighted historic challenges and the damaging effects of the pandemic contributing to inequity in provision of spirometry, which must be addressed. Overall, stakeholders were positive about the potential of AI to support clinicians in quality assessment and interpretation of spirometry. However, it was evident that validation of the software must be sufficiently robust for clinicians and healthcare commissioners to have trust in the process.

Predictors of hospital admission when presenting with acute-on-chronic breathlessness: Binary logistic regression.

BACKGROUND: Breathlessness due to medical conditions commonly causes emergency department presentations and unplanned admissions. Acute-on-chronic breathlessness is a reason for 20% of emergency presentations by ambulance with 69% of these being admitted. The emergency department may be inappropriate for many presenting with acute-on-chronic breathlessness. AIM: To examine predictors of emergency department departure status in people with acute-on-chronic breathlessness. DESIGN, SETTING AND METHOD: Secondary analysis of patient-report survey and clinical record data from consecutive eligible attendees by ambulance. Variables associated with emergency department departure status (unifactorial analyses; p<0.05) were included in a binary logistic regression model. The study was conducted in a single tertiary hospital. Consecutive survey participants presenting in May 2015 with capacity were eligible. 1,212/1,345 surveys were completed. 245/1,212 presented with acute-on-chronic breathlessness, 171 of whom consented to clinical record review and were included in this analysis. RESULTS: In the final model, the odds of admission were increased with every extra year of age [OR 1.041 (95% CI: 1.016 to 1.066)], having talked to a specialist doctor about breathlessness [9.262 (1.066 to 80.491)] and having a known history of a heart condition [4.177 (1.680 to 10.386)]. Odds of admission were decreased with every percentage increase in oxygen saturation [0.826 (0.701 to 0.974)]. CONCLUSION: Older age, lower oxygen saturation, having talked to a specialist, and having history of a cardiac condition predict hospital admission in people presenting to the emergency department with acute-on-chronic breathlessness. These clinical factors could be assessed in the community and may inform the decision regarding conveyance.

Diagnostic delays for breathlessness in primary care: a qualitative study to investigate current care and inform future pathways.

BACKGROUND: Evidence about the delays to diagnosis for patients presenting with breathlessness is lacking. AIM: To explore current care of patients with breathlessness through the experiences of adults presenting with chronic breathlessness who are awaiting a diagnosis and the experiences of primary care clinicians. DESIGN AND SETTING: Qualitative study with adults presenting with chronic breathlessness and clinicians across 10 general practices. METHOD: Semi-structured interviews were conducted with patients and clinicians. Participants were recruited from a feasibility cluster randomised controlled trial investigating a structured diagnostic pathway for breathlessness. An interview guide explored experiences of help seeking for breathlessness, the diagnostic process, and associated health care. Transcripts were analysed using thematic analysis supported by NVivo software. RESULTS: Interviews were conducted with 34 patients (mean age 68 years, standard deviation [SD] 10.8, of whom 20 were female [59%]) and 10 clinicians (mean 17 years of experience, SD 6.3, of whom five were female [50%]). Five themes were identified: recognising and validating symptoms of breathlessness is an important first step; clinical decision making for breathlessness is complex; difficult conversations arise when a disease-related diagnosis is not confirmed; disease management rather than symptom management is prioritised by clinicians; and patient experience is influenced by clinician communication style. CONCLUSION: The findings indicate potential explanations for delays to diagnosis for patients with chronic breathlessness. Interventions are needed to enhance symptom recognition, include alternative approaches to incremental investigation, and expand the concept of diagnosis beyond a disease label to improve communication, with the ultimate aim of earlier diagnosis and management to improve patient outcomes.

Nonpharmacological management of psychological distress in people with COPD.

Psychological distress is prevalent in people with COPD and relates to a worse course of disease. It often remains unrecognised and untreated, intensifying the burden on patients, carers and healthcare systems. Nonpharmacological management strategies have been suggested as important elements to manage psychological distress in COPD. Therefore, this review presents instruments for detecting psychological distress in COPD and provides an overview of available nonpharmacological management strategies together with available scientific evidence for their presumed benefits in COPD. Several instruments are available for detecting psychological distress in COPD, including simple questions, questionnaires and clinical diagnostic interviews, but their implementation in clinical practice is limited and heterogeneous. Moreover, various nonpharmacological management options are available for COPD, ranging from specific cognitive behavioural therapy (CBT) to multi-component pulmonary rehabilitation (PR) programmes. These interventions vary substantially in their specific content, intensity and duration across studies. Similarly, available evidence regarding their efficacy varies significantly, with the strongest evidence currently for CBT or PR. Further randomised controlled trials are needed with larger, culturally diverse samples and long-term follow-ups. Moreover, effective nonpharmacological interventions should be implemented more in the clinical routine. Respective barriers for patients, caregivers, clinicians, healthcare systems and research need to be overcome.

Mixed-methods feasibility cluster randomised controlled trial of a paramedic-administered breathlessness management intervention for acute-on-chronic breathlessness (BREATHE): study findings.

Introduction: One-fifth of emergency department presentations by ambulance are due to acute-on-chronic breathlessness. We explored the feasibility of an evaluation-phase, cluster randomised controlled trial (cRCT) of the effectiveness and cost-effectiveness of a paramedic-administered, non-pharmacological breathlessness intervention for people with acute-on-chronic breathlessness at ambulance call-out (BREATHE) regarding breathlessness intensity and conveyance to hospital. Methods: This mixed-methods, feasibility cRCT (ISRCTN80330546) randomised paramedics to usual care or intervention plus usual care. Retrospective patient consent to use call-out data (primary end-point) and prospective patient/carer consent for follow-up was sought. Potential primary outcomes included breathlessness intensity (numerical rating scale) and conveyance. Follow-up included: interviews with patients/carers and questionnaires at 14 days, 1 and 6 months; paramedic focus groups and surveys. Results: Recruitment was during COVID-19, with high demands on paramedics and fewer call-outs by eligible patients. We enrolled 29 paramedics; nine withdrew. Randomisation/trial procedures were acceptable. Paramedics recruited 13 patients, not meeting recruitment target (n=36); eight patients and three carers were followed-up. Data quality was good but insufficient for future sample size estimation. The intervention did not extend call-out time, was delivered with fidelity and was acceptable to patients, carers and paramedics. There were no repeat call-outs within 48 h. All trained paramedics strongly recommended BREATHE as a highly relevant, simple intervention. Conclusion: Patient recruitment to target was not feasible during the pandemic. Training and intervention were acceptable and delivered with fidelity. Results include valuable information on recruitment, consent, attrition and data collection that will inform the design and delivery of a definitive trial.

Cancer patients' experiences of the diagnosis and treatment of incidental pulmonary embolism (a qualitative study).

BACKGROUND: The diagnosis of symptomatic cancer-associated thrombosis often causes distress and alarm for patients, especially for those unaware of the risk, or the signs and symptoms to look out for. There are few data about cancer patients' experiences of incidentally diagnosed pulmonary embolism (IPE), where lack of warning (recognised signs, symptoms) may cause delayed diagnosis and aggravate distress. OBJECTIVES: To explore cancer patients' experience of the diagnosis of and living with incidental pulmonary embolism treated with anticoagulation. METHODS: A qualitative study using modified grounded theory approach. Semi-structured interviews were conducted as part of a mixed- methods prospective observational survey study of consenting patients with IPE. Data were subjected to thematic analysis. The qualitative findings are presented. FINDINGS: Eleven participants were interviewed (mean age 68.3 years, range 38-82 years; various forms of cancer and stages). Three major themes and one cross-cutting theme were generated. Theme (1): IPE is experienced in the context of cancer and concomitant comorbidities. Issues are understood in the shadow of-and often overshadowed by-current serious illness. Theme (2): Being diagnosed with IPE. Misattribution to cancer or other comorbidities caused delay in help-seeking and diagnosis. Theme (3): Coping with anticoagulation. Participants' incorporated anticoagulation treatment and its effects into their daily routine with acceptance and stoicism. Finally, the cross-cutting theme relates to a lack of information and uncertainty, contributing to distress throughout the experience. CONCLUSION: The diagnosis of IPE was upsetting and unexpected. Expert and timely information was valued by those with IPE. Education called for about the increased risk of cancer-associated thrombosis and the signs and symptoms to be aware of.

"So, when a woman becomes ill, the total structure of the family is affected, they can't do anything " Voices from the community on women with breast cancer in India: a qualitative focus group study.

BACKGROUND: Psychological symptoms are common in women with breast cancer and profoundly affect their role in the family and wider community, varying across cultural backgrounds. Breast cancer is becoming the most common cancer among women in India. We aimed to understand the cultural context within which Indian women with breast cancer living in India, experience psychological concerns from the perspectives of healthcare professionals, volunteers and church members. METHODS: Five focus groups were conducted in South India (clinicians (2 groups)) lay public (3 groups). A topic guide was explored: understanding of breast cancer, experiences of patients with regard to diagnosis and treatment and psychological impact. Groups were audio-recorded and verbatim transcribed. Lay groups were conducted in Malayalam with translation and back-translation. Transcripts were subjected to thematic analysis using "cultural task analysis" as a lens for analysis. RESULTS: Forty-five (oncologists (5), nurses (10), church members (16) and community volunteers working in a palliative care unit (14) participated. Three major themes psychosocial issues related to diagnosis, psychosocial impact of cancer treatment and coping with diagnosis and treatment and nine subthemes emerged from the two groups. All described psychological impact on women with breast cancer including body image, change of family role and their need for support. Family and faith were recognised as the major framework providing key support but also significant stress. Clinicians were also concerned about financial implications and issues around early cancer detection. Laypeople and nurses also commented that poor communication and lack of empathy from doctors aggravated distress. CONCLUSION: Clinical and lay communities were aware of the widespread psychological impact affecting women with breast cancer which are amplified by the patriarchal context within which they live, which extends into clinical practice. Family and faith provide a strong support structure and are a cause of distress, as core roles and expectations are challenged by this disease of womanhood.

Health service utilisation associated with chronic breathlessness: random population sample.

BACKGROUND: Most health service utilisation studies are of people with specific diagnoses or demographic characteristics, and rarely of specific chronic symptoms. The aim of this study was to establish whether population-level health service utilisation increases in people with chronic breathlessness. METHODS: A cross-sectional analysis was carried out of the South Australian Health Omnibus Survey 2017, a multi-stage, clustered area, systematic sampling survey of adults where questions are administered face-to-face in respondents' homes. Self-report of health service utilisation in the previous 3 months (medical consultations, emergency department, hospital admission), chronic breathlessness (severity, duration, modified Medical Research Council (mMRC) breathlessness scale) and demographic data were used to predict self-reported health service utilisation. RESULTS: A total of 2898 people were included (49.0% male; median age 48.0 years (IQR 32.0-63.0); 64.1% educated beyond school; 55.4% in work; 73.5% had outpatient contact; 6.3% had a hospital admission in the previous 3 months). Chronic breathlessness (mMRC ≥1) was reported by 8.8% of respondents. In bivariable analyses, people with greater contact with health services were older, and a higher proportion were overweight/obese and had more severe chronic breathlessness. In multivariable analyses, chronic breathlessness and older age were positively associated with outpatient care and inpatient care, and people with chronic breathlessness were hospitalised for longer (incidence rate ratio 2.5; 95% CI 1.4-4.5). CONCLUSION: There is a significant association between worse chronic breathlessness and increased health service utilisation. There is a need for greater understanding of factors that initiate contact with health services.

Breathless and awaiting diagnosis in UK lockdown for COVID-19 We're stuck.

During the COVID-19 pandemic, semi-structured interviews were undertaken with 20 adults awaiting a diagnosis for their chronic breathlessness. Three key themes were identified using thematic analysis: (1) de-prioritisation of diagnosis, (2) following UK 'lockdown' guidance for the general population but patients fearful they were more at risk, and (3) the impact of lockdown on coping strategies for managing breathlessness. The existing unpredictable pathway to diagnosis for those with chronic breathlessness has been further interrupted during the COVID-19 pandemic.

How Physicians in South India Recognize, Assess, and Manage People with Chronic Breathlessness Syndrome: A Thematic Analysis.

OBJECTIVES: Chronic breathlessness syndrome has been defined to help clinicians actively seek, and patients legitimately present with, persistent breathlessness, and to drive services and research. However, views from low- to middle-income countries were not included. We aimed to explore the views of hospital physicians regarding chronic breathlessness syndrome, its recognition and management. METHODS: This was a secondary analysis of qualitative data collected during a service development project. Three focus groups of physicians caring for patients with chronic breathlessness in a single tertiary hospital in South India were conducted in English, audio-recorded, transcribed, and subjected to thematic analysis. RESULTS: Fifteen physicians from oncology, palliative care, cardiology, and respiratory specialties participated. Three major themes (impact, invisibility, and purpose) were generated. Findings mirrored those in high-income countries. Chronic breathlessness, as defined, was seen as prevalent, with a major impact on patients, families, and physicians. Nonpalliative care physicians described therapeutic helplessness with poor awareness and/or ability to manage breathlessness accompanied by active avoidance. This helplessness, a perceived lack of assessment tools and lack of access to palliative care contributed to the "invisibility" of chronic breathlessness. Most participants agreed with the name of chronic breathlessness syndrome. All agreed that systematic identification would foster education regarding assessment and management and support service development and research. CONCLUSIONS: Chronic breathlessness syndrome is recognized in South India but, as in higher-income countries, risks being invisible due to the lack of awareness of therapeutic interventions. A named and defined syndrome was seen as a way to improve identification and management.

A feasibility cluster randomised controlled trial of a paramedic-administered breathlessness management intervention for acute-on-chronic breathlessness (BREATHE).

Chronic breathlessness, persistent and disabling despite optimal treatment of underlying causes, is a prevalent and frightening symptom and is associated with many emergency presentations and admission to hospital. Breathlessness management techniques used by paramedics may reduce the need for conveyance to hospital. The Breathlessness RElief AT HomE study (BREATHE) aims to explore the feasibility of conducting a definitive cluster randomised controlled trial (cRCT) for people with acute-on-chronic breathlessness who have called an ambulance, to evaluate the effectiveness and cost-effectiveness of a paramedic-administered non-pharmacological breathlessness intervention. The trial is a mixed-methods feasibility cRCT. Eight paramedics will be randomised 1:1 to deliver either the BREATHE intervention in addition to usual care or usual care alone at call-outs for acute-on-chronic breathlessness. Sixty participants will be recruited to provide access to routine data relating to the index call-out with optional follow-up questionnaires at 14 days, 1 month and 6 months. An in-depth interview will be conducted with a subgroup. Feasibility outcomes relating to recruitment, data quality (especially candidate primary outcomes), and intervention acceptability and fidelity will be collected as well as providing data to estimate a sample size for a definitive trial. Yorkshire and The Humber-Sheffield Research Ethics Committee approved the trial protocol (19/YH/0314). The study results will inform progression to, or not, and design of a main trial according to predetermined stop-go criteria. Findings will be disseminated to relevant stakeholders and submitted for publication in a peer-reviewed journal.

'I don't talk about my distress to others; I feel that I have to suffer my problems...' Voices of Indian women with breast cancer: a qualitative interview study.

BACKGROUND: Breast cancer is the commonest form of cancer among women globally, including in India. The rising incidence in the developing world is thought to be due to increased life expectancy, urbanisation, and adoption of western lifestyles. A recent systematic review found that Indian women living in India or as immigrants in Canada experienced a range of psychological distresses both ameliorated and exacerbated by cultural issues personally, within the family, within their community, and in the context of faith, and only two of the five qualitative studies explored the experience of women with breast cancer living in India. Distress may also affect treatment compliance. AIM: The aim of the study was to explore the psychological distresses experienced by Indian women with breast cancer living in Kerala, South India, during and after treatment and to understand better what helped to relieve or increase these distresses. METHODS: In-depth interviews were conducted with 20 consenting women undergoing treatment for breast cancer. Purposive sampling was used to obtain maximum variation in sociodemographic and clinical characteristics. Interviews were verbatim transcribed, translated into English, and back-translated to Malayalam to ensure that the meaning had not been lost. English data were analysed using thematic frame work analysis and synthesised to provide a deeper understanding of the individuals' experience. RESULTS: Three major themes emerged from the data. The first major theme was 'far-reaching psychological distress'. This included anxiety, guilt, anger, and depression in response to the disease and physical side effects of treatment and issues relating to body image, especially hair loss and sexuality. The second major theme was 'getting on with life'. Women tried to make sense of the disease, by actively seeking information, the role of medical professionals, and their practical adaptations. Many found a new future and a new way to live normal. The third major theme was the 'support system' strongly based on family, friends, faith, and the community which affect them positively as well as negatively. CONCLUSION: Psychological concerns related to disease and treatment are common in Indian women with particular emphasis on body image issues associated with hair loss. Family and faith were key support systems for almost all the women, although it could also be the causes of distress.

"So, I try not to go " Acute-On-Chronic Breathlessness and Presentation to the Emergency Department: In-depth Interviews With Patients, Carers, and Clinicians.

CONTEXT: People with acute-on-chronic breathlessness due to cardiorespiratory conditions frequently present to the emergency department (ED) causing burden for the person concerned, their care takers, and emergency services. OBJECTIVE: To understand the reasons for ED presentation for acute-on-chronic breathlessness and how optimal care might avoid presentations. METHODS: Qualitative in-depth linked interviews were conducted as part of a mixed-methods study. Transcripts of audio-recordings were subjected to thematic analysis. Consenting patients presenting to a single tertiary hospital ED with acute-on-chronic breathlessness able to be interviewed were eligible. Patient-participants (n = 18) were purposively sampled for maximum variation. Patient-participant-nominated carers (n = 9) and clinicians (n = 8) were recruited. RESULTS: Theme 1: "The context for the decision to present to the ED" is the experience of acute-on-chronic breathlessness, in which a person faces an existential crisis not knowing where the next breath is coming from, and previous help-seeking experiences. Theme 2 ("Reasons for presentation"): Some were reluctant to seek help until crisis when family carers were often involved in the decision to present. Others had previous poor experiences of help-seeking for breathlessness in the community and turned to the ED by default. Some had supportive primary clinicians and presented to the ED either on their clinician's recommendation or because their clinician was unavailable. CONCLUSIONS: The decision to present to the ED is made in the context of serious crisis and previous experiences. Discussion of the reason for presentation may enable better management of chronic breathlessness and reduce the need for future emergency presentation.

Low-intensity educational interventions supporting self-management to improve outcomes related to chronic breathlessness: a systematic review.

Chronic breathlessness is debilitating and frightening, often resulting in emergency department presentations with acute-on-chronic breathlessness. Self-management is complex, involving 14 components as identified by the Practical Systematic Review in Self-Management Support (PRISMS). Low-intensity educational interventions that support breathlessness self-management through written/visual educational materials, alongside limited health professional support, are available. Our aim was to describe components of low-intensity educational interventions that support and improve self-management for adults with chronic breathlessness and evaluate their efficacy for improving breathlessness-related outcomes. A systematic review was conducted, including RCTs that compared these interventions with usual care in adults with chronic disease. Synthesis took a narrative approach utilizing the PRISMS taxonomy and Template for Intervention Description and Replication (TIDieR) checklist. Of the 1948 articles identified, 7 met criteria reporting 7 RCTs using 6 interventions. Studies utilized 12 out of 14 PRISMS components, the most frequent being training/rehearsal for psychological strategies. Evidence for effectiveness was inconsistent and attempts to identify beneficial components were confounded by intervention complexity and heterogeneity. The optimal content and delivery of low-intensity educational interventions that support self-management to improve chronic breathlessness-related outcomes in adults cannot be defined from current published literature. Future research should incorporate more detailed, standardized reporting to enable comparison and meta-analysis.

The roles of dispositional coping style and social support in helping people with respiratory disease cope with a breathlessness crisis.

AIM: To explore the role of coping moderators in self-management of breathlessness crises by people with advanced respiratory disease. DESIGN: A secondary analysis of semi-structured interview data. METHODS: Interviews with patients who had advanced respiratory disease, chronic breathlessness and at least one experience where they considered presenting to Emergency but self-managed instead (a "near miss"). Participants were recruited from New South Wales, Queensland, Victoria, South Australia or Tasmania. Eligible caregivers were those who contributed to Emergency-related decision-making. Interviews were coded inductively and then deductively against the coping moderators social support and dispositional coping style, defined by the Transactional Model of Stress and Coping. RESULTS: Interviews were conducted between October 2015 - April 2016 with 20 patients and three caregivers. Social networks offered emotional and practical support but also had potential for conflict with patients' 'hardy' coping style. Patient hardiness (characterized by a sense of 'commitment' and 'challenge') promoted a proactive approach to self-management but made some patients less willing to accept support. Information-seeking tendencies varied between patients and were sometimes shared with caregivers. An optimistic coping style appeared to be less equivocally beneficial. CONCLUSION: This study shows that social support and coping style may influence how people self-manage through their breathlessness crises and identified ways coping moderators can facilitate or hinder effective self-management. IMPACT: This study confers insights into how social-support and coping style can be supported and optimized to facilitate breathlessness self-management. Acknowledging coping moderator interactions is beneficial for developing resources and strategies that recognise patient mastery.

Oral anticoagulation is preferable to injected, but only if it is safe and effective: An interview study of patient and carer experience of oral and injected anticoagulant therapy for cancer-associated thrombosis in the select-d trial.

BACKGROUND: Cancer patients have a four- to fivefold greater risk of thrombosis than the general population. Recommended treatment for cancer-associated thrombosis is 3-6 months of low-molecular-weight heparin. The 'select-d' trial is an open-label, randomised, multi-centre pilot trial in patients with cancer-associated thrombosis, utilising dalteparin (low-molecular-weight heparin) versus rivaroxaban (a direct oral anticoagulant), to assess effectiveness and safety. AIM: To explore patient and informal carers' experiences of cancer-associated thrombosis and their experience and understanding of the risk-benefit of thrombosis treatment. DESIGN: Qualitative substudy of the select-d trial, using semi-structured interviews. Interviews were audio-recorded and transcribed. Data were analysed using Framework Analysis. PARTICIPANTS: Participants were purposively sampled ( n = 37 patients; 46% male; age 40-89; 9 with carer present). RESULTS: Three themes were found: experience of cancer-associated thrombosis, experience of anticoagulation and risk-benefit balance of the two modes of administration. Some were shocked by their thrombosis diagnosis (most were unaware of their risk), but others found it insignificant compared with cancer. Most patients found tablets more convenient, but injections were acceptable in the context of having cancer. While most were happy to follow medical advice, others weighed preference on the basis of effectiveness. CONCLUSION: Lack of awareness of thrombosis risk is concerning; cancer patients must be informed to enable prompt help-seeking. Tablets could provide a welcome choice for patients if there is equivalent risk-benefit to injected anticoagulants. Patients trust their clinicians to tailor their treatment. Future research could explore the effect of routine information giving about the risk of thrombosis.