Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end-of-life care in England.

The National Survey of Bereaved People was conducted by the Office for National Statistics on behalf of NHS England for the first time in 2011, and repeated annually thereafter. It is thought to be the first time that nationally representative data have been collected annually on the experiences of all people who have died, regardless of cause and setting, and made publicly available informing palliative and end-of-life policy, service provision and development, and practice. This paper describes the development of the questionnaire used in the survey, VOICES-SF, a short-form of the VOICES (Views Of Informal Carers-Evaluation of Services) questionnaire, adapted specifically to address the aims of the national survey.

Place of death in the population dying from diseases indicative of palliative care need: a cross-national population-level study in 14 countries.

Background: Studying where people die across countries can serve as an evidence base for health policy on end-of-life care. This study describes the place of death of people who died from diseases indicative of palliative care need in 14 countries, the association of place of death with cause of death, sociodemographic and healthcare availability characteristics in each country and the extent to which these characteristics explain country differences in the place of death.

Methods: Death certificate data for all deaths in 2008 (age ≥1 year) in Belgium, Canada, the Czech Republic, England, France, Hungary, Italy, Mexico, the Netherlands, New Zealand, South Korea, Spain (Andalusia), the USA and Wales caused by cancer, heart/renal/liver failure, chronic obstructive pulmonary disease, diseases of the nervous system or HIV/AIDS were linked with national or regional healthcare statistics (N=2,220,997).

Palliative care patients' perceptions of the work involved in understanding and managing the network of care provision surrounding them.

Objective: To explore the work carried out for cancer palliative care patients in understanding and dealing with the often large network of care provision surrounding them.

Method: Qualitative thematic analysis of interviews with 24 patients (aged 48-85 years) with 15 different types/sites of cancer and palliative care needs.

Results: The main theme of 'patient work-their strategies and project management' is presented.

The networks of care surrounding cancer palliative care patients.

Objectives: This paper explicates the nature and extent of the networks of care surrounding patients with cancer palliative care needs.

Method: Twenty-four patients with 15 different types/sites of cancer were recruited in one city in England, UK. During one in-depth interview patients identified who was 'involved in their care' and any known pathways of communication between them.

International variation in place of death of older people who died from dementia in 14 European and non-European countries.

Objectives: The objective of this study was to examine variation in place of death of older people dying from dementia in countries across 4 continents.

Design: Study of death certificate data.

Methods: We included deaths of older (65 + years) people whose underlying cause of death was a dementia-related disease (ICD-10: F01, F02, F03, G30) in Belgium, the Netherlands, England, Wales, France, Italy, Spain, Czech Republic, Hungary, New Zealand, United States, Canada, Mexico and South Korea.

'You can't say, "what about me?" I'm not the one with cancer': information and support needs of relatives.

Objective: The aims of this study were to explore relatives' experiences of talking about cancer within the family and to identify their information and support needs.

Method: A cross-sectional in-depth interview study with relatives and partners (n = 22) of cancer patients recruited through community settings was conducted. A thematic approach was used for analysis.

The JACS prospective cohort study of newly diagnosed women with breast cancer investigating joint and muscle pain, aches, and stiffness: pain and quality of life after primary surgery and before adjuvant treatment.

Background: Breast cancer affects one in eight UK women during their lifetime: many of these women now receive adjuvant chemotherapy and hormone therapy. Joint and muscle pains, aches, and stiffness are common but the natural history, aetiology and impact of these symptoms are unknown. A cohort study of newly diagnosed women with primary breast cancer was established to explore this.

Discontinuity of care at end of life: a qualitative exploration of OOH end of life care.

Objective: This study aimed to understand the experiences of palliative care patients when accessing or making decisions about out of hours (OOH) services. It also aimed to illuminate barriers and enablers to accessing appropriate and timely care following the introduction of the 2004 New General Medical Services Contract.

Method: Longitudinal prospective qualitative study using semi-structured interviews and telephone interviews over 6 months and analysed for thematic content.

Uncertainty and anxiety in the cancer of unknown primary patient journey: a multiperspective qualitative study.

Background: Patients with cancer of unknown primary (CUP) have metastatic malignant disease without an identifiable primary site; it is the fourth most common cause of cancer death.

Objectives: To explore patients' informal and professional carers' experiences of CUP to inform development of evidence-based, patient-centred care.

Methods: Qualitative study involving development of multiple exploratory case studies, each comprising a patient and nominated informal and professional carers, with contextual data extracted from medical records.

Development and initial validation of a new outcome measure for hospice and palliative care: the St Christopher's Index of Patient Priorities (SKIPP).

Objective: To develop and conduct a preliminary psychometric analysis of a hospice and palliative care patient-reported outcome measure to detect patients' perceptions of change in quality of life (QoL) and issues of concern, and views of service benefit.

Methods: Following pilot testing and cognitive interviewing, St Christopher's Index of Patient Priorities (SKIPP) was administered twice to hospice inpatients and homecare patients. QoL was rated 'now', and retrospectively 'before starting hospice care' or 'at the time of the first interview'.

End-of-life care and preferences for place of death among the oldest old: results of a population-based survey using VOICES-Short Form.

Background: End-of-life care (EOLC) is a key component in care of older people. However, evidence suggests that the oldest old (>85 years) are less likely to access specialist EOLC.

Objective: The study's objective was to explore experiences of EOLC among the oldest old and determine their reported preference for place of death.

Lessons learnt recruiting to a multi-site UK cohort study to explore recovery of health and well-being after colorectal cancer (CREW study).

Background: The UK leads the world in recruitment of patients to cancer clinical trials, with a six-fold increase in recruitment during 2001-2010. However, there are large variations across cancer centres. This paper details recruitment to a large multi-centre prospective cohort study and discusses lessons learnt to enhance recruitment.

Physicians' experiences and perspectives regarding the use of continuous sedation until death for cancer patients in the context of psychological and existential suffering at the end of life.

Objective: The use of continuous sedation until death for terminally ill cancer patients with unbearable and untreatable psychological and existential suffering remains controversial, and little in-depth insight exists into the circumstances in which physicians resort to it.

Methods: Our study was conducted in Belgium, the Netherlands, and the UK in hospitals, PCUs/hospices, and at home. We held interviews with 35 physicians most involved in the care of cancer patients who had psychological and existential suffering and had been continuously sedated until death.

End-of-life care and achieving preferences for place of death in England: results of a population-based survey using the VOICES-SF questionnaire.

Background/aim: Health policy places emphasis on enabling patients to die in their place of choice, and increasing the proportion of home deaths. In this article, we seek to explore reported preferences for place of death and experiences of care in a population-based sample of deaths from all causes.

Design: Self-completion post-bereavement survey.

Assessing the quality of care for dying patients from the bereaved relatives' perspective: further validation of "Evaluating care and health outcomes--for the dying".

Context: Evaluating Care and Health Outcomes-for the Dying (ECHO-D) is a post-bereavement questionnaire that assesses quality of care for the dying and is linked with the Liverpool Care Pathway for the Dying Patient (LCP).

Objectives: To further assess the validity and reliability of the ECHO-D, namely the construct validity, internal consistency, and test-retest reliability of key composite scales.

Methods: Self-completion questionnaires were mailed to 778 next-of-kin of consecutive deceased patients who had died an "expected" cancer death in a hospice or acute tertiary hospital.

Does the 'Liverpool Care Pathway' facilitate an improvement in quality of care for dying cancer patients?

Background: The Liverpool Care Pathway for the Dying Patient (LCP) aims to transfer hospice principles of care for dying patients to other health-care sectors. This post-bereavement survey explored the LCP's effectiveness in improving quality of care for cancer patients.

Methods: Postal self-completion questionnaires were sent to 778 next-of-kin to consecutive deceased patients who had died an 'expected' cancer death in a hospice and acute tertiary hospital.

Informing future research priorities into the psychological and social problems faced by cancer survivors: a rapid review and synthesis of the literature.

Purpose: To establish what is known regarding the psychological and social problems faced by adult cancer survivors (people who are living with and beyond a diagnosis of cancer) and identify areas future research should address.

Method: A rapid search of published literature reviews held in electronic data bases was under taken. Inclusion and exclusion criteria, and removal of duplicated papers, reduced the initial number of papers from 4051 to 38.

Spanish nurses' preparedness to care for hospitalised terminally ill patients and their daily approach to caring.

Objective: To describe Spanish nurses' preparedness to care for hospitalised terminally ill patients and how this translates into care delivery.

Methods: An exploratory, sequential mixed methods study with two stages. Stage I used unstructured observations of 22 hospital nurses over 235 hours to understand their daily reality, followed by semi-structured interviews with 21 nurses to elicit their perspectives.

A survey of joint and muscle aches, pain, and stiffness comparing women with and without breast cancer.

Context: Joint and muscle aches, pain, and stiffness have been reported to be a problem for some women after adjuvant breast cancer treatment; however, the extent and impact of this problem are unknown.

Objectives: The purpose of this study was to determine the prevalence of this problem in comparison with women of a similar age without breast cancer.

Methods: Two hundred forty-seven women attending breast cancer follow-up clinics were invited to complete pain and quality-of-life measures.

What is different about living alone with cancer in older age? A qualitative study of experiences and preferences for care.

Background: Increasing numbers of older patients with advanced cancer live alone but there is little research on how well health services meet their needs. The aim of this study was to compare the experiences and future preferences for care between two groups of older people with cancer in their last year of life; those who live alone, and those who live with co-resident carers.

Methods: In-depth qualitative interviews were conducted with 32 people aged between 70 and 95 years who were living with cancer.

Participant recruitment in sensitive surveys: a comparative trial of 'opt in' versus 'opt out' approaches.

Background: Although in health services survey research we strive for a high response rate, this must be balanced against the need to recruit participants ethically and considerately, particularly in surveys with a sensitive nature. In survey research there are no established recommendations to guide recruitment approach and an 'opt-in' system that requires potential participants to request a copy of the questionnaire by returning a reply slip is frequently adopted. However, in observational research the risk to participants is lower than in clinical research and so some surveys have used an 'opt-out' system.

Outcomes after unplanned admission to hospital in older people: ill-defined conditions as potential indicators of the frailty trajectory.

Objectives: To describe outcomes after unplanned hospital admission in older people and to determine whether disease trajectories in those admitted with ill-defined conditions (symptoms and signs) are distinct from other diagnostic groups and consistent with known disease trajectories.

Design: Longitudinal follow-up after a retrospective cross-sectional study of emergency admissions to general internal and geriatric medicine units in one hospital.

Setting: Acute hospital in southern England.

A comparison of strategies to recruit older patients and carers to end-of-life research in primary care.

Background: Older adults receive most of their end-of-life care in the community, but there are few published data to guide researchers on recruitment to studies in primary care. The aim of this study was to compare recruitment of patients and bereaved carers from general practices in areas with different research network support, and identify challenges in obtaining samples representative of those in need of end-of-life care.

Methods: Comparative analysis of recruitment from general practices to two face-to-face interview studies concerned with 1) carers' perceptions of transitions between settings for decedents aged over 75 years and 2) the experiences of older patients living with cancer at the end-of-life.