The effectiveness and cost-effectiveness of a group domestic abuse perpetrator programme: protocol for a randomised controlled trial.

BACKGROUND: In contrast to evidence for interventions supporting victim/survivors of domestic violence and abuse (DVA), the effectiveness of perpetrator programmes for reduction of abuse is uncertain. This study aims to estimate the effectiveness and cost-effectiveness of a perpetrator programme for men. METHODS: Pragmatic two-group individually randomised controlled trial (RCT) with embedded process and economic evaluation. Five centres in southwest England and South Wales aim to recruit 316 (reduced from original target of 366) male domestic abuse perpetrators. These will be randomised 2:1 to a community-based domestic abuse perpetrator programme (DAPP) or usual care comparator with 12-month follow-up. Female partners/ex-partners will be invited to join the study. The intervention for men comprises 23 weekly sessions of a group programme delivered in voluntary sector domestic abuse services. The intervention for female partners/ex-partners is one-to-one support from a safety worker. Men allocated to usual care receive no intervention; however, they are free to access other services. Their partners/ex-partners will be signposted to support services. Data is collected at baseline, and 4, 8 and 12 months' follow-up. The primary outcome is men's self-reported abusive behaviour measured by the Abusive Behaviour Inventory (ABI-29) at 12 months. Secondary measures include physical and mental health status and resource use alongside the abuse measure ABI (ABI-R) for partners/ex-partners and criminal justice contact for men. A mixed methods process evaluation and qualitative study will explore mechanisms of effectiveness, judge fidelity to the intervention model using interviews and group observations. The economic evaluation, over a 1-year time horizon from three perspectives (health and social care, public sector and society), will employ a cost-consequences framework reporting costs alongside economic outcomes (Quality-Adjusted Life Years derived from EQ-5D-5L, SF-12 and CHU-9D, and ICECAP-A) as well as the primary and other secondary outcomes. DISCUSSION: This trial will provide evidence of the (cost)effectiveness of a DAPP. The embedded process evaluation will further insights in the experiences and contexts of participants and their journey through a perpetrator programme, and the study will seek to address the omission in other studies of economic evaluations. TRIAL REGISTRATION: ISRCTN15804282, April 1, 2019.

Evaluating the cost of managing patients with cellulitis in Wales, UK: A 20-year population-scale study.

This study aimed to estimate costs associated with managing patients with cellulitis from the UK National Health Service (NHS) perspective. The analysis was undertaken through the Secure Anonymised Information Linkage Databank, which brings together population-scale, individual-level anonymised linked data from a wide range of sources, including 80% of primary care general practices within Wales (population coverage ~3.2 million). The data covered a 20-year period from 1999 to 2019. All patients linked to the relevant codes were tracked through primary care settings, recording the number of general practice visits (number of days with an event recorded) and number of in-patient stays. Resources were valued in monetary terms (£ sterling), with costs determined from national published sources of unit costs. These resources were then extrapolated out to reflect UK NHS costs. This is the first attempt to estimate the financial burden of cellulitis using routine data sources on a national scale. The estimated direct annual costs to the Welsh NHS (£28 554 338) are considerable. In-Patient events and length of stay costs are the main cost drivers, with annual Welsh NHS estimates of £19 664 126 with primary care events costing £8 890 212. Initiatives to support patients and healthcare professionals in identifying early signs/risks of cellulitis, improve the accuracy of initial diagnosis, prevent cellulitis recurrence, and improve evidence-based treatment pathways would result in major financial savings, to both the Welsh and UK NHS. In light of these findings, Wales has developed the innovative National Lymphoedema cellulitis Improvement Programme to address these burdens; providing a proactive model of cellulitis care.

Employee silence in health care: Charting new avenues for leadership and management.

ISSUE: Health care management is faced with a basic conundrum about organizational behavior; why do professionals who are highly dedicated to their work choose to remain silent on critical issues that they recognize as being professionally and organizationally significant? Speaking-up interventions in health care achieve disappointing outcomes because of a professional and organizational culture that is not supportive. CRITICAL THEORETICAL ANALYSIS: Our understanding of the different types of employee silence is in its infancy, and more ethnographic and qualitative work is needed to reveal the complex nature of silence in health care. We use the sensemaking theory to elucidate how the difficulties to overcoming silence in health care are interwoven in health care culture. INSIGHT/ADVANCE: The relationship between withholding information and patient safety is complex, highlighting the need for differentiated conceptualizations of silence in health care. We present three Critical Challenge points to advance our understanding of silence and its roots by (1) challenging the predominance of psychological safety, (2) explaining how we operationalize sensemaking, and (3) transforming the role of clinical leaders as sensemakers who can recognize and reshape employee silence. These challenges also point to how employee silence can also result in a form of dysfunctional professionalism that supports maladaptive health care structures in practice. PRACTICE IMPLICATIONS: Delineating the contextual factors that prompt employee silence and encourage speaking up among health care workers is crucial to addressing this issue in health care organizations. For clinical leaders, the challenge is to valorize behaviors that enhance adaptive and deep psychological safety among teams and within professions while modeling the sharing of information that leads to improvements in patient safety and quality of care.

Designing a co-productive study to overcome known methodological challenges in organ donation research with bereaved family members.

BACKGROUND: Co-production of research into public health services has yet to demonstrate tangible benefits. Few studies have reported the impact of co-production on research outcomes. The previous studies of organ donation have identified challenges in engaging with public organizations responsible, gaining ethical approval for sensitive studies with the recently bereaved and difficulty in recruiting bereaved family members who were approached about organ donation. OBJECTIVE: To address these challenges, we designed the first large co-productive observational study to evaluate implementation of a new system of organ donation in Wales. This paper outlines the co-productive strategies that were designed to overcome known methodological challenges and reports what impact they had on resolving these challenges. DESIGN: Two-year co-produced study with multiple stakeholders with the specific intention of maximizing engagement with the National Health Service arm in Wales responsible for organ donation, and recruitment of bereaved family members whose perspectives are essential but commonly absent from studies. SETTING AND PARTICIPANTS: NHS Blood and Transplant, Welsh Government and multiple patient and public representatives who served as co-productive partners with the research team. RESULTS: Co-productive strategies enabled a smooth passage through four different ethics processes within the 10-week time frame, family member recruitment targets to be surpassed, sharing of routinely collected data on 100% of potential organ donor cases and development of further research capacity and capability in a critically under researched area. DISCUSSION AND CONCLUSION: Although expensive and time consuming, co-production was effective and added value to research processes and study outcomes.

Individually-tailored multifactorial intervention to reduce falls in the Malaysian Falls Assessment and Intervention Trial (MyFAIT): A randomized controlled trial.

OBJECTIVE: To determine the effectiveness of an individually-tailored multifactorial intervention in reducing falls among at risk older adult fallers in a multi-ethnic, middle-income nation in South-East Asia. DESIGN: Pragmatic, randomized-controlled trial. SETTING: Emergency room, medical outpatient and primary care clinic in a teaching hospital in Kuala Lumpur, Malaysia. PARTICIPANTS: Individuals aged 65 years and above with two or more falls or one injurious fall in the past 12 months. INTERVENTION: Individually-tailored interventions, included a modified Otago exercise programme, HOMEFAST home hazards modification, visual intervention, cardiovascular intervention, medication review and falls education, was compared against a control group involving conventional treatment. PRIMARY AND SECONDARY OUTCOME MEASURES: The primary outcome was any fall recurrence at 12-month follow-up. Secondary outcomes were rate of fall and time to first fall. RESULTS: Two hundred and sixty-eight participants (mean age 75.3 ±7.2 SD years, 67% women) were randomized to multifactorial intervention (n = 134) or convention treatment (n = 134). All participants in the intervention group received medication review and falls education, 92 (68%) were prescribed Otago exercises, 86 (64%) visual intervention, 64 (47%) home hazards modification and 51 (38%) cardiovascular intervention. Fall recurrence did not differ between intervention and control groups at 12-months [Risk Ratio, RR = 1.037 (95% CI 0.613-1.753)]. Rate of fall [RR = 1.155 (95% CI 0.846-1.576], time to first fall [Hazard Ratio, HR = 0.948 (95% CI 0.782-1.522)] and mortality rate [RR = 0.896 (95% CI 0.335-2.400)] did not differ between groups. CONCLUSION: Individually-tailored multifactorial intervention was ineffective as a strategy to reduce falls. Future research efforts are now required to develop culturally-appropriate and affordable methods of addressing this increasingly prominent public health issue in middle-income nations. TRIAL REGISTRATION: ISRCTN Registry no. ISRCTN11674947.

Pilot evaluation of the management of chronic oedema in community settings project.

AIMS: The aim of this economic analysis was to estimate the economic impact of the On the Ground Education Programme (OGEP) within one local University Health Board (UHB) in Wales. BACKGROUND: The burden of managing chronic oedema can be considerable to the NHS. Developing innovative solutions to the care and management of patients with chronic oedema has the potential to deliver prudent, cost-effective and high quality care within NHS Wales. DESIGN: The study was a pilot Evaluation of the OGEP using retrospectively and prospectively collected patient recalled data. METHODS: A questionnaire collected health care service use data prior to receiving the OGEP (baseline) and at 3 months follow-up from 97 patients during the period June 2016 and January 2017. In addition, we analysed a patient reported health outcome using the EQ-5D 5L, which was completed by patients at the same two assessment points. RESULTS/FINDINGS: The total cost of managing chronic oedema in the 97 patients recruited was £563 729 (mean patient cost £5812 SD (£5870) at baseline and £445 098 (including the addition of intervention costs) (mean patient cost £4589 (SD £5465) at 3 months follow-up. Improvements in the EQ-5D 5L score increasing from 0.40 (SD 0.25) at baseline to 0.54 (SD 0.23) at 3 months follow-up. CONCLUSIONS: Our research show health care resource use and costs decreased, while health-related quality of life scores increased.

Family attitudes, actions, decisions and experiences following implementation of deemed consent and the Human Transplantation (Wales) Act 2013: mixed-method study protocol.

INTRODUCTION: The Human Transplantation (Wales) Act 2013 (the Act) introduced a 'soft opt-out' system of organ donation on 1 December 2015. Citizens are encouraged to make their organ donation decision known during their lifetime. In order to work, the Act and media campaign need to create a context, whereby organ donation becomes the norm, and create a mechanism for people to behave as intended (formally register their decision; consider appointing a representative; convey their donation decision to their families and friends or do nothing-deemed consent). In addition, family members/appointed representatives need to be able to put their own views aside to support the decision of their loved one. The aim of this study is to evaluate initial implementation, outcomes and impact on families and appointed representatives who were approached about organ donation during the first 18 months. METHODS AND ANALYSIS: Prospective mixed-method coproductive study undertaken with National Health Service Blood and Transplant (NHSBT), and multiple patient/public representatives. The study is designed to collect information on all cases who meet specified criteria (≥18 years, deceased person voluntarily resident in Wales and died in Wales or England) whose family were approached between 1 December 2015 and 31 June 2017). Data for analysis include: NHSBT routinely collected anonymised audit data on all cases; Specialist Nurse in Organ Donation (SNOD) completed anonymised form for all cases documenting their perception of the families' understanding of the Act, media campaign and outcome of the donation approach; questionnaires and depth interviews with any family member or appointed representative (minimum 50 cases). Additional focus groups and interviews with SNODs. Anonymised donation outcomes and registration activity reports for Wales provide additional context. ETHICS AND DISSEMINATION: Approved by NHSBT Research, Innovation and Technology Advisory Group on 23 October 2015; Wales Research Ethics Committee 5 (IRAS190066; Rec Reference 15/WA/0414) on 25 November 2015 and NHSBT R&D Committee (NHSBT ID: AP-15-02) on 24 November 2015. REGISTRATION: The protocol is registered on the Health and Care Research Wales Clinical Research Portfolio. Study ID number 34396, www.ukctg.nihr.ac.uk.

Development and Validation of a Cross-Country Hospital Patient Quality of Care Assessment Tool in Europe.

BACKGROUND: Patient perceptions of quality of care (QoC) are directly linked with patient safety and clinical effectiveness. We need patient-designed QoC instruments that work across languages and countries to optimise studies across systems in this area. Few QoC measurement tools exist that assess all aspects of QoC from the patient perspective. This paper describes the development and validation of a comprehensive measure to assess patient perceptions of QoC that incorporates technical and interpersonal aspects of care and is grounded in the established Institute of Medicine (IOM) QoC framework. DESIGN: We conducted a multi-country cross-sectional study. METHODS: Following a literature review and patient focus groups, an expert panel generated questionnaire items. Following a pilot study, item numbers were reduced. The final questionnaire consisted of three sections: demographics, perceived QoC and one open-ended question. Data was collected from patients (n = 531) discharged from hospitals across seven countries in South East Europe (languages: Turkish, Greek, Portuguese, Romanian, Croatian, Macedonian and Bulgarian). Reliability and validity of the measure were assessed. RESULTS: Confirmatory factor analysis was used to compare various factor models of patient-perceived QoC. Good model fit was demonstrated for a two-factor model: communication and interpersonal care, and hospital facilities. CONCLUSIONS: The ORCAB (Improving quality and safety in the hospital: The link between organisational culture, burnout and quality of care) Patient QoC questionnaire has been collaboratively and exhaustively developed between healthcare professionals and patients. It enables patient QoC data to be assessed in the context of the IOM pillars of quality, considering both technical and interpersonal dimensions of care. It represents an important first step in including the patient perspective.

National Lymphoedema Education and Research Specialist in Wales.

Karen Morgan, National Lymphoedema Education and Research Specialist, Lymphoedema Network Wales discusses her 25-year nursing career and the broad-ranging responsibilities that form part of her role.

From pillar to post: homeless women's experiences of social care.

This paper reports findings from a longitudinal study of homeless women. Thirty-eight women were recruited with a retention rate of 58% over three rounds of interviews. Interviews explored specific events in women's lives, their current living arrangements and how their experiences and needs, including for social care, changed over time. Data were analysed thematically using a priori codes. Women reported a range of complex issues, consistent with experiences of deep social exclusion and received support from both statutory and voluntary agencies. Although women appreciated the support they received, many reported that services were fragmented and rarely personalised to their needs.

Prescription contraception use: a cross-sectional population study of psychosocial determinants.

OBJECTIVE: Many forms of contraception are available on prescription only for example, the oral contraceptive pill (OCP) and long-acting reversible contraceptives (LARCs). In this analysis we aim to identify key determinants of prescription contraceptive use. DESIGN: Cross-sectional population survey. Data on sociodemographic indices, concerns about the OCP and perceived barriers to access were collected. SETTING: Data set constructed from a representative population-based telephone survey of community dwelling adults in the Republic of Ireland (RoI) PARTICIPANTS: 1515 women aged between 18 and 45 years MAIN OUTCOME MEASURE: Self-reported user of the OCP or LARCs (intrauterine contraception, contraceptive injections or subdermal contraceptive implants) in the previous 12 months. RESULTS: For at least some of the previous year, 35% had used the OCP and 14% had used LARCs, while 3% had used two or more of these methods. OCP users were significantly younger, more likely to be unmarried and had higher income than non-users. Overall, 68% agreed with the statement 'that taking a break from long-term use of the contraceptive pill is a good idea' and 37% agreed with the statement that 'the OCP has dangerous side effects' and this was the strongest predictor variable of non-use of the OCP. Intrauterine contraception users were significantly older, more likely to be married and had lower income than non-users. Injections or subdermal contraceptive implant users were significantly younger, less likely to be married, had lower income and were less likely to agree that taking a break from long-term use of the pill is a good idea than non-users. CONCLUSIONS: Prescription contraceptive use is sociodemographically patterned, with LARCs in particular being associated with lower incomes in the RoI. Concerns about the safety of the OCP remain prevalent and are important and modifiable determinants of contraceptive-related behaviour.

Factors associated with crisis pregnancies in Ireland: findings from three nationally representative sexual health surveys.

BACKGROUND: Findings on the demographic and sexual health characteristics associated with the experience of a crisis pregnancy are important to inform the public health policy of a country, including Ireland. Studies from other jurisdictions have suggested that certain demographic groups are at risk for unintended pregnancies and the disparity between the groups has been growing in recent years. Ireland is a country which experienced much economic and societal change in the first decade of the 21(st) century; changes which are likely to have affected demographic variables pertaining to sexual health. The current study had two aims: to investigate changes in the socioeconomic characteristics associated with crisis pregnancies over a seven year period [2003 to 2010], and to investigate the recent [2010] socioeconomic risk factors associated with crisis pregnancies in Ireland. METHODS: The study compared the results from 18-45 year old women using data from three broadly similar nationally representative Irish sexual health surveys carried out in 2003, 2004-2006 and 2010. Chi square analysis compared of the socioeconomic characteristics across the seven year period. A logistic regression then investigated the sexual health history and socioeconomic factors associated with the experience of a recent crisis pregnancy using the most recent 2010 data. RESULTS: In 2010, 74% of women experienced parenthood and 23% experienced abortion as the outcome of their crisis pregnancy. Receipt of sex education and contraception use at first sex significantly predicted the experiencing of a recent crisis pregnancy. Younger women and those with a lower level of education were more likely to report having experienced a recent crisis pregnancy. CONCLUSION: Similar demographic groups are at risk for experiencing a crisis pregnancy in Ireland compared with international research, yet the disparities between demographic groups who have experienced a crisis pregnancy appear to be decreasing rather than increasing over a seven year period. Recommendations are made with regard to the provision of continued sex education throughout the lifespan, particularly for those women who are at an increased risk of experiencing a crisis pregnancy.

Through doctors' eyes: a qualitative study of hospital doctor perspectives on their working conditions.

BACKGROUND: Hospital doctors face significant challenges in the current health care environment, working with staff shortages and cutbacks to health care expenditure, alongside increased demand for health care and increased public expectations. OBJECTIVE: This article analyses challenges faced by junior hospital doctors, providing insight into the experiences of these frontline staff in delivering health services in recessionary times. DESIGN: A qualitative methodology was chosen. METHODS: Semi-structured in-depth interviews were conducted with 20 doctors from urban Irish hospitals. Interviews were recorded via note taking. Full transcripts were analysed thematically using NVivo software. RESULTS: Dominant themes included the following: (1) unrealistic workloads: characterized by staff shortages, extended working hours, irregular and frequently interrupted breaks; (2) fatigue and its impact: the quality of care provided to patients while doctors were sleep-deprived was questioned; however, little reflection was given to any impact this may have had on junior doctors own health; (3) undervalued and disillusioned: insufficient training, intensive workloads and a perceived lack of power to influence change resulted in a sense of detachment among junior doctors. They appeared immune to their surroundings. CONCLUSION: Respondents ascribed little importance to the impact of current working conditions on their own health. They felt their roles were underappreciated and undervalued by policy makers and hospital management. Respondents were concerned with the lack of time and opportunity for training. This study highlighted several 'red flags', which need to be addressed in order to increase retention and sustain a motivated junior medical workforce.

Recruitment using mobile telephones in an Irish general population sexual health survey: challenges and practical solutions.

BACKGROUND: Non-coverage of households without a landline telephone is a major concern of telephone survey researchers. Sampling mobile telephone users in national surveys is vital in order to gain access to the growing proportion of households that use mobile telephones extensively or exclusively. The complex logistics of conducting surveys with mobile telephones have been discussed in the literature. This paper outlines the actual challenges encountered during a recent national sexual health survey in Ireland, which utilized a mobile telephone sampling frame to recruit approximately half of the sample. METHOD: The 2010 Irish Contraception and Crisis Pregnancy Survey (ICCP-2010) is a nationally representative sample of adults aged 18-45 years living in Ireland (n = 3002; 1416 recruited by landline telephone and 1586 recruited by mobile telephone). The overall response rate for the survey was 69% (79% for the landline telephone strand; 61% for the mobile telephone strand). All interviews were conducted using computer-assisting telephone interviewing. RESULTS: During the 18-week fieldwork period, five main challenges relating to the use of mobile telephones were encountered: (1) explaining to respondents how random digit dialling works in relation to mobile telephones; (2) establishing the respondent's eligibility; (3) calling the respondent with the Caller ID blocked or withheld; (4) calling the respondent when they are in any number of locations or situations; and (5) explaining to respondents the importance of refusal conversion calls for the response rate calculation. Details of how the survey protocols and procedures were monitored and adapted throughout the study to ensure a high response rate are outlined. CONCLUSION: It is undeniably more challenging to recruit respondents using mobile telephones as opposed to landline telephones. Respondents are generally not familiar with being contacted on their personal mobile telephone for the purposes of being recruited for a research study. The main challenge for survey methodologists and interviewers is to devise simple protocols to explain to respondents why they are being contacted on a mobile telephone. Recommendations for survey researchers interested in using this methodological approach in the future are discussed.

The clustering of health behaviours in Ireland and their relationship with mental health, self-rated health and quality of life.

BACKGROUND: Health behaviours do not occur in isolation. Rather they cluster together. It is important to examine patterns of health behaviours to inform a more holistic approach to health in both health promotion and illness prevention strategies. Examination of patterns is also important because of the increased risk of mortality, morbidity and synergistic effects of health behaviours. This study examines the clustering of health behaviours in a nationally representative sample of Irish adults and explores the association of these clusters with mental health, self-rated health and quality of life. METHODS: TwoStep Cluster analysis using SPSS was carried out on the SLÁN 2007 data (national Survey of Lifestyle, Attitudes and Nutrition, n = 10,364; response rate =62%; food frequency n = 9,223; cluster analysis n = 7,350). Patterns of smoking, drinking alcohol, physical activity and diet were considered. Associations with positive and negative mental health, quality of life and self-rated health were assessed. RESULTS: Six health behaviour clusters were identified: Former Smokers, 21.3% (n = 1,564), Temperate, 14.6% (n = 1,075), Physically Inactive, 17.8% (n = 1,310), Healthy Lifestyle, 9.3% (n = 681), Multiple Risk Factor, 17% (n = 1248), and Mixed Lifestyle, 20% (n = 1,472). Cluster profiles varied with men aged 18-29 years, in the lower social classes most likely to adopt unhealthy behaviour patterns. In contrast, women from the higher social classes and aged 65 years and over were most likely to be in the Healthy Lifestyle cluster. Having healthier patterns of behaviour was associated with positive lower levels of psychological distress and higher levels of energy vitality. CONCLUSION: The current study identifies discernible patterns of lifestyle behaviours in the Irish population which are similar to those of our European counterparts. Healthier clusters (Former Smokers, Temperate and Healthy Lifestyle) reported higher levels of energy vitality, lower levels of psychological distress, better self-rated health and better quality of life. In contrast, those in the Multiple Risk Factor cluster had the lowest levels of energy and vitality and the highest levels of psychological distress. Identification of these discernible patterns because of their relationship with mortality, morbidity and longevity is important for identifying national and international health behaviour patterns.

Gathering information to develop palliative care programs for Alaska's Aboriginal peoples.

Over an eight-year period, the authors conducted focus groups in six Alaska Aboriginal communities. They sought information about traditional ways of caring for the dying, current values and preferences surrounding death, the kind of support caregivers need, and how a palliative care program could assist families caring for loved ones in the community. Focus groups are a standard qualitative research tool for gathering information when a new program or service is planned. However, for Alaska's Aboriginal people living in remote settings, the standard focus group design is not useful. That design was modified to reflect cultural norms and communication methods while adhering to standards of qualitative research. Communities selected represented different groups of Alaska's Indigenous people; 84 Aboriginal elders participated. Culturally modified focus groups yielded rich and useful information about historical and traditional practices surrounding death. Participants also vocalized expectations and concerns regarding their own eventual deaths. The process of conducting six different focus groups throughout Alaska yielded valuable information about community engagement in Aboriginal communities.

Managing chronic oedema: a collaborative community approach.

Chronic oedema affects over 100 000 people in the UK and is regularly treated by different health care professionals, most commonly community nurses. The effect of chronic oedema on patients can be both physical and emotional and is a huge financial burden on the NHS. Collaborative working between lymphoedema services and community nurses is outlined in this article, highlighting potential benefits to patient care and substantial cost savings. Modified lymphoedema management strategies to treat chronic oedema effectively are identified with the emphasis on joint packages of care and patient goal setting. The role of health care professionals working collaboratively and empowering patients are also discussed in a case study.

Quality of life assessment in heart failure interventions: a 10-year (1996-2005) review.

The increasing prevalence and poor prognosis associated with heart failure have prompted research to focus on improving quality of life (QoL) for heart failure patients. Research from 1996-2005 was systematically reviewed to identify randomized controlled trials that assessed QoL in heart failure. In 120 studies, 44 were medication trials; 19 surgical/procedural interventions; and 57 patient care/service delivery interventions. Studies were summarized in terms of aim, population, QoL measures used and QoL findings. Studies used 47 different measures of QoL-generic, health-related, condition-specific, domain-specific and utility measures. Most used a single QoL measure. In 87%, a condition specific QoL measure was used, with the Minnesota Living with Heart Failure Questionnaire being the favoured assessment tool. The range of QoL measures in use poses challenges for development of cumulative knowledge. Although comparability across studies is important, this must be informed by the responsiveness of the instrument selected. As carried out in other cardiac groups, comparative evaluations of instrument responsiveness are needed in heart failure.