Measuring trade-offs in nephrology : a systematic review of Discrete Choice Experiments and Conjoint Analysis studies

Background: Discrete Choice Experiment [DCE], Conjoint Analysis [CA], or Adaptive Conjoint Analysis [ACA] methods are increasingly applied to obtain patient, clinician or community preferences in nephrology. This study systematically reviews the above mentioned published choice studies providing an overview of the issues addressed, methods, and findings. Methods: Choice studies relating to nephrology were identified using electronic databases, including Medline, Embase, PsychINFO and Econlit from 1990 to 2015. For inclusion in the review, studies had to primarily relate to kidney disease and include results from statistical (econometric) analyses of respondents’ choice or preference. Studies meeting the inclusion criteria were assessed against a range of systematic review criteria, and methods and results summarised. Results: We identified 14 eligible studies from Europe, Australasia, North America, and Asia, reporting preferences for treatment or screening, patient experiences, quality of life, health outcomes and priority setting frameworks. Specific contexts included medical interventions in kidney transplantation and renal cell carcinoma, health policies for organ donation and allocation, dialysis modalities and end-of-life care; using a variety of statistical models. The characteristics of ‘time’ (i.e. transplant waiting time, dialysis hours, transport time) and ‘quality of life’ (pre and post-transplant, or pre and post-dialysis) consistently influenced patient and clinician preferences across the choice studies. Conclusions: Discrete choice experiments are increasingly used to obtain information about key preferences in kidney transplantation and dialysis. These study methods provide quantitative information about respondents’ trade-offs between conflicting clinical and policy objectives, and can establish how preferences vary among stakeholder groups

Prioritizing patients for renal transplantation?: Analysis of patient preferences for kidney allocation according to ethnicity and gender

Revisions to UK transplant allocation policy in 2006 marked a policy shift towards ascribing higher priority to people who had been waiting for a long time for transplants, and to young adults, at the expense of emphasising tissue match between donor and recipient. This benefited members of ethnic minorities because of a shortage of donors from some ethnic groups. However, the change was informed by dated research which was not specific to the UK, and which failed to address ethnic or gender-related differences in preferences. Preference information was elicited using discrete choice experiment (DCE) questionnaires (in English, Punjabi, Hindi, Bengali, Gujarati and Urdu) from 908 patients (508 males and 397 females). Of the 908 repondents, 96 were members of ethnicminority groups, namely white ethnic minorities (27/908) and non-white ethnic minorities (69/908), including 50 South Asians. Priority criteria included length of time spent waiting for a transplant, quality of the donor-recipient tissue match, number of adult and/or child dependants of the recipient, and whether the recipient had diseases that affected their life expectancy or quality of life. Econometric results provided evidence that preferences differed slightly according to gender, but differed to a greater extent according to ethnic origin. In significant contrast to other patients, members of non-white and South Asian ethnic minorities did not tend to prioritise recipients with a good tissue match, nor, unlike patients more generally, did they tend to prioritise younger recipients. Non-white and South Asian ethnic minorities were also less likely to prioritise those with moderate rather than severe diseases affecting life expectancy. These results reinforce the case for recognising differences in ethnic-minority group preferences in transplant allocation policy

An Exploration of Community Palliative Care Clinical Nurse Specialists Experiences of Working as Independent Prescribers: Part 2

The Department of Health has recently reiterated its commitment to the improvement in the quality of end of life care and emphasized the importance of all patients having rapid access to medication. The aim of this study was to explore the lived experiences of clinical nurse specialists who are able to prescribe independently in their role in providing support for patients with palliative care needs within the community setting. Interpretive phenomenology was employed in order to understand and interpret the experiences of six nurse independent prescribes employed as community palliative care clinical nurse specialists. This purposive sampling was preferred with semi-structured interviews as the most appropriate data collection technique. Participants interviewed reported that being able to prescribe enabled them to provide seamless, holistic care which facilitated faster access to medicines for their patients. This was particularly apparent at weekends when the patient's usual general practitioner (GP) was unavailable. Several benefits of nurse independent prescribing were also highlighted. However, the main barrier identified by most participants was the difficulty in accessing the patient's records. The overwhelming conclusion was that independent prescribing by community nurse specialists is beneficial for patients in the palliative care phase of their life and those deemed important to them as they are being cared for at home. Such benefits can also impact on other aspects of the patient's life including prompt availability of medicines, effective symptom control and consequently, an improved or enhanced quality of life for the patients and job satisfaction for the prescribing specialists nurses

Comparison of breast and bowel cancer screening uptake patterns in a common cohort of South Asian women in England

Background: Inequalities in uptake of cancer screening by ethnic minority populations are well documented in a number of international studies. However, most studies to date have explored screening uptake for a single cancer only. This paper compares breast and bowel cancer screening uptake for a cohort of South Asian women invited to undertake both, and similarly investigates these women's breast cancer screening behaviour over a period of fifteen years. Methods: Screening data for rounds 1, 2 and 5 (1989-2004) of the NHS breast cancer screening programme and for round 1 of the NHS bowel screening pilot (2000-2002) were obtained for women aged 50-69 resident in the English bowel screening pilot site, Coventry and Warwickshire, who had been invited to undertake breast and bowel cancer screening in the period 2000-2002. Breast and bowel cancer screening uptake levels were calculated and compared using the chi-squared test. Results: 72,566 women were invited to breast and bowel cancer screening after exclusions. Of these, 3,539 were South Asian and 69,027 non-Asian; 18,730 had been invited to mammography over the previous fifteen years (rounds 1 to 5). South Asian women were significantly less likely to undertake both breast and bowel cancer screening; 29.9% (n = 1,057) compared to 59.4% (n = 40,969) for non-Asians (p < 0.001). Women in both groups who consistently chose to undertake breast cancer screening in rounds 1, 2 and 5 were more likely to complete round 1 bowel cancer screening. However, the likelihood of completion of bowel cancer screening was still significantly lower for South Asians; 49.5% vs. 82.3% for non-Asians, p < 0.001. South Asian women who undertook breast cancer screening in only one round were no more likely to complete bowel cancer screening than those who decided against breast cancer screening in all three rounds. In contrast, similar women in the non-Asian population had an increased likelihood of completing the new bowel cancer screening test. The likelihood of continued uptake of mammography after undertaking screening in round 1 differed between South Asian religio-linguistic groups. Noticeably, women in the Muslim population were less likely to continue to participate in mammography than those in other South Asian groups. Conclusions: Culturally appropriate targeted interventions are required to reduce observed disparities in cancer screening uptakes

Improving prevention, monitoring and management of diabetes among ethnic minorities: contextualizing the six G’s approach

Objective: People from Black, Asian and Minority Ethnic (BAME) groups are known to have an increased risk of devel-oping diabetes and face greater barriers to accessing healthcare resources compared to their ‘white British’ counter-parts. The extent of these barriers varies by demographics and different socioeconomic circumstances that people find themselves in. The purpose of this paper is to present and discuss a new framework to understand, disentangle and tackle these barriers so that improvements in the effectiveness of diabetes interventions for BAME communities can be achieved. Results: The main mediators of lifestyle behavioural change are gender, generation, geography, genes, God/religion, and gaps in knowledge and economic resources. Dietary and cultural practices of these individuals significantly vary according to gender, generation, geographical origin and religion. Recognition of these factors is essential in increas-ing knowledge of healthy eating, engagement in physical activity and utilisation of healthcare services. Use of the six G’s framework alongside a community centred approach is crucial in developing and implementing culturally sensi-tive interventions for diabetes prevention and management in BAME communities. This could improve their health outcomes and overall wellbeing

Who should be prioritized for renal transplantation?: Analysis of key stakeholder preferences using discrete choice experiments

Background Policies for allocating deceased donor kidneys have recently shifted from allocation based on Human Leucocyte Antigen (HLA) tissue matching in the UK and USA. Newer allocation algorithms incorporate waiting time as a primary factor, and in the UK, young adults are also favoured. However, there is little contemporary UK research on the views of stakeholders in the transplant process to inform future allocation policy. This research project aimed to address this issue. Methods Discrete Choice Experiment (DCE) questionnaires were used to establish priorities for kidney transplantation among different stakeholder groups in the UK. Questionnaires were targeted at patients, carers, donors / relatives of deceased donors, and healthcare professionals. Attributes considered included: waiting time; donor-recipient HLA match; whether a recipient had dependents; diseases affecting life expectancy; and diseases affecting quality of life. Results Responses were obtained from 908 patients (including 98 ethnic minorities); 41 carers; 48 donors / relatives of deceased donors; and 113 healthcare professionals. The patient group demonstrated statistically different preferences for every attribute (i.e. significantly different from zero) so implying that changes in given attributes affected preferences, except when prioritizing those with no rather than moderate diseases affecting quality of life. The attributes valued highly related to waiting time, tissue match, prioritizing those with dependents, and prioritizing those with moderate rather than severe diseases affecting life expectancy. Some preferences differed between healthcare professionals and patients, and ethnic minority and non-ethnic minority patients. Only non-ethnic minority patients and healthcare professionals clearly prioritized those with better tissue matches. Conclusions Our econometric results are broadly supportive of the 2006 shift in UK transplant policy which emphasized prioritizing the young and long waiters. However, our findings suggest the need for a further review in the light of observed differences in preferences amongst ethnic minorities, and also because those with dependents may be a further priority.</p

Smokers making a quit attempt using e-cigarettes with or without nicotine or prescription nicotine replacement therapy : impact on cardiovascular function (ISME-NRT) - a study protocol

Background: The estimated number of cigarette smokers in the world is 1.3 billion, expected to rise to 1.7 billion by 2025, with 10 million smokers living in the U.K. Smoking is the leading, preventable death-cause worldwide, being responsible for almost 650,000 deaths in the E.U. annually. A combination of pharmacological interventions, including nicotine replacement therapy, bupropion and varenicline, and behavioural support is the most effective approach to smoking cessation. However, even the best methods have high relapse rates of approximately 75% within 6 months. Electronic (or “e-“) cigarettes use battery power to disperse a solution that usually contains propylene glycol or glycerine, water, flavouring and nicotine. E-cigarettes have become the most popular smoking cessation aid in England, however, information on their effects on cardiovascular function is limited and contradictory. As e-cigarettes are not solely nicotine-based products, existing research exploring the effects of nicotine on the cardio-vasculature provides only limited information, while their extensive uptake urges the need of evidence to inform the general public, smokers and policy-makers. Methods: This is a pragmatic, 3-group, randomised, assessor-blinded, single-centre trial exploring the cardiovascular physiological effects of the use of e-cigarettes (nicotine-free and nicotine-inclusive, assessed separately) combined with behavioural support as a smoking cessation method in comparison to the combination of NRT and behavioural support. The primary outcome will be macro-vascular function, determined by a Flow Mediated Dilatation ultrasound assessment, 6 months following participants’ “quit date”. Discussion: Participants will be assessed at baseline, 3 days following their self-determined “quit date”, at intervention end (3 months) and 6 months following their “quite date”. Findings are expected to give an indication of the cardiovascular effects of e-cigarettes both in the short- and in the medium-term period, informing the general public,policy holders and researchers, helping to define the future role of e-cigarettes as a smoking cessation aid

Youth Culturally adapted Manual Assisted Problem Solving Training (YCMAP) in Pakistani adolescent with a history of self-harm: protocol for multicentre clinical and cost-effectiveness randomised controlled trial

Introduction: Suicide is a global health concern. Sociocultural factors have an impact on self-harm and suicide rates. In Pakistan, both self-harm and suicide are considered as criminal offence’s and are condemned on both religious and social grounds. The proposed intervention ‘Youth Culturally Adapted Manual Assisted Problem Solving Training (YCMAP)’ is based on principles of problem-solving and cognitive–behavioural therapy. YCMAP is a brief, culturally relevant, scalable intervention that can be implemented in routine clinical practice if found to be effective. Method and analysis: A multicentre rater blind randomised controlled trial to evaluate the clinical and cost-effectiveness of YCMAP including a sample of 652 participants, aged 12–18 years, presenting to general physicians/clinicians, emergency room after self harm or self referrals. We will test the effectiveness of 8–10 individual sessions of YCMAP delivered over 3 months compared with treatment as usual. Primary outcome measure is repetition of self-harm at 12 months. The seconday outcomes include reduction in suicidal ideation, hopelessness and distress and improvement in health related quality of life. Assessments will be completed at baseline, 3, 6, 9 and 12 months postrandomisation. The nested qualitative component will explore perceptions about management of self-harm and suicide prevention among adolescents and investigate participants’ experiences with YCMAP. The study will be guided by the theory of change approach to ensure that the whole trial is centred around needs of the end beneficiaries as key stakeholders in the process. Ethics and dissemination: Ethics approval has been obtained from the Ethics Committee of University of Manchester, the National Bioethics Committee in Pakistan. The findings of this study will be disseminated through community workshops, social media, conference presentations and peer-reviewed journals. Trial registration number: NCT04131179

Investigating the effectiveness and feasibility of exercise on microvascular reactivity and quality of life in systemic sclerosis patients: study protocol for a feasibility study

Background: Raynaud’s phenomenon is one of the first clinical manifestations observed in systemic sclerosis (SSc). This microvasculature disorder affects mostly the digits in over 95% of SSc patients, significantly affecting their healthrelated quality of life (HRQoL) and incurring higher hospital admissions and other healthcare costs. Exercise is known to improve both micro- and macrovascular function – aerobic exercise and resistance training, separately or combined, have been demonstrated to lead to significant vasculo-physiological improvements in conditions that present vasculopathy. However, the effects of a combined exercise programme on microcirculation in SSc patients has yet to be investigated. Therefore, the purpose of this study is to assess the effects of high-intensity interval training (HIIT) combined with circuit resistance training on the microvascular function in the digital area of SSc patients. Methods: This will be a randomised controlled, feasibility trial with two arms, wherein 30 patients with SSc in receipt of medical treatment will be randomly assigned to usual care (medical treatment) or to a 12-week supervised exercise programme. Patients in the exercise group will undertake two, 45-min sessions each week consisting of 30 min HIIT (30 s 100% peak power output/30 s passive recovery) on the arm crank ergometer and 15 min of upper body circuit resistance training. Patients will be assessed before as well as at 3 and 6 months following randomisation. Primary outcomes of the study will be recruitment and retention rate, intervention acceptability and adherence to the exercise programme. Secondary outcomes include the digital area cutaneous microvascular function (laser Doppler fluximetry combined with iontophoresis), physical fitness, functional ability, upper back transcutaneous oxygen tension, body composition and quality of life (EQ-5D-5L). Selected interviews with a subsample of patients will be undertaken to explore their experiences of having Raynaud’s phenomenon and the acceptability of the exercise intervention and study procedures. Discussion: Data from this study will be used to identify the feasibility of a combined exercise programme to be implemented in SSc patients, the acceptability of the intervention and the study design, and to determine the effects of exercise on the microvasculature. Overall, this study will provide sufficient data to inform and support a full multicentre clinical trial