Myfanwy Morgan

The impact of chronic urticaria on the quality of life

The impact of chronic urticaria (CU) on the quality of life is undocumented. We assessed quality of life in patients with CU, including patients with associated delayed pressure urticaria (DPU). One hundred and forty–two out–patients completed self–administered questionnaires: a disease–specific, purpose designed questionnaire, and the Nottingham health profile (NHP). Many patients reported problems attributable to their skin condition in facets of everyday life including home management, personal care, recreation and social interaction, mobility, emotional factors, sleep, rest and work. The NHP part I scores showed restriction in the areas of mobility, sleep, energy, and demonstrated pain, social isolation and altered emotional reactions. Part II of the NHP showed that patients experienced difficulties in relation to work, looking after the home, social life, home relationships, sex life, hobbies and holidays. The patients with DPU had significantly more problems with mobility, gardening and choice of clothing than the uncomplicated CU patients. They also suffered more pain, had more problems with work and were more restricted in their hobbies.

Hearing children's voices: Methodological issues in conducting focus groups with children aged 7-11 years

Children are increasingly acknowledged to have rights in the determination of decisions that affect them. This has encouraged research to be undertaken with children themselves to understand their own views, experiences and relationships, and has demonstrated a considerable gulf from parental concerns and observations. Methods for research with children are, however, relatively under-developed. This article reflects on our experience of conducting focus groups with children aged 7-11 years to examine their experiences of living with asthma. It discusses the use of child-friendly techniques to promote participation and access children’s meanings, and raises issues about the size and composition of groups and recruitment strategies, group dynamics, tensions and sensitive moments. We conclude that focus groups are a valuable method for eliciting children’s views and experiences and complement personal interviews, while important questions relate to enhancing children’s participation in other stages of the research process.

Effect of social deprivation on blood pressure monitoring and control in England: a survey of data from the quality and outcomes framework

Objective To determine levels of blood pressure monitoring and control in primary care and to determine the effect of social deprivation on these levels. Design Retrospective longitudinal survey, 2005 to 2007. Setting General practices in England. Participants Data obtained from 8515 practices (99.3% of all practices) in year 1, 8264 (98.3%) in year 2, and 8192 (97.8%) in year 3. Main outcome measures Blood pressure indicators and chronic disease prevalence estimates contained within the UK quality and outcomes framework; social deprivation scores for each practice, ethnicity data obtained from the 2001 national census; general practice characteristics. Results In 2005, 82.3% of adults (n=52.8m) had an up to date blood pressure recording; by 2007, this proportion had risen to 88.3% (n=53.2m). Initially, there was a 1.7% gap between mean blood pressure recording levels in practices located in the least deprived fifth of communities compared with the most deprived fifth, but, three years later, this gap had narrowed to 0.2%. Achievement of target blood pressure levels in 2005 for practices located in the least deprived communities ranged from 71.0% (95% CI 70.4% to 71.6%) for diabetes to 85.1% (84.7% to 85.6%) for coronary heart disease; practices in the most deprived communities achieved 68.9% (68.4% to 69.5%) and 81.8 % (81.3% to 82.3%) respectively. Three years later, target achievement in the least deprived practices had risen to 78.6% (78.1% to 79.1%) and 89.4% (89.1% to 89.7%) respectively. Target achievement in the most deprived practices rose similarly, to 79.2% (78.8% to 79.6%) and 88.4% (88.2% to 88.7%) respectively. Similar changes were observed for the achievement of blood pressure targets in hypertension, cerebrovascular disease, and chronic kidney disease. Conclusions Since the reporting of performance indicators for primary care and the incorporation of pay for performance in 2004, blood pressure monitoring and control have improved substantially. Improvements in achievement have been accompanied by the near disappearance of the achievement gap between least and most deprived areas.

Evaluating complex interventions in End of Life Care: the MORECare Statement on good practice generated by a synthesis of transparent expert consultations and systematic reviews

BackgroundDespite being a core business of medicine, end of life care (EoLC) is neglected. It is hampered by research that is difficult to conduct with no common standards. We aimed to develop evidence-based guidance on the best methods for the design and conduct of research on EoLC to further knowledge in the field.MethodsThe Methods Of Researching End of life Care (MORECare) project built on the Medical Research Council guidance on the development and evaluation of complex circumstances. We conducted systematic literature reviews, transparent expert consultations (TEC) involving consensus methods of nominal group and online voting, and stakeholder workshops to identify challenges and best practice in EoLC research, including: participation recruitment, ethics, attrition, integration of mixed methods, complex outcomes and economic evaluation. We synthesised all findings to develop a guidance statement on the best methods to research EoLC.ResultsWe integrated data from three systematic reviews and five TECs with 133 online responses. We recommend research designs extending beyond randomised trials and encompassing mixed methods. Patients and families value participation in research, and consumer or patient collaboration in developing studies can resolve some ethical concerns. It is ethically desirable to offer patients and families the opportunity to participate in research. Outcome measures should be short, responsive to change and ideally used for both clinical practice and research. Attrition should be anticipated in studies and may affirm inclusion of the relevant population, but careful reporting is necessitated using a new classification. Eventual implementation requires consideration at all stages of the project.ConclusionsThe MORECare statement provides 36 best practice solutions for research evaluating services and treatments in EoLC to improve study quality and set the standard for future research. The statement may be used alongside existing statements and provides a first step in setting common, much needed standards for evaluative research in EoLC. These are relevant to those undertaking research, trainee researchers, research funders, ethical committees and editors.

Variations in lengths of stay and rates of day case surgery: implications for the efficiency of surgical management.

Variability in lengths of acute hospital stay and rates of day case surgery is shown to be a continuing pattern which occurs both between and within countries. A model of the determinants of health service activity is presented and the contribution of different factors to the observed variations is assessed. Differences in methods of funding health services are identified as a major determinant of the between country variations, while the within country variations largely reflect the influence of local differences in facilities and services and the organisation of care at a hospital level, as well as the independent effects of differences in clinical practice style. The main rationale for advocating a reduction in length of stay and increased use of day surgery is to increase efficiency by reducing costs per case while maintaining the quality of care. These criteria of costs, clinical outcomes and patient acceptability are examined in relation to day case surgery for an intermediate surgical procedure (inguinal hernia repair) and short stay surgery for cholecystectomy. The precise cost savings are shown to depend on the methods of costing, assumptions made and facilities employed, while factors influencing the outcomes achieved include the criteria of patient selection, the surgical techniques employed, and the adequacy of preoperative communication. Barriers to the more widespread adoption of short stay and day case surgery include practical and organisational constraints on clinical practice at a hospital level, lack of awareness among clinicians as to how far their practices differ from current norms, and clinical barriers raised by surgeons who do not see short stay policies as advantageous. Mechanisms to promote changes in clinical practice styles include independent professional audit, peer review, and involvement of clinicians in budgeting and resource allocation. Assessing quality requires that attention is given to patient acceptability and satisfaction as well as to the monitoring of clinical outcomes.

Patients’ perceptions and experiences of ‘continuity of care’ in diabetes

Background  ‘Continuity of care’ is an important aspect of quality. However, definitions are broad and existing models of continuity are not well grounded in empirical data.

Hospital inpatients’ experiences of access to food: a qualitative interview and observational study

Background  Hospital surveys indicate that overall patients are satisfied with hospital food. However undernutrition is common and associated with a number of negative clinical outcomes. There is little information regarding food access from the patients’ perspective.

Marital status, health, illness and service use

Abstract Substantial differences are shown to exist between marital groups in their mortality rates, illness experience and use of health services. Evidence is presented which suggests that only a small part of the observed variations can be attributed to the selective effects of marriage and remarriage. The main factor appears to be that of the effects of the occupancy of different marital states, with this being associated with differences in stress, life styles and social support, as well with possible differences in illness behaviour and what is perceived as their relative needs for care from the official services.

Cultural meanings of pain: a qualitative study of Black Caribbean and White British patients with advanced cancer

Pain is a common cancer-related symptom, but little research has been conducted that explores the meanings of this symptom across different ethnic groups. This study involved qualitative interviews to explore and compare the meanings of pain among 26 Black Caribbean and 19 White patients with advanced cancer. Patients were recruited from oncology outpatient clinics, a lung clinic and palliative care teams. Interview transcripts were analysed using the framework approach. A total of 23/26 Black Caribbean and 15/19 White patients reported cancer-related pain. Accounts of Black Caribbean and White patients identified pain as a ‘challenge’ that needed to be mastered by the individual, not necessarily by drugs and identified pain as an ‘enemy’ that represented an unfair attack. Two further meanings of pain emerged from Black Caribbean patients’ accounts: pain as a ‘test of faith’ that referred to confirmation and strengthening of religious belief, and pain as a ‘punishment’ that was associated with wrongdoing. These meanings influenced the extent patients were able to accommodate their distress. Pain assessment needs to consider the patients’ narratives that include the meanings they attribute to this symptom, and which may be governed by culture.

Barriers to Uptake and Adherence with Malaria Prophylaxis by the African Community in London, England: Focus Group Study

Background Rates of imported malaria in the UK and other European countries are increasing, and particularly the more serious Plasmodium falciparum malaria. This study investigated beliefs about malaria and barriers to the uptake and adherence to malaria prophylaxis experienced by African descent individuals in inner London who have low rates of use of malaria prophylaxis and high risks of P. falciparum malaria. Design Five focus groups conducted with 44 volunteers of African origin living in south London. Transcripts were analysed qualitatively. Results Failure to access the drugs prior to travel was influenced by perceptions of malaria as a low threat, non-serious and easily treatable, and a belief that they were vaccinated or somehow not at personal risk, together with concerns about side effects of the drugs, dislike of the taste and disbelief by some participants of the drugs effectiveness. Health service barriers included the cost of drugs, waiting times for appointments and uncertainty regarding appropriate medication. Adherence to the prophylaxis was hindered by difficulties in remembering complex regimes, a lack of understanding of the rationale for continuing the drugs after return to the UK and the practice of leaving drugs for relatives in Africa. However, there was some variability in beliefs and practices that appeared to be associated with socio-economic status, prior experience of malaria and the local organisation and delivery of primary care travel services. Conclusions Much non-adherence is ‘intentional’ and reflects both beliefs common to all travellers and the particular circumstances and experiences of migrants of African descent. However, there was considerable variability in beliefs and practices among participants that reflects the heterogeneity within the West African community in their socio-economic position and circumstances. Changing behaviours requires a multi-dimensional approach involving community-based health promotion that targets the beliefs of this ethnic group and health service measures.