Transitions at the end of life for older adults - patient, carer and professional perspectives

BackgroundThe end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.ObjectiveThe aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories.SettingEngland.ParticipantsThirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services.Design and methodsThis was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10.ResultsTransitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff.ConclusionsDevelopment of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions.FundingThe National Institute for Health Research Health Services and Delivery Research programme

Early Detection, Diagnosis and Intervention Services for Young Children with Autism Spectrum Disorder in the European Union (ASDEU): Family and Professional Perspectives

Early services for ASD need to canvas the opinions of both parents and professionals. These opinions are seldom compared in the same research study. This study aims to ascertain the views of families and professionals on early detection, diagnosis and intervention services for young children with ASD. An online survey compiled and analysed data from 2032 respondents across 14 European countries (60.9% were parents; 39.1% professionals). Using an ordinal scale from 1 to 7, parents’ opinions were more negative (mean = 4.6; SD 2.2) compared to those of professionals (mean = 4.9; SD 1.5) when reporting satisfaction with services. The results suggest services should take into account child’s age, delays in accessing services, and active stakeholders’ participation when looking to improve services

Intracameral cefuroxime and moxifloxacin used as endophthalmitis prophylaxis after cataract surgery: systematic review of effectiveness and cost-effectiveness

Postoperative endophthalmitis is one of the most serious potential complications of ocular lens surgery. Its incidence can be reduced by means of antibiotic prophylaxis. Although the prophylactic use of intracameral cefuroxime has been extended, other drugs, such as moxifloxacin, have arisen as alternatives. We performed a systematic literature review on the effectiveness and efficiency of intracameral cefuroxime and moxifloxacin for the prophylaxis of postoperative endophthalmitis after cataract surgery. Several bibliographic databases were searched up to October 2010 and were updated up to January 2013. Outcomes were the onset of endophthalmitis after surgery and the cost-effectiveness ratio of using both antibiotic prophylaxis alternatives. The following were included: a clinical trial reported in two papers, six observational studies, and an economic evaluation. All studies assessed cefuroxime compared with another antibiotic prophylaxis or no prophylaxis. The only randomized controlled trial performed by the European Society of Cataract and Refractive Surgery found that intracameral cefuroxime is significantly more effective than not using prophylaxis or the use of a topical antibiotic. The observational studies support these results. The economic evaluation compared different prophylaxis regimens and concluded that intracameral cefuroxime showed the best cost-effectiveness ratio. Both the observational studies and the economic evaluation have methodological limits that reduce their validity. This review confirmed that cefuroxime can prevent endophthalmitis after cataract surgery. Further randomized controlled trials, with large sample sizes, are required to compare different antibiotic prophylaxis regimens