Public involvement in health care priority setting: an economic perspective

Background  Public involvement in health care decision making and priority setting in the UK is being promoted by recent policy initiatives. In 1993, the British Medical Association called for public consultation where rationing of services was to be undertaken. The approach to priority setting advocated by many health economists is the maximization of quality adjusted life years (QALYs). Typically, for a particular health care programme, the QALY calculation takes account of four features: (1) the number of patients receiving the programme, (2) the survival gain, (3) the gain in quality of life and, (4) the probability of treatment success. Only one feature, that relating to quality of life, is based upon public preferences. If the QALY is to be used as a tool for health care resource allocation at a societal level then it should incorporate broader societal preferences.
Methods  This study used an interview-based survey of 91 members of the general public to explore whether the traditional QALY maximization model is a good predictor of public responses to health care priority setting choices.
Results and conclusions  Many respondents did not choose consistently in line with a QALY maximization objective and were most influenced by quality of life concerns. There was little support for health care programmes that provided a prognostic improvement but left patients in relatively poor states of health. The level of respondent engagement in the survey exercise was not sensitive to the provision of supporting clinical information.     

The impact of diagnostic labelling in population-based research into cerebral palsy

This study explores and quantifies the impact on the estimation of prevalence rates and aetiological hypotheses of inclusion and exclusion of different diagnostic labels and types of cerebral palsy (CP). The study was based on data from a CP register which had been established in the English North East Thames Regional Health Authority (NETRHA). As a deliberate policy, no definition of CP was given to notifiers and no inclusion or exclusion criteria were specified. Clinical information, including known malformations, genetic disorders, and features that made the diagnosis doubtful, was requested. Rates and relative risks for different inclusion and exclusion criteria were calculated. The crude rate of CP as defined above was 1.6/1000 (95%CI 1.5,1.7). "Exclusion of all cases with a known or potentially causal" association reduced this rate to 1.2/1000 (95%CI 1.0, 1.3). Comparison with an intensively investigated sample from Germany and Sweden showed that more of the same causal associations (or diagnostic labels) were found, particularly where MRI studies had been carried out. Future comparative studies in CP will need to be very precise in specifying inclusions and exclusions and in estimating the effects they will have on monitoring trends over time and aetiological hypotheses.     

APOE polymorphism, socioeconomic status and cognitive function in mid-life

Objective The aim of this study was to investigate the association of the common apolipoprotein E gene (APOE) variants with cognitive function and cognitive decline in adult mid-life and explore the possibility that APOE genotype mediates the link between socioeconomic status (SES) and cognitive function.Methods Data on cognitive function, as measured by five cognitive tests, together with APOE genotype were obtained in an occupational cohort (the Whitehall II study) of 6,004 participants aged 44–69 years (1997–1999). Cognitive change was examined in 2,717 participants who had cognitive function measured at baseline (1991–1993).Results SES based on civil service employment grade was strongly related to cognitive function. There was no association between APOE genotype and employment grade. In women, participants with APOE-ɛ4 had a lower memory score (p<0.05), but the result was sensitive to data from a small number of individuals. A marginal cross-sectional difference in the semantic fluency score was found (p=0.07), and there was a relative decline at follow-up (p<0.001, net change=−1.19; 95% CI, −1.90 to −0.49) in those with APOE-ɛ4 genotypes.Conclusions APOE-ɛ4 has little influence on cognitive decline in mid-life, whereas SES is a strong determinant, although APOE genotype may emerge as an important factor in cognitive function in later life.     

Does the patient-held record improve continuity and related outcomes in cancer care: a systematic review

OBJECTIVES: To assess the effectiveness of the patient-held record (PHR) in cancer care. BACKGROUND: Patients with cancer may receive care from different services resulting in gaps. A PHR could provide continuity and patient involvement in care. SEARCH STRATEGY: Relevant literature was identified through five electronic databases (Medline, Embase, Cinahl, CCTR and CDSR) and hand searches. INCLUSION CRITERIA: Patient-held records in cancer care with the purpose of improving communication and information exchange between and within different levels of care and to promote continuity of care and patients' involvement in their own care. DATA EXTRACTION AND SYNTHESIS: Data extraction recorded characteristics of intervention, type of study and factors that contributed to methodological quality of individual studies. Data were then contrasted by setting, objectives, population, study design, outcome measures and changes in outcome, including knowledge, satisfaction, anxiety and depression. Methodological quality of randomized control trials and non-experimental studies were assessed with separate standard grading scales. MAIN RESULTS AND CONCLUSIONS: Seven randomized control trials and six non-experimental studies were identified. Evaluations of the PHR have reached equivocal findings. Randomized trials found an absence of effect, non-experimental evaluations shed light on the conditions for its successful use. Most patients welcomed introduction of a PHR. Main problems related to its suitability for different patient groups and the lack of agreement between patients and health professionals regarding its function. Further research is required to determine the conditions under which the PHR can realize its potential as a tool to promote continuity of care and patient participation.     

Maintaining dignity for residents of care homes: A qualitative study of the views of care home staff,community nurses,residents and their families

This study uses the Framework approach to qualitative analysis to explore and compare the views of residents in care homes for older people, their families and care providers on maintaining dignity. We interviewed 33 care home managers, 29 care assistants, 18 care home nurses, 10 community nurses, 16 residents and 15 members of residents' families. The most prevalent themes were: “independence,” and “privacy”; followed by “comfort and care,” “individuality,” “respect,” “communication,” “physical appearance” and “being seen as human.” Residents and their families sometimes described incidents where a resident's dignity had been compromised. How to help residents maintain dignity and focusing on fostering dignity, can be a starting point for improving the quality of care and quality of life of residents. It is, however, important to remove the gap between the rhetoric of dignity conserving care and the reality experienced by residents in these and other care settings.     

Patients'' perceptions of joint teleconsultations: a qualitative evaluation

OBJECTIVE: To determine patient perceptions of joint teleconsultations (JTC), with particular reference to reasons underlying, and factors contributing to, patient satisfaction and dissatisfaction with this mode of health delivery. BACKGROUND: Telemedicine has been welcomed as one way of improving health-care delivery, by improving patient access to secondary care and specialist services hence widening patient choice, particularly for patients outside major conurbations. However, a recent systematic review found currently available data on patient satisfaction with telemedicine to be methodologically flawed. Qualitative evaluations offer the opportunity to elucidate the details of patient satisfaction with this mode of health-care delivery. DESIGN: Qualitative study using semi-structured interviews. SETTING AND PARTICIPANTS: Purposive sample of 28 participants of a major randomized controlled trial (Virtual Outreach study) of JTC conducted in one urban and one rural area in Britain. INTERVENTION: Joint teleconferenced consultations with the patient, patient's general practitioner (GP), and a hospital specialist. The patient and GP were sited in the local practice, while the hospital specialist was in the hospital outpatient department, and the two parties were connected by an ISDN2 link and video-conferencing software. MAIN OUTCOME MEASURES: Patient experiences of JTC, with particular reference to reasons underlying, and factors contributing to, overall satisfaction or dissatisfaction. RESULTS: Two major themes were identified: customer care and doctor-patient interaction. Patients appreciated the customer care aspects of JTC, particularly the enhanced convenience, reduced costs and improved punctuality associated with JTC. However, there were divergent views about the doctor-patient interactions with some patients expressing a sense of alienation arising from the use of technology, and problems with doctor-patient communication. CONCLUSIONS: These data add significantly to the existing literature on patient satisfaction with telemedicine, by elucidating the factors underlying overall satisfaction scores and hence have implications for future service delivery and implementation of telemedicine.     

Acceptability and perceived effectiveness of a district co-ordinating service for terminal care: implications for quality assurance

As part of a randomized controlled trial of a new district co-ordinating service for the care of terminally ill cancer patients, the activities of the nurse co-ordinators and the acceptability and perceived effectiveness of the service were assessed Co-ordinators' activities were self-recorded, professional caregivers completed a postal questionnaire, and family carers were interviewed at home Thirty-eight per cent of patients allocated to the co-ordmators were not visited at home Overall, 41% of professionals had heard of the co-ordinating service and 20% had been contacted A third of relatives, whether allocated or not to the co-ordinating service, felt that terminal care of their patient was not well co-ordinated and that they did not know how to get the help they needed for their dying relative It may be that the nurse co-ordinators were unwilling or unable to relinquish their skills in order to provide a'broker'style of co-ordination Perhaps less skilled co-ordinators would have been more successful Moreover, the co-ordinating service had no budgetary responsibility Those concerned with quality assurance in co-ordination of terminal care might consider the skill mix and professional training of the co-ordinators as well as their budgetary responsibilities and authority     

The Significance of Erb-b2 Immunostaining in Cervical Cancer

OBJECTIVE: The aim of this study was to assess the relationship between survival and erb-b2 immunohistochemical staining in patients with early stage cervical carcinoma. METHODS: Archival specimens for 126 patients with stage IB/IIA cervical carcinoma treated with radical hysterectomy and bilateral pelvic node dissection (RH-BPND) were retrieved and submitted to immunohistochemistry for ERBB2 expression. The association between positive results and poor survival was assessed in a multivariate analysis. RESULTS: Erb-b2 immunostaining was significantly associated with poor survival (P = 0.0284) but less so than parametrial extension (P = 0.0014) and nodal disease (P = 0.0106). Tumor type (squamous/adenosquamous/adenocarcinoma) and the status of surgical margins were not significantly associated with survival. CONCLUSIONS: These results supported further investigations of ERBB2 expression as a marker of high-risk disease in patients treated with RH-BPND.