Hilary Bekker

Uptake of cystic fibrosis testing in primary care: supply push or demand pull?

OBJECTIVE--To determine the acceptability and feasibility of screening for carriers of cystic fibrosis in a primary care setting. DESIGN--Follow up study over 15 months of patients offered carrier testing by mouthwash. SETTING--A general practice in inner London. SUBJECTS--5529 patients aged 18-45 invited by various methods and combinations of methods (letter, booklet, personal approach) for testing. MAIN OUTCOME MEASURES--Uptake of screening, anxiety, and knowledge of test. RESULTS--957 (17%) invitees were screened over the 15 months. 28 carriers and no carrier couples were detected. Uptake rates were 12% (59/502 patients) among patients invited by letter and tested by appointment; 9% (47/496) among patients invited by letter, with leaflet, and tested by appointment; 4% (128/2953) among patients invited by letter six weeks before the end of the study and tested by appointment; 17% (81/471) among patients offered passive opportunistic testing; 70% (453/649) among patients offered active opportunistic testing; and 25% (22/88) among patients offered active opportunistic testing by appointment. A short term rise in anxiety among those given a positive test result had dissipated by three months. At three months about one fifth and one third of those given positive and negative results respectively did not understand their results correctly. CONCLUSION--These results suggest that the strongest variable in determining uptake of screening is the active approach by a health professional offering immediate testing. It remains to be resolved whether the high uptake rates achieved by active recruitment indicate a supply push for this new test rather than a demand from the population.

A systematic review of studies assessing and facilitating attitudes towards professionalism in medicine

Objectives  An essential aspect of medical education is to facilitate the development and assessment of appropriate attitudes towards professionalism in medicine. This systematic review provides a summary of evidence for measures that have been used to assess these attitudes and their psychometric rigour. It also describes interventions that have been found to be effective in changing such attitudes.

Strategies and interventions for the involvement of real patients in medical education: a systematic review

Objectives  There is increasing emphasis on encouraging more active involvement of patients in medical education. This is based on the recognition of patients as ‘experts’ in their own medical conditions and may help to enhance student experiences of real‐world medicine. This systematic review provides a summary of evidence for the role and effectiveness of real patient involvement in medical education.

Understanding why decision aids work: linking process with outcome

Decision aids help patients make treatment choices. There is little empirical evidence to explain how they work. The results from this randomised controlled trial comparing routine with decision-aided consultations in the prenatal diagnosis for Downs syndrome context are used to describe the strategies employed during decision making, to assess the impact of a decision aid on decision processes, and to investigate decision process and outcome associations. Data were elicited from two content analyses of consultation transcripts and questionnaires assessing knowledge, anxiety, decisional conflict, reasons, and information usefulness. 68/106 women completed measures at consultation and follow-up. Decision-aided women employed more cognitive and emotional strategies during decision making. More negative evaluations during decision making were associated with better outcomes. Decision-aided consultations facilitated the employment of strategies associated with more effective choices. These consultations take longer and elicit greater expressions of negative affect, so may be less rewarding encounters for health professionals.

Do personal stories make patient decision aids more effective? A critical review of theory and evidence.

BackgroundPatient decision aids support people to make informed decisions between healthcare options. Personal stories provide illustrative examples of others’ experiences and are seen as a useful way to communicate information about health and illness. Evidence indicates that providing information within personal stories affects the judgments and values people have, and the choices they make, differentially from facts presented in non-narrative prose. It is unclear if including narrative communications within patient decision aids enhances their effectiveness to support people to make informed decisions.MethodsA survey of primary empirical research employing a systematic review method investigated the effect of patient decision aids with or without a personal story on people’s healthcare judgements and decisions. Searches were carried out between 2005-2012 of electronic databases (Medline, PsycINFO), and reference lists of identified articles, review articles, and key authors. A narrative analysis described and synthesised findings.ResultsOf 734 citations identified, 11 were included describing 13 studies. All studies found participants’ judgments and/or decisions differed depending on whether or not their decision aid included a patient story. Knowledge was equally facilitated when the decision aids with and without stories had similar information content. Story-enhanced aids may help people recall information over time and/or their motivation to engage with health information. Personal stories affected both “system 1” (e.g., less counterfactual reasoning, more emotional reactions and perceptions) and “system 2” (e.g., more perceived deliberative decision making, more stable evaluations over time) decision-making strategies. Findings exploring associations with narrative communications, decision quality measures, and different levels of literacy and numeracy were mixed. The pattern of findings was similar for both experimental and real-world studies.ConclusionsThere is insufficient evidence that adding personal stories to decision aids increases their effectiveness to support people’s informed decision making. More rigorous research is required to elicit evidence about the type of personal story that a) encourages people to make more reasoned decisions, b) discourages people from making choices based on another’s values, and c) motivates people equally to engage with healthcare resources.

The impact of population based screening for carriers of cystic fibrosis.

The purpose of the study was to evaluate the short-term effects of population based screening for carriers of cystic fibrosis. The outcome measures included perceptions of health, anxiety, and understanding of test results. Those adults aged between 18 and 45, registered with a general practice in Inner London, who accepted the offer of carrier testing, completed questionnaires before testing, upon receipt of results, and three months later. Full data were obtained from 427 with negative test results and 14 carriers. Receipt of results had no effect upon perceptions of health or perceived risk of having an abnormal baby. Those receiving a positive test result were significantly more anxious upon receipt of this result. By three months, this anxiety had dissipated. While knowledge of the test improved from before to after testing, by three months there was some decay. Although the residual risk among those with a negative result of being a carrier was given as 1:135, at least 17% of those receiving a negative result incorrectly believed that they were at no risk of having a child with cystic fibrosis. Five of the 14 receiving a positive result erroneously believed that their results meant that they probably, but not definitely, carried the gene for cystic fibrosis. In the longer term the greatest problem of population screening would appear to be one of false reassurance rather than anxiety. Longer term studies are needed to determine how well carrier status information is retained, and how carriers and carrier couples plan and respond to pregnancy and how much understanding they retain of their test results.

Perceptions of professionalism in medicine: a qualitative study

Purpose  Current guidelines for medical undergraduate education require students to develop appropriate attitudes towards professionalism. As much of the literature defines professionalism in vague terms − altruism, humanism, excellence − few studies have operationalised medical professionalism. This study aims to describe the views and experiences individuals have about medical professionalism to provide a more comprehensive understanding of medical professionalism.

Is anxiety a suitable measure of decision aid effectiveness: a systematic review?

Several trials have employed anxiety measures to assess decision aid effectiveness. This study employed a systematic review method to integrate their findings. The affective impact of decision aids and the appropriateness of anxiety as a measure of decision aid effectiveness are explored. From 11,361 citations generated from searching electronic databases and journals, 26 randomised controlled trials evaluated patient decision aids; 10 included anxiety measures (HADS; STAI). The data were too heterogeneous to integrate statistically. No studies showed an increase in anxiety from exposure to decision aids versus usual care. Some patterns emerged between level of anxiety and characteristics of the decision. As raised levels of anxiety are associated with both more effective decision strategies and stressful health interventions, anxiety is an inappropriate measure to employ when evaluating decision aids. Future research needs to investigate the relationship between affect, cognition and decision aids in order to facilitate effective patient decision making.

Elective orthognathic treatment decision making: a survey of patient reasons and experiences

Objective Few studies have explored decisions about orthognathic treatment (OGT) from the patients perspective. This study describes the factors associated with the patients decision to have or not have orthognathic treatment, and assesses whether the process can be considered to be informed decision making. Design A cross-sectional survey employing both interview and questionnaire methods, conducted in four OGT services in Yorkshire. Sample Participants were patients aged over 16 years, either making an OGT decision over a 6-month period or had made their treatment choice 18–42 months prior to the study start date in 2003. Measures Questionnaires assessed patient demographics, dental history and psychopathology (anxiety, satisfaction with self, body satisfaction, facial appearance); interviews explored patients’ reasons for, and experiences of, orthognathic treatment. Results Of 138 patients approached, 61 participated (mean age 25 years, 66% female). Psychopathology scores were within the normal range. The thematic content analysis of interview transcripts found: reasons given for having OGT were to improve the ‘bite’, as well as gaining a more normal facial appearance; most patients reported the service information was satisfactory, but about half made negative comments, with some reporting staff communications made them feel worse; knowledge of OGT risks and benefits was poor; patients had strong emotions about their facial appearance and the orthognathic treatment they received, which did not seem to be addressed by current practice. Conclusions Some OGT patients do not appear to be making informed decisions about their treatment. They seem to have unmet needs in relation to support for their decision making, and managing the emotional effects of undergoing and adjusting to treatment. The implications for information provision, assessment and support during treatment are discussed.

A cluster randomised controlled trial of a web based decision aid to support parents' decisions about their child's Measles Mumps and Rubella (MMR) vaccination

Highlights • The use of decision aids for immunisation decisions is under researched and controversial.• Parents receiving a decision aid or a leaflet had reduced decisional conflict for the MMR decision.• MMR uptake in the decision aid and control arms achieved levels required for population immunity.• Leaflet arm parents were less likely to vaccinate their child.• Childhood immunisation decision aids can achieve both informed decision-making and uptake.