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Biomedical subjects

J Hewison

Publications and source records attributed to J Hewison.

At least 19 recordsLinked to original sources
PubMed2006

Attitudes to prenatal and preimplantation diagnosis in Saudi parents at genetic risk.

BACKGROUND: Prenatal diagnosis (PND) is only available for severe abnormality in Saudi Arabia, and preimplantation genetic diagnosis (PGD) has been proposed as a valuable alternative. The acceptability of PGD is unexplored, and may ultimately determine the value of this technology in Saudi Arabia. This study reports attitudes towards PND and PGD of Saudi couples offered genetic counselling following the birth of a child with a single gene or chromosomal condition. METHODS: Thirty couples attending the King Faisal Specialist Hospital and Research Centre in Riyadh were interviewed using a semi-structured questionnaire. One couple had previous experience of PND and none had experience of PGD or IVF. RESULTS: Eight of the 30 couples (27%) would only accept PGD; four (13%) only PND; three (10%) either technology; the remainder would accept neither test, or were unsure. The main concerns of those who would accept neither technology were related to personal religious views. Specific concerns about PGD related to the IVF procedure, the risk of multiple pregnancies, the chance of mistakes and the chance of not getting pregnant. A high proportion of couples (six out of seven; 86%) who had a child with thalassaemia expressed interest in PGD, and all would be prepared to use technology to avoid having an affected child. Views were more mixed for the other conditions. CONCLUSION: PGD is acceptable to many couples and for some, it represents a valuable alternative to PND. However, parents' concerns are complex, and the acceptability of different reproductive technologies must be established on an individual basis.

Abortion, Eugenic↗
PubMed2006

Amniocentesis results: investigation of anxiety. The ARIA trial.

OBJECTIVES: The Amniocentesis Results: Investigation of Anxiety (ARIA) trial tested two hypotheses: first, that giving amniocentesis results out on a fixed date alters maternal anxiety during the waiting period, compared with a policy of telling parents that the result will be issued 'when available' (i.e. a variable date), and secondly, that issuing early results from a rapid molecular test alters maternal anxiety during the waiting period, compared with not receiving any results prior to the karyotype. The effects of the two interventions on anxiety 1 month after receiving karyotype results were also examined. DESIGN: A multi-centre, randomised, controlled, open fixed sample, 2 x 2 factorial design trial, with equal randomisation. SETTING: Twelve hospitals in England offering amniocentesis as a diagnostic test for Down's syndrome. PARTICIPANTS: A total of 226 women who had had an amniocentesis were randomised between June 2002 and July 2004. Eight women with abnormal results or test failure were excluded post-randomisation. INTERVENTIONS: Issuing karyotype results on a prespecified fixed date, rather than issuing them as soon as they became available and issuing karyotype results alone, or subsequent to issuing results from a rapid molecular test for the most common chromosomal abnormalities. MAIN OUTCOME MEASURES: Average anxiety during the waiting period, calculated using daily scores from the short version of the Spielberger State-Trait Anxiety Inventory (STAI). Recalled anxiety, measured 1 month after receiving karyotype results, using a rating scale. Anxiety at the 1-month follow-up, measured using the short-form STAI. RESULTS: There was no evidence that giving out karyotype results on a fixed or on a variable date altered maternal anxiety during the waiting period. However, the analysis only had sufficient power to detect a moderate to large effect. Issuing early results from a partial, but rapid, test reduced maternal anxiety during the waiting period, compared with receiving only the full karyotype results. This was a moderate to large effect. In addition, group differences in recalled anxiety reflected fairly closely the differences in anxiety women had experienced while waiting for results. One month after receiving normal karyotype results, anxiety was low in all groups, but women who had been given rapid test results were more anxious than those who had not. This was a small to moderate effect. CONCLUSIONS: Since there are no clear advantages in anxiety terms of issuing karyotype results as soon as they become available, or on a fixed date, women could be given a choice between them. Rapid testing was a beneficial addition to karyotyping, at least in the short term. This does not necessarily imply that early results would be preferred to comprehensive ones if women had to choose between them. There should be further research, including more qualitative studies, into the causes, characteristics and consequences of anxiety associated with prenatal testing. The effects of different testing regimes on short- and long-term anxiety, on the preferences of women and on the relationship between anxiety and preference should be investigated. More research is needed on the ways in which information might be used to minimise anxiety in different testing regimes. Further research is also required into the policy implications of incorporating individual preferences for different testing regimes into prenatal testing programmes.

Adult↗
PubMed2005

How should we measure informed choice? The case of cancer screening.

Informed choice is increasingly recognised as important in supporting patient autonomy and ensuring that people are neither deceived nor coerced. In cancer screening the emphasis has shifted away from just promoting the benefits of screening to providing comprehensive information to enable people to make an informed choice. Cancer screening programmes in the UK now have policies in place which state that it is their responsibility to ensure that individuals are making an individual informed choice. There is a need to evaluate whether such policies mean that those people invited for screening are making informed choices, and how comprehensive information affects other variables such as uptake, cost effectiveness, and satisfaction. At the present time, there is no validated measure of informed choice in cancer screening. Such a measure could be used to evaluate the effectiveness of interventions to increase informed choice and levels of informed choice in a population invited for screening. It could encourage health professionals to be accountable. Factors important when measuring informed choice in cancer screening include an individual's understanding of the limitations of screening, the ability to make an autonomous choice, and the difference between choice and behaviour.

Attitude of Health Personnel↗
PubMed2004

Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review.

OBJECTIVES: To address five broad questions concerned with knowledge, anxiety, factors associated with participation/non-participation in screening programmes and the long-term sequelae of false-positive, true-positive in newborns and true-negative results. DATA SOURCES: Five electronic databases, two journals and attempts were made to locate unpublished work. REVIEW METHODS: This review started from a substantial literature base that provided the basis for (a) scoping the literature, (b) informing search strategy terms and (c) identifying preliminary article inclusion and exclusion criteria. The main eligibility criteria were: any screening programme aimed at pregnant women or newborn babies that included a 'genetic' target condition, this included chromosomal anomalies; any study that reported psychosocial data collected directly from parents. The data extraction form developed for this study elicited data from the selected studies. The data were entered into a database, which provided a summary of the included papers. RESULTS: A total of 288 candidate publications were identified, 106 of which were eligible: 78 were concerned with antenatal screening and 28 with newborn screening. It was found that levels of knowledge adequate for decision-making were not being achieved despite information leaflets and videos having some effect. Studies that have succeeded in increasing knowledge have not observed a corresponding increase in anxiety, although some anxiety might be an appropriate response and may aid coping and decision-making. Anxiety is clearly raised in women receiving positive screening results, especially young women. However, evidence is lacking of a beneficial (i.e. reassuring) effect of receiving a screen-negative result. Anxiety in screen-positive women falls on receipt of subsequent reassuring results, but some residual anxiety may remain. A minority (perhaps up to 30%) of women receiving a screen-positive result in pregnancy expressed regret about their screening decision. Uptake of neonatal screening has been treated as a 'given' and not as a research topic. CONCLUSIONS: The results of this review have many implications for the work of the National Screening Committee. The most pressing of these, in order of priority, relate to: the inadequacy of current procedures for achieving informed consent; the cost of providing a satisfactory service; the unmet needs of 'false-positives', and the unmet needs of women's partners, particularly in carrier screening. It is suggested that research is conducted on the above four topics in order to fill gaps in the evidence base that relate to screening technologies which have been available for many years. In addition, future screening programmes will create a new list of research questions, based on the same main agenda but applied to new areas, for example, new conditions such as haemoglobinopathies and fragile X syndrome; new client groups such as young women and minority ethnic groups; and new testing modalities such as ultrasound.

Adult↗
PubMed2002

What are Pakistani women's experiences of antenatal carrier screening for beta-thalassaemia in the UK? Why it is difficult to answer this question?

In the UK antenatal screening of Pakistani women for thalassaemia carrier status is commonplace. This paper describes our attempts to investigate women's experiences of such screening and the reasons why this proved difficult to do. These included a pregnancy per year and communications failure between different health professionals involved in antenatal haemoglobinopathy screening. These issues have implications for the way in which such screening is conducted and these are discussed.

Diagnostic Tests, Routine↗
PubMed2002

The Leeds University Maternity Audit Project.

OBJECTIVES: To measure levels of and changes in compliance with evidence-based recommendations in obstetrics in the UK. To identify barriers to and factors associated with compliance. DESIGN: A quantitative case-note audit for 1988 and 1996, and a qualitative interview study of key staff. SETTING: Twenty maternity units, selected at random from all UK units SUBJECTS: Fifty consecutive cases of pre-term delivery (PTD), Caesarean section (CS), instrumental delivery (ID), and perineal repair (PR) operations in each period in each unit. The lead clinician, midwifery manager, a senior midwife, neonatologist, and middle-grade obstetrician in each unit. MAIN OUTCOME MEASURES: Maternal steroid use in PTD, antibiotic use in CS, use of the ventouse (vacuum extractor) rather than forceps as instrument of first choice for ID, and use of polyglycolic acid (PGA) sutures for PR in each time period. Facilities for implementing, staff attitudes to, and the degree of planning to follow each recommendation. MAIN RESULTS: The median proportion of ventouse as instrument of first choice in each unit was 8% (range 0-32%) in 1988, rising to 64% (range 0-98%) in 1996. PGA use for PR was 0% (range 0-30%) in 1988, and 72% (range 0-100%) in 1996. Steroid use for eligible PTD was median 0% (range 0-23%) in 1988, rising to 82% (range 63-95%) in 1996. Antibiotic use for CS was 7% (range 0-25%) rising to 84% (range 10-100%) in 1996. There was no relationship between unit size, type of unit, facilities, staff attitudes or degree of planning, and compliance with the recommendations, nor was the level of adherence to one standard typically correlated with adherence to the others. However, there was a positive correlation (R = 0.6, P < 0.005) between local availability of the Cochrane database of perinatal trials and unit compliance with the audit standards in the latter time period. CONCLUSIONS: We have documented a massive shift in practice in line with the evidence, although many units still have substantial room for improvement. About 2000 wound infections, 200 deaths due to prematurity, nearly 8000 women in pain from catgut sutures, and 1500 cases of severe perineal trauma from forceps remain preventable. The reasons why units vary remain obscure, although the qualitative interviews often revealed local factors such as key enthusiastic staff. There was no sign of evidence being positively driven into practice by any systematic managerial process. The relationship between Cochrane availability and high-standard care may be simply a marker of commitment to the evidence, but it remains plausible that if senior staff make Cochrane available for their juniors, audit compliance improves.

Adult↗
PubMed2001

Use of videotapes for viewing at home to inform choice in Down syndrome screening: a randomised controlled trial.

A randomised trial was carried out to assess the effect of a Down syndrome screening video on test uptake, knowledge and psychological stress. A total of 2000 women referred for antenatal care were allocated to two equal groups: one to be sent a video to their home, before their hospital booking visit, and a control group. All women also received screening information in the form of a leaflet before booking and from a midwife at booking. The video had no effect on the screening uptake rate: 638/993 (64.2%) and 652/1007 (64.7%) in the video and control groups, respectively. Women were requested to return the video for reuse in other pregnancies and 612 (62%) did so. A subset of 1200 women were selected to be posted at 17-19 weeks' gestation a self-completed questionnaire to assess the psychological endpoints. Knowledge of screening was increased in the video group with a mean score of 7.3 compared with 6.7 in the controls, a statistically significant difference (t=3.24, p=0.0005). There were no significant differences between the groups in specific worries about abnormalities in the baby, and general anxiety. We conclude that a video can increase knowledge without affecting the uptake of the test, or psychological stress.

Anxiety↗
PubMed2001

Descriptive information about Down syndrome: a content analysis of serum screening leaflets.

It is recommended practice that prior to prenatal screening, women receive information about the condition(s) being tested for. The present study critically evaluated information about Down syndrome as contained in 80 leaflets provided to pregnant women in the UK prior to serum screening. First, a content analysis by information type was conducted to give an overall picture of the material provided. Second, the image of the condition as conveyed by the content was analysed and compared with a similar study of cystic fibrosis (CF) screening leaflets. The majority of information (89%) was of a medico-clinical nature, with 11% addressing other issues associated with Down syndrome. The median number of sentences describing the condition was one, with 33% of the leaflets containing no descriptive information. Overall, a negative image of Down syndrome was conveyed by the leaflets, which contrasted with a more neutral image of CF in the comparison study. In order to facilitate informed choices, more attention should be paid to providing women with information about Down syndrome prior to serum screening. Such information needs to be more balanced in its construction, with thought given to the needs of the reader, and to the tone and the content of the message conveyed.

Cystic Fibrosis↗
PubMed2001

Prenatal diagnosis for inherited deafness--what is the potential demand?

Genetic testing for inherited deafness is now available within some genetics centres. This study used a structured questionnaire to assess the potential uptake of prenatal diagnosis (PND) for inherited deafness, and document the opinions of deaf and hearing individuals toward PND and termination of pregnancy (TOP) for hearing status. Participants were self-selected from the whole of the UK, of whom 644 were deaf, 143 were hard of hearing or deafened, and 527 were hearing individuals who had either a deaf parent or child. The results showed that 21% of deaf, 39% of hard of hearing and deafened, and 49% of hearing participants said they would consider PND for deafness. Six percent of deaf, 11% of hard of hearing and deafened, and 16% of hearing participants said they would consider a TOP if the fetus was found to be deaf. Two percent of deaf participants said they would prefer to have deaf children and would consider a TOP if the fetus was found to be hearing.

Abortion, Eugenic↗
PubMed2001

Number of non-diabetic drugs: a simple comorbidity indicator for diabetes?

INTRODUCTION: The number of non-diabetic drugs, taken by a patient with diabetes at any one point in time, has been validated in previous studies as a comorbidity indicator. AIM: The aim of the paper is to examine the relationship between this comorbidity indicator and health status in people with Type 2 diabetes. METHOD: The analysis presented is from a prospective cohort study of people with Type 2 diabetes before and after commencing insulin therapy, with simultaneous collection of health status, clinical and other comparative data. RESULTS: Of the 48 people for whom both health status and drug data were available, 26 (54%) were taking at least one non-diabetic drug and 16 (33%) were taking 3 or more non-diabetic drugs, at the baseline assessment. There were no significant relationships between the number of non-diabetic drugs taken, and age, duration of diabetes or baseline HbA1c measurements. However, there were statistically significant relationships between the number of non-diabetic drugs and health status, in terms of depression and physical function. CONCLUSION: Drug data are routinely recorded in primary care and therefore the number of non-diabetic drugs is a potentially widely available indicator. This indicator could be a useful, simple addition to datasets that not only proxies comorbidity but also relates to patients' physical function and depression status.

Adult↗
PubMed2001

Prenatal screening for Down's syndrome: some psychosocial implications of a 'screening for all' policy.

The National Screening Committee of the Department of Health has made recommendations to the Government advising that prenatal screening for Down's syndrome should be offered to all pregnant women regardless of their age. As most women over 35 are already offered some form of testing, affected pregnancies in younger women will account for the majority of any increased overall detection rate. Therefore, while a 'screening for all' policy will offer wider reproductive choices to more women, it is likely to specifically increase the number of young women experiencing termination of pregnancy for abnormality. A number of inter-dependent factors predispose some women to high levels of psychological distress following termination, and a combination of these factors is most likely to be found in the very young. In addition, very young women often have little knowledge of prenatal testing and may be more likely to accept screening presented as 'routine' without considering the consequences. At the point where decisions about diagnostic testing or termination are made, more specialised support may be indicated for some very young women. If the UK National Screening Committee's recommendations are taken forward therefore, service providers should ensure suitable support is available for some of their more vulnerable clients.

Abortion, Induced↗
PubMed2001

A review of the literature on the midwife and community-based maternity care.

OBJECTIVE: to review the UK literature relating to community-based maternity care. DESIGN: all UK research studies published between 1970 and 1998 relating to community-based maternity care were included. Searches were made via a number of electronic databases using defined search terms. All papers included were independently reviewed by a minimum of two researchers. Study findings were tabulated using a pro-forma. Findings are summarised in this paper. FINDINGS: a total of 241 papers were deemed to meet all inclusion criteria. The majority of studies used descriptive methods with only 11 papers reporting findings from randomised controlled trials. Findings are reported relating to clinical outcomes, the care process and the views of women and health professionals. CONCLUSION AND POLICY IMPLICATIONS: the overall quality of the evidence in the papers reviewed was very mixed. What limited evidence there is suggests that, for the majority of women, care in community settings is as safe and as acceptable to women as care provided in hospital. Despite a large volume of literature, the amount that is known about midwives' contribution to care, and what women think about it, is limited. There is a need for controlled studies to compare outcomes for different patterns of care and for well-designed observational studies to provide information on the care process.

Attitude of Health Personnel↗
PubMed2001

A review of the literature on women's views on their maternity care in the community in the UK.

OBJECTIVES: to review the UK literature relating to women's views on community-based maternity care between 1970 and 1998. DESIGN: UK research studies examining community-based maternity care were identified by searching several electronic databases using defined search terms. Data extraction was carried out by two or more independent reviewers using a pro-forma. Findings are summarised in this paper. FINDINGS: a total of 624 papers were retrieved and 241 met inclusion criteria. Only 40 papers included some form of comparison group. Examples from more recent and relevant papers focusing on women's views of their maternity care are described and discussed. Women expressed high levels of satisfaction with care. However, there are serious gaps in the research evidence. CONCLUSION AND POLICY IMPLICATIONS: most of the papers included in the review were descriptive and few studies were of a size and quality to enable findings to be generalised to other groups and settings. More information is needed on the care process. There is a need for research studies to examine consumer views where different groups of women experience different care processes.

Attitude to Health↗
PubMed2001

Pakistani and indigenous "white" women's views and the Donabedian-Maxwell grid: a consumer-focused template for assessing the quality of maternity care.

A criticism of using women's views as an assessment of the maternity services in the UK is that the views of some have been under-represented and inappropriately researched, in particular those from minority ethnic groups. In addition, there is criticism that "what" has been assessed within the maternity services, and other health-care arenas, has been driven by the perspective of those who provide the service rather than those who use it. The purpose here is to explore integrating Pakistani and indigenous "white" women's views with the Donabedian-Maxwell grid, as a means of offering a consumer-focused template for underpinning quality assessment and quality assurance strategies for the maternity services in the UK.

Arabs↗
PubMed2001

Does general practitioner involvement in commissioning maternity care make a difference?

OBJECTIVES: To evaluate the impact of general practitioners' commissioning of maternity services on women's experiences of care and on resource use, and to consider the implications for primary care commissioning. METHOD: Comparison of women's experiences and resource use between 11 commissioning and 10 non-commissioning general practices. Face-to-face interviews with 212 staff in general practices, National Health Service trusts and health authorities between 1996 and 1998 to establish how maternity care was organised. Women's experience of information, choice, control and resource use obtained by questionnaire mailed 4 weeks post-partum. Data were analysed using multi-level modelling to adjust for case-mix differences. RESULTS: After two reminders, 1957 women (62%) responded to the questionnaire (inter-practice range 52-81%). There were no significant differences in women's experience of care or their resource use between commissioning and non-commissioning practices. Commissioning practices were more likely to be associated with more vertically integrated models of service organisation, but responses to only three of 21 questions about experience of information, choice and control over care, or about resource use, differed between the four models of service organisation identified. CONCLUSIONS: The expectation that giving primary care organisations responsibility for commissioning care will result in improved patients' experiences of care or better use of resources should be treated with caution. The presence of strong national policy may be equally important. Models of service organisation are not proxies for quality of care. The most powerful force shaping patients' experiences of care may be health care professionals' ability to translate national policy into local services.

Continuity of Patient Care↗
PubMed2000

Child care responsibilities and participation in continuing education and training: issues relating to motivation, funding and domestic roles.

Changes in the organization and funding of health services and in the education and training of NHS staff have placed increased influence in the hands of employers and individual students as users of continuing professional development. Against this policy context an interview study was carried out with students participating in a range of continuing professional development activities. The sample included 89 participants attending a range of courses. Approximately half of the sample had children. Many of the participants were attending courses in their own rather than in their employers' time and several were self-funding. The influence of domestic responsibilities on motivations, along with the impact of course participation on home and family life, were examined. Results revealed that those with children were less likely to perceive continuing education in a positive light compared to those without. The impact of course participation on home and family life was invariably negative and for some the consequences were serious. The policy implications of findings are discussed.

Adult↗
PubMed2000

Antenatal home blood pressure monitoring: a pilot randomised controlled trial.

OBJECTIVE: To measure recruitment to, compliance with, and the acceptability of a trial designed to test whether a reduced schedule of antenatal visits combined with training in self-measurement of blood pressure at home may improve hypertension screening and save money. To test the specific hypothesis that even after taking into account extra unscheduled visits, the reduced schedule with ambulatory monitoring reduces total visits. DESIGN: A pilot randomised controlled trial. SETTING: Four urban and four rural general practices in Yorkshire and Lancashire. POPULATION: One hundred and five low risk women in the third trimester of pregnancy. Eighty women participated. INTERVENTION: Women were invited to participate at 24-28 weeks. Those who accepted were allocated either to a standard nine subsequent visit schedule (30, 32, 34, 36, 37, 38, 39, 40, 41 weeks) or to a reduced schedule (34, 38, 41 weeks). Those in the latter group measured their blood pressure weekly using a portable sphygmomanometer at home. MAIN OUTCOME MEASURES: Recruitment, total number of clinic visits, frequency of blood pressure measurement, schedule preference, and anxiety. RESULTS: Although there were more unscheduled visits in the home monitoring group, this did not outweigh the reduction in scheduled visits, (total visits reduced from 7 x 4 to 4 x 5, P < 0 x 001), and blood pressure was measured during more weeks (9 vs 7 weeks, P < 0 x 001) in the experimental group. Most women expressed a preference for the reduced schedule both when the idea was first suggested, and after they had experienced it, and there were no significant differences in anxiety. CONCLUSION: Replacement of antenatal screening visits with home blood pressure monitoring is acceptable to women. The reduction in clinic visits is not compensated by an increase in visits for other reasons and overall blood pressure measurement is omitted less often. Whether it reduces adverse outcomes or has any rare side effects will require a larger trial, but this pilot study indicates that it is likely to be safe, and that such a large trial would be feasible.

Adult↗