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Abstract Background Missing data may bias the results of clinical trials and other studies. This study describes the response rate, questionnaire responses and financial costs associated with offering participants from a multilingual population the option to complete questionnaires over the telephone. Methods Design: Before and after study of two methods of questionnaire completion. Participants and Setting: Seven hundred and sixty five pregnant women from 25 general practices in two UK inner city Primary Care Trusts (PCTs) taking part in a cluster randomised controlled trial of offering antenatal sickle cell and thalassaemia screening in primary care. Two hundred and four participants did not speak English. Sixty one women were offered postal questionnaire completion only and 714 women were offered a choice of telephone or postal questionnaire completion. Outcome measures: (i) Proportion of completed questionnaires, (ii) attitude and knowledge responses obtained from a questionnaire assessing informed choice. Results The response rate from women offered postal completion was 26% compared with 67% for women offered a choice of telephone or postal completion (41% difference 95% CI Diff 30 to 52). For non-English speakers offered a choice of completion methods the response rate was 56% compared with 71% for English speakers (95% CI Diff 7 to 23). No difference was found for knowledge by completion method, but telephone completion was associated with more positive attitude classifications than postal completion (87 vs 96%, 95% CI diff 0.006 to 15). Compared with postal administration the additional costs associated with telephone administration were £3.90 per questionnaire for English speakers and £71.60 per questionnaire for non English speakers. Conclusion Studies requiring data to be collected by questionnaire may obtain higher response rates from both English and non-English speakers when a choice of telephone or postal administration (and where necessary, an interpreter)is offered compared to offering postal administration only. This approach will, however, incur additional research costs and uncertainty remains about the equivalence of responses obtained from the two methods.

Objective: To evaluate England's NHS newborn sickle cell screening programme performance in children up to the age of 5 years.Design: Cohort of resident infants with sickle cell disease (SCD) born between 1 September 2010 and 31 August 2015 and followed until August 2016.Participants: 1317 infants with SCD were notified to the study from all centres in England and 1313 (99%) were followed up.Interventions: Early enrolment in clinical follow-up, parental education and routine penicillin prophylaxis.Main Outcome Measures: Age seen by a specialist clinician, age at prescription of penicillin prophylaxis and mortality.Results: All but two resident cases of SCD were identified through screening; one baby was enrolled in care after prenatal diagnosis; one baby whose parents refused newborn screening presented symptomatically. There were 1054/1313 (80.3%, 95% CI 78% to 82.4%) SCD cases seen by a specialist by 3 months of age and 1273/1313 (97%, 95% CI 95.9% to 97.8%) by 6 months. The percentage seen by 3 months increased from 77% in 2010 to 85.4% in 2015. 1038/1292 (80.3%, 95% CI 78.1% to 82.5%) were prescribed penicillin by 3 months of age and 1257/1292 (97.3%, 95% CI 96.3% to 98.1%) by 6 months. There were three SCD deaths <5 years caused by invasive pneumococcal disease (IPD) sensitive to penicillin.Conclusion: The SCD screening programme is effective at detecting affected infants. Enrolment into specialist care is timely but below the programme standards. Mortality is reducing but adherence to antibiotic prophylaxis remains important for IPD serotypes not in the current vaccine schedule. [ABSTRACT FROM AUTHOR]

Background There is limited evidence regarding the factors that facilitate recruitment and retention of general practices in clinical trials. It is therefore pertinent to consider the factors that facilitate research in primary care. Aim To formulate hypotheses about effective ways of recruiting and retaining practices to clinical trials, based on a case study. Design of study Case study of practice recruitment and retention to a trial of delivering antenatal sickle cell and thalassaemia screening. Setting Two UK primary care trusts with 123 practices, with a high incidence of sickle cell and thalassaemia, and high levels of social deprivation. Method Practices were invited to take part in the trial using a research information sheet for practices. Invitations were sent to all practice managers, GPs, practice nurses, and nurse practitioners. Expenses of approximately £3000 per practice were available. Practices and the research team signed research activity agreements, detailing a payment schedule based on deliverables. Semi-structured interviews were completed with 20 GPs who participated in the trial. Outcome measures were the number of practices recruited to, and completing, the trial. Results Four practices did not agree to randomisation and were excluded. Of 119 eligible practices, 29 expressed an interest in participation. Two practices withdrew from the trial and 27 participated (two hosted pilot studies and 25 completed the trial), giving a retention rate of 93% (27/29). The 27 participating practices did not differ from non-participating practices in list size, number of GPs, social deprivation, or minority ethnic group composition of the practice population. Conclusion Three factors appeared important in recruiting practices: research topic, invitation method, and interest in research. Three factors appeared important in retaining practices: good communication, easy data-collection methods, and payment upon meeting pre-agreed targets. The effectiveness of these factors at facilitating recruitment and retention requires assessment in experimental studies. [ABSTRACT FROM AUTHOR]

Background: Antenatal sickle cell and thalassaemia screening sometimes occurs too late to allow couples a choice regarding termination of affected fetuses. The target gestational age for offering the test in the UK is 10 weeks.Aim: To describe the proportion of women screened before 70 days' (10 weeks') gestation and the delay between pregnancy confirmation in primary care and antenatal sickle cell and thalassaemia screening.Design Of Study: Cohort study of reported pregnancies.Setting: Twenty-five general practices in two UK inner-city primary care trusts offering universal screening.Method: Anonymised data on all pregnancies reported to participating general practices was collected for a minimum of 6 months.Results: There were 1441 eligible women intending to proceed with their pregnancies, whose carrier status was not known. The median (interquartile range [IQR]) gestational age at pregnancy confirmation was 7.6 weeks (6.0-10.7 weeks) and 74% presented before 10 weeks. The median gestational age at screening was 15.3 weeks (IQR = 12.6-18.0 weeks), with only 4.4% being screened before 10 weeks. The median delay between pregnancy confirmation and screening was 6.9 weeks (4.7-9.3 weeks) After allowing for practice level variation, there was no association between delay times and maternal age, parity, and ethnic group.Conclusion: About 74% of women consulted for pregnancy before 10 weeks' gestation but fewer than 5% of women were screened before the target time of 10 weeks. Reducing the considerable delay between pregnancy confirmation in primary care and antenatal sickle cell and thalassaemia screening requires methods of organising and delivering antenatal care that facilitate earlier screening to be developed and evaluated. [ABSTRACT FROM AUTHOR]

Background Antenatal sickle cell and thalassaemia screening sometimes occurs too late to allow couples a choice regarding termination of affected fetuses. The target gestational age for offering the test in the UK is 10 weeks. Aim To describe the proportion of women screened before 70 days' (10 weeks') gestation and the delay between pregnancy confirmation in primary care and antenatal sickle cell and thalassaemia screening. Design of study Cohort study of reported pregnancies. Setting Twenty-five general practices in two UK inner-city primary care trusts offering universal screening. Method Anonymised data on all pregnancies reported to participating general practices was collected for a minimum of 6 months. Results There were 1441 eligible women intending top proceed with their pregnancies, whose carrier status was not known. The median (interquartile rafige [IQR]) gestational age at pregnancy confirmation was 7.6 weeks (6.0-10.7 weeks) and 74% presented before 10 weeks. The median gestational age at screening was 15.3 weeks (IQR = 12.6-18.0 weeks), with only 4.4% being screened before 10 weeks. The median delay between pregnancy confirmation and screening was 6.9 weeks (4.7-9.3 weeks) After allowing for practice level variation, there was no association between delay times and maternal age, parity, and ethnic group. Conclusion About 74% of women consulted for pregnancy before 10 weeks' gestation but fewer than 5% of women were screened before the target time of 10 weeks. Reducing the considerable delay between pregnancy confirmation in primary care and antenatal sickle cell and thalassaemia screening requires methods of organising and delivering antenatal care that facilitate earlier screening to be developed and evaluated. [ABSTRACT FROM AUTHOR]

Background: Missing data may bias the results of clinical trials and other studies. This study describes the response rate, questionnaire responses and financial costs associated with offering participants from a multilingual population the option to complete questionnaires over the telephone. Methods: Design: Before and after study of two methods of questionnaire completion. Participants and Setting: Seven hundred and sixty five pregnant women from 25 general practices in two UK inner city Primary Care Trusts (PCTs) taking part in a cluster randomised controlled trial of offering antenatal sickle cell and thalassaemia screening in primary care. Two hundred and four participants did not speak English. Sixty one women were offered postal questionnaire completion only and 714 women were offered a choice of telephone or postal questionnaire completion. Outcome measures: (i) Proportion of completed questionnaires, (ii) attitude and knowledge responses obtained from a questionnaire assessing informed choice. Results: The response rate from women offered postal completion was 26% compared with 67% for women offered a choice of telephone or postal completion (41% difference 95% CI Diff 30 to 52). For non-English speakers offered a choice of completion methods the response rate was 56% compared with 71% for English speakers (95% CI Diff 7 to 23). No difference was found for knowledge by completion method, but telephone completion was associated with more positive attitude classifications than postal completion (87 vs 96%, 95% CI diff 0.006 to 15). Compared with postal administration the additional costs associated with telephone administration were £3.90 per questionnaire for English speakers and £71.60 per questionnaire for non English speakers. Conclusion: Studies requiring data to be collected by questionnaire may obtain higher response rates from both English and non-English speakers when a choice of telephone or postal administration (and where necessary, an interpreter)is offered compared to offering postal administration only. This approach will, however, incur additional research costs and uncertainty remains about the equivalence of responses obtained from the two methods. [ABSTRACT FROM AUTHOR]

The article presents the appropriate method of reporting for the results of medical screening tests. The reporting results should be reported with simple and clear terminology. It was 40 years back when reporting of screening results as positive and negative was established. The use of such terminology has been questioned in current period. The use of the terms, high risk and low risk may be advantageous as they appear to be less categorical.