A multidisciplinary approach for improving services in primary care: randomised controlled trial of screening for haemoglobin disorders

Abstract

Objective: To investigate the feasibility of improving screening for carriers of haemoglobin disorders in general practice by using a nurse facilitator to work with primary care teams and the relevant haematology laboratories; to identify problems in communication between all those involved in delivering the service, and to implement solutions. Design: Two year, practice based randomised controlled trial. Setting: North London area where 29% of residents and 43% of births are in ethnic groups at risk for haemoglobin disorders. Subjects: 26 of the 93 practices using the services of the area's haematology laboratory agreed to take part and were randomly divided into control and intervention practices. Main outcome measure: Change in number of requests for screening tests for haemoglobin disorders made by control and intervention practices in baseline and intervention years. Results: The number of screening tests requested varied from 0-150 in the 93 practices in the baseline year. Study practices tended to have made a moderate number of requests (10-50) during this period. During the intervention year intervention practices made 292 more requests (99% increase) and control practices made 74 fewer requests (23% decrease; P = 0.001 for difference in median change). Four practices, three of which were singlehanded, accounted for 75% of the increase. The number of requests from intervention practices, adjusted for baseline requests, was 3.2 times higher than control practices (P < 0.0001). Conclusion: General practitioners and practice nurses are willing to undertake a new genetic screening service (or expand an existing one) if they are persuaded that it benefits the health of a significant proportion of their practice population. They need appropriate tools (for example, information materials for carriers and groups at risk), and the laboratory must be sensitive to their needs. Preconceptional carrier screening and counselling need to be coupled with antenatal screening.Screening for carriers of thalassaemias and sickle cell disorders (haemoglobin disorders) is established in the United Kingdom, 1 where over 6% of residents and 10% of newborns are of Asian, black, Mediterranean, or mixed parentage.2 On average, 8% (range 3-15%) of these groups are healthy carriers who can be readily identified by screening for haemoglobinopathy.3 Carrier couples have a 25% risk in each pregnancy that the child will have a serious haemoglobin disorder, and timely information allows them informed choice among reproductive options, including prenatal diagnosis.Though the laboratory diagnosis of carriers is relatively simple, screening a population involves many steps and different services.1 Premarital screening is routine in Cyprus 4 and screening is offered in high schools in Montreal. 5 In Britain most district health authorities have opted for routine antenatal screening. Since maternal blood is often first taken at around 16 weeks of pregnancy, many carrier couples are offered prenatal diagnosis in the second trimester. 6 ...

Parents' experiences of universal screening for haemoglobin disorders: implications for practice in a new genetics era

“…16 Raising general awareness of these conditions and earlier screening among adults of reproductive age. Provision of information and carrier testing before pregnancy appears feasible in primary care 31,32 and is supported by parents' perspectives here. This could ideally feature more routinely in future.…”

Informed patient consent to participation in cluster randomized trials: an empirical exploration of trials in primary care

“…The trials involved a variety of interventions (Table 1) of the cluster [16] Cluster-wide information Videos [17] or posters [18] disseminated 5 0 40 at a cluster-wide level than one intervention. Using the definitions proposed by Edwards et al, interventions in which information is sent direct to patients, or patients are given specific treatments, are classified as individual-cluster interventions, while the introduction of cluster-wide information, such as posters or videos in a waiting room, are classified as cluster-cluster interventions.…”

A pilot study of 'fast track' antenatal screening for haemoglobinopathies

“…Based upon previous studies demonstrating that at risk couples are more likely to request antenatal diagnosis if counselling is performed early 5 we anticipated an increase in antenatal diagnostic testing. However despite early identication there was a low uptake of antenatal diagnosis.…”