Dataset Information

Preferences for prenatal diagnosis of sickle-cell disorder: A discrete choice experiment comparing potential service users and health-care providers.

ABSTRACT:

Background

Non-invasive prenatal diagnosis (NIPD) for sickle-cell disorder (SCD) is moving closer to implementation and studies considering stakeholder preferences are required to underpin strategies for offering NIPD in clinical practice.

Objective

Determine service user and provider preferences for key attributes of prenatal diagnostic tests for SCD and examine views on NIPD.

Method

A questionnaire that includes a discrete choice experiment was used to determine the preferences of service users and providers for prenatal tests that varied across three attributes: accuracy, time of test and risk of miscarriage.

Results

Adults who were carriers of SCD or affected with the condition (N=67) were recruited from haemoglobinopathy clinics at two maternity units. Health professionals, predominately midwives, who offer antenatal care (N=62) were recruited from one maternity unit. No miscarriage risk was a key driver of decision making for both service users and providers. Service providers placed greater emphasis on accuracy than service users. Current uptake of invasive tests was 63%, whilst predicted uptake of NIPD was 93.8%. Many service users (55.4%) and providers (52.5%) think pressure to have prenatal testing will increase when NIPD for SCD becomes available.

Conclusions

There are clear differences between service users and health professionals' preferences for prenatal tests for sickle-cell disorder. The safety of NIPD is welcomed by parents and uptake is likely to be high. To promote informed choice, pretest counselling should be balanced and not exclusively focused on test safety. Counselling strategies that are sensitive to feelings of pressure to test will be essential.

SUBMITTER: Hill M

PROVIDER: S-EPMC5689222 | biostudies-literature | 2017 Dec

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Preferences for prenatal diagnosis of sickle-cell disorder: A discrete choice experiment comparing potential service users and health-care providers.

Hill Melissa M Oteng-Ntim Eugene E Forya Frida F Petrou Mary M Morris Stephen S Chitty Lyn S LS

Health expectations : an international journal of public participation in health care and health policy 20170515 6

<h4>Background</h4>Non-invasive prenatal diagnosis (NIPD) for sickle-cell disorder (SCD) is moving closer to implementation and studies considering stakeholder preferences are required to underpin strategies for offering NIPD in clinical practice.<h4>Objective</h4>Determine service user and provider preferences for key attributes of prenatal diagnostic tests for SCD and examine views on NIPD.<h4>Method</h4>A questionnaire that includes a discrete choice experiment was used to determine the prefe ...[more]

PMID: 28504327

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Project description:BackgroundThere are increasing examples of linking data on healthcare resource use and patient outcomes from different sectors of health and social care systems. Linked data are generally anonymised, meaning in most jurisdictions there are no legal restrictions to their use in research conducted by public or private organisations. Secondary use of anonymised linked data is contentious in some jurisdictions but other jurisdictions are known for their use of linked data. The publics' perceptions of the acceptability of using linked data is likely to depend on a number of factors. This study aimed to quantify the preferences of the public to understand the factors that affected views about types of linked data and its use in two jurisdictions.MethodAn online discrete choice experiment (DCE) previously conducted in Scotland was adapted and replicated in Sweden. The DCE was designed, comprising five attributes, to elicit the preferences from a representative sample of the public in both jurisdictions. The five attributes (number of levels) were: type of researcher using linked data (four); type of data being linked (four); purpose of the research (three); use of profit from using linked data (four); who oversees the research (four). Each DCE contained 6 choice-sets asking respondents to select their preferred option from two scenarios or state neither were acceptable. Background questions included socio-demographics. DCE data were analysed using conditional and heteroskedastic conditional logit models to create forecasts of acceptability.ResultsThe study sample comprised members of the public living in Scotland (n =?1004) and Sweden (n =?974). All five attributes were important in driving respondents' choices. Swedish and Scottish preferences were mostly homogenous with the exception of 'who oversees the research using linked data', which had relatively less impact on the choices observed from Scotland. For a defined 'typical' linked data scenario, the probability (on average) of acceptance was 85.7% in Sweden and 82.4% in Scotland.ConclusionThis study suggests that the public living in Scotland and Sweden are open to using anonymised linked data in certain scenarios for research purposes but some caution is advisable if the anonymised linked data joins health to non-health data.

Project description:OBJECTIVES:It is desirable that public preferences are established and incorporated in emergency healthcare reforms. The aim of this study was to investigate preferences for local versus centralised provision of all emergency medical services (EMS) and explore what individuals think are important considerations for EMS delivery. DESIGN:A discrete choice experiment was conducted. The attributes used in the choice scenarios were: travel time to the hospital, waiting time to be seen, length of stay in the hospital, risks of dying, readmission and opportunity for outpatient care after emergency treatment at a local hospital. SETTING:North East England. PARTICIPANTS:Participants were a randomly sampled general population, aged 16 years or above recruited from Healthwatch Northumberland network database of lay members and from clinical contact with Northumbria Healthcare National Health Service Foundation Trust via Patient Experience Team. PRIMARY AND SECONDARY OUTCOME MEASURES:Analysis used logistic regression modelling techniques to determine the preference of each attribute. Marginal rates of substitution between attributes were estimated to understand the trade-offs individuals were willing to make. RESULTS:Responses were obtained from 148 people (62 completed a web and 86 a postal version). Respondents preferred shorter travel time to hospital, shorter waiting time, fewer number of days in hospital, low risk of death, low risk of readmission and outpatient follow-up care in their local hospital. However, individuals were willing to trade off increased travel time and waiting time for high-quality centralised care. Individuals were willing to travel 9 min more for a 1-day reduction in length of stay in the hospital, 38 min for a 1% reduction in risk of death and 112 min for having outpatient follow-up care at their local hospital. CONCLUSIONS:People value centralised EMS if it provides higher quality care and are willing to travel further and wait longer.

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Dataset Information

Preferences for prenatal diagnosis of sickle-cell disorder: A discrete choice experiment comparing potential service users and health-care providers.

Background

Objective

Method

Results

Conclusions

Publications

Preferences for prenatal diagnosis of sickle-cell disorder: A discrete choice experiment comparing potential service users and health-care providers.

Similar Datasets

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