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Preferences for Prenatal Tests for Cystic Fibrosis: A Discrete Choice Experiment to Compare the Views of Adult Patients, Carriers of Cystic Fibrosis and Health Professionals.

ABSTRACT: As new technologies enable the development of non-invasive prenatal diagnosis (NIPD) for cystic fibrosis (CF), research examining stakeholder views is essential for the preparation of implementation strategies. Here, we compare the views of potential service users with those of health professionals who provide counselling for prenatal tests. A questionnaire incorporating a discrete choice experiment examined preferences for key attributes of NIPD and explored views on NIPD for CF. Adult patients (n = 92) and carriers of CF (n = 50) were recruited from one children's and one adult NHS specialist CF centre. Health professionals (n = 70) were recruited via an e-mail invitation to relevant professional bodies. The key attribute affecting service user testing preferences was no miscarriage risk, while for health professionals, accuracy and early testing were important. The uptake of NIPD by service users was predicted to be high and includes couples that would currently decline invasive testing. Many service users (47%) and health professionals (55.2%) thought the availability of NIPD for CF would increase the pressure to undergo prenatal testing. Most service users (68.5%) thought NIPD for CF should be offered to all pregnant women, whereas more health professionals (68.2%) thought NIPD should be reserved for known carrier couples. The implications for clinical practice are discussed.

SUBMITTER: Hill M

PROVIDER: S-EPMC4449661 | biostudies-literature | 2014 Feb

REPOSITORIES: biostudies-literature

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Preferences for Prenatal Tests for Cystic Fibrosis: A Discrete Choice Experiment to Compare the Views of Adult Patients, Carriers of Cystic Fibrosis and Health Professionals.

Hill Melissa M Suri Ranjan R Nash Edward F EF Morris Stephen S Chitty Lyn S LS

Journal of clinical medicine 20140214 1

As new technologies enable the development of non-invasive prenatal diagnosis (NIPD) for cystic fibrosis (CF), research examining stakeholder views is essential for the preparation of implementation strategies. Here, we compare the views of potential service users with those of health professionals who provide counselling for prenatal tests. A questionnaire incorporating a discrete choice experiment examined preferences for key attributes of NIPD and explored views on NIPD for CF. Adult patients ...[more]

PMID: 26237256

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Project description:BackgroundHealth facilities require teams of health workers with complementary skills and responsibilities to efficiently provide quality care. In low-income countries, failure to attract and retain health workers in rural areas reduces population access to health services and undermines facility performance, resulting in poor health outcomes. It is important that governments consider health worker preferences in crafting policies to address attraction and retention in underserved areas.MethodsWe investigated preferences for job characteristics among final year medical, nursing, pharmacy, and laboratory students at select universities in Uganda. Participants were administered a cadre-specific discrete choice experiment that elicited preferences for attributes of potential job postings they were likely to pursue after graduation. Job attributes included salary, facility quality, housing, length of commitment, manager support, training tuition, and dual practice opportunities. Mixed logit models were used to estimate stated preferences for these attributes.ResultsData were collected from 246 medical students, 132 nursing students, 50 pharmacy students and 57 laboratory students. For all student-groups, choice of job posting was strongly influenced by salary, facility quality and manager support, relative to other attributes. For medical and laboratory students, tuition support for future training was also important, while pharmacy students valued opportunities for dual practice.ConclusionsIn Uganda, financial and non-financial incentives may be effective in attracting health workers to underserved areas. Our findings contribute to mounting evidence that salary is not the only important factor health workers consider when deciding where to work. Better quality facilities and supportive managers were important to all students. Similarities in preferences for these factors suggest that team-based, facility-level strategies for attracting health workers may be appropriate. Improving facility quality and training managers to be more supportive of facility staff may be particularly cost-effective, as investments are borne once while benefits accrue to a range of health workers at the facility.

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.

Project description:Choosing hypodontia treatment requires young people and parents to consider a large amount of information, identify what is important to them, and make trade-offs between options. This study aimed to examine young people and parents' preferences for hypodontia treatment using discrete choice experiment (DCE). This was a cross-sectional survey of young people (12-16 y) with hypodontia of any severity, at any stage of treatment, and their parents. Participants were recruited from NHS Hospitals in England and Wales. A bespoke DCE questionnaire was developed to measure preferences for 6 attributes of hypodontia treatment (waiting time, treatment time, problems during treatment, discomfort during treatment, bite, appearance). The questionnaire was completed 1) online by young people and parents, individually or together, and 2) by child-parent dyads under observation. Preferences were analyzed using regression models. In total, 204 participants (122 young people, 56 parents, 26 dyads) completed the online questionnaire and 15 child-parent dyads completed the questionnaire under observation. The most important attribute in hypodontia treatment was improvement in appearance, but significant heterogeneity was found in preferences. Four distinct groups of participants were found: group 1 (39%): severe discomfort and problems were most important; group 2 (31%): most concerned about improvement in appearance of teeth and improvement in bite; group 3 (22%): appearance 3 times more important than any other attribute; and group 4 (9%): preferences difficult to interpret. There was variation in how child-parent dyads approached decision-making, with some negotiating joint preferences, while for others, one individual dominated. Making trade-offs in DCE tasks helped some people think about treatment and identify their preferences. Appearance is an important outcome from hypodontia treatment, but preferences vary and potential risks and functional outcome are also important to some people. There is a notable level of uncertainty in decision-making, which suggests further shared decision support would be valuable.

Project description:BACKGROUND: Guidelines underline the role of individual preferences in the selection of a screening test, as insufficient evidence is available to recommend one screening test over another. We conducted a study to determine the preferences of individuals and to predict uptake for colorectal cancer (CRC) screening programmes using various screening tests. METHODS: A discrete choice experiment (DCE) questionnaire was distributed among naive subjects, yet to be screened, and previously screened subjects, aged 50-75 years. Subjects were asked to choose between scenarios on the basis of faecal occult blood test (FOBT), flexible sigmoidoscopy (FS), total colonoscopy (TC) with various test-specific screening intervals and mortality reductions, and no screening (opt-out). RESULTS: In total, 489 out of 1498 (33%) screening-naïve subjects (52% male; mean age+/-s.d. 61+/-7 years) and 545 out of 769 (71%) previously screened subjects (52% male; mean age+/-s.d. 61+/-6 years) returned the questionnaire. The type of screening test, screening interval, and risk reduction of CRC-related mortality influenced subjects' preferences (all P<0.05). Screening-naive and previously screened subjects equally preferred 5-yearly FS and 10-yearly TC (P=0.24; P=0.11), but favoured both strategies to annual FOBT screening (all P-values <0.001) if, based on the literature, realistic risk reduction of CRC-related mortality was applied. Screening-naive and previously screened subjects were willing to undergo a 10-yearly TC instead of a 5-yearly FS to obtain an additional risk reduction of CRC-related mortality of 45% (P<0.001). CONCLUSION: These data provide insight into the extent by which interval and risk reduction of CRC-related mortality affect preferences for CRC screening tests. Assuming realistic test characteristics, subjects in the target population preferred endoscopic screening over FOBT screening, partly, due to the more favourable risk reduction of CRC-related mortality by endoscopy screening. Increasing the knowledge of potential screenees regarding risk reduction by different screening strategies is, therefore, warranted to prevent unrealistic expectations and to optimise informed choice.

Project description:BackgroundDementia affects about 55 million people worldwide. Demographic change and shifting lifestyles challenge the organization of dementia care. A discrete choice experiment (DCE) was conducted to elicit preferences for living arrangements in dementia in urban and rural regions of Germany.MethodsPreliminary work included review of previous literature and focus groups. The DCE consists of seven attributes (group size, staff qualifications, organization of care, activities offered, support of religious practice, access to garden, consideration of food preferences) with three levels each. Individuals from the general population between the ages of 50 and 65 years were identified through population registration offices in three rural municipalities and one urban area, and 4390 individuals were approached via postal survey. A hierarchical Bayesian mixed logit model was estimated and interactions with sociodemographic characteristics were investigated.ResultsA total of 428 and 412 questionnaires were returned by rural and urban respondents, respectively. Access to a garden was perceived as the most important attribute (average importance 36.0% in the rural sample and 33.4% in the urban sample), followed by consideration of food preferences (15.8%, 17.8%), staff qualification (14.6%, 15.3%), care organization (11.4%, 12.3%), group size (12.2%, 11.1%), and range of activities (8.0%, 10.1%). The attribute relating to religious practice was given the least importance (2.1%, 0%). Preferences vary according to gender, age, religious beliefs, experience as an informal caregiver, and migrant background.ConclusionHeterogeneous preferences for living arrangements for people with dementia were identified. The expansion of concepts with access to natural environments for persons with dementia might be a viable option for the formal care market in Germany. Further research is needed to meet the challenges of setting up and designing innovative living arrangements for people with dementia. Preferences vary by gender, age, religious beliefs, experience as an informal caregiver, and migrant background.

Dataset Information

Preferences for Prenatal Tests for Cystic Fibrosis: A Discrete Choice Experiment to Compare the Views of Adult Patients, Carriers of Cystic Fibrosis and Health Professionals.

Publications

Preferences for Prenatal Tests for Cystic Fibrosis: A Discrete Choice Experiment to Compare the Views of Adult Patients, Carriers of Cystic Fibrosis and Health Professionals.

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