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Preconceptional ancestry-based carrier couple screening for cystic fibrosis and haemoglobinopathies: what determines the intention to participate or not and actual participation?

ABSTRACT: This paper explores determinants of the intention to participate or not and of actual participation in preconceptional ancestry-based carrier couple screening for cystic fibrosis (CF) and haemoglobinopathies (HbPs). In total, 9453 individuals from a multi-ethnic population were invited. Invitees who had a partner and who were planning a pregnancy were the target population (33-36%). Test participation was conditional on survey participation. Those who refrained from test participation were asked to participate in the survey only. The questionnaire was based on the Theory of Planned Behaviour, which explains behaviour through intention. It was completed by 418 survey participants: 171 who intended to participate in the testing, and 247 who refrained from test participation. Both test intenders and offer decliners generally had a positive attitude towards test participation, and perceived high behavioural control. This applied to Western and non-Western survey participants equally. Offer decliners, however, perceived less control in terms of the time and effort needed for participation. Still, 68% of them intended to participate in the future if the screening would be offered routinely. Test intenders more often would draw reproductive consequences from test results, perceived a higher risk of being a carrier, more benefits and less adverse psychological outcomes. Feelings of stigmatisation were not an important issue, but 14% thought that there would be discrimination against carriers: among them more were non-Western survey participants. Preconceptional ancestry-based CF and HbPs carrier screening was evaluated as positive and desirable among Western and non-Western survey participants. The effort and time needed for participation were important reasons for declining participation, which might be overcome by improving access to the screening.

SUBMITTER: Lakeman P

PROVIDER: S-EPMC2986548 | biostudies-other | 2009 Aug

REPOSITORIES: biostudies-other

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Project description:BackgroundIn The Netherlands, a national chlamydia screening program started in 2008, but the participation was low and the screening was not cost-effective. This study aimed to explore unconscious and conscious associations with chlamydia screening (16-29 year-olds). In addition, we examined whether information presented in chlamydia screening invitation letters had an effect on the evaluation of these determinants compared to a no-letter group.MethodsAn Internet survey was conducted that included self-report measures of attitude, susceptibility, severity, unrealistic optimism, subjective, moral, and descriptive norm, perceived behavioral control, outcome expectations, barriers, intention, and a response time measure to assess unconscious associations of chlamydia screening with annoyance, threat and reassurance.ResultsOn the unconscious level, participants (N?=?713) who received no information letter associated testing for chlamydia with annoyance and threat, but also with reassurance (all p's?<?.001). On the self-report measures, participants showed a low intention towards chlamydia screening (M?=?1.42, range 1-5). Subjective norm, moral norm, perceived susceptibility and attitude were the most important predictors of the intention to screen (R2?=?.56). Participants who rated their susceptibility as high also reported more risky behaviors (p?<?.001).In the groups that received a letter (N?=?735), a weaker unconscious association of chlamydia screening with annoyance was found compared with the no-letter group (p?<?.001), but no differences were found in reassurance or threat. Furthermore, the letters caused a higher intention (p?<?.001), but intention remained low (M?=?1.74). On a conscious level, giving information caused a more positive attitude, higher susceptibility, a higher subjective and moral norm, and more positive outcome expectations (all p's?<?.001).ConclusionSubjective norm, moral norm, susceptibility, and attitude towards chlamydia might be crucial targets to increase chlamydia screening behavior among sexually active young people. This study shows that informational invitation letters increase the intention and the intention-predicting variables. More evidence is needed on whether screening behavior can be increased by the use of an alternative information letter adapted to the specific unconscious and conscious determinants revealed in this study, or that we need other, more interactive behavior change methods.

Project description:BackgroundNowadays physical activity (PA)/exercise is an important component of cystic fibrosis (CF) therapy. The aim of the study was to assess the barriers to PA and the barrier management and to explore the effect of supervision on the barriers and barrier management during an exercise program.MethodsIn total, 88 people with CF (pwCF) of the ages 6 to 50 years old (mean 24.2 ± 7.9 yrs) participated in the partially supervised 12-month exercise program and filled in a structured and validated questionnaire about barriers to sports and barrier management at baseline. Additionally, 23 pwCF filled in the questionnaire after 6 months and 12 months. The items were clustered into physical and psychosocial barriers and into preventive counter strategies and situational counter strategies and analyzed at baseline and over time.ResultsPhysical barriers were more relevant than psychosocial barriers and no trend could be seen in the situational and preventive counter strategies. When divided in subgroups, the less active pwCF (<7500 steps/day), more active pwCF (>7500 steps/day), physical barriers, and psychosocial barriers showed no significant differences. However physical barriers showed a tendency to have a higher value in the less active group compared to the more active group (p > 0.05). Stratified by age or FEV1%pred between the subgroups, no differences could be seen regarding barriers and counter strategies.ConclusionsPhysical barriers seemed to have a higher priority when it comes to not participating in PA/exercise. Supervision over 6 months during an exercise program did not show a beneficial effect on barriers and barrier management. Besides the motivational aspect of sport counselling, the volitional aspect seemed to be more important to incorporate more PA into daily life. Individual barriers and their concrete counter strategies should be discussed with the patient with CF. Sport counselling is needed permanently and should be part of the CF routine care.

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Preconceptional ancestry-based carrier couple screening for cystic fibrosis and haemoglobinopathies: what determines the intention to participate or not and actual participation?

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