Decisional and psycho-social aspects of the embryo disposition context

Embryos in cryo-storage accumulate worldwide with conservative estimates suggesting that over 180,000 embryos are currently in storage in the United Kingdom. Couples keep their embryos in storage despite having satisfied their family building needs and evidence suggests that a proportion of couples will need decisional support in resolving the embryo disposition decision. The aim of the studies presented in this thesis was to better understand the embryo disposition decision context, establish factors associated with the decision (facilitators and impediments) and identify targets for decision support to improve patient experiences. The work presented in this thesis demonstrates that the embryo disposition decision is embedded in a complex and distressing decision context that makes it difficult for couples to choose a disposition option. The complexity and difficulty of the decision context emerges from couples' affective forecasting, their representation of embryos, their treatment experience, reproductive life stage and personality characteristics. An affective and cognitive embryo representation measure was developed allowing a multifaceted assessment of how couples feel and think about their embryos. It was suggested that the difficulty and complexity of the decision context emerges because in order to make a disposition decision couples need to achieve integration of their embryo representations with their disposition intentions. Embryo representations as well as embryo disposition preferences may change as a function of treatment experience, especially treatment success which makes the integration process even more difficult. The new measures offer the opportunity to integrate findings from cross-cultural settings, and are hoped to be used to support patients during treatment

Information and decision support needs of parents considering amniocentesis: interviews with pregnant women and health professionals

Abstract Objective Our aim was to clarify and categorize information and decision support needs of pregnant women deciding about amniocentesis. Background Prenatal screening for DownÕs syndrome (implemented in routine practice) generates a quantifiable risk of chromosome abnormality. To increase certainty, chromosomal material needs to be obtained through amniocentesis or other diagnostic test. Amniocentesis carries risks of pregnancy loss

Assessing the Quality of Decision Support Technologies Using the International Patient Decision Aid Standards instrument (IPDASi)

Objectives To describe the development, validation and inter-rater reliability of an instrument to measure the quality of patient decision support technologies (decision aids). Design Scale development study, involving construct, item and scale development, validation and reliability testing. Setting There has been increasing use of decision support technologies – adjuncts to the discussions clinicians have with patients about difficult decisions. A global interest in developing these interventions exists among both for-profit and not-for-profit organisations. It is therefore essential to have internationally accepted standards to assess the quality of their development, process, content, potential bias and method of field testing and evaluation. Methods Scale development study, involving construct, item and scale development, validation and reliability testing. Participants Twenty-five researcher-members of the International Patient Decision Aid Standards Collaboration worked together to develop the instrument (IPDASi). In the fourth Stage (reliability study), eight raters assessed thirty randomly selected decision support technologies. Results IPDASi measures quality in 10 dimensions, using 47 items, and provides an overall quality score (scaled from 0 to 100) for each intervention. Overall IPDASi scores ranged from 33 to 82 across the decision support technologies sampled (n = 30), enabling discrimination. The inter-rater intraclass correlation for the overall quality score was 0.80. Correlations of dimension scores with the overall score were all positive (0.31 to 0.68). Cronbach's alpha values for the 8 raters ranged from 0.72 to 0.93. Cronbach's alphas based on the dimension means ranged from 0.50 to 0.81, indicating that the dimensions, although well correlated, measure different aspects of decision support technology quality. A short version (19 items) was also developed that had very similar mean scores to IPDASi and high correlation between short score and overall score 0.87 (CI 0.79 to 0.92). Conclusions This work demonstrates that IPDASi has the ability to assess the quality of decision support technologies. The existing IPDASi provides an assessment of the quality of a DST's components and will be used as a tool to provide formative advice to DSTs developers and summative assessments for those who want to compare their tools against an existing benchmark

Palliative sedation in Germany: factors and treatment practices associated with different sedation rate estimates in palliative and hospice care services

Abstract Background Clinical practice of Palliative Sedation (PS) varies between institutions worldwide and sometimes includes problematic practices. Little available research points at different definitions and frameworks which may contribute to uncertainty of healthcare professionals in the application of PS. This analysis investigates what demographic factors and characteristics of treatment practices differ between institutions with high versus low sedation rates estimates in Palliative and Hospice Care in Germany. Methods Data sets from 221 organisations from a prior online survey were separated into two sub-groups divided by their estimated sedation rate A) lower/equal to 16% (n = 187; 90.8%) and B) higher than 16% (n = 19; 9.2%) for secondary analysis. Demographic factors and characteristics of PS treatment practices between the two groups were compared using T-Tests and Chi2/ Fisher Exact Tests and considered significant (*) at two-sided p < .05. Results Organisations in group B report that they discuss PS for a higher proportion of patients (38.5%/10.2%, p < 0.000**), rate agitation more often as an indications for PS (78.9%/ 53.5%, p = 0.050*), and are more likely to use Lorazepam (63.2%/ 37.4%, p = 0.047*), Promethazin (26.3%/ 9.6%, p = 0.044*), and (Es-)Ketamin (31.6%/ 12.8%, p = 0.039*) than representatives in group A. Both groups differ significantly in their allocation of three case scenarios to different types of PS. Conclusions Both definitions and patterns of clinical practice between palliative and hospice care representatives show divergence, which may be influenced one by another. A comprehensive framework considering conceptual, clinical, ethical, and legal aspects of different definitions of PS could help to better distinguish between different types and nuances of PS

Where is the theory? : Evaluating the theoretical frameworks described in decision support technologies

To identify and describe the extent to which theory or theoretical frameworks informed the development and evaluation of decision support technologies (DSTs).Peer reviewe

Pre-birth characteristics and 5-year follow-up of women with cryopreserved embryos after successful in vitro fertilisation treatment

Many patients do not make a decision about the disposition of their surplus embryos until they are compelled to do so by statutory limits. In the current study, the characteristics of women who had conceived through in vitro fertilisation (IVF) and who still had embryos stored (E-S; n = 26) 5 years after IVF were compared to a cohort comparison group (C-C; n = 40). At time 1 (T1, 28 weeks pregnant) women completed questionnaires on personality traits (anxiety, locus of control and dependency) and participated in an interview on socio-demographic characteristics, family composition and stored embryos. At T2 (5 years later) women were re-interviewed and asked about beliefs about the embryos. Women in the E-S group were significantly younger, had been married or living with their partner for fewer years and had had more children than the C-C group. Further, women in the E-S group were more likely to have an external locus of control and a dependent personality than women in the C-C group. Almost all women in the E-S group (88.5%) thought of their embryos as siblings to existing children, and reported thinking about the embryos occasionally (61.5%) or frequently (34.6%). The personality differences identified may suggest that women who still have embryos after the end of fertility treatment may be in need of decision support.8 page(s

Where is the theory? Evaluating the theoretical frameworks described in decision support technologies

Objective To identify and describe the extent to which theory or theoretical frameworks informed the development and evaluation of decision support technologies (DSTs). Methods The analysis was based on the decision technologies used in studies included in the Cochrane systematic review of patient decision aids for people facing health screening or treatment decisions. The assumption was made that DSTs evaluated by randomized controlled trials, and therefore included in the updated Cochrane review have been the most rigorously developed. Results Of the 50 DSTs evaluated only 17 (34%) were based on a theoretical framework. Amongst these, 11 decision-making theories were described but the extent to which theory informed the development, field-testing and evaluation of these interventions was highly variable between DSTs. The majority of the 17 DSTs that relied on a theory was not explicit about how theory had guided their design and evaluation. Many had superficial descriptions of the theory or theories involved. Furthermore, based on the analysis of those 17 DSTs, none had reported field-testing prior to evaluation