Patients accept therapy using embryonic stem cells for Parkinson's disease: a discrete choice experiment.

BACKGROUND: New disease-modifying ways to treat Parkinson's disease (PD) may soon become a reality with intracerebral transplantation of cell products produced from human embryonic stem cells (hESCs). The aim of this study was to assess what factors influence preferences of patients with PD regarding stem-cell based therapies to treat PD in the future. METHODS: Patients with PD were invited to complete a web-based discrete choice experiment to assess the importance of the following attributes: (i) type of treatment, (ii) aim of treatment, (iii) available knowledge of the different types of treatments, (iv) effect on symptoms, and (v) risk for severe side effects. Latent class conditional logistic regression models were used to determine preference estimates and heterogeneity in respondents' preferences. RESULTS: A substantial difference in respondents' preferences was observed in three latent preference patterns (classes). "Effect on symptoms" was the most important attribute in class 1, closely followed by "type of treatment," with medications as preferred to other treatment alternatives. Effect on symptoms was also the most important attribute in class 2, with treatment with hESCs preferred over other treatment alternatives. Likewise for class 3, that mainly focused on "type of treatment" in the decision-making. Respondents' class membership was influenced by their experience in treatment, side effects, and advanced treatment therapy as well as religious beliefs. CONCLUSIONS: Most of the respondents would accept a treatment with products emanating from hESCs, regardless of views on the moral status of embryos. Preferences of patients with PD may provide guidance in clinical decision-making regarding treatments deriving from stem cells.

Would you consider donating your left-over embryos to treat Parkinson's disease? Interviews with individuals that underwent IVF in Sweden.

BACKGROUND: Parkinson's disease (PD) has been considered to be one of the most promising target diseases for forthcoming cell-based therapy. The aim of this study is to explore the views of individuals with cryopreserved embryos on using human embryonic stem cells for treating PD. METHODS: The study was performed as a qualitative, semi-structured interview study in June-October 2020. Participants were recruited at a private fertility clinic located in one of the larger Swedish cities. The clinic provides both publicly financed and privately financed IVF-treatments. All interviews were performed by telephone and analyzed using thematic content analysis. Five main categories emerged from 27 sub-categories. RESULTS: In total, 18 interviews were performed with 22 individuals, as either a couple (n = 16) or separately (n = 6). Participants had different views on what a cryopreserved embryo is. Some participants addressed cryopreserved embryos as 'a lump of cells', and some in terms of their 'unborn child'. Conditions for donation of cryopreserved embryos for cell-based treatment in PD were: not losing control of what is happening to the embryo, that donating must be voluntary and based on informed consent with time for reflection, that reimbursement, equality and transparency. CONCLUSIONS: Using cryopreserved embryos to treat PD is associated with fundamental ethical and practical issues. This study shows that IVF couples with left-over embryos may be supportive but there is a need for future research to assess people's views on using cryopreserved embryos for cell-based treatment in PD on a more aggregated level.

Attitudes and values among the Swedish general public to using human embryonic stem cells for medical treatment.

BACKGROUND: The use of human embryonic stem cells (ES cells) for the development of medical therapies is surrounded with moral concerns. The aim of this study was to assess the public's attitudes toward the use of ES cells for treatment of Parkinson's disease (PD) and other diseases, what factors are most important to consider when using ES cells for drug development, and if there is an association between religious beliefs and attitudes toward using ES cells for medical treatment. METHODS: A randomly selected sample of the Swedish public, aged 18-87-years-old, completed an online survey (n = 467). The survey assessed socio-demographics, religious views, perceived moral status of the embryo, and attitudes toward using ES cells for medical treatment of PD and other diseases. Adjusted odds ratios (ORs) and 95% confidence intervals (CI) for positive vs. negative attitude toward using ES cells for drug development were computed using logistic regression. RESULTS: The respondents were positive about using ES for treatment; specifically, 70% totally agreed that it is acceptable to use ES cells for treatment of PD, while 40% totally agreed that it is acceptable to use ES cells for treatment but induced pluripotent cells is just as efficient. Religion being of little importance in one's life was associated with a positive attitude toward using ES cells for treatment of PD (adjusted OR 6.39, 95% CI 2.78-14.71). The importance of being able "to access new, effective treatments against diseases that do not have any treatment available" was ranked as the most important factor to consider when using ES cells for drug development. CONCLUSION: Most respondents are positive about using ES cells for drug development, and making effective treatments accessible to those who do not have any. However, these attitudes are influenced by the specific disorder that the drug development is intended for, as well as the religious views and perceived moral status of the early embryo.

Patients' views on using human embryonic stem cells to treat Parkinson's disease: an interview study.

BACKGROUND: Human embryonic stem cells (hESC) as a source for the development of advanced therapy medicinal products are considered for treatment of Parkinson's disease (PD). Research has shown promising results and opened an avenue of great importance for patients who currently lack a disease modifying therapy. The use of hESC has given rise to moral concerns and been the focus of often heated debates on the moral status of human embryos. Approval for marketing is still pending. OBJECTIVE: To Investigate the perspectives and concerns of patients with PD, patients being the directly concerned stakeholders in the ethical discussion. METHODS: Qualitative semi-structured interviews related to this new therapy in seventeen patients from two Swedish cities. RESULTS: The participants expressed various interests related to the use of human embryos for development of medicinal therapies; however, overall, they were positive towards the use of hESC for treatment of PD. It was deemed important that the donating woman or couple made the choice to donate embryos voluntarily. Furthermore, there were concerns that the industry does not always prioritise the patient over profit; thus, transparency was seen as important.

Perceptions on using surplus embryos for the treatment of Parkinson's disease among the Swedish population: a qualitative study.

BACKGROUND: Human embryonic stem cells are currently used for developing treatment against Parkinson's disease (PD). However, the use of ES cells is surrounded with moral concerns. Research regarding the public's attitudes can form an important basis for policymaking. The aim was to explore the perceptions of the public on using donated human embryos for developing treatment of Parkinson's Disease. METHODS: Semi-structured individual qualitative interviews were conducted with 11 members of the general population in Sweden. Interviews were analyzed with thematic content analyses. RESULTS: Four categories and additional sub-categories; Different views on the embryo requires delicacy, Using embryos to treat Parkinson's disease, Doing things in the right way, and Communication, media, and public opinion. In general, respondents were positive towards the usage of embryotic stem cells to treat PD, but the usage were conditioned and specific terms were demanded. Informed consent from both donors were required and delicacy and sensitivity when working with embryos were needed. CONCLUSIONS: It was perceived better to use surplus embryos to treat PD increase is than to discard them, also among those who perceived the embryo as "a potential life." The participants raised several conditions under usage for treatment should be allowed. Even if the embryos otherwise are going to be discarded, usage requires informed consent from the donating couples.

[SWEPIS has led to rash changes in routines within Swedish obstetric care]. / Swepis har lett till överilade ändringar i förlossningsrutiner - Befogat att avbryta studien i förtid, men forskningen bör granskas i sin helhet innan slutsatser dras och rutiner ändras.

The Swedish Post-term Induction Study (SWEPIS) aimed to evaluate if a routine of induction of labour at 41 weeks was superior in perinatal outcomes to induction at 42 weeks for low-risk pregnancies. The trial was stopped early for ethical reasons. The researchers acknowledge that the results of the study should be interpreted cautiously but at the same time recommend that women should be offered induction at 41 weeks, at the latest. We question the conclusion drawn by the authors and find it problematic that SWEPIS has already led to changes in clinical care, before its results have been scrutinized together with the rest of the available research.

Measuring pregnancy planning: A psychometric evaluation and comparison of two scales.

AIMS: To psychometrically test the London Measure of Unplanned Pregnancy and compare it with the Swedish Pregnancy Planning Scale. BACKGROUND: The incidence of unplanned pregnancies is an important indicator of reproductive health. The London Measure of Unplanned Pregnancy measures pregnancy planning by taking contraceptive use, timing, intention to become pregnant, desire for pregnancy, partner agreement, and pre-conceptual preparations into account. It has, however, previously not been psychometrically evaluated using confirmatory factor analysis. The Likert-scored single-item Swedish Pregnancy Planning Scale has been developed to measure the woman's own view of pregnancy planning level. DESIGN: Cross-sectional design. METHODS: In 2012-2013, 5493 pregnant women living in Sweden were invited to participate in the Swedish Pregnancy Planning study, of whom 3327 (61%) agreed to participate and answered a questionnaire. A test-retest pilot study was conducted in 2011-2012. Thirty-two participants responded to the questionnaire on two occasions 14 days apart. Data were analysed using confirmatory factor analysis, Cohen's weighted kappa and Spearman's correlation. RESULTS: All items of the London Measure of Unplanned Pregnancy contributed to measuring pregnancy planning, but four items had low item-reliability. The London Measure of Unplanned Pregnancy and Swedish Pregnancy Planning Scale corresponded reasonably well with each other and both showed good test-retest reliability. CONCLUSION: The London Measure of Unplanned Pregnancy may benefit from item reduction and its usefulness may be questioned. The Swedish Pregnancy Planning Scale is time-efficient and shows acceptable reliability and construct validity, which makes it more useful for measuring pregnancy planning.

Exploring men's pregnancy-planning behaviour and fertility knowledge:a survey among fathers in Sweden.

INTRODUCTION: Research about pregnancy-planning behaviour mostly focuses on women, even though pregnancy planning usually also concerns men. The purpose of this study was to investigate how men plan for family, and to measure their fertility knowledge after having become fathers. MATERIAL AND METHODS: Data were collected in 2014 as part of a Swedish longitudinal pregnancy-planning study. Men were recruited through their female partner one year after childbirth. Participants were asked to fill out a questionnaire about pregnancy planning, lifestyles, and fertility. RESULTS: Of the 796 participants, 646 (81%) stated that the pregnancy had been very or fairly planned, and 17% (n = 128) had made a lifestyle adjustment before pregnancy to improve health and fertility. The most common adjustments were to reduce/quit the consumption of alcohol, cigarettes, or snuff, and to exercise more. First-time fathers and those who had used assisted reproductive technology to become pregnant were more likely to have made an adjustment. Fertility knowledge varied greatly. Men with university education had better fertility knowledge than men without university education. CONCLUSION: Our findings indicate that there is variation in how men plan and prepare for pregnancy. Most men did not adjust their lifestyle to improve health and fertility, while some made several changes. Both pregnancy-planning behaviour and fertility knowledge seem to be related to level of education and mode of conception. To gain deeper understanding of behaviour and underlying factors, more research is needed.

Adverse childhood experiences influence development of pain during pregnancy.

OBJECTIVE: To investigate the association between adverse childhood experiences (ACE) and pain with onset during pregnancy. DESIGN: Cross-sectional study. SETTING: Eighteen antenatal clinics in southern Mid-Sweden. SAMPLE: Of 293 women invited to participate, 232 (79%) women agreed to participate in early pregnancy and were assessed in late pregnancy. METHODS: Questionnaires were distributed in early and late pregnancy. The questionnaires sought information on socio-demography, ACE, pain location by pain drawing and pain intensity by visual analogue scales. Distribution of pain was coded in 41 predetermined areas. MAIN OUTCOME MEASURES: Pain in third trimester with onset during present pregnancy: intensity, location and number of pain locations. RESULTS: In late pregnancy, 62% of the women reported any ACE and 72% reported any pain location with onset during the present pregnancy. Among women reporting any ACE the median pain intensity was higher compared with women without such an experience (p = 0.01). The accumulated ACE displayed a positive association with the number of reported pain locations in late pregnancy (rs = 0.19, p = 0.02). This association remained significant after adjusting for background factors in multiple regression analysis (p = 0.01). When ACE was dichotomized the prevalence of pain did not differ between women with and without ACE. The subgroup of women reporting physical abuse as a child reported a higher prevalence of sacral and pelvic pain (p = 0.0003 and p = 0.02, respectively). CONCLUSIONS: Adverse childhood experiences were associated with higher pain intensities and larger pain distributions in late pregnancy, which are risk factors for transition to chronic pain postpartum.