Academic literature on the topic 'Multiple Sclerosis, decision making, pregnancy'
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Journal articles on the topic "Multiple Sclerosis, decision making, pregnancy"
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Portaccio, Emilio, Lucia Moiola, Vittorio Martinelli, Pietro Annovazzi, Angelo Ghezzi, Mauro Zaffaroni, Roberta Lanzillo, et al. "Pregnancy decision-making in women with multiple sclerosis treated with natalizumab." Neurology 90, no. 10 (February 7, 2018): e832-e839. http://dx.doi.org/10.1212/wnl.0000000000005068.
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ObjectiveTo assess the risk of disease reactivation during pregnancy after natalizumab suspension in women with multiple sclerosis (MS).MethodsData of all pregnancies occurring between 2009 and 2015 in patients with MS treated with natalizumab and referring to 19 participating sites were collected and compared with those of pregnancies in untreated patients and patients treated with injectable immunomodulatory agents through a 2-factor repeated measures analysis. Predictors of disease activity were assessed through stepwise multivariable logistic regression models.ResultsA total of 92 pregnancies were tracked in 83 women receiving natalizumab. Among these pregnancies, 74 in 70 women resulted in live births, with a postpartum follow-up of at least 1 year, and were compared with 350 previously published pregnancies. Relapse rate during and after pregnancy was higher in women treated with natalizumab (p < 0.001). In multivariable analysis, longer natalizumab washout period was the only predictor of relapse occurrence during pregnancy (p = 0.001). Relapses in the postpartum year were related to relapses during pregnancy (p = 0.019) and early reintroduction of disease-modifying drugs (DMD; p = 0.021). Disability progression occurred in 16.2% of patients and was reduced by early reintroduction of DMD (p = 0.024).ConclusionsTaken as a whole, our findings indicate that the combination of avoiding natalizumab washout and the early resumption of DMD after delivery could be the best option in the perspective of maternal risk. This approach must take into account possible fetal risks that need to be discussed with the mother and require further investigation.Classification of evidenceThis study provides Class IV evidence that in women with MS, the risk of relapses during pregnancy is higher in those who had been using natalizumab as compared to those who had been using interferon-β or no treatment.
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Alwan, Sura, Magdalena Dybalski, Irene M. Yee, Talitha M. Greenwood, Elaine Roger, Nancy Nadeau, Pierre Duquette, and A. Dessa Sadovnick. "Multiple Sclerosis and Pregnancy: A Comparison Study." Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques 40, no. 4 (July 2013): 590–96. http://dx.doi.org/10.1017/s0317167100014724.
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Abstract:Objective:To determine whether different health care systems may affect reproductive decision-making among patients with Multiple Sclerosis (MS), we describe the reproductive practices and attitudes of Canadian MS patients ascertained from the multidisciplinary MS Clinic at Hôpital Notre-Dame in Montreal, Quebec (NDMSC), in comparison to those of matched American selfregistrants from the database of the North American Research Committee on Multiple Sclerosis (NARCOMS).Methods:A total of 665 self-administered questionnaires on reproductive practices were sent out to eligible attendees attending the NDMSC. The short questionnaires were completed and returned to the authors in an anonymous format for analysis.Results:A total of 459 completed questionnaires were returned. The majority of NDMSC respondents (72.5%) and NARCOMS subset (75.2% females), did not encounter a pregnancy following diagnosis of MS. The most common MS-related reason for this decision was “symptoms interfering with parenting” (75.0% for the NDMSC, 72.6% for the NARCOMS). The most commonly reported non-MS-related reason was “a completed family” by the time of diagnosis in both the NDMSC and NARCOMS subset (58.0%, 40.4%, respectively). Concerns about financial issues both related and unrelated to MS were also commonly reported by males and females in both cohorts but significantly more so among the NARCOMS participants.Conclusion:These results indicate that reproductive decisions of MS patients are highly affected by their illness and its associated disability, regardless of the available health care program. Health care providers should discuss their patients' reproductive needs and perceptions to help them make more informed decisions.
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Portaccio, Emilio, Pietro Annovazzi, Angelo Ghezzi, Mauro Zaffaroni, Lucia Moiola, Vittorio Martinelli, Roberta Lanzillo, et al. "Pregnancy decision-making in women with multiple sclerosis treated with natalizumab." Neurology 90, no. 10 (February 7, 2018): e823-e831. http://dx.doi.org/10.1212/wnl.0000000000005067.
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ObjectiveTo assess fetal risk after pregnancy exposure to natalizumab in women with multiple sclerosis (MS), with a specific focus on spontaneous abortion (SA) and congenital anomalies (CA).MethodsData of all pregnancies occurring between 2009 and 2015 in patients with MS treated with natalizumab and referring to 19 participating sites were collected and compared with those of pregnancies in untreated patients and patients treated with injectable immunomodulatory agents. Rates of SA and CA were also compared with those reported in the Italian population. Multivariable logistic and linear regression models were performed.ResultsA total of 92 pregnancies were tracked in 83 women. In the multivariable analysis, natalizumab exposure was associated with SA (odds ratio [OR] 3.9, 95% confidence interval [CI] 1.9–8.5, p < 0.001). However, the rate of SA (17.4%) was within the estimates for the general population, as well as the rate of major CA (3.7%). Moreover, exposure to natalizumab and interferon-β (IFN-β) was associated with lower length and weight of the babies (p < 0.001).ConclusionOur results showed that natalizumab exposure to up 12 weeks of gestation is associated with an increased risk of SA, although within the limits expected in the general population, whereas the risk of CA needs further investigation. Taking into account the high risk of disease reactivation after natalizumab suspension, pregnancy could be planned continuing natalizumab while strictly monitoring conception.Classification of evidenceThis study provides Class III evidence that in women with MS, natalizumab exposure increases the risk of spontaneous abortion as compared to IFN-β-exposed or untreated patients (OR 3.9, 95% CI 1.9–8.5).
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Prunty, M., L. Sharpe, P. Butow, and G. Fulcher. "The motherhood choice: Themes arising in the decision-making process for women with multiple sclerosis." Multiple Sclerosis Journal 14, no. 5 (June 2008): 701–4. http://dx.doi.org/10.1177/1352458507086103.
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Objective This study aimed to determine the main themes and concerns for women with Multiple Sclerosis when considering motherhood. Method Twenty women with multiple sclerosis from various stages in the decision-making process participated in focus-groups where information was gathered regarding their experiences of making this decision. Results The themes emerging most frequently during the decision-making process were: a) concerns about the mother's own health and well-being; b) well-being of the child; c) coping with parenting; d) societal attitudes; e) experiencing parenting and f) timing and pressure of the decision. Conclusion The results indicate that information regarding the effect of MS on pregnancy and child-rearing and the effect of pregnancy on MS and its progression need to be made more accessible to women. Information would be a valuable resource for women going through this decision-making process.
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Alwan, S., IM Yee, M. Dybalski, C. Guimond, E. Dwosh, TM Greenwood, R. Butler, and AD Sadovnick. "Reproductive decision making after the diagnosis of multiple sclerosis (MS)." Multiple Sclerosis Journal 19, no. 3 (July 3, 2012): 351–58. http://dx.doi.org/10.1177/1352458512452920.
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Objective: This study aimed to determine reproductive practices and attitudes of North Americans diagnosed with multiple sclerosis (MS) and the reasons for their reproductive decision making. Methods: A self-administered questionnaire on reproductive practices was mailed to 13,312 registrants of the North American Research Committee on Multiple Sclerosis (NARCOMS) database who met inclusion criteria for the study. Completed questionnaires were then returned to the authors in an anonymous format for analysis. Results: Among 5949 participants, the majority of respondents (79.1%) did not become pregnant following diagnosis of MS. Of these, 34.5% cited MS-related reasons for this decision. The most common MS-related reasons were symptoms interfering with parenting (71.2%), followed by concerns of burdening partner (50.7%) and of children inheriting MS (34.7%). The most common reason unrelated to MS for not having children was that they already have a “completed family” (55.6%). Of the 20.9% of participants who decided to become pregnant (or father a pregnancy) following a diagnosis of MS, 49.5% had two or more pregnancies. Conclusion: This study indicates that an MS diagnosis does not completely deter the consideration of childbearing in MS patients of both genders.
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Wilkie, David Daniel, Alessandra Solari, and Richard St John Nicholas. "The impact of the face-to-face consultation on decisional conflict in complex decision-making in multiple sclerosis: A pilot study." Multiple Sclerosis Journal - Experimental, Translational and Clinical 6, no. 4 (October 2020): 205521732095980. http://dx.doi.org/10.1177/2055217320959802.
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Background The role of face-to-face consultations in medicine is increasingly being challenged. Disease activity, national guidelines, life goals e.g. pregnancy, multiple therapies and side effects need to be considered on starting disease modifying treatments (DMTs) in people with multiple sclerosis (pwMS). Objectives We studied the impact of a face-to-face consultation on decision making, using decisional conflict (DC) as the primary outcome. Methods Prospective cohort study of 73 pwMS attending clinics who were making decisions about DMTs followed for one year. Prerequisites and consultation features were measured with the SURE scale for DC used as the primary outcome at baseline and at one year. Results The patient activation measure (PAM) was the only driver prior to the consultation associated with DC (p = 0.02) showing those less engaged were more likely to have DC. Overall, 51/73 (70%) of people made their treatment decision or reinforced a former decision during the consultation. We found making a treatment decision between the original consultation and the follow-up was associated with resolving DC (p = 0.008). Conclusions Patient engagement impacts DC but the HCP delivering the optimal Shared Decision Making (SDM) approach is additionally significant in reducing DC. In complex decisions there is a clear role for face-to-face consultations in current practice.
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Lewis, Ariane, and Steven Galetta. "Editors' note: Pregnancy decision-making in women with multiple sclerosis treated with natalizumab: I: Fetal risks." Neurology 91, no. 18 (October 29, 2018): 849.1–849. http://dx.doi.org/10.1212/wnl.0000000000006421.
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Proschmann, Undine, Katja Akgün, and Tjalf Ziemssen. "Reader response: Pregnancy decision-making in women with multiple sclerosis treated with natalizumab: I: Fetal risks." Neurology 91, no. 18 (October 29, 2018): 849.2–850. http://dx.doi.org/10.1212/wnl.0000000000006422.
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Sotgiu, Stefano, Anna Eusebi, Chiara Begliuomini, Franca R. Guerini, and Alessandra Carta. "Reader response: Pregnancy decision-making in women with multiple sclerosis treated with natalizumab: I: Fetal risks." Neurology 91, no. 18 (October 29, 2018): 850. http://dx.doi.org/10.1212/wnl.0000000000006429.
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Portaccio, Emilio, and Maria Pia Amato. "Author response: Pregnancy decision-making in women with multiple sclerosis treated with natalizumab: I: Fetal risks." Neurology 91, no. 18 (October 29, 2018): 851. http://dx.doi.org/10.1212/wnl.0000000000006430.
Full textDissertations / Theses on the topic "Multiple Sclerosis, decision making, pregnancy"
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SPONIAR, MARTINE CLAIRE. "THE MOTHERHOOD CHOICE: DEVELOPMENT AND EVALUATION OF A DECISION AID FOR WOMEN WITH MULTIPLE SCLEROSIS." Thesis, The University of Sydney, 2007. http://hdl.handle.net/2123/2246.
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Multiple sclerosis (MS) is the most common neurological disease affecting young adults. MS affects approximately 1 in 1000 people and, like other autoimmune diseases, women are more likely to be affected than men. The illness typically onsets between the ages of 20 and 40, and hence usually affects women of child-bearing age. The course of the MS is often unclear for years after diagnosis and since most women are diagnosed in their child-bearing years, they often have to make reproductive choices before their prognosis is clear and while the future remains uncertain. For women with MS, starting a family is an individual choice that needs to balance the importance of motherhood for the woman and her partner against the risks that she will be unable to care for the infant or child as a result of increasing disability. In other areas of medicine where finely balanced decisions are required, there has been a recent proliferation of decision aids that aim to inform people of the benefits and risks of opposing courses of action. In addition, decision aids help patients to weigh their values against the risks and benefits to make an informed decision. Despite the existence of over 200 decision aids to help patients consider decisions related to their medical conditions, not one exists that deals with the decision of whether or not to have a family for women with a chronic disability, such as MS. This thesis developed and evaluated a decision aid for women with MS to help them decide whether to start, forego or enlarge their families. The study utilised the criteria set out for the development of decision aids, according to the Cochrane Systematic Review of Patient Decision Aids (O'Connor et al., 2003). The first aim was to determine the proportion of women who are undecided about the motherhood choice and for whom a decision aid may be relevant. Results found that the motherhood choice was relevant to 46% of the women who responded to an initial mail-out. The second study aimed to establish women’s current concerns and thoughts regarding pregnancy and motherhood, and their response to the pilot decision aid. Twenty women participated in qualitative interviews and results supported previous findings that the mother’s health concerns, coping with parenting and societal attitudes are significant concerns when considering this decision. This study further identified concerns from different groups that had a direct impact on the decision to have children, including the experience of parenting, the child’s well-being and the timing and pressure of the decision. The main study was a randomised controlled trial of the decision aid aiming to determine whether the decision aid facilitated decision-making in women with MS. The study confirmed that the decision aid presented a balanced view to women, increased knowledge, reduced decisional conflict, increased decisional self-efficacy and certainty of the decision, and was free from adverse effects on psychopathology. The final component of the study was a 12 month follow-up which aimed to explore the long-term effectiveness of the decision aid and what aspects were valued by the women who received it. It was found that over time, women in the intervention group did maintain their certainty, but women in the control group also became more certain of their choice. At follow-up, the difference in certainty was no longer significant between the two groups. However, women did report that the intervention was useful in (a) providing access to information previously unavailable or difficult to obtain, (b) facilitating communication between women, their partners and health care professionals, (c) aiding them in considering and utilising their networks of support, and (d) preparing them for potential difficulties. In summary, this thesis developed and evaluated a decision aid for women with MS who are considering motherhood. The results showed that many women were undecided and, in the absence of good information on the topic, many women had concerns about pregnancy and parenthood. The decision aid was shown to be effective across a range of measures and free from adverse psychological effects. Hence, this is evidence-based resource can now be recommended for those women with MS who are currently contemplating motherhood.
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SPONIAR, MARTINE CLAIRE. "THE MOTHERHOOD CHOICE: DEVELOPMENT AND EVALUATION OF A DECISION AID FOR WOMEN WITH MULTIPLE SCLEROSIS." University of Sydney, 2007. http://hdl.handle.net/2123/2246.
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Doctor of PhilosophyMultiple sclerosis (MS) is the most common neurological disease affecting young adults. MS affects approximately 1 in 1000 people and, like other autoimmune diseases, women are more likely to be affected than men. The illness typically onsets between the ages of 20 and 40, and hence usually affects women of child-bearing age. The course of the MS is often unclear for years after diagnosis and since most women are diagnosed in their child-bearing years, they often have to make reproductive choices before their prognosis is clear and while the future remains uncertain. For women with MS, starting a family is an individual choice that needs to balance the importance of motherhood for the woman and her partner against the risks that she will be unable to care for the infant or child as a result of increasing disability. In other areas of medicine where finely balanced decisions are required, there has been a recent proliferation of decision aids that aim to inform people of the benefits and risks of opposing courses of action. In addition, decision aids help patients to weigh their values against the risks and benefits to make an informed decision. Despite the existence of over 200 decision aids to help patients consider decisions related to their medical conditions, not one exists that deals with the decision of whether or not to have a family for women with a chronic disability, such as MS. This thesis developed and evaluated a decision aid for women with MS to help them decide whether to start, forego or enlarge their families. The study utilised the criteria set out for the development of decision aids, according to the Cochrane Systematic Review of Patient Decision Aids (O'Connor et al., 2003). The first aim was to determine the proportion of women who are undecided about the motherhood choice and for whom a decision aid may be relevant. Results found that the motherhood choice was relevant to 46% of the women who responded to an initial mail-out. The second study aimed to establish women’s current concerns and thoughts regarding pregnancy and motherhood, and their response to the pilot decision aid. Twenty women participated in qualitative interviews and results supported previous findings that the mother’s health concerns, coping with parenting and societal attitudes are significant concerns when considering this decision. This study further identified concerns from different groups that had a direct impact on the decision to have children, including the experience of parenting, the child’s well-being and the timing and pressure of the decision. The main study was a randomised controlled trial of the decision aid aiming to determine whether the decision aid facilitated decision-making in women with MS. The study confirmed that the decision aid presented a balanced view to women, increased knowledge, reduced decisional conflict, increased decisional self-efficacy and certainty of the decision, and was free from adverse effects on psychopathology. The final component of the study was a 12 month follow-up which aimed to explore the long-term effectiveness of the decision aid and what aspects were valued by the women who received it. It was found that over time, women in the intervention group did maintain their certainty, but women in the control group also became more certain of their choice. At follow-up, the difference in certainty was no longer significant between the two groups. However, women did report that the intervention was useful in (a) providing access to information previously unavailable or difficult to obtain, (b) facilitating communication between women, their partners and health care professionals, (c) aiding them in considering and utilising their networks of support, and (d) preparing them for potential difficulties. In summary, this thesis developed and evaluated a decision aid for women with MS who are considering motherhood. The results showed that many women were undecided and, in the absence of good information on the topic, many women had concerns about pregnancy and parenthood. The decision aid was shown to be effective across a range of measures and free from adverse psychological effects. Hence, this is evidence-based resource can now be recommended for those women with MS who are currently contemplating motherhood.
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Asare, Irene, and Yvonne Hansson. "Beslutsfattande och copingstrategier kring graviditet och föräldraskap hos personer med Multipel Skleros : En litteraturstudie." Thesis, Högskolan i Gävle, Akademin för hälsa och arbetsliv, 2011. http://urn.kb.se/resolve?urn=urn:nbn:se:hig:diva-8643.
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Syftet med denna litteraturstudie var att beskriva faktorer och copingstrategier som påverkar/inverkar på personer med MS i beslutsfattandet kring graviditet och föräldraskap. Samt hur kvalitén var på gjorda studier inom detta område. Metoden var en deskriptiv litteraturstudie och sökning av artiklar gjordes i databasen PubMed (Medline). Sökningen resulterade i 13 vetenskapliga artiklar från fem länder med både kvalitativ och kvantitativ ansats, publicerade mellan år 1999-2010. Resultatet visade att avgörande faktorer som påverkar beslutsprocessen om att skaffa barn eller inte var bristfällig information, oro och rädsla kring hur graviditeten påverkar MS, behovet av stöd från andra, barnens och kvinnornas välbefinnande samt samhällets attityder. Copingstrategier som användes i beslutsfattandeprocessen var bl.a. bön och positivt tänkande. För mammor med MS var familjen ett starkt skäl att kämpa i det dagliga livet och de uttryckte behov av förståelse och bekräftelse hos sjukvårdspersonalen. Mammorna behövde ofta planera och strukturera det dagliga livet för att spara på krafterna och använde sig ofta av barn-inriktade aktiviteter för att underhålla eller distrahera barnet. Gjorda studier inom området var av relativt hög kvalitet. Slutsatsen är att kvinnor med MS som planerar graviditet behöver stöd och tydlig information för att underlätta det svåra beslutet och för att minska sin oro.The purpose of this study was to describe the factors and coping strategies that influence/impact on people with MS in decision making about pregnancy and parenthood. Also, to describe which quality the studies had. The authors used a method of descriptive design where the search of articles was made in PubMed (Medline). The search resulted in 13 scientific articles from five countries by both qualitative and quantitative approach, published between the years 1999-2010. The results showed that the critical factors that influence decision-making process was inconsistent information, concerns and fears about how pregnancy affects MS, the need for support from others, children's and women's wellbeing and society's attitudes. Coping strategies used in decision-making process included prayer and positive thinking. For moms with MS, the family was a strong reason to struggle in their daily lives and they expressed a need for understanding and confirmation of medical personnel. Mothers often had to plan and organize their daily life in order to spare energy, and they often used child-focused activities to entertain or distract the child. Studies in these fields were of relatively high quality. The conclusion is that women with MS who are planning pregnancy need support and clear information to facilitate the difficult decision and reduce their anxiety.
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Lippa, Katherine Domjan. "Cognition of Shared Decision Making: The Case of Multiple Sclerosis." Wright State University / OhioLINK, 2016. http://rave.ohiolink.edu/etdc/view?acc_num=wright1463576554.
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Eccles, Abigail. "An exploration of the information and decision support needs of people with Multiple Sclerosis." Thesis, University of Oxford, 2017. https://ora.ox.ac.uk/objects/uuid:ffcb33fe-5d5c-4e85-b88d-a05ef0f5dd39.
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Recent decades have seen increasing recognition of the importance of patient involvement during patient-professional interactions and promotion of preventative and long term approaches to healthcare for those with long-term conditions. The concepts of 'shared decision making' and 'personalised care planning' have both been advocated by patient groups, policy-makers, professional bodies and academia as best practice. During shared decision making, patients and healthcare professionals work in equal partnership to decide the best course of action. Shared decision making is a central tenet of personalised care planning, as it aims to foster partnerships between patients and healthcare professionals when making decisions, but personalised care planning also describes an overall approach to healthcare that is forward-planning and preventative, rather than episodic and reactive. Despite the breadth of support for such approaches, in reality they are not routinely adopted. Multiple Sclerosis (MS) is a heterogeneous neurodegenerative long term condition, which is unpredictable with limited treatments available. Such uncertainty and complexity position MS as an interesting long term condition to explore decisional and information needs. This doctoral research comprises of three methods stages. Firstly, two systematic reviews assessing the effectiveness of personalised care planning for people with long-term conditions and people with MS were carried out. Secondly, 22 in-depth semi-structured qualitative interviews were carried out with people with MS across the UK to explore experiences of decision making and interactions with healthcare professionals. Purposive sampling was carried out and data saturation determined sample size. A modified grounded theory approach was used and thematic analysis of interview data was carried out. Lastly, a series of structured qualitative interviews were carried out with 6 consultant neurologists. This stage was iterative in that problematic areas identified during analysis of interview data from stage 2 were presented to neurologists in infographic form to further examine issues raised. Framework analysis was carried out on neurologist interview data to examine their interpretations and potential solutions. Although there appears to be some evidence demonstrating that personalised care planning is effective for people with long term conditions, such favourable effects were not demonstrated in the context of MS. Based on the findings from the systematic reviews it is unclear whether personalised care planning is effective for people with MS and there is a clear gap in the literature examining this. Findings from the interview stages suggest there are key areas which are lacking in terms of information and decisional support. Such areas included the type and amount of information around the time of diagnosis, support when choosing disease modifying drugs and discussions about approaches outside mainstream medicine. Findings from neurologist interview data corroborated those from MS interview data, but through examination of issues raised it also highlighted some of the complexities and challenges of involving patients and enacting shared decision making in reality. This research identified key areas that require improvement for people with MS in terms of provision of the information and decisional support. Although in theory personalised care planning and shared decision making are positioned as best practice, in reality it is unclear whether they are effective or appropriate for people with MS. The way in which such approaches are enacted are complex and require careful consideration. Potential barriers and pitfalls identified within this study suggest a lack of clarity in how to respond to challenges and further investigation into how patient involvement is enacted is needed.
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Poschwatta, Barbara. "Ausgewählte Aspekte von Lebenssituation und medizinischer Versorgung Multiple Sklerose Betroffener in Deutschland." Doctoral thesis, Humboldt-Universität zu Berlin, Medizinische Fakultät - Universitätsklinikum Charité, 2005. http://dx.doi.org/10.18452/15247.
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In einer repräsentativen Querschnittsuntersuchung wurden 1219 Multiple Sklerose Betroffene in Deutschland zu den Auswirkungen der Multiple Sklerose auf deren Lebenssituation und ihrer Einschätzung der medizinischen Versorgung befragt. Schwerpunkte der Untersuchung, die auf einem integrativen Konzept der Patientenorientierung beruht, waren: Soziale Auswirkungen, Krankheitswahrnehmung, Alltagsbewältigung, Lebensqualität, Patienteninformation, Arzt-Patient-Beziehung, Therapieentscheidung und das ACT Programm in der medizinischen Versorgung. Negative Auswirkungen der Multiple Sklerose auf die untersuchten Lebensbereiche sind nachweisbar, aber die Einschätzung differiert in Abhängigkeit von der konkreten Lebenssituation und der Persönlichkeit. Der Schweregrad der körperlichen Einschränkungen steht nur bedingt in Beziehung zur subjektiven Einschätzung der Auswirkungen. Es bestätigt sich außerdem die besondere Bedeutung des nahen persönlichen Umfeldes als wichtigste Quelle der Unterstützung Multiple Sklerose Betroffener. Professionelle Unterstützung wird nur in geringem Maß in Anspruch genommen. Die Anforderungen der Befragten an die medizinische Versorgung sind sehr hoch. Negative Bewertungen der medizinischen Betreuung zeigen sich sowohl bei kritischeren Befragten und als auch bei ausgeprägten Autonomiebedürfnis. Die befragten Multiple Sklerose Betroffenen nutzen überwiegend objektive Informationsquellen als allgemeine Informationsbasis und zur Therapieentscheidung. Subjektives Erfahrungswissen wird meist nur ergänzend herangezogen. Veränderungsbedarf besteht in der medizinischen Versorgung im Bezug auf die Integration kritischerer, informierterer, selbstbewussterer Multiple Sklerose Betroffene und in Bezug auf den Zugang zu den vorhandenen Informations-, Unterstützungs- und Beratungsangeboten.In a representative study 1219 people with multiple sclerosis in Germany were asked about the impacts of multiple sclerosis on their living situation and their estimation of the medical supply. Main topics were: social impacts, perception of the disease, coping with everyday life, quality of life, patient information, doctor-patient-relationship, shared decision making and the ACT programme as tool in the medical supply. Negative impacts on all analysed areas of the living situation could be proved, but the estimation differs in dependence on the specific living situation and the personality. Unlike the physical disability isn''t a predictor of the individual estimation of the impact. People with multiple sclerosis get their main support by relatives and friends. Professional services are rarely used in relation to the aid by the individual social environment. People with multiple sclerosis have very high expectations on the medical supply. The estimation of the situation is relatively negative if the people are more critical as well as if they have a great need for autonomy. The interrogated people with multiple sclerosis use basically and for their therapy decision mostly objective, medical information. Most of them use subjective knowledge based on experiences only additionally. Medical supply should be optimised by better integrating people with multiple sclerosis who are more critical or self confident as well as better informed. Usability and access of the existing offers to inform, support and counsel people with multiple sclerosis have to be improved.
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Souza, Luciana Ferreira de. "Desenvolvimento de sistema de informação para monitoramento da esclerose múltipla." Universidade Federal da Paraíba, 2017. http://tede.biblioteca.ufpb.br:8080/handle/tede/9053.
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In the last decades, several countries have directed their actions to the incorporation of innovative technologies, applied in the health field, with the purpose of assisting the performance of professionals and users in the promotion of care, strengthened by public policies. In this context, there is a shortage of technological resources, aimed at comprehensive and multidisciplinary care, directed to patients with Multiple Sclerosis, especially of systems that support decision-making, in the follow-up of this clients, in Reference Centers belonging to the Unified Health System (SUS), this study aims to develop an information system (software prototype) to the monitoring of clinical parameters, indicative of impairment of the functionality of individuals with Multiple Sclerosis. This is a methodological study, of the type applied, involving the production of technology, composed by the stage of the software development process followed by the step of applying the decision tree model. The development of the software prototype followed the steps of the generic software engineering process presented by Pressman, which are: Communication, planning, modeling, construction and delivery. Modeling and prototyping took place from January to September 2016, along with the construction of the prototype's working flow diagram and interfaces. The flowchart was built in the Unified Modeling Language (UML) with the aid of the JUDE tool. The system was developed in PHP (Hipertext Processor) language, which is a script open source language, widely used, and is especially suitable for web development. Therefore, was used a Framework PHP (Laravel 5.2 Open Source), the MySQL as a database technology, and for the development of the screens HTML5, CSS3 and JQUERY were used. For the application of the decision tree model, was used the variables of the 50 patients enrolled in the software, in the Waikato Environment Analyis (WEKA) program, in Version 3.8, specifically the J48 algorithm. The results showed that, although the software prototype still has a path to be covered in future studies that will converge in its validation, it has shown a satisfactory performance for the activity of registration of professionals, patients and research instruments. Regarding the generated decision tree model, this contributed to the identification of the epidemiological and clinical variables associated with the worsening of the disability and also allowed the analysis of the differences of these associations in two distinct groups of treatment of Multiple Sclerosis. Considering all phases and tests of the system, the possibility of generating an electronic registry, which provides agility in the information process and contributes to the planning of the actions to the integrated multiprofessional assistance, as well as, the proposal of application of the decision tree model in order to classify the epidemiological variables associated with worsening disability, using the Expanded Disability Status Scale (EDSS) score, it is expected that the development of this study will awaken the need for further research using decision models that gives opportunity to health teams, especially those facing the complexity of assisting individuals with chronic diseases and progressive degeneration of organic functions.
Nas últimas décadas, tem havido uma preocupação dos governos com a incorporação de tecnologias inovadoras, aplicadas no campo da saúde, com o propósito de auxiliar o desempenho de profissionais e usuários na promoção do cuidado, fortalecido por políticas públicas. Nesse contexto, evidencia-se uma escassez de recursos tecnológicos, voltados à assistência integral e multidisciplinar, direcionada a pacientes com Esclerose Múltipla, especialmente de sistemas que deem suporte a tomada de decisão, no acompanhamento dessa clientela, em Centros de Referência pertencentes ao Sistema Único de Saúde. Assim, o presente estudo tem como objetivo de desenvolver um sistema de informação (protótipo de software) para o monitoramento de parâmetros clínicos, indicativos de comprometimento da funcionalidade de indivíduos com Esclerose Múltipla. Trata-se de um estudo metodológico, do tipo aplicado, envolvendo produção de tecnologia, composto pela etapa do processo de desenvolvimento do software seguida da etapa de aplicação do modelo de árvore de decisão. O desenvolvimento do protótipo de software seguiu os passos do processo genérico de engenharia de software apresentado por Pressman. A modelagem e a prototipação ocorreram no período de janeiro a setembro de 2016, juntamente com a construção do fluxograma de funcionamento do protótipo e das interfaces. O fluxograma foi construído na linguagem unificada de modelagem com auxílio da ferramenta JUDE. O sistema foi desenvolvido em linguagem PHP (Hipertext Processor), que é uma linguagem de script open source (código aberto) de uso livre, muito utilizada, e especialmente adequada para o desenvolvimento web. Portanto, utilizou-se uma Framework PHP (Laravel 5.2 Open Source), o MySQL como tecnologia de banco de dados, e para desenvolvimento das telas usou-se o HTML5, CSS3 e JQUERY. Para a aplicação do modelo de árvore de decisão, recorreu-se as variáveis contidas no cadastro de 50 pacientes e o programa Waikato Environment Analyis, na Versão 3.8, especificamente o algoritmo J48. Os resultados apontaram que, o protótipo de software mostrou desempenho satisfatório para a funcionalidade da atividade de cadastro de profissionais, de pacientes e de instrumentos de pesquisa. Quanto ao modelo de árvore de decisão gerado, este contribuiu para a identificação das variáveis epidemiológicas e clínicas associadas à piora da incapacidade e ainda possibilitou a análise das diferenças destas associações em dois grupos distintos de tratamento da Esclerose Múltipla. Considerando todas as fases e testes do sistema, a possibilidade de gerar um registro eletrônico, que proporcione agilidade no processo da informação e que contribua para o planejamento das ações frente à assistência multiprofissional integrada, bem como, a proposta de aplicação do modelo de árvore de decisão capaz de classificar as variáveis epidemiológicas associadas a piora da incapacidade, utilizando-se o escore da Escala Expandida do Estado de Incapacidade (EDSS). Espera-se que o desenvolvimento desse estudo desperte a necessidade de outras pesquisas utilizando modelos de decisão que oportunizem às equipes de saúde, em especial aquelas que enfrentam a complexidade de assistir indivíduos com doenças crônicas e de degeneração progressiva das funções orgânicas.
Books on the topic "Multiple Sclerosis, decision making, pregnancy"
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Wale, Jeffrey. Regulating Decision-Making in Multiple Pregnancy: An Inquiry into the Practice of Fetal Reduction. Cambridge Scholars Publisher, 2021.
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Krieger, Stephen, Ilana Katz Sand, Svenja Oynhausen, and Aaron Miller. Issues in the Design and Interpretation of Multiple Sclerosis Clinical Trials. Oxford University Press, 2016. http://dx.doi.org/10.1093/med/9780199341016.003.0031.
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This chapter covers important historical, scientific, and current issues in the development of modern clinical trials as well as therapeutic interventions for patients with multiple sclerosis. The chapter includes a review of terminology, methodology, and outcomes employed in clinical trials related to multiple sclerosis. A focus of the chapter is on the limitations of historical and current trial designs, particularly in regard to their application to clinical decision making. This second edition incorporates findings from clinical trials of oral agents and monoclonal antibodies developed for treatment of multiple sclerosis and provides an update on ethical issues in multiple sclerosis clinical research.
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Boss, Renee D. Death at the Beginning. Edited by Stuart J. Youngner and Robert M. Arnold. Oxford University Press, 2015. http://dx.doi.org/10.1093/oxfordhb/9780199974412.013.2.
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Medical and technological advances permit the survival of many infants born prematurely or with congenital anomalies. Prenatal diagnosis of a life-threatening fetal condition can give families the time to prepare for a sick infant and to consider treatment options ranging from pregnancy termination to fetal surgery. Despite the successes in perinatal and neonatal care, there remain a group of infants whose neonatal complications result in chronic illness, serious disability, and a foreshortened life span. It remains unclear how clinicians can best guide families who wish to make decisions based on their infant’s predicted quality of life. Multiple legal and policy restrictions attempt to limit the scope of parent–clinician decision making for these infants.
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O'Hagan, Anthony, and Mike West, eds. The Oxford Handbook of Applied Bayesian Analysis. Oxford University Press, 2018. http://dx.doi.org/10.1093/oxfordhb/9780198703174.001.0001.
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This handbook discusses various applications of modern Bayesian analysis in important and challenging problems. With contributions from leading researchers and practitioners in interdisciplinary Bayesian analysis, the book highlights current frontiers of research in each application. Each chapter involves a concise review of the application area, describes the problem contexts and goals, discusses aspects of the data and overall statistical issues, and offers detailed analysis with relevant Bayesian models and methods. The book is organised into five sections based on the field of application, namely: Biomedical and Health Sciences; Industry, Economics and Finance; Environment and Ecology; Policy, Political and Social Sciences; and Natural and Engineering Sciences. Topics range from an epidemiological study involving pregnancy outcomes, to matching and alignment of biomolecules; pharmaceutical testing from multiple clinical trials concerned with side-effects and adverse events; malaria mapping in the Amazon rain forest; risk assessment of contamination of farm-pasteurized milk with the bacterium Vero-cytotoxigenic E. coli (VTEC) O157; Bayesian analysis and decision making in the maintenance and reliability of nuclear power plants; risk modelling regarding speculative trading strategies in financial futures markets; the use of hierarchical models to characterize the uncertainty of climate change projections; and the use of multistate models for mental fatigue.
Book chapters on the topic "Multiple Sclerosis, decision making, pregnancy"
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Rizvi, Syed A., Joshua A. Stone, Saima T. Chaudhry, Nichola Haddad, Brian Wong, and Jennifer O. Grimes. "Clinical Decision-Making in the Management of Multiple Sclerosis." In Clinical Neuroimmunology, 159–77. Cham: Springer International Publishing, 2019. http://dx.doi.org/10.1007/978-3-030-24436-1_8.
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Kohanpour, Elnaz, Sajjad Taghvaei, Ramin Vatankhah, and Mohammad Eghtesad. "Robust Fuzzy Sliding Mode Controller Design for a Multiple Sclerosis Model." In Intelligent and Fuzzy Techniques in Big Data Analytics and Decision Making, 1343–50. Cham: Springer International Publishing, 2019. http://dx.doi.org/10.1007/978-3-030-23756-1_157.
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Telalovic, Jasminka Hasic, and Azra Music Kilic. "Using Data Science for Medical Decision Making Case: Role of Gut Microbiome in Multiple Sclerosis." In IFMBE Proceedings, 349–56. Cham: Springer International Publishing, 2019. http://dx.doi.org/10.1007/978-3-030-17971-7_54.
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Langhorne, Anna L., Patrick Thomas, and Laura Kolaczkowski. "Untangling the Web of e-Health: Multiple Sclerosis Patients’ Perceptions of Online Health Information, Information Literacy, and the Impact on Treatment Decision Making." In Online Communities and Social Computing, 304–12. Berlin, Heidelberg: Springer Berlin Heidelberg, 2013. http://dx.doi.org/10.1007/978-3-642-39371-6_35.
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BAKKE, PATRICK, and JEFFREY R. KIRSCH. "Multiple Sclerosis (MS)." In Decision Making in Anesthesiology, 176–77. Elsevier, 2007. http://dx.doi.org/10.1016/b978-0-323-03938-3.50065-8.
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Williamson, Eric. "Treatment of Multiple Sclerosis." In Decision-Making in Adult Neurology, 230–31. Elsevier, 2021. http://dx.doi.org/10.1016/b978-0-323-63583-7.00112-0.
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Cunningham, Rebecca. "Energy Conservation Interventions for Multiple Sclerosis." In 50 Studies Every Occupational Therapist Should Know, edited by Elizabeth A. Pyatak and Elissa S. Lee, 271—C39.S1. Oxford University PressNew York, 2023. http://dx.doi.org/10.1093/med/9780197630402.003.0039.
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Abstract The chapter “Energy Conservation Interventions for Multiple Sclerosis” provides a detailed review of a randomized controlled trial studying the impact of an occupational therapy delivered 6-week energy conservation course on fatigue, self-efficacy, and quality of life for individuals with multiple sclerosis. Additionally, this chapter reviews related relevant literature, including 1-year follow-up data, energy conservation group delivery for individuals with progressive multiple sclerosis, teleconference delivery of the energy conservation protocol, and one-to-one implementation of the energy conservation protocol. The chapter concludes with clinical implications and a case study to demonstrate clinical decision-making recommendations for energy conservation programming in the multiple sclerosis population.
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Kuusisto, Hanna, Seija Apila, and Kaija Saranto. "Information Provision and Quality. A Pilot Study on Shared Decision-Making in Multiple Sclerosis." In Studies in Health Technology and Informatics. IOS Press, 2022. http://dx.doi.org/10.3233/shti220691.
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The patient as an active participant in decision-making has become an important resource in health care. Shared decision-making (SDM) relies on the patient’s easy access to reliable and evidence-based health care information as well as the availability of patient-generated data, such as values and preferences for the health care professional (HCP). The aim of the present pilot study was to evaluate what type of information people with multiple sclerosis (pwMS) use in the SDM process, and what are the sources of that information. A semi-structured web-based survey of SDM was conducted through the MS-society in Finland. The results are presented against the Ottawa Decision Support Framework. A total of 27 pwMS participated. We found that all the participants wished to be involved in the decision-making process, but that they seldom found the information provided by HCP to be helpful. Instead, they searched the internet and visited various conversation platforms in social media, such as Facebook groups, for additional information.
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Tyan, Paul, and Lauren D. Schiff. "Application of Redefined Human Chorionic Gonadotropin Curves for the Diagnosis of Women at Risk for Ectopic Pregnancy." In 50 Studies Every Obstetrician-Gynecologist Should Know, 272–78. Oxford University Press, 2021. http://dx.doi.org/10.1093/med/9780190947088.003.0050.
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Seeber et al. set forth the structure for objectively assessing the trend of human chorionic gonadotropin (hCG) rise or fall for the diagnosis of an ectopic pregnancy. The primary goal of their work was to improve the accuracy of the diagnosis of an ectopic pregnancy based on 2 hCG values in an effort to provide the framework for counseling patients using objective data to guide clinical practice. Their proposed cutoff values provided high specificity and sensitivity to make the correct diagnosis, saved the patients multiple visits, and shortened the time-to-diagnosis. Based on the data published in this article, clinicians should be incentivized to use other resources to aid in the diagnosis of patients who present to the emergency department with pain or bleeding in the setting of early pregnancy. The hCG trends should guide clinical decision-making; however, other modalities to aid in diagnosis should be employed.
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Rajput, Rashi, Ramneek Kaur, Rishika Chadha, Shalini Mani, Rachana R., Harleen Kaur, and Manisha Singh. "The Aging Brain." In Advances in Medical Diagnosis, Treatment, and Care, 1–23. IGI Global, 2019. http://dx.doi.org/10.4018/978-1-5225-5282-6.ch001.
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Neurodegeneration is the progressive and gradual dysfunction and loss of axons in the central nervous system. It is the main pathological characteristic of chronic and acute neurodegenerative conditions like Alzheimer's disease (AD), Parkinson's disease (PD), and multiple sclerosis (MS). The usual aspects of pathogenesis of disease can be abridged with regards to the downstream implications of uncontrollable protein oligomerization and aggregation from postmitotic cells. The brain structure constantly changes in normal aging without any dysfunction accompanying the structural changes in brain. The decline in cognitive capabilities, for example, processing speed, memory, and functions related to decision making are the sign of healthy aging. The reduction in brain volume in healthy aging is possibly related to neuronal loss at some marginal extent. The following chapter discusses the structural and functional alterations in the brain in ageing and neurodegeneration.
Conference papers on the topic "Multiple Sclerosis, decision making, pregnancy"
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Koss, Jonathan, and Sabine Bohnet-Joschko. "Social Media Mining in Drug Development Decision Making: Prioritizing Multiple Sclerosis Patients’ Unmet Medical Needs." In Hawaii International Conference on System Sciences. Hawaii International Conference on System Sciences, 2022. http://dx.doi.org/10.24251/hicss.2022.368.
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English, Faith, and Devon Greyson. ""You still have that fear": Policy constraints on informed decision making about legalized cannabis use during pregnancy and lactation." In 2022 Annual Scientific Meeting of the Research Society on Marijuana. Research Society on Marijuana, 2022. http://dx.doi.org/10.26828/cannabis.2022.02.000.46.
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Background: Cannabis is the most commonly used drug during pregnancy in the United States and use during pregnancy is increasing along with greater legal and social acceptance. Methods: We conducted a qualitative content analysis of 23 in-depth interviews with pregnant and lactating people in Massachusetts, a state that legalized cannabis for adult use in 2016. Our aim was to explore how policy constrains or facilitates people’s ability to make informed decisions about cannabis use during pregnancy and lactation. Our analysis was conducted using an ecosocial approach, recognizing that the implementation and interpretation of cannabis policy can be understood at multiple levels, which interact with each other and shape the health and experiences of individuals. Additionally, this analysis was informed by a harm reduction approach in which we acknowledge the complexity surrounding cannabis use during pregnancy and lactation, while attempting to identify ways to reduce potentially harmful consequences. Results: Findings revealed that, despite the legal status of cannabis, there continues to be a lack of clarity for pregnant and lactating people regarding the legal implications of cannabis use. Inconsistent state and institutional policies about drug testing of mothers and newborns leave a cloud of fear hanging over the experiences of cannabis users and inhibit their ability to obtain expert advice from healthcare providers. Conclusion: Decision makers in public and institutional policy should work to clarify and update policies regarding substance use during pregnancy following legalization of a new substance, and ensure that pregnant and lactating people are afforded the same legal protections as the general population.
Reports on the topic "Multiple Sclerosis, decision making, pregnancy"
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MacFarlane, Andrew. 2021 medical student essay prize winner - A case of grief. Society for Academic Primary Care, July 2021. http://dx.doi.org/10.37361/medstudessay.2021.1.1.
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As a student undertaking a Longitudinal Integrated Clerkship (LIC)1 based in a GP practice in a rural community in the North of Scotland, I have been lucky to be given responsibility and my own clinic lists. Every day I conduct consultations that change my practice: the challenge of clinically applying the theory I have studied, controlling a consultation and efficiently exploring a patient's problems, empathising with and empowering them to play a part in their own care2 – and most difficult I feel – dealing with the vast amount of uncertainty that medicine, and particularly primary care, presents to both clinician and patient. I initially consulted with a lady in her 60s who attended with her husband, complaining of severe lower back pain who was very difficult to assess due to her pain level. Her husband was understandably concerned about the degree of pain she was in. After assessment and discussion with one of the GPs, we agreed some pain relief and a physio assessment in the next few days would be a practical plan. The patient had one red flag, some leg weakness and numbness, which was her ‘normal’ on account of her multiple sclerosis. At the physio assessment a few days later, the physio felt things were worse and some urgent bloods were ordered, unfortunately finding raised cancer and inflammatory markers. A CT scan of the lung found widespread cancer, a later CT of the head after some developing some acute confusion found brain metastases, and a week and a half after presenting to me, the patient sadly died in hospital. While that was all impactful enough on me, it was the follow-up appointment with the husband who attended on the last triage slot of the evening two weeks later that I found completely altered my understanding of grief and the mourning of a loved one. The husband had asked to speak to a Andrew MacFarlane Year 3 ScotGEM Medical Student 2 doctor just to talk about what had happened to his wife. The GP decided that it would be better if he came into the practice - strictly he probably should have been consulted with over the phone due to coronavirus restrictions - but he was asked what he would prefer and he opted to come in. I sat in on the consultation, I had been helping with any examinations the triage doctor needed and I recognised that this was the husband of the lady I had seen a few weeks earlier. He came in and sat down, head lowered, hands fiddling with the zip on his jacket, trying to find what to say. The GP sat, turned so that they were opposite each other with no desk between them - I was seated off to the side, an onlooker, but acknowledged by the patient with a kind nod when he entered the room. The GP asked gently, “How are you doing?” and roughly 30 seconds passed (a long time in a conversation) before the patient spoke. “I just really miss her…” he whispered with great effort, “I don’t understand how this all happened.” Over the next 45 minutes, he spoke about his wife, how much pain she had been in, the rapid deterioration he witnessed, the cancer being found, and cruelly how she had passed away after he had gone home to get some rest after being by her bedside all day in the hospital. He talked about how they had met, how much he missed her, how empty the house felt without her, and asking himself and us how he was meant to move forward with his life. He had a lot of questions for us, and for himself. Had we missed anything – had he missed anything? The GP really just listened for almost the whole consultation, speaking to him gently, reassuring him that this wasn’t his or anyone’s fault. She stated that this was an awful time for him and that what he was feeling was entirely normal and something we will all universally go through. She emphasised that while it wasn’t helpful at the moment, that things would get better over time.3 He was really glad I was there – having shared a consultation with his wife and I – he thanked me emphatically even though I felt like I hadn’t really helped at all. After some tears, frequent moments of silence and a lot of questions, he left having gotten a lot off his chest. “You just have to listen to people, be there for them as they go through things, and answer their questions as best you can” urged my GP as we discussed the case when the patient left. Almost all family caregivers contact their GP with regards to grief and this consultation really made me realise how important an aspect of my practice it will be in the future.4 It has also made me reflect on the emphasis on undergraduate teaching around ‘breaking bad news’ to patients, but nothing taught about when patients are in the process of grieving further down the line.5 The skill Andrew MacFarlane Year 3 ScotGEM Medical Student 3 required to manage a grieving patient is not one limited to general practice. Patients may grieve the loss of function from acute trauma through to chronic illness in all specialties of medicine - in addition to ‘traditional’ grief from loss of family or friends.6 There wasn’t anything ‘medical’ in the consultation, but I came away from it with a real sense of purpose as to why this career is such a privilege. We look after patients so they can spend as much quality time as they are given with their loved ones, and their loved ones are the ones we care for after they are gone. We as doctors are the constant, and we have to meet patients with compassion at their most difficult times – because it is as much a part of the job as the knowledge and the science – and it is the part of us that patients will remember long after they leave our clinic room. Word Count: 993 words References 1. ScotGEM MBChB - Subjects - University of St Andrews [Internet]. [cited 2021 Mar 27]. Available from: https://www.st-andrews.ac.uk/subjects/medicine/scotgem-mbchb/ 2. Shared decision making in realistic medicine: what works - gov.scot [Internet]. [cited 2021 Mar 27]. Available from: https://www.gov.scot/publications/works-support-promote-shared-decisionmaking-synthesis-recent-evidence/pages/1/ 3. Ghesquiere AR, Patel SR, Kaplan DB, Bruce ML. Primary care providers’ bereavement care practices: Recommendations for research directions. Int J Geriatr Psychiatry. 2014 Dec;29(12):1221–9. 4. Nielsen MK, Christensen K, Neergaard MA, Bidstrup PE, Guldin M-B. Grief symptoms and primary care use: a prospective study of family caregivers. BJGP Open [Internet]. 2020 Aug 1 [cited 2021 Mar 27];4(3). Available from: https://bjgpopen.org/content/4/3/bjgpopen20X101063 5. O’Connor M, Breen LJ. General Practitioners’ experiences of bereavement care and their educational support needs: a qualitative study. BMC Medical Education. 2014 Mar 27;14(1):59. 6. Sikstrom L, Saikaly R, Ferguson G, Mosher PJ, Bonato S, Soklaridis S. Being there: A scoping review of grief support training in medical education. PLOS ONE. 2019 Nov 27;14(11):e0224325.