| Publication |
Sentence |
Publish Date |
Extraction Date |
Species |
| Ke Ding, Benjamin Bear, Erica Sood, Melissa Alderfer, Lori Crosby, Aimee K Hildenbran. Disease-modifying therapies for sickle cell disease: Decisional needs and supports among adolescents and young adults. Pediatric blood & cancer. 2024-04-16. PMID:38622789. |
shared decision-making is one promising solution to addressing barriers in use of disease-modifying therapies for adolescents and young adults (ayas) with sickle cell disease (scd). |
2024-04-16 |
2024-04-18 |
Not clear |
| Nchangwi Syntia Munung, Karen Kengne Kamga, Marsha J Treadwell, Jemima Dennis-Antwi, Kofi A Anie, Daima Bukini, Julie Makani, Ambroise Wonka. Perceptions and preferences for genetic testing for sickle cell disease or trait: a qualitative study in Cameroon, Ghana and Tanzania. European journal of human genetics : EJHG. 2024-02-20. PMID:38374470. |
the results show a general preference for newborn screening for scd over prenatal and premarital/preconception testing, primarily due to its simpler decision-making process and lower risk for stigmatization. |
2024-02-20 |
2024-02-22 |
human |
| Nchangwi Syntia Munung, Karen Kengne Kamga, Marsha J Treadwell, Jemima Dennis-Antwi, Kofi A Anie, Daima Bukini, Julie Makani, Ambroise Wonka. Perceptions and preferences for genetic testing for sickle cell disease or trait: a qualitative study in Cameroon, Ghana and Tanzania. European journal of human genetics : EJHG. 2024-02-20. PMID:38374470. |
participants mentionned that women bear a heightened burden of decision making in scd/sct testing, face a higher risk of rejection by potential in-laws/partners if the carriers of sct, as well as the possibility of divorce if they have a child with scd. |
2024-02-20 |
2024-02-22 |
human |
| James McKinney, Megan Isserow, Justin Wong, Saul Isserow, Nathaniel Moulso. New insights and recommendations for athletes with Hypertrophic Cardiomyopathy. The Canadian journal of cardiology. 2024-02-18. PMID:38369259. |
resultant expert consensus guideline recommendations universally restricted athletes with hcm from participation in moderate-to-vigorous intensity sport and exercise in a binary "yes" or "no" clinical decision-making process with the goal of reducing the risk of sports related scd. |
2024-02-18 |
2024-02-21 |
Not clear |
| James McKinney, Megan Isserow, Justin Wong, Saul Isserow, Nathaniel Moulso. New insights and recommendations for athletes with Hypertrophic Cardiomyopathy. The Canadian journal of cardiology. 2024-02-18. PMID:38369259. |
this includes an improved understanding of the overall prevalence of hcm in the general population, improved observational estimates of the risk of scd related to continued sport and exercise participation, and a general shift towards improved patient centered approaches to care through shared decision-making processes. |
2024-02-18 |
2024-02-21 |
Not clear |
| Lakshmanan Krishnamurti, Jingchen Liang, Zili He, Yanhong Deng, Vineetha Reddy Nallagatla, Rohaum Hamidi, Aron Flagg, Niketa C Sha. Incidence and Risk Factors of Pain Crisis After Hematopoietic Cell Transplantation for Sickle Cell Disease. Blood advances. 2024-02-07. PMID:38324722. |
multivariable logistic regression models confirmed age at hct, kps, graft type, donor type, history of voc 2 yearspre-hct, and gf as independent predictors of pain crisis post-hct and generated predictive models and nomograms for pain crisis post-hct for scd which can support shared decision-making. |
2024-02-07 |
2024-02-10 |
Not clear |
| Nchangwi Syntia Munung, Obiageli E Nnodu, Patrick Ohiani Moru, Akpaka A Kalu, Benido Impouma, Marsha J Treadwell, Ambroise Wonka. Looking ahead: ethical and social challenges of somatic gene therapy for sickle cell disease in Africa. Gene therapy. 2023-11-27. PMID:38012299. |
given these elsis, we suggest that researchers, pharma, funders, global health agencies, ethics committees, science councils and scd patient support/advocacy groups should work together to co-develop: (1) patient-centric governance for gene therapy in africa, (2) public engagement and education materials, and (3) decision making toolkits for trial participants. |
2023-11-27 |
2023-11-29 |
human |
| Hong-Ho Yang, Isaac Yang, Quinton S Gope. First-Side and Second-Side Repair of Bilateral Superior Canal Dehiscence. The Laryngoscope. 2023-11-08. PMID:37937741. |
with repairs of unilateral scd as reference, we investigate the comparative effectiveness of first-side and second-side repairs, in hopes of establishing knowledge that can guide clinical decision-making pertaining the appropriateness of second-side surgeries. |
2023-11-08 |
2023-11-20 |
Not clear |
| Ricardo Wijngaarde, Mijra Koning, Karin Fijnvandraat, Dirk Ubbin. Shared decision-making between paediatric haematologists, children with sickle cell disease and their parents: an exploratory study. European journal of pediatrics. 2023-10-31. PMID:37906307. |
we assessed if, and to what extent, paediatricians engage children with scd and/or their parents in the decision-making process. |
2023-10-31 |
2023-11-08 |
Not clear |
| Kanagasabai Udhayashankar, Patience D Franklin, Cecelia J Nuta, Adolphus K Cherue, Heather Haq, Debbe Thompson, Venée N Tubma. Determinants of retention in care of newborns diagnosed with sickle cell disease in Liberia: Results from a mixed-methods study of caregivers. PLOS global public health. vol 3. issue 4. 2023-04-04. PMID:37014836. |
the objective of this study was to identify factors that influence caregiver decision-making around chronic health care needs of a child with scd. |
2023-04-04 |
2023-08-14 |
Not clear |
| Desireé N Williford, Emily A McTate, Anna M Hood, Steven K Reader, Aimee K Hildenbrand, Kim Smith-Whitley, Susan E Creary, Alexis A Thompson, Rogelle Hackworth, Jean L Raphael, Lori E Crosb. Psychologists as leaders in equitable science: Applications of antiracism and community participatory strategies in a pediatric behavioral medicine clinical trial. The American psychologist. vol 78. issue 2. 2023-04-03. PMID:37011163. |
the current commentary describes the application of antiracism and participatory strategies to the research design, implementation, and dissemination of a behavioral medicine clinical trial (engage-hu; nct03442114) of shared decision-making (sdm) for pediatric patients with scd, including (a) the development of a research question to promote justice for racialized groups; (b) a focus on "redressing imbalances" through sdm and a multidisciplinary, inclusive research team led by a black psychologist; (c) community participatory approaches through the integration of stakeholder feedback across the study; and (d) centering context by attending to structural realities in response to the covid-19 and racism pandemics. |
2023-04-03 |
2023-08-14 |
Not clear |
| Shannon Phillips, Alyssa M Schlenz, Shannon D'Alton, Mary Johnson, Julie Kante. Patient and Family Opioid Decision-Making for Pain Management in Sickle Cell Disease: A Qualitative Study. The journal of pain. 2023-03-02. PMID:36863679. |
this qualitative descriptive study was conducted to explore perspectives of decision-making for opioid medications in scd. |
2023-03-02 |
2023-08-14 |
Not clear |
| Shannon Phillips, Alyssa M Schlenz, Shannon D'Alton, Mary Johnson, Julie Kante. Patient and Family Opioid Decision-Making for Pain Management in Sickle Cell Disease: A Qualitative Study. The journal of pain. 2023-03-02. PMID:36863679. |
we conducted 20 in-depth interviews with caregivers of children with scd and individuals with scd to elucidate the decision-making processes around home use of opioid therapy for pain management at a single center. |
2023-03-02 |
2023-08-14 |
Not clear |
| Shannon Phillips, Alyssa M Schlenz, Shannon D'Alton, Mary Johnson, Julie Kante. Patient and Family Opioid Decision-Making for Pain Management in Sickle Cell Disease: A Qualitative Study. The journal of pain. 2023-03-02. PMID:36863679. |
perspective: this study illustrates the factors involved in decision-making around home opioid use for pain management in children and young adults with scd. |
2023-03-02 |
2023-08-14 |
Not clear |
| Shannon Phillips, Alyssa M Schlenz, Shannon D'Alton, Mary Johnson, Julie Kante. Patient and Family Opioid Decision-Making for Pain Management in Sickle Cell Disease: A Qualitative Study. The journal of pain. 2023-03-02. PMID:36863679. |
these findings can be applied to determining shared decision-making approaches around pain management between providers and patients, in accordance with recent scd pain management guidelines. |
2023-03-02 |
2023-08-14 |
Not clear |
| Meghan Gallagher, Anjulika Chawla, Brenna L Brady, Sherif M Badaw. Heterogeneity of the long-term economic burden of severe sickle cell disease: a 5-year longitudinal analysis. Journal of medical economics. 2022-10-12. PMID:36222016. |
as scd treatment landscapes evolve toward curative intent gene therapies, understanding how scd-associated costs may change over the patient lifetime will be important for medical decision-making. |
2022-10-12 |
2023-08-14 |
Not clear |
| Marsha J Treadwell, Lisa Du, Neha Bhasin, Anne M Marsh, Theodore Wun, M A Bender, Trisha E Wong, Nicole Crook, Jong H Chung, Shannon Norman, Nicolas Camilo, Judith Cavazos, Diane Nugen. Barriers to hydroxyurea use from the perspectives of providers, individuals with sickle cell disease, and families: Report from a U.S. regional collaborative. Frontiers in genetics. vol 13. 2022-09-12. PMID:36092883. |
our results support strengthening provider understanding and confidence in implementing existing scd guidelines, and the importance of shared decision making. |
2022-09-12 |
2023-08-14 |
human |
| Thomas Hadberg Lynge, Jakob Lund Nielsen, Bjarke Risgaard, Christian van der Werf, Bo Gregers Winkel, Jacob Tfelt-Hanse. Causes of sudden cardiac death according to age and sex among persons aged 1-49 years. Heart rhythm. 2022-09-08. PMID:36075534. |
knowledge of causes of sudden cardiac death (scd) according to age is important in clinical decision-making and to lower the risk of scd in family members of scd victims. |
2022-09-08 |
2023-08-14 |
Not clear |
| Fabiola B Sozzi, Elisa Gherbesi, Andrea Faggiano, Eleonora Gnan, Alessio Maruccio, Marco Schiavone, Laura Iacuzio, Stefano Carug. Viral Myocarditis: Classification, Diagnosis, and Clinical Implications. Frontiers in cardiovascular medicine. vol 9. 2022-07-07. PMID:35795363. |
the risk of scd in patients with wide areas of lge is significant, and a shared decision-making approach is warranted. |
2022-07-07 |
2023-08-14 |
human |
| Kayle Shapero, Chad Gier, Kaylie Briske, Erica S Spatz, Meagan Wasfy, Aaron L Baggish, Stacey Pierce, Michael J Ackerman, Rachel Lamper. Experiences of athletes with arrhythmogenic cardiac conditions in returning to play. Heart rhythm O2. vol 3. issue 2. 2022-05-02. PMID:35496453. |
recommendations for return to play (rtp) for athletes with genetic (or congenital) heart diseases (ghd) predisposing to sudden cardiac death (scd) have evolved from an initially paternalistic and conservative approach, to supporting a more flexible approach to decision-making. |
2022-05-02 |
2023-08-13 |
Not clear |