Sickle Cell Trait Knowledge and Health Literacy in Caregivers Who Receive in-Person Sickle Cell Trait Education

Blood ◽  
2016 ◽  
Vol 128 (22) ◽  
pp. 2340-2340 ◽  
Author(s):  
Susan E Creary ◽  
Ismahan Adan ◽  
Joseph R Stanek ◽  
Sarah O'Brien ◽  
Deena J Chisolm ◽  
...  
Keyword(s):  
Health Literacy ◽  
Sickle Cell ◽  
Conflicts Of Interest ◽  
Sickle Cell Trait ◽  
Primary Care Providers ◽  
The United States ◽  
Care Providers ◽  
Childbearing Age ◽  
Limited Health Literacy ◽  
Limited Health

Abstract Background Sickle cell trait (SCT) affects approximately 8% of African Americans and these individuals are at risk of having children with SCT and sickle cell disease (SCD). Universal newborn screening in the United States detects SCT, but only 16% of individuals of childbearing age with SCT know their status. This is because SCT is not reliably recorded in medical records and SCT may not be consistently or effectively communicated to caregivers. Interventions that increase caregivers' SCT knowledge are important so that individuals with SCT can make informed decisions about their reproductive health. Objectives The objectives of this study were to determine if in-person SCT education with a trained educator improved caregivers' SCT knowledge and to assess caregivers' satisfaction with their SCT education. Methods Nationwide Children's Hospital (NCH) is a SCT referral center in Columbus, OH. At NCH, it is standard that caregivers of infants with SCT who are referred by their primary care providers receive in-person SCT education using visual aids from an educator who has completed a hemoglobinopathy counselor training course. From August 2015-July 2016, we performed a prospective, cross-sectional study of English-speaking caregivers of infants with hemoglobin S-trait who presented for education. Caregivers were excluded if they had SCD or previously received SCT education at NCH. Prior to receiving education, subjects electronically reported their demographic information and completed a health literacy assessment using the Newest Vital Sign (NVS, range 0-6) and an 8-question (true/false, multiple choice) pilot-tested, SCT knowledge assessment (SCTKA) that included items from a published SCT knowledge study and items routinely discussed during NCH SCT education. Lower NVS scores suggest a higher likelihood of limited health literacy. Caregivers with SCTKA scores <75% were considered to have low knowledge. Immediately after receiving education, caregivers repeated the SCTKA and provided feedback about the session. Assessments were not available to the educator during the session. The Wilcoxon Signed-Rank test was used to compare SCTKA scores pre- and post-education. Mann-Whitney tests were used to compare NVS and pre-SCTKA scores between those with high and low SCT knowledge after education. Results We recruited 114/374 eligible caregivers who presented during the study period and 113 completed the study. Subjects were mostly female (77%), 18-39 years of age (95.6%), parents or step parents (95.6%) of the child, and some (34.8%) reported that they had SCT. Many caregivers (52.2%) had NVS scores <4, but most (94.7%) reported the education was easy to understand, their questions were answered (99.1%), and they do intend to inform their child of their SCT status (99.1%). Caregivers' median pre-education SCTKA score significantly improved from 62.5% (IQR=25%) to 87.5% (IQR=12.5%) with education (p <0.0001). Only 38.1% of caregivers had high SCT knowledge pre-education but most (90.3%) achieved high knowledge with education. Caregivers with low SCT knowledge after education had significantly lower NVS scores (median=1, p=0.0286) and baseline SCTKA scores (median=50%, p=0.0032) compared to those with high SCT knowledge after education (NVS=3.5, baseline SCTKA median=62.5%). Discussion Our study suggests that caregivers' baseline SCT knowledge is low and improves with in-person education. Despite overall caregiver satisfaction and intensive in-person education from a trained educator, approximately 10% did not achieve high SCT knowledge and our results show that these caregivers may have lower baseline SCT knowledge and health literacy. Assessing caregivers' health literacy and SCT knowledge prior to education may be useful to allow educators to modify their education to meet the needs of those with limited health literacy and SCT knowledge. Future studies need to determine if tailored education results in high SCT knowledge among all caregivers, if caregivers' SCT knowledge is sustained, and if high caregiver knowledge results in more individuals with SCT knowing their status and using this knowledge to inform their reproductive decision-making. Disclosures No relevant conflicts of interest to declare.

scholarly journals Using Mixed Methods With Multiple Stakeholders to Inform Development of a Breast Cancer Screening Decision Aid for Women With Limited Health Literacy

2021 ◽  
Vol 6 (2) ◽  
pp. 238146832110332
Author(s):  
Christine M. Gunn ◽  
Ariel Maschke ◽  
Michael K. Paasche-Orlow ◽  
Ashley J. Housten ◽  
Nancy R. Kressin ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Health Literacy ◽  
Cancer Screening ◽  
Breast Cancer Screening ◽  
Primary Care Providers ◽  
Safety Net ◽  
Informational Needs ◽  
Care Providers ◽  
Limited Health Literacy ◽  
Limited Health

Background. When stakeholders offer divergent input, it can be unclear how to prioritize information for decision aids (DAs) on mammography screening. Objectives. This analysis triangulates perspectives (breast cancer screening experts, primary care providers [PCPs], and patients with limited health literacy [LHL]) to understand areas of divergent and convergent input across stakeholder groups in developing a breast cancer screening DA for younger women with LHL. Design. A modified online Delphi panel of 8 experts rated 57 statements for inclusion in a breast cancer screening DA over three rounds. Individual interviews with 25 patients with LHL and 20 PCPs from a large safety net hospital explored informational needs about mammography decision making. Codes from the qualitative interviews and open-ended responses from the Delphi process were mapped across stakeholders to ascertain areas where stakeholder preferences converged or diverged. Results. Four themes regarding informational needs were identified regarding 1) the benefits and harms of screening, 2) different screening modalities, 3) the experience of mammography, and 4) communication about breast cancer risk. Patients viewed pain as the primary harm, while PCPs and experts emphasized the harm of false positives. Patients, but not PCPs or experts, felt that information about the process of getting a mammogram was important. PCPs believed that mammography was the only evidence-based screening modality, while patients believed breast self-exam was also important for screening. All stakeholders described incorporating personal risk information as important. Limitations. As participants came from one hospital, perceptions may reflect local practices. The Delphi sample size was small. Conclusions. Patients, experts, and PCPs had divergent views on the most important information needed for screening decisions. More evidence is needed to guide integration of multiple stakeholder perspectives into the content of DAs. [Box: see text]

scholarly journals Evaluation of Factors Influencing Health Literacy in Adolescents and Adults with Sickle Cell Disease

Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 2110-2110
Author(s):  
Nidhi Bhatt ◽  
Cecelia Calhoun ◽  
Jason R. Hodges ◽  
Chinonyelum Nwosu ◽  
Guolian Kang ◽  
...  
Keyword(s):  
Health Literacy ◽  
Sickle Cell ◽  
Research Funding ◽  
The United States ◽  
Limited Health Literacy ◽  
Research Hospital ◽  
Adequate Health Literacy ◽  
Health Literacy Level ◽  
Adolescents And Adults ◽  
Limited Health

Introduction In the United States 36% of adults have limited health literacy, which is associated with poor health outcomes (Kutner et al. National Assessment of Adult Literacy.2006). Health literacy is defined as "the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions" (Nielsen-Bohlman et al. National Academies Press.2004). Health literacy is understudied in sickle cell disease (SCD), a genetic disease affecting a minority population in the United States. SCD Preventive treatment requires patient engagement, therefore health literacy is an important determinant of health outcomes in SCD. Previous studies reported Health literacy in adolescents with SCD is suboptimal (Perry et al. J Pediatr Nur.2017), but few studies have investigated factors influencing health literacy in this population. Health literacy can be impacted by many factors such as cognition, socioeconomic status, education level and gender. This study evaluated health literacy level and factors that influenced Health literacy in adolescents and adults with SCD. In addition, we assessed the relationship of health literacy level and Hydroxyurea therapy use, one of only two FDA-approved disease-modifying therapies for SCD. Methods This was a cross- sectional study of adolescents and adults with SCD performed at St. Jude Children's Research hospital and St. Louis Children's hospital. Adolescents and adults ages 15 to 45 years completed a health literacy assessment using the newest vital sign (NVS). NVS is a validated tool with 6 questions that tests reading, mathematics and comprehension based on a nutrition label (Weiss et al. Ann Fam Med.2005). Score of 0-1 suggests high likelihood of limited health literacy, 2-3 indicates possibility of limited health literacy and 4-6 almost always suggests adequate health literacy. Self-reported demographic information was collected such as educational level, household income, age, sex, race. Additionally, SCD genotypes and hydroxyurea utilization were confirmed through chart review. Results A random sample of 125 adolescents and adults with SCD was evaluated (Table 1): 34 (28.1%) had Hb SC or Hb Sβ+-thalassemia, 87(71.9%) had Hgb SS or Hgb Sβ0-thalassemia, and 4 participants had unknown or other genotypes. Limited health literacy was prevalent, only 40 (32%) of subjects had adequate literacy, median NVS score was 2 for all participants. Participants with Hgb SS/Hgb Sβ0-thalassemia were more likely to be on hydroxyurea (p<0.001, Chi-square test). NVS scores in subjects with less severe genotype were not significantly different compared to more severe genotypes (p=0.2, Man-Whitney-Wilcoxon test/MWW). There was no difference in health literacy scores between those on hydroxyurea and not on hydroxyurea (p=0.24, MWW test), however despite low health literacy being prevalent, 85 (68%) subjects with Hb SS or HbSβ0-thalassemia were on hydroxyurea. Income level was significantly different between patient on hydroxyurea not on hydroxyurea (p= 0.034, Fisher's exact test). In addition, patient whose income was $35000 or more were found to have a higher NVS score (p=0.012, Kruskal-Wallis test) (figure 1). Subjects with high NVS scores were significantly older (p=0.026, Analysis of variance test), over all education was significantly associated with health literacy (p=0.003, Fisher's exact). Conclusion This study shows a low prevalence of adequate health literacy amongst adolescents and adults with SCD. Our data corroborate previous literature which has reported limited health literacy in this population as well adds granularity to the factors that may influence this suboptimal outcome. There was a statistically significant association between health literacy, income level and education level in adolescents and young adults with SCD. Further, health literacy was not significantly associated with sickle cell genotype or hydroxyurea use. This study highlights the social determinants of health and specific need to address health literacy in SCD patients. To optimize the care of adolescents and young adults with SCD, targeted multimodal interventions that are tailored to low health literacy levels should be employed to reduce morbidity and mortality in this vulnerable population. Disclosures Kang: MBIO: Other: St. Jude Children's Research Hospital has an existing exclusive license and ongoing partnership with Mustang Bio for the further clinical development and commercialization of this XSCID gene therapy. King:Amphivena Therapeutics: Research Funding; Bioline: Consultancy; Celgene: Consultancy; Cell Works: Consultancy; Incyte: Consultancy; Magenta Therapeutics: Membership on an entity's Board of Directors or advisory committees; Novimmune: Research Funding; RiverVest: Consultancy; Tioma Therapeutics (formerly Vasculox, Inc.):: Consultancy; WUGEN: Equity Ownership. Zhao:MBIO: Other: St. Jude Children's Research Hospital has an existing exclusive license and ongoing partnership with Mustang Bio for the further clinical development and commercialization of this XSCID gene therapy. Hankins:NHLBI: Research Funding; National Committee for Quality Assurance: Consultancy; Global Blood Therapeutics: Research Funding; NHLBI: Honoraria; ASPHO: Honoraria; LYNKS Foundation: Research Funding; Novartis: Research Funding; Bluebird Bio: Consultancy.

scholarly journals Instrumental and affective communication with patients with limited health literacy in the palliative phase of cancer or COPD

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Janneke Noordman ◽  
Lotte Schulze ◽  
Ruud Roodbeen ◽  
Gudule Boland ◽  
Liesbeth M. van Vliet ◽  
...  
Keyword(s):  
Health Literacy ◽  
Treatment Options ◽  
Healthcare Providers ◽  
Care Providers ◽  
Affective Communication ◽  
Limited Health Literacy ◽  
Emotional Coping ◽  
Limited Health ◽  
Palliative Phase ◽  
Instrumental Communication

Abstract Background Patients have a ‘need to know’ (instrumental need) and a ‘need to feel known’ (affective need). During consultations with patients with limited health literacy (LHL) in the palliative phase of their disease, both the instrumental and the affective communication skills of healthcare providers are important. The study aims to explore instrumental and affective communication between care providers and LHL patients in the palliative phase of COPD or cancer. Methods In 2018, consultations between LHL patients in the palliative phase of cancer or COPD and their healthcare providers were video-recorded in four hospitals in the Netherlands. As there was no observation algorithm available for this setting, several items were created to parameterize healthcare providers’ instrumental communication (seven items: understanding, patient priorities, medical status, treatment options, treatment consequences, prognosis, and information about emotional distress) and affective communication (six items: hope, support, reassurance, empathy, appreciation, and emotional coping). The degree of each item was recorded for each consultation, with relevant segments of the observation selected and transcribed to support the items. Results Consultations between 17 care providers and 39 patients were video-recorded and analyzed. Care providers primarily used instrumental communication, most often by giving information about treatment options and assessing patients’ care priorities. Care providers assessed patients’ understanding of their disease less often. The patients’ prognosis was not mentioned in half the consultations. Within the affective domain, the care providers did provide support for their patients; providing hope, reassurance, empathy, and appreciation and discussing emotional coping were observed less often. Conclusions Care providers used mostly instrumental communication, especially treatment information, in consultations with LHL patients in the palliative phase of cancer or COPD. Most care providers did not check if the patient understood the information, which is rather crucial, especially given patients’ limited level of health literacy. Healthcare providers did provide support for patients, but other expressions of affective communication by care providers were less common. To adapt the communication to LHL patients in palliative care, care providers could be less wordy and reduce the amount of information, use ‘teach-back’ techniques and pay more attention to affective communication.

Health Literacy and Sickle Cell Disease: An Assessment Of Adolescents, Young Adults and Caregivers

Blood ◽  
2013 ◽  
Vol 122 (21) ◽  
pp. 2251-2251 ◽  
Author(s):  
Lisa Shook ◽  
Lori E Crosby ◽  
George F. Atweh
Keyword(s):  
Young Adults ◽  
Health Literacy ◽  
Sickle Cell ◽  
Grade Level ◽  
Healthcare Providers ◽  
Cell Disease ◽  
Limited Health Literacy ◽  
Demographic Survey ◽  
Limited Health ◽  
Average Health

Abstract Introduction Sickle cell disease (SCD) is an inherited, lifelong disease affecting red blood cells. In the US, SCD affects approximately 100,000 individuals. SCD is typically diagnosed at birth with newborn screening, and the burden of disease management during childhood, including prevention of complications, medication management including decision-making about treatments, and navigating the healthcare system, falls to the caregiver. As life expectancy with SCD increases well into adulthood, this responsibility progressively transitions to adolescents in tandem with transition to adult care. Health literacy is defined by the Institute of Medicine as “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions”. This includes understanding medication instructions, consent forms, patient education materials, and navigating complex healthcare systems. Understanding healthcare providers’ verbal and written instructions, and asking medical providers questions are also important aspects. Additionally, individuals with a chronic illness must understand and self-manage needs specific to their condition, including recognizing critical signs and symptoms. Research has demonstrated a relationship between low health literacy and poor outcomes in a number of chronic illnesses. However to our knowledge, there is not published research specifically about SCD and health literacy. Methods Caregivers of children ages newborn – 18 years old with a confirmed diagnosis of SCD were recruited at the Cincinnati Comprehensive Sickle Cell Center (CCSCC), and adolescents/young adults (14-22 years old) with SCD were recruited at the CCSCC and the University of Cincinnati Adult Sickle Cell clinic. Caregivers completed a demographic survey and Newest Vital Sign (NVS) health literacy test. Adolescents/young adults completed the REALM-Teen and demographic survey. Results To date, 56 caregivers have participated in the study with the majority being the child’s mother; the majority of these caregivers' children have Hb SS (Hb SS 71%; Hb SC 27% SB+beta thal 2%). Demographics showed that 56% of participants completed high school/GED; 21% obtained a bachelors’ degree, and 14% obtained a master’s degree. Over 95% of caregivers reported confidence in understanding information from healthcare providers, and over 85% reported “always understanding prescription directions.” Additionally, 90% reported being comfortable asking a healthcare provider questions during a clinic visit. Consistent with this, NVS results indicated that 93% of caregivers had “adequate” or “limited” health literacy and only 7% had a “high likelihood of limited health literacy”. To date, 50 adolescents/young adults have participated in the study: Hb SS (54%), Hb SC (20%), SB+Beta Thal (6%), beta thal intermedia (2%), and unknown Hb on self-report (16%). REALM-Teen results showed that the majority (52%) of adolescents/young adults obtained a health literacy score equivalent to the 6th-7th grade levels; 20% scored consistent with an 8th-9th grade level; 18% scored at the10th grade level and above; 6% scored at the less than 3rd grade level, and 4% scored at the 4th-5th grade level. In contrast to this, 66% of adolescent/young adult respondents reported that they usually understand medical information from healthcare providers, and 72% reported that they “always” understand prescription directions. Discussion/Implications Health literacy assessments of caregivers of children with SCD demonstrated overall “higher than average” health literacy. However, the average health literacy level of adolescents and adults with SCD appears to be much lower (6th-7th grade level). The study is continuing to enroll participants so this could change with a larger sample size. Despite this limitation, this study highlights the importance of understanding health literacy levels of caregivers and adolescents/young adults with SCD and the need to tailor patient education materials to meet health literacy needs. Disclosures: No relevant conflicts of interest to declare.

Plain Language Pediatrics

2008 ◽  
Author(s):  
Mary Ann Abrams ◽  
Benard P. Dreyer
Keyword(s):  
Health Care ◽  
Health Literacy ◽  
Patient Education ◽  
Health Care Providers ◽  
Care Providers ◽  
Plain Language ◽  
Reading Levels ◽  
Limited Health Literacy ◽  
Ear Infections ◽  
Limited Health

An essential tool to help improve communication between pediatrician and patient or family, Plain Language Pediatrics offers a framework for implementing a plain language approach to communication in your office, and provides specific steps you can take to ensure the information you present to patients and their parents is clearly understood. Included are 25 reproducible plain language patient education handouts--in English and Spanish! Plain Language Pediatrics combines health literacy and plain language principles to present information in a way that makes it as easy as possible for everyone to understand, and applies these principles to a variety of ambulatory acute, chronic, and preventive conditions. Common pediatric topics such as asthma, ADHD, ear infections, and medical dosing are addressed in detail. This robust resource is divided into 2 parts. Part I explores limited health literacy, including the scope of the problem, how it affects children in particular, and how health care providers can address and overcome health literacy issues with patients and their caregivers. At the heart of Part II is a new series of 25 reproducible patient education handouts in English and Spanish that feature need-to-know information up front, health care terms and jargon, practical pronunciation guides, low reading levels, user-friendly layouts, and simple, purposeful illustrations.

scholarly journals Health Literacy and Health Outcomes of Adults in the United States: Implications for Providers

2018 ◽  
Author(s):  
Marilyn McDonald ◽  
Laura Shenkman
Keyword(s):  
United States ◽  
Health Care ◽  
Health Literacy ◽  
Health Outcomes ◽  
The United States ◽  
World Health ◽  
Elderly Persons ◽  
Limited Health Literacy ◽  
Limited Health

The purpose of this paper is to explore health literacy of adults in the United States and review health outcomes as well as provider implications. Limited health literacy is a serious problem in the United States. Approximately 80 million adults in the United States have limited health literacy, which can adversely affect the quality of their health care. Poor health outcomes are associated with being health illiterate. Evidence shows that limited health literacy is associated with more hospitalizations; greater use of emergency care; lower receipt of mammography screening and influenza vaccine; poorer ability to demonstrate taking medications properly; poorer ability to interpret drug labels and health messages; and, among elderly persons, poorer overall health status and higher mortality rates. Health literacy is essential for patients to be able to take control and manage their own health. The benefits of being health literate include greater patient safety, less hospitalizations, a greater ability to care for oneself, and a greater cost savings to the healthcare system. This paper emphasizes “best practices” recommended by the World Health Organization (WHO),1 The American Medical Association (AMA),2 the Institute of Medicine (IOM),3 the Center for Disease Control (CDC),4 and the Joint Commission (JCAHO) 5 When patients, providers and communities work together to understand and improve health literacy a greater quality of life will result. Today’s health care providers are in a position to make an impact on the health illiteracy epidemic and improve the patient’s understanding about their health and outcomes.

scholarly journals Closing Knowledge Gaps Among Parents of Children with Sickle Cell Trait

Blood ◽  
2021 ◽  
Vol 138 (Supplement 1) ◽  
pp. 2980-2980
Author(s):  
Chase Beeman ◽  
Mary Ann Abrams ◽  
Kristin Zajo ◽  
Joseph R Stanek ◽  
Alexandra Martinez-Mendez ◽  
...  
Keyword(s):  
Sickle Cell ◽  
Education Program ◽  
Interim Analysis ◽  
Conflicts Of Interest ◽  
Sickle Cell Trait ◽  
Genetic Counselor ◽  
The United States ◽  
Knowledge Gaps ◽  
The One

Abstract Background Nearly 8% of African Americans carry sickle cell trait (SCT) and approximately 2000 infants in the United States are born with sickle cell disease (SCD) annually. SCT knowledge is necessary for individuals with SCT to make informed reproductive decisions since they are at risk of having children with SCD. Despite state programs that inform parents of their child's SCT status via telephone call, &gt;80% of adults with SCT do not know their status. This may be because many parents have low health literacy (HL), low baseline SCT knowledge, and/or may not achieve high sustained SCT knowledge after non-standardized phone encounters. The SCTaware education program was designed to improve SCT education to close knowledge gaps that may exist after telephone-only education. It also aims to increase parents' SCT status awareness and their ability to inform their affected children in the future. Objectives The objectives of this interim analysis were to assess central Ohio parents' SCT knowledge after being educated about their child's SCT status by telephone (standard of care) and to explore if SCTaware improves parents' knowledge immediately and one month after receiving it. Methods A multidisciplinary team (hematologists, a genetic counselor, HL experts, SCT educators, parent stakeholders, and visual design experts) developed SCTaware, a videoconference-administered education program that is delivered by a trained educator and includes SCT knowledge objectives, HL-informed communication strategies (e.g., teach-back), visuals scoring highly for understandability, and access to narrated post-education review materials. Through electronic medical record review, we identified English-speaking biological parents of infants with SCT who were informed of their child's SCT by telephone. Adult parents who were able to be contacted by telephone were invited to participate if they did not have SCD or a child with SCD, had not received SCT education in central Ohio for another child, were not (or partner was not) currently pregnant, and had access to an electronic device capable of videoconferencing. After informed consent, parents reported their and their child's SCT status, completed a demographic survey, a HL assessment, and the published Sickle Cell Trait Knowledge Assessment (SCTKA) consisting of eight questions. Participants then received SCTaware and repeated the SCTKA and report of their and their child's SCT status immediately and one month later. SCTKA scores &lt;75% correct were considered low. Data were summarized descriptively. Linear mixed effects models with random intercept for each parent were used to assess scores longitudinally. Results Of the 297 children with SCT whose parent received telephone education between March 2020-April 2021, 114 had a parent who was able to be contacted, 22 were ineligible when contacted, and five declined participation because they reported having adequate knowledge. To date, 63 parents have enrolled, 54 have completed baseline surveys (Table 1), 44 have completed SCTaware, and 35 have completed the one-month follow-up. Following telephone education, 44% of participants had high SCT knowledge. Participants' mean SCTKA scores post-telephone education did not significantly differ whether they had received telephone education ≤3 months or &gt;3 months before enrolling in the study (64% correct vs. 71% correct, p=0.30). Of those who had completed SCTaware, 42 (95%) achieved high SCT knowledge immediately after. Of those who have completed the one-month follow-up, 94% continue to have high knowledge. Participants with low HL had significantly lower SCTKA scores post-telephone education but those with high and low HL achieved and maintained high sustained knowledge one month after receiving SCTaware (Figure 1). Discussion Our interim analysis shows that over half of parents, especially those with low HL, have low SCT knowledge after receiving education by telephone regarding their infant's diagnosis of SCT. SCTaware is a scalable tool that could be widely implemented as an initial program or as a follow-up to telephone education if final analyses confirm that SCTaware leads to sustained knowledge gains. Future studies, however, need to determine parent access to and satisfaction with SCTaware and if individuals use the knowledge gained to inform their reproductive decision-making and to inform their affected children. Figure 1 Figure 1. Disclosures No relevant conflicts of interest to declare.

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