Department: Allied Health Sciences : Genetic Counseling ![[clear]](close-x.png "Remove this limiter")
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1.
Acra, Erin E.
Estimating the Familial Recurrence Risk of Anorectal Malformation with Rectoperineal Fistula or Rectovestibular Fistula.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2008, University of Cincinnati
► Anorectal malformations (ARMs) are congenital abnormalities of distal hindgut development that include…
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▼ Anorectal malformations (ARMs) are congenital abnormalities of distal hindgut development that include a spectrum of malformations with a range of severities. ARMs were once considered to be sporadic with low heritability; however, reports of families with multiple members affected with an ARM suggest an important genetic component to the etiology of these malformations. This study determined the heritability and familial recurrence in two specific types of ARMs, rectoperineal and rectovestibular fistulas. Methods for this study included collecting three generation family histories of individuals born with either a rectoperineal or a rectovestibular fistula via phone interviews. A high heritability estimate of 0.89 ± 0.09 (p<0.00001) and recurrence risks of 2-5% were discovered. These results indicate that rectoperineal and rectovestibular fistulas are highly heritable and have a strong genetic component. Healthcare professionals need to be aware of the familial recurrence and families should be counseled about the increased risks.
Advisors/Committee Members: Bates, Michael.
Subjects: Genetics
Keywords: anorectal malformations; recurrence risk; rectoperineal fistula; rectovestibular fistula
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2.
Au, Margaret Grace.
Family health history: Risks and intent to share with a healthcare provider in an urban Appalachian population.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2008, University of Cincinnati
► Family history is a risk factor for common diseases. This study examined…
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▼ Family history is a risk factor for common diseases. This study examined familial risk as a predictor of intent to share family history with a healthcare provider for women in an urban Appalachian population. Women (n = 100) in the Cincinnati and Dayton, Ohio, region with less than a college education participated in education sessions, which focused on the U.S. Surgeon General's Family History tool. Intent to share family history with a health care provider was measured in education session evaluations. Participant-generated pedigrees were assigned high, moderate, or average risks for six common diseases. Intent to share family history with a healthcare provider was high (78.3%). Chi-square analyses revealed no statistically significant relationships between family history risk and intent (heart disease X2 = 2.75, df = 2, p = 0.25; diabetes X2 = 0.44, df = 2, p = 0.80; stroke X2 = 4.00, df = 2, p = 0.14).
Advisors/Committee Members: Myers, Melanie.
Subjects: Health; Health care; Health education
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3.
Bedard, Angela C.
Career Research Goals of Genetic Counselors in Training.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2004, University of Cincinnati
► Genetic counseling students were surveyed to determine their career research goals and…
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▼ Genetic counseling students were surveyed to determine their career research goals and interest in pursuing advanced degrees, and genetic counseling program directors were surveyed to assess the climate for research training within their programs. A substantial number (46%) of genetic counseling students are interested in performing research in their careers. Many (40%) would pursue a doctoral degree in genetic counseling if it was available. Students and directors from programs with a thesis requirement reported a significantly higher emphasis on career research preparation than those from programs without a thesis requirement. The results of this study indicate that future genetic counselors are interested in contributing to the research base that will advance the field. The study provides justification for strengthening research training and the development of a doctoral degree in genetic counseling.
Advisors/Committee Members: Steinberg Warren, Nancy.
Subjects: Health Sciences, General
Keywords: genetic counseling; research; doctoral degree
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4.
Bradshaw, Rachael J.
Training and Attitudes of Recent Graduates Regarding the Provision of Culturally Competent Genetic Counseling Services to Latinos.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2004, University of Cincinnati
► Genetic counselors’ lack of cultural competence is a major barrier to the…
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▼ Genetic counselors’ lack of cultural competence is a major barrier to the provision of genetic counseling services to Latinos. Pre-professional training is an essential time to teach cultural competence. This study aimed to measure two components of competence with Latino culture, cultural knowledge and comfort working with Latinos, in genetic counselors who graduated from a training program in the previous 39 months. One hundred twenty members of the National Society of Genetic Counselors completed a survey assessing cultural knowledge using factors previously identified as important in the genetic counseling literature. Cultural knowledge scores were directly correlated with Spanish language skills and amount of exposure to Latino clientele during training. Implications for further research and graduate education are discussed because all students will counsel increasing numbers of Latinos during their career.
Advisors/Committee Members: Walker, Martha.
Subjects: Health Sciences, General
Keywords: cultural competence; Latino culture; genetic counseling; psychosocial issues
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5.
BUCHHOLZ, JANDA LEIGH.
DONOR FERTILITY AFTER PARTICIPATION IN AN OOCYTE DONATION PROGRAM.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2002, University of Cincinnati
► BACKGROUND: Heightened awareness about the safety of fertility drugs has led to…
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▼ BACKGROUND: Heightened awareness about the safety of fertility drugs has led to concern about potential risks involved in oocyte donation. In light of the paucity of published studies addressing these concerns, this study aims to elucidate the fertility characteristics of oocyte donors following donation. METHODS: This retrospective questionnaire-based study describes the demographics, reproductive outcomes, and fertility of a cohort of oocyte donors. RESULTS: Donors were Caucasian, married, college-educated women with annual household incomes in the $30,000-$60,000 range. Respondent mean age was 32.4 (± 5.3) years. Thirty seven percent reported a pregnancy after oocyte donation. Among those who attempted pregnancy after oocyte donation, 53%, 77%, and 100% were pregnant within 3, 6, and 12 months respectively. Mean conception time was 3.8 (± 3.3) months. CONCLUSIONS: Women who attempted pregnancy after oocyte donation did not experience delays in conception time. Due to the small sample size and since waiting time to pregnancy is a rough measure of fertility, the conclusions that can be drawn from these results are somewhat limited. Nevertheless, in the absence of large-scale prospective studies, these results may help provide concerned women with reassuring information regarding the risks of oocyte donation on their future fertility.
Advisors/Committee Members: West, Elizabeth B.
Keywords: OOCYTE donation; fertility; demographic; time to pregnancy
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6.
Czape, Kayla.
Parent preferences regarding educational material and genetic counseling for hearing loss genetic testing.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2010, University of Cincinnati
► Despite the advances in genetic testing for hearing loss in recent years,…
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▼ Despite the advances in genetic testing for hearing loss in recent years, testing for genetic causes is not comprehensive and negative genetic test results leave families with uncertainty regarding etiology, progression, associated medical conditions, and recurrence risk. From a genetic counseling standpoint, this gap in patient care should be assessed in order to provide the patient population with adequate information through educational materials and/or genetic counseling. The goal of the current study is to develop a comprehensive review of the services and materials that are provided, needed and preferred for parents whose children have had negative results from genetic testing for hearing loss. We hypothesize that this parent population would prefer some form of educational material or genetic counseling regarding the results of their child’s genetic test. The study was accomplished through qualitative phone interviews of 16 parents and quantitative surveys of 35 healthcare providers involved in hearing loss genetic testing at a large pediatric institution. Both data sets were described individually and compared qualitatively to describe parallels and differences. Our data reveals that parents have a desire for more information regarding the genetic test ordered for their child’s hearing loss and that modification of the current practices and provision of educational materials and genetic counseling for this population may improve their understanding and satisfaction with the hearing loss genetic testing process.
Advisors/Committee Members: Greinwald, John.
Subjects: Genetics
Keywords: genetic testing; hearing loss; genetic counseling; educational materials; client preferences; needs assessment
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7.
Daniels, Molly Serena.
PARENTS' KNOWLEDGE OF AND EXPERIENCES WITH THE OHIO NEWBORN SCREENING.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2002, University of Cincinnati
► Objective: Anticipating an increase in the number of false positive results with…
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▼ Objective: Anticipating an increase in the number of false positive results with the recent expansion of Ohio's mandated newborn screening program, this study was undertaken to determine parents' comprehension of the screening program, and to characterize parents' experiences when receiving either false positive or normal screening test results. Methods: Questionnaires were mailed to parents of 573 recipients of false positive results, and to parents of 1676 recipients of normal results, who were matched to false positive recipients by birth hospital. The questionnaire evaluated parents' knowledge of the screening program, parental stress associated with the screening process, and parental attitudes concerning the expansion of newborn screening. The questionnaire also included an open-ended question inviting parents to describe their experiences. Results: Response rate was 36%. 40%-60% of respondents incorrectly answered questions concerning the number and type of disorders for which Ohio screened. Parents receiving false positive results were significantly more likely (p<0.0001) than parents receiving normal results to report that their experience had been stressful. Recipients of false positive results for a recently instituted test were more likely to report stress than recipients of false positive results for an established test (p<0.001). One-quarter of respondents completed the open-ended question. These responses revealed multiple sources of stress, including parents' lack of information, the effort and time needed to complete the follow-up to positive results, and parents' perception that health care providers were not well informed regarding follow-up protocol. The majority of respondents were in favor of further expansion of newborn screening, regardless of whether they had received a false positive result. Conclusions: This study demonstrates the need to reduce parental stress associated with newborn screening, through improved parent education and communication between parents, primary care providers, and the state screening program.
Advisors/Committee Members: Leslie, Dr. Nancy.
Keywords: newborn screening; false positive results; parent comprehension; parents' experience
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8.
Doughty, Courtney R.
Retrospective Comparison of In-person versus Telephone Results Disclosure Counseling for BRCA1/2 Genetic Testing.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2008, University of Cincinnati
► Telephone disclosure of BRCA1/2 molecular genetic test results has been proposed as…
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▼ Telephone disclosure of BRCA1/2 molecular genetic test results has been proposed as a feasible alternative to traditional in-person results disclosure. The purpose of this study was to investigate the relationship between method of results disclosure with the patient outcome variables of knowledge, cancer worry, cancer risk perception, satisfaction, and cancer screening and prophylactic surgery behaviors. Study participants included 228 women who completed retrospective, self-administered, mailed surveys regarding their pre-test genetic counseling and results disclosure. No significant relationships were found between result disclosure method and the outcome variables investigated. A majority (90%) of individuals who received positive results by telephone returned for follow up visits. Factors which genetic counselors believed influenced their clinical decision to offer telephone disclosure were not shown to significantly impact the actual disclosure method. This study suggests that telephone results disclosure is clinically appropriate when counselors utilize their clinical judgment to determine which patients are appropriate candidates.
Advisors/Committee Members: Miller, Erin.
Subjects: Genetics
Keywords: genetic testing; telephone counseling; BRCA1; BRCA2; results disclosure; breast cancer; hereditary cancer
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9.
DRAKE, COURTNEY RUTH.
PERCEPTION OF DISEASE SEVERITY IN ADOLESCENTS DIAGNOSED WITH NEUROFIBROMATOSIS TYPE 1.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2002, University of Cincinnati
► Neurofibromatosis type 1 (NF1) is an autosomal dominant condition whose features include…
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▼ Neurofibromatosis type 1 (NF1) is an autosomal dominant condition whose features include a number of cutaneous, systemic, cognitive, and behavioral problems. The degree to which NF1 impacts an adolescent's daily life depends on the clinical features of the condition as well as on social and emotional influences, including their perception of the condition's severity. The purpose of this study was to examine the relationship between adolescent and parental perception of disease severity and the clinical severity of NF1. The Perception of Severity of Chronic Illness (PSCI) questionnaire was administered to 56 parents and 47 adolescents with NF1. Scores assessing the clinical severity of the adolescent's condition were assigned. Correlation coefficients were used to evaluate the relationship between the clinical features of NF1 and the families' perceptions. Parental perceptions were significantly correlated with the degree of systemic (r = 0.3116, p<0.05), cognitive (r = 0.4911, p<0.0001), and behavioral (r = 0.3341, p<0.05) impairment of the adolescent. Adolescent perception was correlated only with the degree of cognitive impairment (r = 0.5429, p<0.0001). Parental and adolescent perceptions were closely correlated (r = 0.6724, p<0.0001); however, adolescents consistently viewed the condition's impact as being less than the parents' perceptions. The results of this study have implications for the clinical care and counseling of families of adolescents with NF1.
Advisors/Committee Members: Schorry, Dr. Elizabeth.
Subjects: Biology, Genetics
Keywords: adolescents; neurofibromatosis, type 1; perception of severity; clinial severity
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10.
Edge, Kimberly L.
Advanced Paternal Age is a Lesser Known Genetic Risk with Potential Clinical Utility among a Group of Pediatricians.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2008, University of Cincinnati
► Advanced Paternal Age is a risk factor for many birth-developmental defects that…
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▼ Advanced Paternal Age is a risk factor for many birth-developmental defects that may be familiar to pediatricians; however, the knowledge possessed by pediatricians about advanced paternal age is unknown. An electronic survey assessed this knowledge level among pediatricians at Cincinnati Children’s Hospital Medical Center and asked whether they use advanced paternal age information in their clinical practice, why or why not, and in what context(s). Data from 130 respondents showed that most pediatricians had a low level of advanced paternal age knowledge and that most had not discussed paternal age risks in their clinical practice. Respondents expressed that advanced paternal age information has potential clinical utility and that associated risks should be discussed with patients by healthcare professionals who are educated about paternal age risks. This study demonstrated low levels of advanced paternal age knowledge but high perceived clinical utility of advanced paternal age information among a group of pediatricians.
Advisors/Committee Members: Benson, D. Woodrow.
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11.
Fick, Jennifer Lynn.
Patient Perspectives on Discussing Spirituality in Genetics Clinic: A Cross-sectional Analysis of Relevance and Comfort.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2006, University of Cincinnati
► This cross-sectional analysis of 43 prenatal patients and 103 pediatric patient caretakers,…
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▼ This cross-sectional analysis of 43 prenatal patients and 103 pediatric patient caretakers, describes patients’ perceived relevance and comfort level in discussing spirituality in genetics clinic. The 21-question study questionnaire, distributed at three midwestern genetics clinics over a 2-month period, obtained demographic and study information. 77.5% of patients had low perceived relevance of spirituality to genetics clinic. 22.5% with high-perceived relevance were significantly more likely to want providers to ask about spirituality during a visit and to want provider-patient beliefs to be similar. The best predictor of relevance and comfort was the patients’ self-proclamation of spiritual or non-spiritual. The spiritual group was significantly more comfortable discussing spirituality than the non-spiritual group. Spirituality is important to a subset of patients, which we suggest warrants the addition of one question to genetics intake forms (“Are you a spiritual person?”) that would give providers insight into patients’ spiritual needs prior to the visit.
Advisors/Committee Members: Warren, Dr. Nancy.
Subjects: Religion, General
Keywords: Spirituality; Genetics; Spirituality and Medicine; Patient Spirituality; Comfort; Religion
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12.
Fuller, Melissa Suzanne.
Primary Care Providers Believe Patient-Generated Family History Will Increase Ability to Assess Patient Risk.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2008, University of Cincinnati
► Family history is the best predictor of an individuals risk for common…
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▼ Family history is the best predictor of an individuals risk for common disease, yet it is inaccurately used in routine care. We hypothesized that patient-generated family history can improve a primary care provider's ability to asses risk without decreasing the number of patients seen. We mailed surveys to 301 providers and had a response rate of 24% (n=68). Seventy-three percent felt a computer-generated pedigree would improve their ability to assess risk as compared to their current methods. Seventy percent felt a computer-generated pedigree would either have no effect on or increase the number of patients seen in a day. Results suggest that providers feel optimistic about the potential benefits of patient-generated family history and are open to the implementation of patient-generated family history into routine care.
Advisors/Committee Members: Myers, Melanie.
Subjects: Genetics
Keywords: Family history; primary care providers; common disease; genetic disease; family history tool
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13.
Gill, Carrie F.
Direct-To-Consumer Advertising of Genetic Tests Expands the Role of Obstetrician-Gynecologists.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2004, University of Cincinnati
► This study characterized women’s responses to the direct-to-consumer advertising campaign for BRACAnalysisreg;…
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▼ This study characterized women’s responses to the direct-to-consumer advertising campaign for BRACAnalysisreg; hereditary breast and ovarian cancer susceptibility testing. The study assessed women’s intent to pursue testing before and after viewing the commercial and identified where women would seek out information. Pre- and post-test questionnaires assessed family history of breast cancer, breast cancer anxiety and risk perception, as well as the likelihood that women would pursue genetic testing for breast cancer risk. After viewing the advertisement, 73% of women reported interest in information about BRACAnalysis®. Overall, 76% of women reported that they would seek information on BRACAnalysisreg; testing from their OB/GYN and 37% would go to their family doctor. Being that OB/GYNs may soon be faced with an increase in questions about and requests for BRACAnalysisreg; testing, it is imperative that an educational plan be set in place to train OB/GYNs further about the genetics of breast and ovarian cancer.
Advisors/Committee Members: Gamm, Jennifer.
Keywords: Direct-to-consumer; BRACAnalysis; HBOC; Breast Cancer; BRCA; Genetic Tests; OB/GYN
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14.
Giovanni, Monica A.
A Family-Based Mapping Study of Autosomal Dominant Nonsyndromic Sensorineural Hearing Loss.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2007, University of Cincinnati
► Autosomal dominant nonsyndromic hearing loss (ADNSHL) is characterized by postlingual, progressive hearing…
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▼ Autosomal dominant nonsyndromic hearing loss (ADNSHL) is characterized by postlingual, progressive hearing impairment. This study sought to identify the gene responsible for hereditary nonsyndromic sensorineural hearing loss in a family with multiple generations affected by hearing impairment presenting in the second decade of life. The Affymetrix GeneChip was used to identify three linkage intervals on chromosomes 4, 10, and 16. The observed hearing loss in this family is not likely due to previously identified deafness-causing genes as no such genes have been reported in the identified intervals. Since preliminary candidate gene sequencing within the regions did not identify any pathogenic mutations, haplotype mapping was employed to further refine the intervals. The intervals on chromosomes 4 and 16 were excluded and the interval on chromosome 10 was narrowed to a 0.4Mb region at 10q22-q23. Future work will employ candidate gene analysis to identify the gene responsible for this family’s hearing impairment.
Advisors/Committee Members: Greinwald, Dr. John H.
Subjects: Biology, Genetics
Keywords: family-based linkage analysis; haplotype mapping; PCR based sequence analysis; autosomal dominant nonsyndromic hearing loss (ADNSHL)
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15.
Guszkowski, Andrea Jean.
Positive Patient Responses Regarding the Multidisciplinary Approach to Treatment of High Risk Pregnancies with Fetal Anomalies.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2007, University of Cincinnati
► Advances in prenatal screening and testing techniques are identifying fetal anomalies before…
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▼ Advances in prenatal screening and testing techniques are identifying fetal anomalies before delivery, therefore changing the course in pregnancy management. High-risk pregnancies with fetal anomalies may benefit from comprehensive evaluation from multiple disciplines promoting appropriate psychosocial assessments and patient decision-making. Therefore, fetal therapy centers aim for a multidisciplinary approach to treatment through the collaboration of different specialties. There is currently no evidence that patients prefer this evaluation strategy in fetal therapy settings. This qualitative study identifies patient impressions of the multidisciplinary approach, including aspects of individual and team meetings with physicians and staff, family support and follow-up management. A survey was mailed to previous patients, who received a full evaluation, from the Fetal Care Center of Cincinnati. The results indicate the majority of respondents endorse the multidisciplinary approach to treatment. Clear areas of recommendation for modification are follow-up management and emotional support from staff following the patient’s evaluation.
Advisors/Committee Members: Peach, Elizabeth.
Keywords: fetal diagnosis; fetal therapy; fetal surgery; multidisciplinary diagnosis
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16.
HARBISON, ANDREA E.
A CROSS-SECTIONAL STUDY ASSESSING THE EFFECTIVENESS OF A 5TH GRADE LITERACY BROCHURE ABOUT FAMILY HEALTH HISTORY.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2005, University of Cincinnati
► The US Surgeon General’s office encourages people to use their family health…
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▼ The US Surgeon General’s office encourages people to use their family health history as a screening tool for disease prevention and health promotion. When preparing health awareness materials, it is important to consider that 47% of the US population demonstrates limited literacy. We developed a brochure written at a 5th grade reading level about the importance of family history and then assessed peoples’ responses to this brochure as compared to a brochure with similar information written at an 11th grade reading level. Study participants (n=351), adults from 16 to 65 years old, were recruited from community settings. 179 participants (51%) had some high school education; 172 (49%) had some college education. Each participant read one brochure and completed a 10 question survey assessing participants’ attitudes about family health history and their intentions to act on the information they had read. Overall, participants who read the 5th grade literacy brochure were more likely to agree with each positively worded statement on the survey. A brochure written at a 5th grade level is an effective method of teaching adults of all education levels about the importance of family health history and is more effective than a higher literacy brochure, especially for individuals with less education.
Advisors/Committee Members: Warren, Dr. Nancy Steinberg.
Subjects: Health Sciences, Education
Keywords: Family health, adult literacy, low literacy, patient education materials, patient literacy, adult education, family history
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17.
HASHIMOTO, SAYAKA.
THE EFFECT OF MESSAGE FRAMING ON COLLEGE WOMENS' FOLIC ACID INTAKE ATTITUDES, INVENTIONS, AND BEHAVIOR.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2002, University of Cincinnati
► OBJECTIVE: The purpose of this study was to evaluate the immediate and…
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▼ OBJECTIVE: The purpose of this study was to evaluate the immediate and latent effect of message framing, or wording manipulation, on women's folic acid intake (FAI) knowledge, attitudes, and intentions. METHODS: 237 women enrolled in undergraduate psychology courses were randomly assigned to one of three conditions: gain-framed pamphlet, loss-framed pamphlet, or no pamphlet. In the initial experimental session, subjects' FAI behavior, knowledge, attitudes, intentions, and health risk perceptions were assessed using a questionnaire. One month later, the same questionnaire was e-mailed to all the subjects. Data from subjects who completed both phases of the study were analyzed. RESULTS: Message framing had no immediate effect on FAI knowledge, attitudes, intentions, or health risk perceptions (p>0.05). However, over the period of one month, loss-framed pamphlets were more effective in promoting FAI behavior compared to gain-framed and no pamphlet conditions (p=0.0007). Over one month, FAI intentions decreased in the gain-framed pamphlet condition (p=0.004). A pamphlet intervention, regardless of message framing, led to an immediate increase in FAI knowledge scores by 21-22% and improved attitudes. However, after a month, any gain in knowledge disappeared and attitude scores decreased. CONCLUSIONS: Loss-framed pamphlets are more effective in promoting FAI among college women. FAI promotion strategies that depend on gain-framed messages may not be optimal. Although a pamphlet intervention was able to improve FAI knowledge and attitudes, it had no effect on FAI intentions or behavior. This suggests that improving women's FAI knowledge and attitudes alone is not sufficient to change women's FAI intentions and behavior. In future research, the effect of message framing should be studied in different populations of women, e.g. women in different age range or women who have not attended college.
Advisors/Committee Members: Warren, Nancy S.
Keywords: Multivitamin intake; brochure; folate; pamphlet; educational intervention
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18.
Heald, Brandie Shantel.
Assessment of Test-Retest Reliability of the Reproductive Fitness Questionnaire by Survey of Mothers of Children with Juvenile Rheumatoid Arthritis and Best Friend Controls.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2006, University of Cincinnati
► This study assessed the test-retest reliability of the Reproductive Fitness Questionnaire (RFQ).…
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▼ This study assessed the test-retest reliability of the Reproductive Fitness Questionnaire (RFQ). The RFQ was mailed out to mothers of children with juvenile rheumatoid arthritis (JRA mothers) (n =89) and their best friends (n = 40) who previously completed the RFQ as part of another study. The questionnaires were compared for test-retest reliability in three areas: demographics, reproductive history, and family history. The demographics sections had 3/4 (75%) questions with satisfactory Cronbach’s alpha values and excellent kappa coefficients. The reproductive history section had 5/13 (38%) satisfactory/excellent questions, and the one family history question also had the same finding. A total of 11/19 (58%) questions had satisfactory/excellent test-retest reliability. Another 5.5/19 (29%) of questions had fair/good test-retest reliability. Therefore, a total of 87% of questions had at least fair/good test-retest reliability. The RFQ is a reliable tool for use in assessing reproductive fitness in other populations of JRA mothers.
Advisors/Committee Members: Glass, Dr. David N.
Subjects: Health Sciences, General
Keywords: test-retest reliability; mothers of children with juvenile rheumatoid arthritis; reproductive fitness
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19.
HELLMANN, ELIZABETH ANN.
KNOWLEDGE, HEALTH PERCEPTION AND INFORMATION SATISFACTION OF INDIVIDUALS WITH FACTOR V LEIDEN THROMBOPHILIA.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2002, University of Cincinnati
► Knowledge regarding the clinical implications of factor V Leiden, the most common…
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▼ Knowledge regarding the clinical implications of factor V Leiden, the most common genetic risk factor for venous thrombosis, is being acquired rapidly. Genetic testing for factor V Leiden is widely performed, yet counseling of patients is often difficult given that many clinical uncertainties remain. OBJECTIVE: This study examines the benefits and risks of genetic testing from a patient’s perspective, by examining patient knowledge about factor V Leiden, satisfaction with information received from health care providers, health perception, and opinions on genetic testing. DESIGN: Cross-sectional mailed survey of 196 patients who tested positive for the factor V Leiden gene mutation at an academic medical center between 1995 and 2001. PARTICIPANTS: 110 respondents. MAIN OUTCOME MEASURES: Demographic and clinical variables were assessed as determinants of knowledge, health perception and information satisfaction. RESULTS: Thirteen percent of patients do not recall being informed of test results. Sixty-four percent of patients state that they have not been given much information and 68% still have many questions. Only 47% feel that their health care providers understand factor V Leiden. Those individuals who are seen in by a hematologist or a specialized thrombosis clinic had significantly better knowledge and less information need. CONCLUSIONS: There is a need for more thorough informed consent procedures and better communication of test results. Some health care providers may lack the knowledge required to provide necessary information or facilitate informed decision making of patients who have factor V Leiden. Tools to educate patients and the medical community about factor V Leiden thrombophilia are needed. For those individuals who require more detailed information and support, specialized services may be of benefit.
Advisors/Committee Members: Leslie, Dr. Nancy.
Subjects: Engineering, Biomedical
Keywords: Thrombophilia; genetic testing; factor V Leiden; Education; Genetic Counseling
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20.
HEPLER, GINGER EILEEN.
HOW DO GENETIC COUNSELORS COLLECT OCCUPATIONAL HISTORY FOR USE IN RISK ASSESSMENT? A PILOT STUDY.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2000, University of Cincinnati
► By means of a mailed survey, this study assessed if genetic counselors…
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▼ By means of a mailed survey, this study assessed if genetic counselors collect occupational histories and how they use this information. 46.7% of participants indicated they always asked about client's current occupation, and 31.1% always asked about occupation of client's partner. While 57.9% asked about exposure to chemicals, few asked about other types of workplace hazards. 32% felt adequately trained to identify at-risk workers or health and cancer risks related to occupational exposures. 65% felt adequately trained to identify potential risks to a fetus, 44% felt adequately trained to identify infertility risks. A majority of respondents think genetic counselors should be trained to address occupational risks, and almost all participants indicated they would like to learn more about occupational hazards. With the increased research on workplace hazards, and better knowledge on gene-environment interactions, further research and education regarding occupational hazards will expand the scope of practice for genetic counselors.
Advisors/Committee Members: Warren, Dr. Nancy S.
Subjects: Health Sciences, General
Keywords: occupational exposures; genetic counselors; at-risk workers
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21.
HOFFMAN, JESSICA ANNE.
Reduced Quality of Life in Ehlers-Danlos Syndrome.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2008, University of Cincinnati
► Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders primarily…
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▼ Ehlers-Danlos syndromes (EDS) are a group of heritable connective tissue disorders primarily characterized by joint laxity and skin/soft tissue involvement. Individuals with EDS often report symptoms that significantly impact their lives but are overlooked by healthcare professionals. We conducted a cross sectional, survey-based study to examine health-related quality of life (HR-QOL) in EDS. The Medical Outcomes Study Short Form-36 (SF-36), Brief Pain Inventory (BPI), Pittsburgh Sleep Quality Index (PSQI), and a demographic survey were sent to 211 potential participants. Seventy-four completed surveys were received for a response rate of 35%. HR-QOL in the EDS population was significantly lower than the general population in virtually every domain. Vitality and physical functioning were the most significantly impacted domains, therefore we hypothesize that sleep/fatigue and pain are possible factors attributing to the reduced HR-QOL. Physicians and medical caregivers should use a team approach to effectively manage symptoms and improve HR-QOL in EDS patients.
Advisors/Committee Members: Tinkle, Brad.
Subjects: Genetics; Nursing
Keywords: Ehlers-Danlos syndrome; quality of life; SF-36
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22.
HOLMGREN, LISA MICHELLE.
THE IMPACT OF TEST OUTCOME CERTAINTY ON INTEREST IN GENETIC TESTING AMONG COLLEGE WOMEN.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2001, University of Cincinnati
► Predictive genetic tests for complex genetic diseases will lead to earlier diagnosis…
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▼ Predictive genetic tests for complex genetic diseases will lead to earlier diagnosis and improved prevention strategies. Personalized genetic risk information could therefore be of considerable benefit to young adults, even though genetic tests for complex diseases may only provide an estimation of disease risk rather than a precise diagnosis. This study assessed interest in genetic testing for a complex genetic disease, osteoporosis, and a single-gene disorder, hemochromatosis, in a group of college women. these diseases are both late-onset and preventable, but genetic tests for these conditions differ in their potential predictive abilities. We hypothesized that interest in a genetic test for hemochromatosis would be higher than interest in a theoretical test for osteoporosis susceptibility, given the higher predictive value of the hemochromatosis test, and that health behaviors would predict interest in testing. Participants were 181 undergraduate women recruited through introductory psychology classes at the University of Cincinnati. They were randomly assigned to receive a questionnaire containing either osteoporosis or hemochromatosis. After assessment of prior disease knowledge and health behaviors, the clinical features of each disease and the limits of a genetic test for each were described. Interest in genetic testing and disease specific health beliefs were then assessed. We compared interest in testing between the osteoporosis and hemochromatosis groups and analyzed variables for association with genetic test acceptance. Sixty-three percent of the total population was interested in genetic testing. There was a trend toward higher interest in the osteoporosis group (68%) than in the hemochromatosis (58%), though no significant difference was found. Significant predictors of test acceptance were disease familiarity, perceived disease severity, perceived risk, and perceived benefits of testing. Health behaviors were not related to interest in testing. These results suggest that college women may be receptive to genetic screening tests for preventable conditions. The impact of familiarity and certain health beliefs on test acceptance suggests that disease specific education would be an essential component of a genetic screening program.
Advisors/Committee Members: Wenstrup, Dr. Richard.
Subjects: Biology, Genetics
Keywords: CERTAINTY; INTEREST IN GENETIC TESTING; OSTEOPOROSIS; HEMOCHROMATOSIS
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23.
HOWELL, KERRY ANNE.
BREAST CANCER GENETICS EDUCATION FOR COLLEGE WOMEN: AN EVALUATION OF APPROACHES.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2001, University of Cincinnati
► Background: Breast cancer occurs at higher rates in women over the age…
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▼ Background: Breast cancer occurs at higher rates in women over the age of 55. Young-adult women, however, often do not realize they may also be at increased risk if they have a strong family history of breast cancers. Breast cancer genetics education, when incorporated into a general education program about breast cancer, would inform college-age women about hereditary breast cancer risks and options for risk reduction, to ultimately promote early detection or prevention of breast cancer. The aim of this study was to identify the optimal breast cancer genetics education method for college-age women. Methods: A convenience sample of 35 college women was recruited for focus group inclusion. Participants completed demographics and knowledge assessment questionnaires and viewed portions of four common breast cancer genetics education tools (CD-ROM, video, brochure, and lecture). During the focus groups, women discussed positive and negative aspects of each tool, ideas for disseminating the information, and the importance of the topic. Results: Focus group participants preferred tools which were convenient, self-paced, personal, and reflective of real situations. Aspects considered negative included the inability to ask questions or repeat information and situations not relevant to the life of a college female. Participants ranked the CD-ROM as most preferred, followed by the lecture, the brochure, and the video. They suggested combining tools and widely disseminating breast cancer information in conjunction with other health-related events. Participants expressed that global breast cancer education is important, but only women with a family history are likely to seek information about inherited breast cancer. Conclusion: In order to be received by college populations, breast cancer and genetics information must be delivered in a relevant way. An educational intervention based on these findings might be comprised of a general breast cancer lecture delivered by a young breast cancer survivor to illustrate relevance, followed by distribution of CD-ROMs and brochures to those most interested in information on breast cancer genetics. Future studies may lead to education tools created specifically for this population and educational efforts for women of similar age who do not attend college.
Advisors/Committee Members: Miller, Dr. Margaret.
Subjects: Biology, Genetics
Keywords: breast cancer; genetics; education; college
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24.
Hutchinson, Deanna K.
Assessment of Parental Satisfaction with Management of a Child’s Nonsyndromic Cleft Lip and/or Cleft Palate.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2005, University of Cincinnati
► The purpose of this study was to assess parental satisfaction of children…
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▼ The purpose of this study was to assess parental satisfaction of children with nonsyndromic cleft lip and/or cleft palate concerning feeding and surgery education. This retrospective cross-sectional study used an original questionnaire. Four multidisciplinary teams in Ohio and Kentucky distributed the questionnaire to sixty-one parents of children between the ages of 3 months and 4 years with nonsyndromic clefts. Fifty percent of parents were satisfied with their experiences at the birth hospital. Parents who received feeding instructions within 12 hours after their child’s birth felt more adequately prepared to feed their child than those who did not (p=0.0042). Over 90% of parents were satisfied with the care provided by their multidisciplinary team. Since half of the parents in this study were dissatisfied with their experiences at the birth hospital, birth hospitals need to ensure parents of children with orofacial clefts are educated about feeding techniques within 12 hours after birth.
Advisors/Committee Members: Saal, Howard M.
Keywords: multidisciplinary team; feeding management; cleft lip and palate surgery education
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25.
Jansen, Natalie R.
Comparison of Health-Related Quality of Life Between Heterozygous Women with Fabry Disease, the General Population, and Patients with Chronic Disease.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2005, University of Cincinnati
► Introduction: Fabry disease is an X-linked lysosomal storage disorder that affects both…
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▼ Introduction: Fabry disease is an X-linked lysosomal storage disorder that affects both men and women. Manifestations of the disease have been well-documented in hemizygous males. This study assessed the health-related quality of life (HRQoL) of obligate heterozygotes compared to a healthy control population, and to populations with multiple sclerosis (MS) and rheumatoid arthritis (RA). Methods: Study subjects were identified through lysosomal disease centers and the Fabry Support and Information Group (FSIG). Mean scores in each HRQoL subscales from the RAND-36 were compared between study subjects and previously published data from the Women’s Health Initiative (WHI). Comparisons were also made between studies on MS and RA. Results: Comparisons between the study population (202 women) and WHI indicated that all eight domains of HRQoL were significantly lower for women with Fabry disease with p<0.0001. HRQoL subscale scores were similar to the MS and RA populations. Conclusion: This study indicates that most women who carry mutations in the á-gal A gene will have clinically important symptoms, and emphasizes the importance of carefully evaluating women previously thought of as carriers for complications of Fabry disease. It will be critical to develop management protocols applicable to affected women.
Advisors/Committee Members: Hopkin, Dr. Robert J.
Keywords: Fabry disease; heterozygotes; health-related quality of life
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26.
Kanetzke, Erin Elizabeth.
Perceived Utility of Parent-Generated Family Health History as a Health Promotion Tool in Pediatric Practice.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2010, University of Cincinnati
► Introduction: FHH is a risk factor for chronic diseases. Pediatric practice is…
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▼ Introduction: FHH is a risk factor for chronic diseases. Pediatric practice is an optimal setting to incorporate FHH because risk factors may be identified and preventive measures implemented earlier in life, resulting in sustained and improved health outcomes. My Family Health Portrait (MFHP) is a web-based tool to help families collect and share their FHH with their health care provider. To our knowledge, providers’ views about the clinical utility of MFHP, or other parent-generated FHH tools, have not been assessed in a pediatric setting. Purpose: The purpose of this study was to describe how pediatric providers collect and use FHH in practice and to collect data about the perceived clinical utility of MFHP as a pediatric health promotion and disease prevention tool. Methods: A random sample of 148 pediatric providers was invited to participate in a semi-structured qualitative interview. All transcripts were reviewed and coded inductively by two coders, and inter-rater reliability was determined. Results: 21 providers completed study interviews. Participants unanimously collected FHH at new patient visits and when patients present with a symptom or complaint. Most providers believed that collecting FHH of chronic disease benefits the pediatric population. The most commonly cited barrier to FHH collection was the short visit time, and the most frequently suggested idea for improving FHH was collecting it prior to the office visit. Providers believed that the use of MFHP would improve FHH collection and allow for targeted education and preventive recommendations. Respondents also identified logistical and patient characteristic issues that must be resolved to integrate MFHP into clinical practice. Conclusions: Our research suggests that pediatric primary care presents many opportunities to collect and discuss FHH with patients, and that providers are optimistic about the clinical use of a parent-generated FHH collection tool. Future research should assess parent perspectives about the use of MFHP.
Advisors/Committee Members: Myers, Melanie.
Subjects: Public health
Keywords: family history; pediatrics; family history collection tool; public health; patient-generated family history; my family health portrait
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27.
Karlea, Audrey.
Cost Analysis of Mandibular Distraction Versus Tracheostomy for Infants with Pierre Robin Sequence and Upper Airway Obstruction: A One-Year Analysis.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2007, University of Cincinnati
► Infants with Pierre Robin Sequence (PRS) often experience moderate to severe upper…
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▼ Infants with Pierre Robin Sequence (PRS) often experience moderate to severe upper airway obstruction which can be treated with tracheostomy or mandibular. The purpose of this study was to compare the costs associated with two procedures. Total charges associated with each procedure were collected for 37 patients undergoing either mandibular distraction (n=12) or tracheostomy (n=25) at Cincinnati Children’s Hospital Medical Center over their first year of life. The median cost for mandibular distraction ($114,265) was significantly less than tracheostomy ($197,231) (p<0.001). The median cost over the first three months of life was not significantly different between treatment groups but tracheostomy was significantly more expensive than mandibular distraction for the remainder of the year (p<0.001). This study demonstrates a significantly higher average cost associated tracheostomy when compared to mandibular distraction indicating that the long-term care necessary for maintaining a tracheostomy makes it a significantly more expensive treatment for PRS.
Advisors/Committee Members: Hopkin, Dr. Robert.
Keywords: Pierre Robin Sequence; Mandibular Distraction; Tracheostomy; cost; infant
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28.
Kelsay, Jill.
Parents’ Perceptions of Receiving Results From Their Child’s Research Genetic Testing.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2005, University of Cincinnati
► Genetic testing is beneficial for families. However, the impact of receiving results…
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▼ Genetic testing is beneficial for families. However, the impact of receiving results from research-based genetic testing has not been well studied. We interviewed 20 parents whose children enrolled in genetic research with the possibility of receiving test results. Many parents who enrolled hoped that results would improve their child’s medical care. Most parents (n=13) received results; only two reported waiting over a year for results, and most parents (n=11) shared their results with family members. Parents reported advantages to testing, including learning more about their child’s diagnosis, and helping families in similar situations. Disadvantages included discomfort with blood draws and other issues shared with commercial testing. One family was troubled by the publication of personal information. Nearly all families would participate in similar testing again, regardless of whether they have received results. This study suggests that the option of receiving results from research testing should be more widely available.
Advisors/Committee Members: Hopkin, Robert.
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29.
KLATT, REGAN ELIZABETH MARIE.
HYPERACTIVITY AND INATTENTION IN CHILDREN WITH ISOLATED CLEFT LIP AND PALATE OR ISOLATED CLEFT PALATE.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2002, University of Cincinnati
► Objective: The purpose of this study was to examine levels of hyperactivity…
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▼ Objective: The purpose of this study was to examine levels of hyperactivity and inattention among children with isolated CLP or CP. Design: Children with CLP or CP were compared with unaffected siblings matched by age and gender and with normative data. Setting: An interdisciplinary craniofacial center located in an academic children’s hospital medical center. Participants: Fifty-one children with CLP or CP and 14 unaffected siblings aged 6-11 years. Children were excluded if they had an underlying genetic syndrome (except for Stickler syndrome), other congenital anomalies, developmental disabilities, or any other chronic medical disabilities. Interventions: Behavior assessment as rated by parents and teachers. Main Outcome Measures: Parent and teacher versions of the Child Behavior Checklist and Conners’ Rating Scale – Revised. Results: Raw scores were converted to z-scores for analyses. No significant differences on any parent or teacher subscales were found between the cleft and sibling groups using mixed model ANOVAs or between the cleft group and the normative mean (z=0) using 1-sample t-tests (p>.0025). Of those in the cleft group, 9.8% had a diagnosis of ADHD, 5.9% were using psychostimulant medications and 3.9% had repeated a grade. Conclusions: Children with isolated CLP or CP do not appear to be at increased risk for hyperactivity or inattention. Multicenter studies with clinical psychological evaluations are needed to determine if children with clefts are at increased risk for developing ADHD.
Advisors/Committee Members: Saal, Dr. Howard M.
Keywords: behavior; inattention; hyperactivity; cleft lip and palate; cleft palate
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30.
KREKEL, CHRISTINE ELIZABETH.
THE EFFECT OF CLINICAL PRACTICE LOCATION ON PHYSICIAN REFERRAL PRACTICES AND ATTITUDES FOR HEREDITARY BREAST CANCER.
Degree: MS, Allied Health Sciences : Genetic Counseling, 2002, University of Cincinnati
► PURPOSE: To compare physician referral practices and attitudes for hereditary breast cancer…
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▼ PURPOSE: To compare physician referral practices and attitudes for hereditary breast cancer between clinical practice locations: urban, suburban, and rural. METHODS: 214 physicians in Southwest Ohio's Tristate Region completed a self-administered questionnaire to assess referral practices and attitudes for hereditary breast cancer. Respondents were randomly sampled and grouped retrospectively into clinical practice location groups based on self-reported descriptor of practice location: suburban (39%), rural (32%), and urban (17%). Physician medical specialties included family practice, general practice, general surgery, internal medicine, obstetrics/gynecology, and oncology. RESULTS: Rural-practice physicians were less likely to have ever referred for hereditary breast cancer than suburban-practice physicians. Rural practice physicians were more likely to refer to an oncologist for this indication, whereas urban-practice physicians were more likely to refer to a genetic counselor. Rural practice physicians reported stronger barriers to referral, including distance to services and lack of awareness of services. Of all physicians who reported never referring, 61% reported having no need for such services, irrespective of clinical practice location. CONCLUSIONS: Women residing in rural areas are less likely to be referred for genetic services regarding hereditary breast cancer than their suburban counterparts. The reduced referral frequency among rural-practice physicians is partly due to increased barriers to referral. A significant proportion of physicians, regardless of practice location, may not recognize the benefit of genetic counseling and testing for hereditary breast cancer. Further studies are needed to investigate factors that influence physician referral for this indication, and that may vary by clinical practice location, including specialty, physician knowledge, and patient interest, and to assess the perceived value of genetic services among all physicians.
Advisors/Committee Members: Huelsman, Karen.
Keywords: hereditary breast cancer; referral; BRCA1; BRCA2; physician
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