Evaluation of a nurse-led haemophilia counselling service
National Centre for Hereditary Coagulation Disorders, St James Hospital, Dublin.British journal of nursing (Mark Allen Publishing) 01/2007; 21(14):864-6, 868-70. DOI: 10.12968/bjon.2012.21.14.864
Genetic counselling and testing for females with a family history of haemophilia has long been advocated. However, there is little research in regard to clients' satisfaction with the existing counselling models in haemophilia, and in particular with nurse-led clinics. The purpose of this study was to evaluate whether clients were satisfied with a nurse-led carrier testing clinic and counselling service. A retrospective quantitative study of clients' satisfaction and perceived knowledge was undertaken using an anonymous questionnaire. A sample of 42 women who had attended the clinic in the last 12 months was identified. The response rate for the study was 71% (n = 30).Two thirds of the respondents were 35 years of age or younger, 93% had a family history of haemophilia and 56% were diagnosed as carriers. Perceived understanding and knowledge increased significantly between the first and second appointments (p < 0.001). Overall, the study identified a high level of client satisfaction with the nurse-led carrier testing clinic and counselling service.
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ABSTRACT: Hemophilia involves a lifelong burden from the perspective of the patient and the entire healthcare system. Advances in genetic testing provide valuable information to hemophilia-affected families for family planning. The aim of this study was to analyze the cost-effectiveness of carrier and prenatal genetic testing in the health-economic framework in Taiwan. A questionnaire was developed to assess the attitudes towards genetic testing for hemophilia. We modeled clinical outcomes of the proposed testing scheme by using the decision tree method. Incremental cost-effectiveness analysis was conducted, based on data from the National Health Insurance (NHI) database and a questionnaire survey. From the NHI database, 1111 hemophilic patients were identified and required an average medical expenditure of approximately New Taiwan (NT) $2.1 million per patient-year in 2009. By using the decision tree model, we estimated that 26 potential carriers need to be tested to prevent one case of hemophilia. At a screening rate of 79%, carrier and prenatal genetic testing would cost NT $85.9 million, which would be offset by an incremental saving of NT $203 million per year by preventing 96 cases of hemophilia. Assuming that the life expectancy for hemophilic patients is 70 years, genetic testing could further save NT $14.2 billion. Higher screening rates would increase the savings for healthcare resources. Carrier and prenatal genetic testing for hemophilia is a cost-effective investment in healthcare allocation. A case management system should be integrated in the current practice to facilitate patient care (e.g., collecting family pedigrees and providing genetic counseling).Journal of the Formosan Medical Association 08/2013; 114(8). DOI:10.1016/j.jfma.2013.06.017 · 1.97 Impact Factor
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ABSTRACT: Behavioral symptoms are common in all types of dementia and often result in significant caregiver stress and illness, institutionalization of the patient, and reduced quality of life for the patient and caregiver. Health care practitioners often lack the expertise or time to adequately assess behavioral symptoms or counsel caregivers about interventions. Our goal was to implement a specialty clinic managed by advanced practice nurses to assess and manage behavioral symptoms associated with dementia. The clinic evaluations consisted of an assessment of the patient by the Nurse Practitioner during the time that the family caregiver(s) was interviewed by the Clinical Nurse Specialist and focused on an assessment of the cognitive and functional abilities of the patient, identification of triggers for the problematic behaviors, and assessment of caregiver coping. We evaluated 66 dyads since implementation in February 2010. The patients were primarily female, Caucasian, 74.3 years of age with Alzheimer’s disease. The majority of caregivers were spouses (n = 44) followed by adult children (n = 20) and then siblings (n = 2). Targeted interventions were developed and caregiver counseling, support, and education were an integral part of the consultation and included written information, video instruction, and internet resources. Evaluations indicated caregivers and referring providers found the appointment helpful in managing behavioral symptoms and caregiver stress.Dementia 09/2014; 13(5):686-696. DOI:10.1177/1471301213519895 · 0.91 Impact Factor
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ABSTRACT: In excess of 200 people with hemophilia (PWH) and their families have received genetic counseling (GC) at the Hemophilia Comprehensive Care Centre at Charlotte Maxeke Johannesburg Academic Hospital. However, very few of their at-risk female relatives have attended GC to discuss their reproductive risks and options, or their potential bleeding risks. Limited research has been conducted internationally on factors influencing uptake of GC and testing amongst female relatives of PWH. This prospective study aimed to explore the factors that influence the uptake of GC and testing by female relatives of PWH. An open-ended semi-structured interview schedule was developed. Participants included female relatives of PWH who at least had a family member who had received GC. Seventeen participants were interviewed; 7 who had GC previously and 10 who had not. All participants who had previously received GC found the service helpful and were mothers referred because their sons had hemophilia. Of those who had not had GC, possible deterrents included: being unaware of GC service, focus in clinic on PWH and not potential carriers, misunderstood risks related to hemophilia and carrier status, fear of finding out carrier status, and non-disclosure in families. Most participants were unaware of potential bleeding risks for carriers. The information will be used to provide a better service to female relatives of PWH with a goal being to set up a dedicated hemophilia carrier clinic.Journal of Genetic Counseling 04/2015; DOI:10.1007/s10897-015-9834-8 · 2.24 Impact Factor
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