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1.
Haemophilia ; 30(1): 169-179, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38044083

RESUMO

INTRODUCTION: Physical therapists (PTs) are essential providers within the Hemophilia Treatment Centers (HTCs) team caring for persons with inherited blood disorders (PWBD). OBJECTIVE: Little is known regarding PTs understanding and concordance of MASAC PT Recommendations (MASAC#238), educational resources used to maintain competency and support for a mentorship programme. METHODS: PTs at federally funded HTCs were eligible to participate in a descriptive non-validated study exploring: (i) demographics, (ii) educational background, (iii) experience in evaluation and treatment of PWBD, (iv) practice patterns indicative of concordance with MASAC#238 and (v) opinion regarding PT mentorship. RESULTS: Respondents experience caring for PWBD ranged 1-36 years, treating both adults and children. Although most acknowledged awareness of MASAC#238, dropout (14/44, 31.8%) was noted; 28/30 (93.3%) who continued were aware of the recommendations. Level of concordance with MASAC#238 varied (range 64.3%-96.2%) regarding: signs/symptoms, treatment of muscle/joint bleeding and pre/post synovectomy and knee replacement treatment. Many PTs identified patients as individual and unique, thus not all recommendations may apply. PTs utilised available educational programmes. No relationships were noted regarding years of practice, education and years caring for PWBD. All respondents favoured a mentorship programme citing benefits, but also outlined barriers. CONCLUSIONS: Provision of necessary financial support for optimal function of a full-time PT within the HTC can enhance standards of care for PWBD. Supporting educational opportunities may enhance concordance with current MASAC PT Recommendations. Respondents valued development of a structured, hands-on mentorship programme. MASAC#23 has recently been updated in May 2023 to MASAC#275.


Assuntos
Hemofilia A , Fisioterapeutas , Criança , Adulto , Humanos , Projetos Piloto , Hemofilia A/terapia , Escolaridade , Inquéritos e Questionários
2.
Expert Rev Hematol ; 16(12): 1107-1123, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-38099480

RESUMO

BACKGROUND: Objectives were to 1) assess COVID-19-associated medical and psychological challenges facing persons with inherited bleeding disorders (PIBD) and their parents/guardians (PG) in Germany, the US, and the UK; 2) describe similarities and differences among these countries; 3) identify needs and opportunities for intervention by patient advocacy organizations (PAGs). RESEARCH DESIGN & METHODS: A cross-sectional, international survey was conducted in three countries using validated psychometric instruments and investigator-developed items. RESULTS: Five hundred and four surveys were included. Significant differences between countries were found including experiences with medical care, specific thoughts, and concerns about COVID-19, anxiety, and other mental health measures, as well as resources used to cope with stress. Age, education, income, race, IBD diagnosis, PIBD vs. BD group, and gender had moderating effects on resources used. Communication with friends/relatives and use of PAG and HTCs as resources for information/coping decreased in all countries during the pandemic. CONCLUSIONS: There were similarities and differences between respondents across the country in the perceived impact of the pandemic, mental health scores, and strategies used to cope with stress.  Recommendations: strategies to increase PAG access for PIBD and their PG during pandemics and natural disasters, ongoing assessment and adaptation to provide supportive resources to specific patient subgroups.


Persons with inherited bleeding disorders (PIBD) and their parents faced many challenges during the COVID-19 pandemic. An online survey was conducted within three countries: Germany, the United States, and the United Kingdom to explore these challenges and address how patient advocacy organizations can better meet their needs. Areas explored included experiences with medical care, concerns, and thoughts expressed during the pandemic, and coping resources used before and during the pandemic. In addition, mental health issues were explored addressing anxiety, COVID-related fears, depression, and resilience. Differences were found regarding experiences with medical care, specific thoughts, and concerns about COVID-19, anxiety, and other mental health measures, as well as resources used to cope with stress. These results provide an opportunity for advocacy organizations for PIBD to develop appropriate assessment, adaptation, and education resources to help patients during pandemics and/or natural disasters in the future.


Assuntos
COVID-19 , Humanos , COVID-19/epidemiologia , Saúde Mental , Pandemias , Estudos Transversais , Comparação Transcultural , Pais
3.
Haemophilia ; 28(2): 343-350, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-35152533

RESUMO

INTRODUCTION: Practice patterns and utilization of physical therapists (PTs) affiliated with Hemophilia Treatment Centers (HTCs) in the United States (US) are not well known. AIMS: Describe utilization, role responsibilities and practice patterns of US HTC PTs. Identify practice patterns specifically focusing on assessment and treatment of pain. Recognize gaps in utilization and role responsibilities of PTs as part of the multidisciplinary team and suggest guidelines for PT involvement within the HTC. METHODS: Respondents were a subset of a convenience sample of healthcare providers who responded to a non-validated survey developed by a multi-disciplinary panel of haemophilia experts. RESULTS: A 33.0% response-rate (n = 59) representing all regions of US HTCs was achieved. Those working ≥10 hours per week were more likely to provide nutrition education (P = .026) and surgical options education (P < .001). Those who billed insurance for their services during comprehensive visits were more likely to provide education regarding surgical options (P = .046). The majority of PTs (95.0%) evaluated pain regardless of time spent in clinic and felt comfortable treating pain. Fifty-eight percent used a formal pain measurement tool and more likely to use a formal pain measurement tool if billing insurance (P = .004). Top five non-pharmacologic treatments recommended for pain management included splints/braces (84.8%), aquatic therapy (74.6%), orthotics (71.2%), surgical options (47.5%) and yoga (32.2%). CONCLUSIONS: This study demonstrated PT utilization across HTC centres varies widely. Gaps in care may be addressed through salary support, funded education, greater regional/national collaboration of PTs specializing in bleeding disorders and advocacy for insurance coverage for appropriate services.


Assuntos
Hemofilia A , Fisioterapeutas , Hemofilia A/tratamento farmacológico , Humanos , Manejo da Dor , Modalidades de Fisioterapia , Inquéritos e Questionários , Estados Unidos
4.
Pain Med ; 23(2): 269-279, 2022 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-34185087

RESUMO

OBJECTIVES: Pain is a known complication in persons with hemophilia (PWH) as a result of muscle and joint bleeding. Little is known regarding national Hemophilia Treatment Center (HTC) practice patterns related to pain management. The aim of this study was to: 1) Describe pain management practice patterns of HTC providers, 2) Identify gaps and areas of alignment with the CDC pain guidelines, and 3) Address educational opportunities for pain management. This survey is the first extensive description of multidisciplinary practice patterns of pain management for PWH. METHODS: This descriptive study involved physicians, nurse practitioners, nurses, physical therapists, and social workers from federally funded Hemophilia Treatment Centers (HTC) eligible to complete an online survey exploring pain management practice patterns within the CDC pain guidelines. RESULTS: Results of this survey shed light on areas of strength and cohesiveness between HTC providers, including the following: dedication to effective pain management, utilization of non-pharmacological pain options, trial of non-opioid medications first before opioids, maintaining follow-up with patients after opioid prescription initiation, recognizing and utilizing clinically important findings before prescribing opioids, and counseling their patients regarding potential risk factors. CONCLUSIONS: There remain opportunities to incorporate into clinical practice consistent use of tools such as formal screening questionnaires, opioid use agreements, written measurable goals, ongoing prescription monitoring, and written plans for discontinuation of opioid therapy. These results provide opportunities for improvement in education of HTC team members thus optimizing pain management in persons with bleeding disorders.


Assuntos
Transtornos Relacionados ao Uso de Opioides , Manejo da Dor , Analgésicos Opioides/uso terapêutico , Humanos , Transtornos Relacionados ao Uso de Opioides/tratamento farmacológico , Dor/tratamento farmacológico , Manejo da Dor/métodos , Padrões de Prática Médica , Inquéritos e Questionários
5.
Patient Prefer Adherence ; 13: 1577-1587, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31571840

RESUMO

PURPOSE: Depression, anxiety, pain, and treatment adherence have reciprocal effects not characterized extensively in hemophilia. This study explored the relationships between depression, anxiety, chronic pain, and treatment adherence in adults with hemophilia. PATIENTS AND METHODS: Adults with self-reported hemophilia A or B completed the cross-sectional IMPACT QoL II survey. Depression (9-item Patient Health Questionnaire [PHQ-9]), anxiety (7-item Generalized Anxiety Disorder scale [GAD-7]), chronic pain (Faces Pain Scale-Revised [FPS-R]), social support (Duke UNC Functional Social Support questionnaire), level of pain control, clotting factor treatment adherence (VERITAS-Pro or -PRN), and previous depression/anxiety were analyzed. RESULTS: Among 200 participants (male, 77.3%; female, 22.8%), 54% had PHQ-9 and 52% had GAD-7 scores indicating moderate to severe depression or anxiety without diagnosis of either disorder. Participants with PHQ-9 scores ≥10 (moderate to severe depression) were more likely to have lower treatment adherence than those with PHQ-9 scores <10 (P<0.05). Participants with PHQ-9 or GAD-7 scores ≥10 were more likely to report uncontrolled pain and less social support versus PHQ-9 or GAD-7 scores <10 (χ2 P<0.05). Significant correlations were found between PHQ-9 and GAD-7 (P<0.0001), PHQ-9 and FPS-R (P=0.0004), PHQ-9 and VERITAS (P=0.01), GAD-7 and FPS-R (P=0.02), and GAD-7 and VERITAS (P=0.001). CONCLUSION: Depression and anxiety are underdiagnosed in hemophilia. Depression is associated with anxiety, pain, and lower treatment adherence. While treatment providers play an important role in diagnosis, social workers may play a pivotal role in depression and anxiety screening. This study highlights the importance of regular screening and treatment for these disorders.

6.
Res Pract Thromb Haemost ; 3(1): 99-108, 2019 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-30656282

RESUMO

BACKGROUND: The need for a more integrated, multidisciplinary approach to care for individuals with bleeding or clotting disorders has been highlighted in recent years. Evidence-based education adapted to nurses' needs is essential for a successful evolution. However, limited data currently exist on the clinical challenges nurses face in this specialty area. OBJECTIVES: Identify barriers and challenges faced by specialty nurses, and determine possible causes, to develop appropriate educational interventions. METHODS: A mixed-methods study, combining qualitative (semi-structured interviews) and quantitative (online survey) data was conducted on the challenges experienced by hemostasis nurses in nine countries (Argentina, Australia, Canada, China, France, Germany, Spain, the UK, and the US), and deployed in five languages (English, French, German, Mandarin, and Spanish). Qualitative data were analyzed using thematic analysis. Quantitative data were analyzed using frequency tables, chi-squares and standard deviations. RESULTS: Participants (n = 234) included nurses (n = 212; n = 22 qualitative; n = 190 quantitative); and patients receiving care for bleeding or clotting conditions or their caretakers (n = 22 qualitative phase only). Through triangulated data analysis, six challenging areas emerged: (a) Understanding of von Willebrand disease (VWD); (b) Anticoagulant safety profile in specific patients; (c) Understanding the treatment of patients with inhibitors; (d) Patient risk assessments; (e) Individualization of care and communication with patients; and (f) Accessing and implementing relevant professional education. CONCLUSIONS: This needs assessment provides a comprehensive illustration of the current challenges faced by nurses in the field of bleeding and clotting disorders, and indicates where gaps in skills, knowledge or confidence would benefit from nurse-specific educational programming.

7.
Haemophilia ; 23(6): 852-860, 2017 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-28806860

RESUMO

INTRODUCTION: Recurrent bleeding and associated pain are critical components in the management of bleeding disorders, yet scant data describe perceptions of pain in this patient population. OBJECTIVE: This study assessed perceptions of pain and pain management in adolescents and young adults (AYAs) with haemophilia or von Willebrand disease (VWD) to determine agreement/disagreement between patients, caregivers and health care providers. METHODS: Using an online questionnaire, AYA patients (N=89), their caregivers (N=77), and providers (N=54) reported on pain perception, pain treatment and pain control. Acute and chronic pain was measured in patients via the Faces Pain Scale-Revised (FPS-R). Questionnaires queried about pharmacologic and non-pharmacologic pain management methods and how well providers and caregivers helped to manage pain. RESULTS: Poor agreement existed between patients and caregivers across all pain levels, perception of pain control and effectiveness of pain management. Specifically for chronic pain, poor agreement was noted between patients and caregivers (kappa=0.04; 29% agreement) and patients and providers (kappa=-0.07; 21.4% agreement). Among patients reporting acute or chronic pain, only 67% and 43%, respectively, utilized medication for their specific pain. Patients used more opioid medications than expected by their providers. On average, AYAs reported initial use of pain medications for chronic pain at 11.5 years. CONCLUSIONS: Ongoing research is needed in haemophilia and VWD pain management, and on the differences in pain perception between patients, caregivers and providers. As chronic pain often begins at an early age, optimal pain management should include acknowledging patient complaints, exploring pharmacologic and non-pharmacologic options, and optimizing prophylaxis.


Assuntos
Cuidadores/estatística & dados numéricos , Pessoal de Saúde/estatística & dados numéricos , Hemofilia A/fisiopatologia , Percepção da Dor , Pacientes/estatística & dados numéricos , Doenças de von Willebrand/fisiopatologia , Adolescente , Adulto , Analgésicos Opioides/uso terapêutico , Cuidadores/psicologia , Feminino , Pessoal de Saúde/psicologia , Hemofilia A/tratamento farmacológico , Hemofilia A/psicologia , Humanos , Masculino , Dor/fisiopatologia , Dor/psicologia , Manejo da Dor/métodos , Medição da Dor , Pacientes/psicologia , Qualidade de Vida , Inquéritos e Questionários , Adulto Jovem , Doenças de von Willebrand/tratamento farmacológico , Doenças de von Willebrand/psicologia
8.
Health Qual Life Outcomes ; 15(1): 67, 2017 Apr 07.
Artigo em Inglês | MEDLINE | ID: mdl-28388906

RESUMO

BACKGROUND: Health-related quality of life (HRQoL) in adolescents and young adults with bleeding disorders is under-researched. We aimed to describe factors related to HRQoL in adolescents and young adults with hemophilia A or B or von Willebrand disease. METHODS: A convenience sample of volunteers aged 13 to 25 years with hemophilia or von Willebrand disease completed a cross-sectional survey that assessed Physical (PCS) and Mental (MCS) Component Summary scores on the SF-36 questionnaire. Quantile regression models were used to assess factors associated with HRQoL. RESULTS: Of 108 respondents, 79, 7, and 14% had hemophilia A, hemophilia B, and von Willebrand disease, respectively. Most had severe disease (71%), had never developed an inhibitor (65%), and were treated prophylactically (68%). Half of patients were aged 13 to 17 years and most were white (80%) and non-Hispanic (89%). Chronic pain was reported as moderate to severe by 31% of respondents. Median PCS and MCS were 81.3 and 75.5, respectively. Quantile regression showed that the median PCS for women (61% with von Willebrand disease) was 13.1 (95% CI: 2.4, 23.8; p = 0.02) points lower than men. Ever developing an inhibitor (vs never) was associated with a 13.1-point (95% CI: 4.7, 21.5; p < 0.01) PCS reduction. MCS was 10.0 points (95% CI: 0.7, 19.3; p = 0.04) higher for prophylactic infusers versus those using on-demand treatment. Compared with patients with no to mild chronic pain, those with moderate to severe chronic pain had 25.5-point (95% CI: 17.2, 33.8; p < 0.001) and 10.0-point (95% CI: 0.8, 19.2; p = 0.03) reductions in median PCS and MCS, respectively. CONCLUSIONS: Efforts should be made to prevent and manage chronic pain, which was strongly related to physical and mental HRQoL, in adolescents and young adults with hemophilia and von Willebrand disease. Previous research suggests that better clotting factor adherence may be associated with less chronic pain.


Assuntos
Indicadores Básicos de Saúde , Hemofilia A/psicologia , Qualidade de Vida/psicologia , Índice de Gravidade de Doença , Adolescente , Estudos Transversais , Feminino , Hemofilia A/terapia , Humanos , Masculino , Reprodutibilidade dos Testes , Inquéritos e Questionários , Adulto Jovem
9.
J Racial Ethn Health Disparities ; 3(1): 11-20, 2016 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-26896101

RESUMO

BACKGROUND AND OBJECTIVE: We explored racial differences in adherence to recommended clotting factor treatment regimens, chronic pain, and quality of life (QoL) among adolescents and young adults (AYAs) diagnosed with moderate or severe hemophilia. METHODS: A convenience sample of hemophilia patients aged 13-25 years completed an online cross-sectional survey in 2012. Chronic pain was measured using the revised Faces Pain Scale (FPS-R) and dichotomized as high (FPS-R ≥ 4) or low (FPS-R < 4). QoL was measured with the SF-36. RESULTS: Of 80 AYA participants (79 male), most had severe disease (91 %) and hemophilia A (91 %). Most were white (76 %) and non-Hispanic (88 %). At the univariate level, compared to whites, non-whites were more likely to have produced an inhibitor against clotting factor treatment (74 vs 38 %, p < .01), less likely to have commercial health insurance (16 vs 63 %, p < .001), more likely to report high levels of chronic pain (FPS-R ≥ 4) (63 vs 26 %, p < .01), and had lower SF-36 physical composite summary (PCS) scores. Adjusted logistic and quantile regression modeling, respectively, revealed that non-whites were 5.31 (95 % CI 1.62, 17.4; p < .01) times more likely to report high chronic pain and had median PCS scores that were 26.0 (95 % CI 11.0, 40.9; p < .01) points lower than whites. CONCLUSIONS: Targeted efforts to prevent and manage chronic pain among non-white AYAs with moderate or severe hemophilia are necessary. After accounting for demographic and clinical differences, there were no racial differences in adherence to recommended clotting factor treatment regimens; however, non-whites were more than five times more likely to report high levels of chronic pain, which predicted worse overall physical QoL, bodily pain, physical and social functioning, and greater role limitations due to physical health.


Assuntos
Dor Crônica/etnologia , Disparidades nos Níveis de Saúde , Hemofilia A/etnologia , Qualidade de Vida , Grupos Raciais/estatística & dados numéricos , Índice de Gravidade de Doença , Adolescente , Adulto , Fatores de Coagulação Sanguínea/uso terapêutico , Estudos Transversais , Feminino , Hemofilia A/tratamento farmacológico , Hispânico ou Latino/estatística & dados numéricos , Humanos , Masculino , Adesão à Medicação/etnologia , Medição da Dor , População Branca/estatística & dados numéricos , Adulto Jovem
10.
Patient Prefer Adherence ; 9: 1549-60, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26604708

RESUMO

INTRODUCTION: Severe hemophilia and subsequent hemophilic arthropathy result in joint pain and impaired health-related quality of life (HRQoL). Assessment of HRQoL in persons with hemophilia (PWH), including underlying factors that drive HRQoL differences, is important in determining health care resource allocation and in making individualized clinical decisions. AIM: To examine potential associations between HRQoL, pain interference, and self-reported arthritis and age, employment, activity, bleed frequency, and hemophilia treatment center and health care professional utilization. METHODS: PWH (age ≥18 years) from ten countries completed a 5-point Likert scale on pain interference over the previous 4 weeks, the EQ-5D-3L scale (mobility, usual activities, self-care, pain/discomfort, anxiety/depression) including a health-related visual analog scale (0-100, coded as an 11-point categorical response). RESULTS: Pain interference (extreme/a lot) was higher in PWH aged >40 years (31%) compared to those aged 31-40 years (27%) or ≤30 years (21%). In an analysis of eight countries with home treatment, PWH who reported EQ-5D mobility issues were less likely to be employed (53% vs 79%, with no mobility issues). Median annual bleed frequency increased with worsening EQ-5D pain or discomfort. The percentage of PWH with inhibitors reporting visual analog scale scores of 80-90-100 was lower (20%) than those without inhibitors (34%). Median bleed frequency increased with pain. Globally, nurse and social worker involvement increased with disability and pain; physiotherapist utilization was moderate regardless of the extent of disability or pain. CONCLUSION: Increased disability and pain were associated with increased age, lower employment, higher reported bleed frequency, and lower HRQoL.

11.
Semin Thromb Hemost ; 40(7): 790-802, 2014 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-25144753

RESUMO

The introduction of new hemophilia management therapies, targeting extended half-lives through bioengineering, ushers in an era of potential promise and increasing complexity, more so for those with hemophilia B than hemophilia A. Questions arise for patients, caregivers, and hemophilia treatment center (HTC) staff about how to assess and incorporate novel therapies and how to determine whether new therapies offer a distinct advantage over established treatment routines. Nurses and other interdisciplinary HTC staff are well positioned to assess, educate, and support patients and families in navigating this rapidly changing landscape. To support these challenging efforts, this review offers a perspective on issues affecting therapeutic transitions and provides tools to foster ongoing adherence.


Assuntos
Hemofilia A/terapia , Hemofilia B/terapia , Hospitais Especializados/métodos , Hospitais Especializados/tendências , Humanos
12.
J Am Assoc Nurse Pract ; 25(7): 342-50, 2013 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-24170617

RESUMO

PURPOSE: Unexpected bleeding or hemorrhage related to the development of acquired factor VIII inhibitors is an emerging clinical challenge in patients. Symptoms can occur suddenly with bleeding and/or bruising that is excessive relative to the degree of injury or severity of a comorbid condition. Diagnosis is difficult, and bleeding can quickly become life threatening if not treated promptly. This review provides current information, using a patient case scenario, to improve awareness and recognition of patients presenting unexpectedly with excessive bleeding of unknown etiology. DATA SOURCES: To complete this review, a search of English-language publications was conducted using Medline and CINAHL databases (1966-2010). CONCLUSIONS: Although development of acquired factor VIII inhibitors is rare, its incidence is increasing in many different patient care settings. Improved awareness and recognition is needed to mitigate the significant patient morbidity and mortality that can occur without rapid and timely treatment by experienced hematology specialists. IMPLICATIONS FOR PRACTICE: Nurse practitioners, as front-line clinicians treating patients in various therapeutic areas, may be the first healthcare professionals who see patients with this disorder. Increased knowledge and awareness of this rare but potentially catastrophic cause of excessive bleeding can improve prompt treatment and optimize patient outcomes.


Assuntos
Fator VIII/antagonistas & inibidores , Hemofilia A/diagnóstico , Hemorragia/etiologia , Idoso , Doença Catastrófica , Hemofilia A/complicações , Hemofilia A/terapia , Hemorragia/terapia , Humanos , Masculino
13.
Blood Coagul Fibrinolysis ; 23(8): 775-7, 2012 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-23135383

RESUMO

Inherited dysfibrinogenemia is a rare disorder caused by mutations in the fibrinogen gene, described in approximately 400 families to date. We present the case of a 20-year-old woman at 7 weeks of pregnancy with a history of two first-trimester spontaneous abortions and a family history of thrombotic events. Her testing revealed evidence of dysfibrinogenemia, necessitating multidisciplinary management planning including Hematology, OB-GYN, Maternal-Fetal Medicine, Blood Bank Services and Anesthesia. Antenatal care included a combination of intravenous fibrinogen infusions to maintain fibrinogen levels above 100 mg/dl and anticoagulation with low molecular weight heparin. She had an uneventful full-term delivery and continued fibrinogen infusions and thromboprophylaxis for 6 weeks postpartum. The combination of fibrinogen infusions and anticoagulation maintained the balance between bleeding and clotting in our patient during pregnancy. We recommend a multidisciplinary team approach for the management of dysfibrinogenemia during pregnancy to provide successful pregnancy outcomes.


Assuntos
Afibrinogenemia/tratamento farmacológico , Anticoagulantes/uso terapêutico , Fibrinogênio/uso terapêutico , Hemorragia/prevenção & controle , Heparina de Baixo Peso Molecular/uso terapêutico , Complicações Hematológicas na Gravidez/prevenção & controle , Trombose/prevenção & controle , Afibrinogenemia/sangue , Afibrinogenemia/congênito , Afibrinogenemia/genética , Feminino , Fibrinogênios Anormais/genética , Humanos , Injeções Intravenosas , Nascido Vivo , Gravidez , Adulto Jovem
14.
J Am Acad Nurse Pract ; 24(4): 175-83, 2012 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-22486832

RESUMO

PURPOSE: To increase awareness of nurse practitioners (NPs) about the dangers of iron overload and to review common hematologic conditions where transfusions are essential, iron mechanism and transport within the body, effects of iron overload on the body, and treatment options available. Finally, the process for development of a protocol for monitoring such patients will be introduced. DATA SOURCES: Review of existing literature, myelodysplastic syndrome guidelines, sickle cell guidelines, thalassemia guidelines. CONCLUSIONS: Transfusions of packed red blood cells save lives. There are many hematologic conditions for which packed red blood cell transfusions are required as a result of bone marrow suppression. However, extended exposure to red blood cell transfusions places the patient at an additional risk of iron overload. Iron overload is a real concern for patients who become transfusion dependent, with increased risks of liver cirrhosis and cardiac arrhythmias. IMPLICATIONS FOR PRACTICE: NPs in all areas of practice can increase awareness of the dangers of transfusional iron overload, and become familiar with the treatment options available. Additionally, NPs can institute a monitoring program based on the protocol suggested here within their own practices to prevent poor outcomes for patients with transfusion-related iron overload.


Assuntos
Terapia por Quelação , Transfusão de Eritrócitos/efeitos adversos , Sobrecarga de Ferro/tratamento farmacológico , Ferro da Dieta/efeitos adversos , Humanos , Sobrecarga de Ferro/enfermagem , Sobrecarga de Ferro/prevenção & controle , Ferro da Dieta/administração & dosagem , Ferro da Dieta/metabolismo , Fatores de Risco
15.
Indian J Gastroenterol ; 27(4): 159-61, 2008.
Artigo em Inglês | MEDLINE | ID: mdl-18974467

RESUMO

The risk of venous thrombosis is well documented in patients with malignancies, those undergoing abdominal surgery, and those undergoing hepatic resection for malignancy. This study was undertaken to determine whether there was a difference in the risk of thrombosis between those undergoing resection for hepatic metastases and primary hepatic malignancies. We performed a retrospective chart review of patients undergoing initial surgical resection for hepatic malignancies, primarily to determine whether there was a difference in the incidence of venous thrombosis between those with primary and secondary malignancies. Ninety-nine patients underwent surgical resection for either primary or secondary hepatic malignancies from 2001 to 2006. Seven of these patients, all with secondary hepatic malignancy, developed venous thrombosis within 3 months of resection. This retrospective review reveals that a clinical presentation of venous thrombosis is significantly more common among patients undergoing hepatic resection for secondary malignancy than those undergoing resection for primary cancer of the liver. Special attention with regard to prophylaxis for thrombosis may be required in these patients.


Assuntos
Carcinoma Hepatocelular/cirurgia , Hepatectomia/efeitos adversos , Neoplasias Hepáticas/cirurgia , Trombose Venosa/cirurgia , Adulto , Idoso , Idoso de 80 Anos ou mais , Carcinoma Hepatocelular/complicações , Carcinoma Hepatocelular/epidemiologia , Carcinoma Hepatocelular/secundário , Fatores de Confusão Epidemiológicos , Feminino , Humanos , Incidência , Neoplasias Hepáticas/complicações , Neoplasias Hepáticas/epidemiologia , Neoplasias Hepáticas/secundário , Masculino , Prontuários Médicos , Pessoa de Meia-Idade , Metástase Neoplásica/terapia , Recidiva Local de Neoplasia/epidemiologia , Recidiva Local de Neoplasia/cirurgia , Estudos Retrospectivos , Risco , Trombose Venosa/epidemiologia , Trombose Venosa/etiologia
17.
Oncol Nurs Forum ; 33(5): 999-1006, 2006 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-16955127

RESUMO

PURPOSE/OBJECTIVES: To evaluate use of a CD-ROM titled Completing a Life among patients diagnosed with serious illnesses for comfort level with content and ease of computer use. DESIGN: A prospective pilot study collected a convenience sample of 50 people diagnosed with life-limiting illnesses during a six-month period. SETTING: The hematology/oncology department of a large healthcare system located in a metropolitan area in the midwestern United States. SAMPLE: Convenience sample of 50 patients diagnosed with life-limiting illnesses. Of the patients enrolled (age range = 38-93 years), 72% were female, 68% were Caucasian, 50% were diagnosed with breast cancer or nonsolid tumors, and 40% were newly diagnosed. METHODS: Subjects viewed the CD-ROM and completed pre- and post-intervention surveys. MAIN RESEARCH VARIABLES: Comfort level with educational media, comfort level of information viewed, and areas of CD-ROM viewed compared to age and stage of illness. FINDINGS: Ninety percent of patients reported that they were somewhat or very comfortable with the CD-ROM as a learning tool, and ease of use was rated at 98%. Patients' comfort level with the material increased from 76% to 90% after they viewed the CD-ROM. CONCLUSIONS: The pilot study suggests that the Completing a Life CD-ROM can be used with patients facing serious or life-limiting illnesses as an additional resource tool for information. IMPLICATIONS FOR NURSING: Nurses typically provide the bulk of educational material for their patients. With limited resources available regarding management of life-limiting illnesses, this resource may provide an excellent addition to resources currently available.


Assuntos
CD-ROM , Neoplasias/enfermagem , Educação de Pacientes como Assunto , Assistência Terminal , Adaptação Psicológica , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Estudos Prospectivos , Interface Usuário-Computador
19.
J Am Acad Nurse Pract ; 16(8): 343-52, 2004 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-15455707

RESUMO

OBJECTIVE: Less is known about nurse practitioners' (NPs') effectiveness in acute care than about their effectiveness in outpatient settings. This study investigated care activities and clinical outcomes for hospitalized geriatric patients treated by NPs compared with those treated by intern and resident physicians. DATA SOURCES: A descriptive comparative research design involved random selection of 100 inpatient geriatric patients and a convenience sample of 17 professional providers who staffed three hospital units. A 1-month study period produced retrospective and prospective data for analysis. CONCLUSIONS: Self-reports concerning 10 primary activity categories indicated that NPs spent a higher percentage of time doing progress notes and care planning than did physicians (28% versus 15%, p = .011) and that physicians spent more time on literature reviews (5% versus 1%, p = .008). When prioritizing care activities, NPs ranked advance directive discussion higher than did physicians (2nd versus 7th, p = .036), a difference confirmed by medical record documentation. Physicians were more attentive to functional status (1st versus 3rd, p = .023), but medical record documentation showed NPs to be more attentive to physical and occupational therapy referrals (p = .001). Analysis of 13 independent organ areas revealed that NPs cared for more musculoskeletal (p = .036) and psychiatric (p = .005) problems. Physicians cared for more cardiac patients (p = .001). NPs' patients were older (p = .022) and sicker at admission (p < .001) and discharge (p < .001). Charges per length of stay were lower (p < .001) for the physician provider group, and patients in that group had shorter stays (p < .001). Readmission and mortality rates were similar. IMPLICATIONS FOR PRACTICE: NPs provide effective care to hospitalized geriatric patients, particularly to those who are older and sicker.


Assuntos
Corpo Clínico Hospitalar/normas , Profissionais de Enfermagem/normas , Papel do Profissional de Enfermagem , Relações Enfermeiro-Paciente , Recursos Humanos de Enfermagem Hospitalar/normas , Adulto , Idoso , Feminino , Enfermagem Geriátrica/normas , Humanos , Pacientes Internados/estatística & dados numéricos , Internato e Residência/normas , Masculino , Pessoa de Meia-Idade , Meio-Oeste dos Estados Unidos , Pesquisa em Avaliação de Enfermagem , Avaliação de Resultados em Cuidados de Saúde , Estudos Prospectivos , Estudos Retrospectivos , Estudos de Amostragem , Inquéritos e Questionários , Fatores de Tempo
20.
J Palliat Med ; 6(5): 841-50, 2003 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-14622471

RESUMO

There are relatively few comprehensive and empowering educational tools to assist people with terminal illness in addressing important end-of-life issues. Identifying this scarcity, a design team of health and multimedia professionals created an interactive, educational CD-ROM entitled Completing a Life. The primary goal of the project was to provide rich content in a style that was easy to access, understand, and use. The interactive medium of the CD-ROM enabled a large amount and wide array of material to be presented in manageable segments. These segments are connected by hyperlinks, providing self-guided control over the selection, pace, and order of material. The CD puts the learning experience in the hands of the learner. The format and design is also intended to generate a sense of empowerment, at a time and around issues often associated with a loss of control. Completing a Life covers a wide range of information for the user to choose from, spanning physical, emotional, family, and spiritual issues. A calm and comforting tone and welcoming environment enhances the users' ability to take in the information and make proactive decisions about his/her own well-being and care. The CD contains video narratives of individuals who tell their own stories of living with terminal illness. In addition to being a highly relevant means of conveying sensitive, health-related information, this collection of personal interviews may offer a form of "virtual support group" for the user. Finally, the interactive format allows stories and informational content to be linked in topic-specific ways that complement one another.


Assuntos
CD-ROM , Saúde da Família , Educação de Pacientes como Assunto , Doente Terminal , Humanos , Software , Interface Usuário-Computador
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