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1.
BMC Med Educ ; 24(1): 124, 2024 Feb 07.
Artigo em Inglês | MEDLINE | ID: mdl-38326786

RESUMO

The PRIME-NP (Professional-Reporter-Interpreter-Manager-Educator/Evaluation-Nurse Practitioner) Model is adapted from the RIME (Reporter-Interpreter-Manager-Educator) model used in medical education to guide medical student and resident education. The Delphi technique was used to validate the PRIME-NP Model. After two rounds of review by a group of experts in NP curriculum, the model was determined to be valid based on expert consensus. Agreement percent increase from the first round to the second round in all categories. Interrater reliability (IRR) was assessed using interclass correlation after instrument validation was completed for each of the five levels of the PRIME-NP model. Overall, the IRR of the instrument was found to be acceptable with some notable exceptions. No variance was noted in professional behaviors at any level. Variance was increased in management and educator/evaluator behaviors in higher/later course levels. The PRIME-NP Model and PRIME-NP OSCE Rubric is a valid and reliable instrument to assess NP student progression in objective structured clinical examinations. This instrument has the potential for adaptation for use in other types of health sciences education and settings.


Assuntos
Profissionais de Enfermagem , Estudantes de Medicina , Humanos , Competência Clínica , Reprodutibilidade dos Testes , Currículo , Profissionais de Enfermagem/educação
2.
Public Health Nurs ; 41(2): 328-337, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38265246

RESUMO

OBJECTIVE: Screening for intimate partner violence in the home is often challenging due to the lack of privacy. The aim of this study was to compare two different screening methods (paper-pencil vs. tablet) for identifying intimate partner violence during perinatal home visits. DESIGN: Randomized control trial. SAMPLE: Pregnant women (N = 416) in perinatal home visiting programs were randomized to either paper-pencil or computer assisted, intimate partner violence screening. MEASUREMENTS: The Abuse Assessment Screen was used to screen for physical and sexual IPV and Women's Experiences with Battering for emotional intimate partner violence. RESULTS: No significant differences in prevalence were found between the screening methods. Intimate partner violence prevalence rates for the year before and/or during pregnancy using paper-pencil was 21.8% versus 24.5% using tablets (p = .507). There were significant differences in prevalence among the three race/ethnic groups (Caucasian, 36.9%; African American, 26.7%; Hispanics, 10.6%; p < .001) and significant differences in rates across three geographical areas: urban 16.0%; rural 27.6%, suburban women 32.3% (p < .001). CONCLUSIONS: This study provides evidence that both methods are useful for identifying intimate partner violence during perinatal home visits.


Assuntos
Violência por Parceiro Íntimo , Humanos , Feminino , Gravidez , Violência por Parceiro Íntimo/psicologia , Gestantes , Prevalência
3.
Artigo em Inglês | MEDLINE | ID: mdl-37956350

RESUMO

Rates of depression among the college-aged population are alarming, particularly in light of the coronavirus disease 2019 pandemic. It is important for providers who care for this population to have proper screening and referral processes to meet growing student needs. The purpose of this literature review was to examine current best practices for depression screening among college students. Comprehensive searches of PubMed, CINAHL, Embase, and Cochrane databases were completed with the assistance of a medical librarian. A total of 775 studies were screened, and 17 articles were included in the review. Evidence supports universal-based depression screenings; use of screening methods to include brief and online screenings; use of validated screening tools, including the Patient Health Questionnaire (PHQ) -2 and PHQ-9; and the importance of a proper referral process and adequate access to treatment measures. An appropriate depression screening and referral process within campus health centers is critical to meet the needs of college students. [Journal of Psychosocial Nursing and Mental Health Services, xx(x), xx-xx.].

4.
Nurs Educ Perspect ; 42(6): E74-E76, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33935241

RESUMO

ABSTRACT: Advanced practice registered nurse (APRN) programs are challenged to provide clinical learning experiences that prepare graduates with the full continuum of expected competencies. Preparing the APRN in academia, in terms of didactic and clinical application for novice entry, is often a vexing balance between board certification preparedness and the actualities of clinical practice. This article presents an innovative strategy to examine the perplexing reflective question often asked by educators: Does the current approach for simulation development prepare our APRN students sufficiently for entry into practice, and is it current to what is occurring in practice?


Assuntos
Prática Avançada de Enfermagem , Enfermeiras e Enfermeiros , Certificação , Docentes , Humanos , Aprendizagem
5.
Rev Panam Salud Publica ; 43: e17, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31093241

RESUMO

OBJECTIVE: To identify and summarize existing literature on the burden of HIV, sexually transmitted infections (STIs), and viral hepatitis (VH) in indigenous peoples and Afro-descendants in Latin America to provide a broad panorama of the quantitative data available and highlight problematic data gaps. METHODS: Published and grey literature were systematically reviewed to identify documents published in English, Spanish, or Portuguese with data collected between January 2000 and April 2016 on HIV, STI, and VH disease burden among indigenous peoples and Afro-descendants in 17 Latin American countries. RESULTS: Sixty-two documents from 12 countries were found. HIV prevalence was generally low (< 1%) but pockets of high prevalence (> 5%) were noted in some indigenous communities in Venezuela (Warao) (9.6%), Peru (Chayahuita) (7.5%), and Colombia (Wayuu females) (7.0%). High active syphilis prevalence (> 5%) was seen in some indigenous communities in Paraguay (11.6% and 9.7%) and Peru (Chayahuita) (6.3%). High endemicity (> 8%) of hepatitis B was found in some indigenous peoples in Mexico (Huichol) (9.4%) and Venezuela (Yanomami: 14.3%; Japreira: 29.5%) and among Afro-descendant quilombola populations in Brazil (Frechal: 12.5%; Furnas do Dionísio: 8.4% in 2008, 9.2% in 2003). CONCLUSIONS: The gaps in existing data on the burden of HIV, STIs, and VH in indigenous peoples and Afro-descendants in Latin America highlight the need to 1) improve national surveillance, by systematically collecting and analyzing ethnicity variables, and implementing integrated biobehavioral studies using robust methodologies and culturally sensitive strategies; 2) develop a region-wide response policy that considers the needs of indigenous peoples and Afro-descendants; and 3) implement an intercultural approach to health and service delivery to eliminate health access barriers and improve health outcomes for these populations.

6.
J Prim Care Community Health ; 15: 21501319241266506, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39133215

RESUMO

Hand-foot-and-mouth disease (HFMD), which is typically seen in the younger pediatric population, is uncommon in older adolescent and young adult populations. We report on an atypical outbreak of HFMD among college students at a mid-size university in the mid-Atlantic U.S. The outbreak included 138 qualifying cases of HFMD among students at the institution between August and November 2018. All tested samples were positive for CVA6, a less common cause of HFMD. Signs and symptoms and campus mitigation strategies are described. This case report aims to highlight an atypical outbreak of HFMD for clinicians who care for older adolescent and college-aged patients in primary care and community settings, and may see cases and/or outbreaks of HFMD in these populations.


Assuntos
Surtos de Doenças , Doença de Mão, Pé e Boca , Estudantes , Humanos , Doença de Mão, Pé e Boca/epidemiologia , Masculino , Feminino , Estudantes/estatística & dados numéricos , Universidades , Adulto Jovem , Adolescente , Adulto
7.
Adv Emerg Nurs J ; 46(3): 228-233, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-39094083

RESUMO

Hamate fractures are uncommon, but early and accurate diagnosis is critical to prevent negative outcomes. Hamate fractures may present initially to emergency departments, and diagnosis can be challenging. This case report of a common hamate fracture may aid in increasing emergency advanced practice nurse knowledge to identify these fractures in practice.


Assuntos
Fraturas Ósseas , Hamato , Humanos , Hamato/lesões , Fraturas Ósseas/diagnóstico , Serviço Hospitalar de Emergência , Masculino , Feminino
8.
J Acad Ophthalmol (2017) ; 15(2): e232-e236, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37795384

RESUMO

Purpose In this proof-of-concept pilot study, we aimed to increase nurse practitioner (NP) student knowledge of ophthalmology to prepare NPs for encounters in primary care settings. The Association of University Professors of Ophthalmology (AUPO) and the American Academy of Ophthalmology (AAO) endorse core knowledge that medical students should achieve. We assess the effectiveness of an innovative ophthalmologist-led curriculum based on these competencies tailored to issues NPs encounter in primary care. Methods Johns Hopkins University NP students enrolled in a pre-post-cohort study and educational intervention. The didactic program was developed according to AUPO and AAO core ophthalmology content for medical students and was taught in-person by an ophthalmologist. Pre-post-assessments evaluated students' perceived readiness to encounter ophthalmic issues in the clinic and baseline knowledge of core competencies of ophthalmology. Results A total of 42 NP students were included in the analysis. NP students improved in core knowledge and readiness to encounter ophthalmology issues. After the educational event, there was a statistically significant improvement in students' ratings of preparedness to obtain a focused history, exam, perform initial management and decide the urgency of a referral for acute painless vision loss ( p < 0.001), chronic vision loss ( p < 0.001), or a patient with a red/painful eye ( p < 0.001). Students showed a statistically significant improvement in postdidactic event core ophthalmology knowledge assessment scores ( p = 0.002). Conclusion Primary care NPs are increasingly the initial point of contact for patients with ophthalmic complaints, and thus, high-quality and thorough education regarding ophthalmology triage and referral for NPs is necessary. NP student comfort with and knowledge of ophthalmic complaints and triage may be improved by a brief educational intervention taught by an ophthalmologist early in the NP curriculum.

9.
J Am Assoc Nurse Pract ; 35(11): 691-698, 2023 Nov 01.
Artigo em Inglês | MEDLINE | ID: mdl-37602876

RESUMO

BACKGROUND: Although there is a substantial body of evidence regarding full practice authority's (FPA) effects on health care access and quality, very little research has examined how nurse practitioner (NP) licensure laws affect the status of NPs as clinicians, employees, and leaders in health care organizations. PURPOSE: This study examined whether states' implementation of FPA leads to higher pay, business ownership, assigned patient panel, and billing transparency for NPs' and whether NPs' gains from FPA increase over time in states where FPA has been in effect longer. METHODOLOGY: Data from a nationwide survey of licensed NPs ( N = 5,770) were used to compare NPs' employment conditions between FPA and non-FPA states. After balancing the FPA and non-FPA groups on demographic characteristics (e.g., urbanicity, education), adjusted mean differences in outcomes between the groups were estimated using weighted multivariable regression. RESULTS: Compared with NPs in non-FPA states, NPs in FPA states had higher mean earnings ( p < .05), were more likely to be practice owners or shareholders ( p < .01), and billed a greater percentage of their patient visits under their own National Provider Identifier ( p < .001). Having FPA in place for ≥10 years was associated with greater improvements in conditions of employment compared with having FPA <10 years. CONCLUSIONS: States' adoption of FPA for NPs is associated with improved conditions of employment among NPs. IMPLICATIONS: Untethering NPs from physicians establishes a cascade of modest gains in income and practice ownership that may indicate changes over time. Additional research is needed to determine the trajectory of these increases and if they are consistent.


Assuntos
Profissionais de Enfermagem , Médicos , Humanos , Estados Unidos , Inquéritos e Questionários , Emprego , Acessibilidade aos Serviços de Saúde
11.
Horm Behav ; 62(1): 58-66, 2012 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-22565216

RESUMO

In the medial preoptic area (MPO) and medial amygdala (MEA), estradiol (E(2)) aromatized from testosterone (T) may act via either estrogen receptor (ER) α or ERß to mediate mating in male rats. We tested the hypothesis that, in the MPO, ERα exclusively mediates sexual responses to E(2) by monitoring mating in four groups of castrated male rats administered dihydrotestosterone (DHT) subcutaneously and MPO implants delivering either: cholesterol, E(2), propyl pyrazole triol (PPT, ERα-agonist) or diarylpropionitrile (DPN, ER ß-agonist); a fifth group of intact males served as DPN toxicity control, receiving DPN MPO implants. In a follow-up study, either 1-methyl-4-phenyl pyridinium (MPP, ERα-antagonist) or blank MPO cannulae were implanted in castrated male rats receiving T subcutaneously, whereas intact MPP toxicity controls received MPP MEA implants. PPT or E(2) MPO implants maintained mating, but cholesterol or DPN MPO implants did not. Moreover, MPP MPO implants interfered with T reinstatement of mating suggesting that, in the MPO, ERα is necessary and sufficient for mating in androgen-maintained male rats and ERß is not sufficient. Because it is unknown which ER subtype(s) mediate sexual responses of the MEA to E(2), we examined mating following MEA implants of cholesterol, E(2), PPT or DPN in four groups of castrated male rats administered DHT subcutaneously. E(2) MEA implants maintained mounting but mating was significantly decreased in groups receiving PPT, DPN or cholesterol MEA implants suggesting that, unlike the MPO where ERα alone is essential, sexual responses of the MEA to E(2) require simultaneous interactions among multiple ER subtypes.


Assuntos
Tonsila do Cerebelo/fisiologia , Copulação/fisiologia , Receptor alfa de Estrogênio/fisiologia , Área Pré-Óptica/fisiologia , 1-Metil-4-fenilpiridínio , Tonsila do Cerebelo/efeitos dos fármacos , Androgênios/farmacologia , Animais , Colesterol/farmacologia , Copulação/efeitos dos fármacos , Di-Hidrotestosterona/farmacologia , Estradiol/farmacologia , Receptor alfa de Estrogênio/antagonistas & inibidores , Receptor beta de Estrogênio/antagonistas & inibidores , Receptor beta de Estrogênio/fisiologia , Feminino , Masculino , Nitrilas/farmacologia , Orquiectomia , Fenóis , Área Pré-Óptica/efeitos dos fármacos , Propionatos/farmacologia , Pirazóis/farmacologia , Ratos , Testosterona/farmacologia
12.
Nurs Open ; 9(5): 2342-2347, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35643961

RESUMO

AIMS: Chlamydia disproportionately affects individuals aged 15-24 years. A lack of chlamydia knowledge in this high-risk group likely contributes to decreased testing, but interventions to increase chlamydia knowledge in this population are not well-described in the literature. The purpose of this pilot project was to increase chlamydia knowledge in a sample of university students using nurse-developed web-based education. DESIGN: A pre- and post-test design was used to evaluate participant knowledge of chlamydia before and after completing a nurse-developed web-based education intervention designed for university students. METHODS: Forty-seven undergraduate students at one U.S. university participated. A focus group and scientific evidence informed the development of the web-based education. RESULTS: Participants had a significant increase in chlamydia knowledge after completing the online educational intervention (M = 8.0, SD = 0.000) compared to baseline (M = 6.5, SD = 1.5), t(33) = -5.821, p < .0001. Pilot results provide promising evidence that web-based nurse-developed education designed specifically for university students can increase chlamydia knowledge.


Assuntos
Chlamydia , Humanos , Internet , Projetos Piloto , Estudantes , Universidades
13.
J Allergy Clin Immunol Pract ; 7(4): 1157-1165.e6, 2019 04.
Artigo em Inglês | MEDLINE | ID: mdl-30098409

RESUMO

BACKGROUND: Mast cell diseases such as mastocytosis and mast cell activation syndrome involve abnormal proliferation and/or activation of these cells, leading to many clinically relevant symptoms. OBJECTIVE: To determine the characteristics and experiences of people known or suspected to have a mast cell disorder, The Mastocytosis Society, a US-based patient advocacy, research, and education organization, conducted a survey of patients. METHODS: This Web-based survey was publicized through specialty clinics and the society's newsletter, Web site, and online blogs. Both online and paper copies of the questionnaire were provided together with required statements of consent. RESULTS: The first set of results from this survey of 420 respondents has been previously published; the second set is presented in this article. These results include source(s) of diagnosis, clinical and laboratory tests reported, comorbidities, dietary practices, possible familial occurrence of mast cell disorders, and perceptions concerning mast cell disorder-related medical care needs in the United States. CONCLUSIONS: These patient survey results are provided to assist medical professionals in learning patients' perceptions of their experiences and to give patients with mast cell disorders and caregivers the opportunity to compare experiences with those of other affected individuals.


Assuntos
Dieta , Família , Mastocitose Cutânea/diagnóstico , Mastocitose Sistêmica/diagnóstico , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Alergistas , Anafilaxia/diagnóstico , Anafilaxia/terapia , Densidade Óssea , Conservadores da Densidade Óssea/uso terapêutico , Doenças Ósseas Metabólicas/tratamento farmacológico , Doenças Ósseas Metabólicas/epidemiologia , Cálcio/uso terapêutico , Criança , Pré-Escolar , Técnicas de Laboratório Clínico , Dermatologistas , Dietoterapia , Feminino , Testes Genéticos , Comportamentos Relacionados com a Saúde , Humanos , Lactente , Masculino , Mastocitose/diagnóstico , Mastocitose/epidemiologia , Mastocitose/terapia , Mastocitose Cutânea/epidemiologia , Mastocitose Cutânea/terapia , Mastocitose Sistêmica/epidemiologia , Mastocitose Sistêmica/terapia , Pessoa de Meia-Idade , Avaliação das Necessidades , Oncologistas , Osteoporose/tratamento farmacológico , Osteoporose/epidemiologia , Médicos de Atenção Primária , Inquéritos e Questionários , Estados Unidos , Vitamina D/uso terapêutico , Adulto Jovem
15.
J Altern Complement Med ; 14(2): 209-14, 2008 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-18315504

RESUMO

The care of patients with cancer not only involves dealing with its symptoms but also with complicated information and uncertainty; isolation; and fear of disease progression, disease recurrence, and death. Patients whose treatments require them to go without human contact can find a lack of touch to be an especially distressing factor. Massage therapy is often used to address these patients' need for human contact, and findings support the positive value of massage in cancer care. Several reviews of the scientific literature have attributed numerous positive effects to massage, including improvements in the quality of patients' relaxation, sleep, and immune system responses and in the relief of their fatigue, pain, anxiety, and nausea. On the basis of these reviews, some large cancer centers in the United States have started to integrate massage therapy into conventional settings. In this paper, we recognize the importance of touch, review findings regarding massage for cancer patients, describe the massage therapy program in one of these centers, and outline future challenges and implications for the effective integration of massage therapy in large and small cancer centers.


Assuntos
Massagem/métodos , Neoplasias/psicologia , Neoplasias/terapia , Qualidade de Vida , Toque Terapêutico/métodos , Ansiedade/terapia , Terapia Combinada , Depressão/terapia , Fadiga/terapia , Humanos , Náusea/terapia , Manejo da Dor , Cuidados Paliativos/métodos , Ensaios Clínicos Controlados Aleatórios como Assunto
17.
Eur J Cancer ; 42(3): 282-9, 2006 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-16376071

RESUMO

Many cancer patients use homeopathic approaches to increase their body's ability to fight cancer, improve their physical and emotional well-being, and alleviate their pain resulting from the disease or conventional treatments. Homeopathy is highly controversial as there is no plausible mode of action for these highly diluted remedies. The aim of this systematic review is to summarize and critically evaluate the efficacy of homeopathic remedies used as a sole or additional therapy in cancer care. We have searched the literature using the databases: Amed (from 1985); CINHAL (from 1982); EMBASE (from 1974); Medline (from 1951); and CAMbase (from 1998). Randomised and non-randomised controlled clinical trials including patients with cancer or past experience of cancer receiving single or combined homeopathic interventions were included. The methodological quality of the trials was assessed by Jadad score. Six studies met our inclusion criteria (five were randomised clinical trials and one was a non-randomised study); but the methodological quality was variable including some high standard studies. Our analysis of published literature on homeopathy found insufficient evidence to support clinical efficacy of homeopathic therapy in cancer care.


Assuntos
Homeopatia , Materia Medica/uso terapêutico , Neoplasias/terapia , Humanos , Ensaios Clínicos Controlados Aleatórios como Assunto , Resultado do Tratamento
18.
J Clin Oncol ; 20(8): 2127-33, 2002 Apr 15.
Artigo em Inglês | MEDLINE | ID: mdl-11956274

RESUMO

PURPOSE: To help with planning of a palliative care program, we reviewed the place of death of patients who were registered at our comprehensive cancer center and explored factors that predicted death in the hospital versus death at home. PATIENTS AND METHODS: A retrospective study was undertaken of local patients who were registered at the University of Texas M.D. Anderson Cancer Center and died during the 1997/1998 fiscal year. Data from the institutional tumor registry and from the State of Texas Bureau of Vital Statistics file were collected and analyzed. The main outcome measures were place of death, patient characteristics associated with place of death, and time from registration at the institution to death. RESULTS: Of 1,793 local patients, 251 (14%) died at M.D. Anderson Cancer Center; the remaining 86% died elsewhere. A total of 617 (34%) died at home, and 929 (52%) died in an acute hospital setting (including M.D. Anderson). A total of 1,040 (58%) died within 2 years of registration. The risk of hospital death versus home death increased for patients with cancer at a hematologic site (odds ratio [OR], 4.4; 95% confidence interval [CI], 2.8 to 6.8) and black ethnicity (OR, 1.9; 95% CI, 1.4 to 2.6) and decreased for patients who paid with Medicare (OR, 0.71; 95% CI, 0.57 to 0.90). CONCLUSION: Most patients died in an acute care hospital setting and within 2 years of registration. Our data show some predictors of hospital death for cancer patients and suggest that better hospital palliative care services and integrated palliative care systems that bridge community and acute hospitals are needed.


Assuntos
Institutos de Câncer , Mortalidade Hospitalar , Neoplasias/mortalidade , Neoplasias/terapia , Cuidados Paliativos , Assistência Terminal , Institutos de Câncer/estatística & dados numéricos , Continuidade da Assistência ao Paciente , Humanos , Modelos Logísticos , Análise Multivariada , Estudos Retrospectivos , Texas
19.
J Pain Symptom Manage ; 26(1): 637-43, 2003 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-12850646

RESUMO

The majority of cancer patients wish to die at home. Improved understanding of place of death and its relevant demographic predictors is important for the planning of palliative cancer care programs. The purpose of this study was to determine the place and predictors of site of death in cancer patients in a major U.S. metropolitan area. Death certificate data over two years were analyzed for Houston area residents with cancer who died in the Houston area. Information was obtained on factors that might be associated with the place where cancer patients die. For the purpose of this study, we looked at the following variables: primary site of cancer (hematological, breast, genitourinary, gastrointestinal, lung, and other); black, white, Hispanic, or Asian; age at death; marital status; sex; whether or not veteran of U.S. armed forces; levels of education; and area of residency within the Houston area. Univariate and multivariate analyses were performed. The majority of patients died in the hospital (51-52% both years), with the next most frequently occurring group dying at home (34-35% both years). Stepwise multivariate analysis resulted in a 6-variable logistic regression model. In this model, the odds of dying in hospital were increased by a factor of 2.7 if the patient had a hematological cancer (P<0.0001), a factor of 1.6 if the patient lived in Harris County (P<0.0001), and a factor of 1.5 if the patient was black (P<0.0001). Further characterization of factors associated with increased risk of hospital death rate is needed and systems should be developed to enable the majority of cancer patients to access palliative care services in the multiple settings in which they die.


Assuntos
Serviços de Assistência Domiciliar/estatística & dados numéricos , Hospitalização/estatística & dados numéricos , Neoplasias/mortalidade , Cuidados Paliativos/estatística & dados numéricos , Idoso , Atestado de Óbito , Feminino , Humanos , Modelos Logísticos , Masculino , Texas/epidemiologia , População Urbana/estatística & dados numéricos
20.
J Allergy Clin Immunol Pract ; 2(1): 70-6, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-24565772

RESUMO

BACKGROUND: Mast cell diseases include mastocytosis and mast cell activation syndromes, some of which have been shown to involve clonal defects in mast cells that result in abnormal cellular proliferation or activation. Numerous clinical studies of mastocytosis have been published, but no population-based comprehensive surveys of patients in the United States have been identified. Few mast cell disease specialty centers exist in the United States, and awareness of these mast cell disorders is limited among nonspecialists. Accordingly, information concerning the experiences of the overall estimated population of these patients has been lacking. OBJECTIVE: To identify the experiences and perceptions of patients with mastocytosis, mast cell activation syndromes, and related disorders, The Mastocytosis Society (TMS), a US based patient advocacy, research, and education organization, conducted a survey of its members and other people known or suspected to be part of this patient population. METHODS: A Web-based survey was publicized through clinics that treat these patients and through TMS's newsletter, Web site, and online blogs. Both online and paper copies of the questionnaire were provided, together with required statements of consent. RESULTS: The first results are presented for 420 patients. These results include demographics, diagnoses, symptoms, allergies, provoking factors of mast cell symptoms, and disease impact. CONCLUSION: Patients with mastocytosis and mast cell activation syndromes have provided clinical specialists, collaborators, and other patients with information to enable them to explore and deepen their understanding of the experiences and perceptions of people coping with these disorders.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Mastocitose/psicologia , Pacientes/psicologia , Percepção , Adaptação Psicológica , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Efeitos Psicossociais da Doença , Estudos Transversais , Feminino , Inquéritos Epidemiológicos , Humanos , Lactente , Internet , Masculino , Mastocitose/diagnóstico , Mastocitose/epidemiologia , Mastocitose/terapia , Pessoa de Meia-Idade , Prognóstico , Qualidade de Vida , Fatores de Risco , Sociedades Médicas , Inquéritos e Questionários , Adulto Jovem
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