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1.
Artigo em Inglês | MEDLINE | ID: mdl-38276801

RESUMO

So far, health care has been insufficiently organized in a gender-sensitive way, which makes the promotion of care that meets the needs of women and men equally emerge as a relevant public health problem. The aim of this narrative review was to outline the need for more gender-sensitive medical care in the context of pain, emergency care and vaccinations. In this narrative review, a selective search was performed in Pubmed, and the databases of the World Health Organization (WHO), the European Institute for Gender Equality and the German Federal Ministry of Health were searched. Study data indicate that there are differences between men and women with regard to the ability to bear pain. On the other hand, socially constructed role expectations in pain and the communication of these are also relevant. Studies indicate that women receive adequate pain medication less often than men with a comparable pain score. Furthermore, study results indicate that the female gender is associated with an increased risk of inadequate emergency care. In terms of vaccine provision, women are less likely than men to utilize or gain access to vaccination services, and there are gender-sensitive differences in vaccine efficacy and safety. Sensitization in teaching, research and care is needed to mitigate gender-specific health inequalities.


Assuntos
Instalações de Saúde , Dor , Masculino , Humanos , Feminino , Dor/tratamento farmacológico , Fatores Sexuais , Atenção à Saúde , Vacinação
2.
J Med Internet Res ; 24(2): e16128, 2022 02 08.
Artigo em Inglês | MEDLINE | ID: mdl-35133288

RESUMO

BACKGROUND: One in eight women is diagnosed with breast cancer in the course of their life. As systematic palliative treatment has only a limited effect on survival rates, the concept of health-related quality of life (HRQoL) was developed for measurement of patient-centered outcomes. Various studies have already demonstrated the reliability of paper-based patient-reported outcome (pPRO) and electronic patient-reported outcome (ePRO) surveys and that the 2 means of assessment are equally valid. OBJECTIVE: The aim of this study was to analyze the acceptance and evaluation of a tablet-based ePRO app for breast cancer patients and to examine its suitability, effort, and difficulty in the context of HRQoL and sociodemographic factors. METHODS: Overall, 106 women with adjuvant or advanced breast cancer were included in a 2-center study at 2 major university hospitals in Germany. Patients were asked to answer HRQoL and PRO questionnaires both on a tablet on-site using a specific eHealth assessment website and on paper. The suitability, effort, and difficulty of the app and self-reported technical skills were also assessed. Only the results of the electronically acquired data are presented here. The results of the reliability of the pPRO data have already been published elsewhere. RESULTS: Patients regarded the ePRO assessment as more suitable (80/106, 75.5%), less stressful (73/106, 68.9%), and less difficult (69/106, 65.1%) than pPRO. The majority of patients stated that ePRO assessment improves health care in hospitals (87/106, 82.1%). However, evaluation of ePROs depended on the level of education (P=.003) in the dimensions of effort and difficulty (regression analysis). The app was rated highly in all categories. HRQoL data and therapy setting did not show significant correlations with the app's evaluation parameters. CONCLUSIONS: The results indicate that ePRO surveys are feasible for measuring HRQoL in breast cancer patients and that those patients prefer ePRO assessment to pPRO assessment. It can also be seen that patients consider ePRO assessment to improve hospital health care. However, studies with larger numbers of patients are needed to develop apps that address the needs of patients with lower levels of education and technical skills.


Assuntos
Neoplasias da Mama , Aplicativos Móveis , Neoplasias da Mama/terapia , Eletrônica , Feminino , Humanos , Medidas de Resultados Relatados pelo Paciente , Estudos Prospectivos , Qualidade de Vida , Reprodutibilidade dos Testes
3.
Front Neurosci ; 15: 742576, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34557072

RESUMO

Daily, we face a plenty of negative information that can profoundly affect our perception and behavior. During devastating events such as the current COVID-19 pandemic, negative messages may hinder reasoning at individual level and social decisions in the society at large. These effects vary across genders in neurotypical populations (being more evident in women) and may be even more pronounced in individuals with neuropsychiatric disorders such as depression. Here, we examine how negative information impacts reasoning on a social perception task in females with breast cancer, a life-threatening disease. Two groups of patients and two groups of matched controls (N TO TAL = 80; median age, 50 years) accomplished a psychometrically standardized social cognition and reasoning task receiving either the standard instruction solely or additional negative information. Performance substantially dropped in patients and matched controls who received negative information compared to those who did not. Moreover, patients with negative information scored much lower not only compared with controls but also with patients without negative information. We suggest the effects of negative information are mediated by the distributed brain networks involved in affective processing and emotional memory. The findings offer novel insights on the impact of negative information on social perception and decision making during life-threatening events, fostering better understanding of its neurobiological underpinnings.

4.
Geburtshilfe Frauenheilkd ; 80(10): 1008-1015, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-33012832

RESUMO

The academization of the midwifery profession poses great challenges for Germany, especially due to the tight timelines: Corresponding courses of study can in principle be offered at both universities and technical colleges - although contrary to the recommendations of the Science Council. This means that there is a heterogeneity in midwifery qualifications and promotes a discussion regarding coherent study concepts. This process must be accompanied with great care so that midwifery courses of study are not designed to be of poorer quality than other courses of study due to a lack of financial resources. First concepts are already available and will be discussed and examined below.

5.
BMC Womens Health ; 20(1): 135, 2020 06 29.
Artigo em Inglês | MEDLINE | ID: mdl-32600323

RESUMO

BACKGROUND: The Mayer-Rokitansky-Küster-Hauser syndrome, MRKHS, is a rare (orphan) disease characterized by the aplasia or hypoplasia of the uterus and the vagina. In women's health research, little is known as to how much care provision for patients with MRKHS takes into account their socio-demographic together with their clinical characteristics. This work examines the patients' socio-demographic characteristics, highlighting issues of inappropriate and deficient provision of care. METHODS: The study was carried out as part of the larger TransCareO project and included a group of N=129 MRKHS patients who underwent surgery between 2008 and 2012. Using a specially developed questionnaire, we analyzed MRKHS patients' data found both in the clinical documentation of the Department for Women's Health, University Hospital of Tübingen and the patient surveys of the Center for Rare Genital Malformations (CRGM/ ZSGF). Patients who took part in interviews were compared with non-respondents. RESULTS: Patient respondents and non-respondents did not differ as to the parameters of interest. In most cases, primary amenorrhea was reported as an admission reason. In 24% of patients, a medical intervention (hymenal incision or hormone treatment) already occurred before admission to the Center in Tübingen and proper diagnosis of MRKHS. About one third received in advance inappropriate treatment. During the therapy, more than half of the patients were in a solid partnership. 10% of the family anamneses documented the occurrence of urogenital malformations. CONCLUSIONS: Care provision for MRKHS patients is largely characterized by delayed proper diagnosis and in part, by inappropriate treatment attempts; there are also indications of regional differences. Anamnestic clues such as an asymptomatic amenorrhea or renal abnormalities of unclear origin still fail to result early enough in referral to a center on the basis of suspected MRKHS diagnosis. Urogenital malformations in the family are more common in patients than in the general population. For patients, a wide range of burdens are associated with the diagnosis. Abnormalities compared to their female peers occur, for instance, in the partnership status: MRKHS patients have more rarely a partner.


Assuntos
Transtornos 46, XX do Desenvolvimento Sexual/diagnóstico , Anormalidades Congênitas/diagnóstico , Ductos Paramesonéfricos/anormalidades , Útero/anormalidades , Vagina/anormalidades , Adolescente , Adulto , Feminino , Pesquisa sobre Serviços de Saúde , Humanos , Pessoa de Meia-Idade , Doenças Raras , Fatores Socioeconômicos , Saúde da Mulher , Adulto Jovem
6.
Z Geburtshilfe Neonatol ; 224(3): 130-135, 2020 Jun.
Artigo em Alemão | MEDLINE | ID: mdl-32557433

RESUMO

The full academisation of midwifery training, which thus far has been given in technical colleges, is now beginning in Germany and poses a great challenge for both the German federal states and the universities. Against this background, the aim of this article is to identify possible risks arising from the full academisation of training and the revision of the Midwifery Act and to show possible solution strategies to promote the implementation of study programmes.


Assuntos
Educação de Pós-Graduação em Enfermagem , Tocologia/tendências , Enfermeiros Obstétricos/educação , Feminino , Alemanha , Humanos , Tocologia/educação , Gravidez
7.
Geburtshilfe Frauenheilkd ; 79(8): 854-862, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-31423020

RESUMO

Germany faces the challenge of enforcing the academization of midwifery training in the upcoming months in order to comply with Directive 2013/55/EU. This paper outlines the related developments and challenges. At the moment, midwifery training in Germany is still predominantly carried out in technical colleges. In 2019, less than 20% of midwifery training places were college-based. The current standard training is a dual training system which combines vocational training with academic-based courses, but this approach will no longer be feasible once the EU directive has been fully implemented. Although the existing draft legislation completely transfers midwifery training to institutions of higher education, various aspects of this concept have remained vague and do not take account of the laws on higher education in the individual federal states. Moreover, if midwifery training is to be provided by both universities and colleges, this will lead to quite different levels of academization within a relatively small professional group. The concept that universities offer primary qualifications comes closest to the required quality standards for professional, science-based, practical and evidence-based midwifery training.

8.
J Med Internet Res ; 21(1): e10004, 2019 01 22.
Artigo em Inglês | MEDLINE | ID: mdl-30668517

RESUMO

BACKGROUND: The most frequent malignant disease in women is breast cancer. In the metastatic setting, quality of life is the primary therapeutic goal, and systematic treatment has only a limited effect on survival rates; therefore, the concept of the health-related quality of life (HRQoL) and measurement of patient-reported outcomes (PROs) are gaining more and more importance in the therapy setting of diseases such as breast cancer. One of the frequently used questionnaires for measuring the HRQoL in patients with breast cancer is the Functional Assessment of Cancer Therapy-Breast (FACT-B). Currently, paper-based surveys still predominate, as only a few reliable and validated electronic-based questionnaires are available. ePRO tools for the FACT-B questionnaire with proven reliability are missing so far. OBJECTIVE: The aim of this study was to analyze the reliability of tablet-based measurement of FACT-B in the German language in adjuvant (curative) and metastatic breast cancer patients. METHODS: Paper- and tablet-based questionnaires were completed by a total of 106 female adjuvant and metastatic breast cancer patients. All patients were required to complete the electronically based (ePRO) and paper-based version of the FACT-B. A frequency analysis was performed to determine descriptive sociodemographic characteristics. Both dimensions of reliability (parallel forms reliability using Wilcoxon test and test of internal consistency using Spearman ρ) and agreement rates for single items, Kendall tau for each subscale, and total score were analyzed. RESULTS: High correlations were shown for both dimensions of reliability (parallel forms reliability and internal consistency) in the patients' response behavior between paper-based and electronically based questionnaires. Regarding the reliability test of parallel forms, no significant differences were found in 35 of 37 single items, while significant correlations in the test for consistency were found in all 37 single items, in all 5 sum individual item subscale scores, as well as in total FACT-B score. CONCLUSIONS: The ePRO version of the FACT-B questionnaire is reliable for patients with breast cancer in both adjuvant and metastatic settings, showing highly significant correlations with the paper-based version in almost all questions all subscales and the total score.


Assuntos
Neoplasias da Mama/terapia , Medidas de Resultados Relatados pelo Paciente , Psicometria/métodos , Qualidade de Vida/psicologia , Feminino , Humanos , Reprodutibilidade dos Testes , Inquéritos e Questionários
9.
Arch Gynecol Obstet ; 298(2): 363-372, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29931523

RESUMO

PURPOSE: Pregnancy-associated breast cancer (PABC) is considered the second most common malignancy affecting pregnancy. The limited knowledge as to long-term survival is nonuniform. This retrospective study aims to contribute by a follow-up of pregnancies of breast cancer patients treated at a single university centre with focus on maternal long-term survival in relation to time point of diagnosis (before, during, and after pregnancy). METHODS: Data of 25 patients were reviewed for the period between 2000 and 2009 in relation to their neonatal and maternal outcome parameters as well as their maternal breast cancer outcomes by assessing maternal mortality at annual intervals up to a maximum of 10 years follow-up. RESULTS: Median age at diagnosis was 33 years. Maternal survival rate of the total collective came to 76% after 5 years and to 68% after 10 years. The newborns were healthy, 22% of them presented with a 1'Apgar score 5-7. Preterm delivery occurred in 53%. PABC significantly affected maternal survival compared to the national breast cancer cohort at 5 years and barely significantly at 10 years, with highly significant (p < 0.003) to significant (p < 0.01) effects at 5 and 10 years, respectively, for PABC diagnosed during and after pregnancy. CONCLUSIONS: The present findings on survival rates suggest that maternal medical assessment at the beginning of and during further course of pregnancy should include a scrutinized thorough breast examination. Conveying/delivering special competences to monitor these high-risk pregnancies at the interface of oncological care should be considered an obligatory part of academic medical education, obstetrical training and interprofessional midwifery education.


Assuntos
Neoplasias da Mama/mortalidade , Complicações Neoplásicas na Gravidez/mortalidade , Adulto , Índice de Apgar , Peso ao Nascer , Neoplasias da Mama/complicações , Neoplasias da Mama/patologia , Feminino , Humanos , Recém-Nascido , Estudos Longitudinais , Gravidez , Complicações Neoplásicas na Gravidez/patologia , Resultado da Gravidez , Estudos Retrospectivos , Taxa de Sobrevida , Resultado do Tratamento
10.
Gesundheitswesen ; 80(11): 953-962, 2018 Nov.
Artigo em Alemão | MEDLINE | ID: mdl-29486499

RESUMO

AIMS: E-health-based technologies also play an increasing role in the collection of patient- reported outcomes (ePRO). However, it remains unclear how feasible and powerful e-health applications are in the collection of PRO. Therefore, it should be examined to what extent the requirements for the use of technology-based PRO instruments has already been explored in order to allow its broad use in the "e-health world". Specifically, the research focus is on practicability, capability and technical implementation of ePRO. The design of the basic legal requirements for the conduct of PRO interviews and how the challenges of ePRO have already been harmonized here need to be examined.Methods Literature study: selective literature research in Pubmed as well as in the databases of DIMDI, G-BA, FDA and EMA. RESULTS: Current scientific knowledge about hurdles, acceptance and usefulness in relation to sociodemografic factors, health status and technical skills as well as about technical implementation is low. The legal standards for ePRO are restricted only to the composition of the survey instrument and methodology quality criteria. There are no prerequisites for a broad use of ePRO, which is why therapeutic measures should not be based on them. CONCLUSION: The standards of the legislators must be specified and adapted to the requirements of ePRO. Because the design of the tool surface and the rate of usability can influence the response behavior of the patients, the focus should be on the reliability and validity of ePRO surveys in the context of their implementation in relation to the patients, disease, questionnaire and ePRO-specific variables, which determine the response behavior, in order not to endanger the meaningfulness of PRO surveys.


Assuntos
Nível de Saúde , Medidas de Resultados Relatados pelo Paciente , Telemedicina , Alemanha , Humanos , Reprodutibilidade dos Testes , Inquéritos e Questionários
11.
J Med Internet Res ; 19(9): e322, 2017 09 14.
Artigo em Inglês | MEDLINE | ID: mdl-28912116

RESUMO

BACKGROUND: Breast cancer represents the most common malignant disease in women worldwide. As currently systematic palliative treatment only has a limited effect on survival rates, the concept of health-related quality of life (HRQoL) is gaining more and more importance in the therapy setting of metastatic breast cancer. One of the major patient-reported outcomes (PROs) for measuring HRQoL in patients with breast cancer is provided by the European Organization for Research and Treatment of Cancer (EORTC). Currently, paper-based surveys still predominate, as only a few reliable and validated electronic-based questionnaires are available. Facing the possibilities associated with evolving digitalization in medicine, validation of electronic versions of well-established PRO is essential in order to contribute to comprehensive and holistic oncological care and to ensure high quality in cancer research. OBJECTIVE: The aim of this study was to analyze the reliability of a tablet-based measuring application for EORTC QLQ-C30 in German language in patients with adjuvant and (curative) metastatic breast cancer. METHODS: Paper- and tablet-based questionnaires were completed by a total of 106 female patients with adjuvant and metastatic breast cancer recruited as part of the e-PROCOM study. All patients were required to complete the electronic- (e-PRO) and paper-based versions of the HRQoL EORTC QLQ-C30 questionnaire. A frequency analysis was performed to determine descriptive sociodemographic characteristics. Both dimensions of reliability (parallel forms reliability [Wilcoxon test] and test of internal consistency [Spearman rho and agreement rates for single items, Pearson correlation and Kendall tau for each scale]) were analyzed. RESULTS: High correlations were shown for both dimensions of reliability (parallel forms reliability and internal consistency) in the patient's response behavior between paper- and electronic-based questionnaires. Regarding the test of parallel forms reliability, no significant differences were found in 27 of 30 single items and in 14 of 15 scales, whereas a statistically significant correlation in the test of consistency was found in all 30 single items and all 15 scales. CONCLUSIONS: The evaluated e-PRO version of the EORTC QLQ-C30 is reliable for patients with both adjuvant and metastatic breast cancer, showing a high correlation in almost all questions (and in many scales). Thus, we conclude that the validated paper-based PRO assessment and the e-PRO tool are equally valid. However, the reliability should also be analyzed in other prospective trials to ensure that usability is reliable in all patient groups. TRIAL REGISTRATION: ClinicalTrials.gov NCT03132506; https://clinicaltrials.gov/ct2/show/NCT03132506 (Archived by WebCite at http://www.webcitation.org/6tRcgQuou).


Assuntos
Neoplasias da Mama/epidemiologia , Qualidade de Vida/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias da Mama/psicologia , Feminino , Humanos , Pessoa de Meia-Idade , Estudos Prospectivos , Reprodutibilidade dos Testes , Inquéritos e Questionários
12.
JMIR Cancer ; 3(2): e11, 2017 Aug 07.
Artigo em Inglês | MEDLINE | ID: mdl-28784595

RESUMO

BACKGROUND: Patient-reported outcomes (PROs) play an increasingly important role as an adjunct to clinical outcome parameters in measuring health-related quality of life (HRQoL). In fact, PROs are already the accepted gold standard for collecting data about patients' subjective perception of their own state of health. Currently, paper-based surveys of PRO still predominate; however, knowledge regarding the feasibility of and barriers to electronic-based PRO (ePRO) acceptance remains limited. OBJECTIVE: The objective of this trial was to analyze the willingness, specific needs, and barriers of adjuvant breast cancer (aBC) and metastatic breast cancer (mBC) patients in nonexposed (no exposure to electronic assessment) and exposed (after exposure to electronic assessment decision, whether a tablet-based questionnaire is favored) settings before implementing digital ePRO assessment in relation to health status. We also investigated whether providing support can increase the patients' willingness to participate in such programs. METHODS: The nonexposed patients only answered a paper-based questionnaire, whereas the exposed patients filled out both paper- and tablet-based questionnaires. The assessment comprised socioeconomic variables, HRQoL, preexisting technical skills, general attitude toward electronic-based surveys, and potential barriers in relation to health status. Furthermore, nonexposed patients were asked about the existing need for technological support structures. In the course of data evaluation, we performed a frequency analysis as well as chi-square tests and Wilcoxon signed-rank tests. Subsequently, relative risks analysis, univariate categorical regression (CATREG), and mediation analyses (Hayes' bias-corrected bootstrap) were performed. RESULTS: A total of 202 female breast cancer patients completed the PRO assessment (nonexposed group: n=96 patients; exposed group: n=106 patients). Self-reported technical skills were higher in exposed patients (2.79 vs 2.33, P ≤.001). Significant differences were found in relation to willingness to use ePRO (92.3% in the exposed group vs 59% in the nonexposed group; P=.001). Multiple barriers were identified, and most of them showed statistically significant differences in favor of the exposed patients (ie, data security [13% in the exposed patients vs 30% in the nonexposed patients; P=.003] and no prior technology usage [5% in the exposed group vs 15% in the nonexposed group; P=.02]), whereas the differences in disease burden (somatic dimension: 4% in the exposed group vs 9% in the nonexposed group; P=.13) showed no significance. In nonexposed patients, requests for support services were identified, which could increase their ePRO willingness. CONCLUSIONS: Significant barriers in relation to HRQoL, cancer-related restrictions, and especially the setting of the survey were identified in this trial. Thus, it is necessary to address and eliminate these barriers to ensure data accuracy and reliability for future ePRO assessments. Exposure seems to be a potential option to increase willingness to use ePRO and to reduce barriers.

13.
BMC Med Educ ; 17(1): 75, 2017 May 02.
Artigo em Inglês | MEDLINE | ID: mdl-28464857

RESUMO

BACKGROUND: Communication skills are essential in a patient-centred health service and therefore in medical teaching. Although significant differences in communication behaviour of male and female students are known, gender differences in the performance of students are still under-reported. The aim of this study was to analyse gender differences in communication skills of medical students in the context of an OSCE exam (OSCE = Objective Structured Clinical Examination). METHODS: In a longitudinal trend study based on seven semester-cohorts, it was analysed if there are gender differences in medical students' communication skills. The students (self-perception) and standardized patients (SP) (external perception) were asked to rate the communication skills using uniform questionnaires. Statistical analysis was performed by using frequency analyses and t-tests in SPSS 21. RESULTS: Across all ratings in the self- and the external perception, there was a significant gender difference in favour of female students performing better in the dimensions of empathy, structure, verbal expression and non-verbal expression. The results of male students deteriorated across all dimensions in the external perception between 2011 and 2014. DISCUSSION & CONCLUSION: It is important to consider if gender-specific teaching should be developed, considering the reported differences between female and male students.


Assuntos
Comunicação , Avaliação Educacional , Competência Profissional , Estudantes de Medicina , Adulto , Feminino , Humanos , Estudos Longitudinais , Masculino , Fatores Sexuais , Adulto Jovem
14.
Geburtshilfe Frauenheilkd ; 77(4): 366-376, 2017 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-28553000

RESUMO

Introduction There has been very little medical research into pregnancies which occur in the context of prostitution, even though the associated health risks for mother and child, e.g. violence or maternal drug abuse, are well known. The aim of this study was to compile and summarize what is known (inter-)nationally about this topic and identify key points of support as part of a uniform standard of healthcare in pregnancy. Material and Methods A selective search of the literature was done in Pubmed and Livivo/Medpilot and in the databases NIH, Cochrane, DARE, NHSEED and HTA on the factors influencing preterm delivery. Results There are no systematic studies on pregnancy risks in the context of sexual services. But there is data available on specific risk factors, for example the increased risk of prematurity associated with sexual/physical violence (OR = 1.28-4.7). The Prostitute Protection Act provides only limited protection for affected women, and statutory maternity protection regulations also have little impact as they require a formal contract of employment which rarely exists even in the context of legal prostitution. Conclusion Approximately 400 000 women are currently working as prostitutes in the Federal Republic of Germany. The number of unreported cases is high. Nevertheless, there is little concrete data available on the probable health risks if these women become pregnant. The existing laws that should offer protection fall short of the mark. There is a need for more research into the future implementation of the Prostitute Protection Act which should focus on health counselling, health promotion and additional protective legislation. Low-threshold healthcare services offered in the context of prenatal care could be an opportunity to improve care.

15.
PLoS One ; 12(4): e0174031, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28426677

RESUMO

BACKGROUND: Access to highly specialized health care services and support to meet the patient's specific needs is critical for health outcome, especially during age-related transitions within the health care system such as with adolescents entering adult medicine. Being affected by an orphan disease complicates the situation in several important respects. Long distances to dedicated institutions and scarcity of knowledge, even among medical doctors, may present major obstacles for proper access to health care services and health chances. This study is part of the BMBF funded TransCareO project examining in a mixed-method design health care provisional deficits, preferences, and barriers in health care access as perceived by female adolescents affected by the Mayer-Rokitansky-Küster-Hauser syndrome (MRKHS), a rare (orphan) genital malformation. METHODS: Prior to a communicative validation workshop, critical elements of MRKHS related care and support (items) were identified in interviews with MRKHS patients. During the subsequent workshop, 87 persons involved in health care and support for MRKHS were asked to rate the items using a 7-point Likert scale (7, strongly agree; 1, strongly disagree) as to 1) the elements' potential importance (i.e., health care expected to be "best practice", or priority) and 2) the presently experienced care. A gap score between the two was computed highlighting fields of action. Items were arranged into ten separate questionnaires representing domains of care and support (e.g., online-portal, patient participation). Within each domain, several items addressed various aspects of "information" and "access". Here, we present the outcome of items' evaluation by patients (attended, NPAT = 35; respondents, NRESP = 19). RESULTS: Highest priority scores occurred for domains "Online-Portal", "Patient participation", and "Tailored informational offers", characterizing them as extremely important for the perception as best practice. Highest gap scores yielded domains "Tailored informational offers", reflecting perceived lack of disease-related information for affected persons, medical experts, and health insurance companies, "Online-Portal" (with limited information available on specialist clinics and specialized doctors), and regarding insufficient support offers (e.g., in school and occupational settings). Conversely, lowest gap scores were found with group offers for MRKHS patients ("Transition programs") and MRKHS self-help days ("Patient participation"), suggesting satisfaction or good solutions in place. DISCUSSION: The importance assigned to disease-related information indicates that informational deficits are perceived by patients as barriers, hindering proper access to health care, especially in an orphan disease. Access to health-related information plays a role for all persons seeking help and care. However, the overwhelmingly high scores attributed to these elements in the context of an orphan disease reveal that here improved information policies are crucial, demanding for institutionalized solutions supported by the health care system. IMPLICATIONS FOR PRACTICE: The disparity between experience of care and attribution as best practice detected describes areas of action in all domains involved, highlighting information related fields. New concepts and structures for health care in orphan diseases could draw upon these patient-oriented results a) regarding orphan-disease specific elements demanding institutionalized reimbursement, b) essential elements for center care and corresponding networks, and c) elements reflecting patients´ participation in the conception of centers for rare diseases.


Assuntos
Transtornos 46, XX do Desenvolvimento Sexual/terapia , Anormalidades Congênitas/terapia , Genitália Feminina/anormalidades , Acessibilidade aos Serviços de Saúde , Ductos Paramesonéfricos/anormalidades , Transtornos 46, XX do Desenvolvimento Sexual/psicologia , Adolescente , Anormalidades Congênitas/psicologia , Feminino , Humanos
16.
Orphanet J Rare Dis ; 11(1): 152, 2016 11 16.
Artigo em Inglês | MEDLINE | ID: mdl-27852280

RESUMO

INTRODUCTION: In health services research, there is a special emphasis on the transition from adolescence into adulthood. During this transition period, adolescents change from pediatric to adult medical care. This process must be carefully structured, particularly when special medical care is required. Challenges and difficulties become apparent particularly in the case of rare diseases. This is increasingly so when the rare disease affects the adolescence-specific development of patients, such as Mayer-Rokitansky-Küster-Hauser syndrome (MRKHS), also known as Müllerian agenesis. METHODS: A systematic literature review identified the care requirements of girls and young women with MRKHS, as well as studies of medical care during the adolescent transition period for various other diseases. This investigation was carried out in the years 2012 and 2013, and was updated in 2014/2015. In addition, the reference lists of the identified studies were reviewed. RESULTS: Nine publications on MRKHS and ten publications on the transition from adolescence to adulthood were included. Medical care requirements and measures were identified for the following areas: diagnosis during adolescence and organization of medical care, reactions to the diagnosis, functional infertility, psychological stress and threat to self-image, contact with others, and dealing with MRKHS coping strategies. DISCUSSION: There is still a great demand for research in the area of care during the transition period from adolescence into adulthood, particularly for rare diseases. The recommendations for treating MRKHS patients derived from the literature should be implemented and evaluated with regard to their effectiveness.


Assuntos
Transtornos 46, XX do Desenvolvimento Sexual/psicologia , Anormalidades Congênitas/psicologia , Ductos Paramesonéfricos/anormalidades , Transtornos 46, XX do Desenvolvimento Sexual/cirurgia , Adolescente , Anormalidades Congênitas/cirurgia , Feminino , Humanos , Ductos Paramesonéfricos/cirurgia , Autoimagem , Adulto Jovem
17.
Gesundheitswesen ; 78(2): 130, 2016 Feb.
Artigo em Alemão | MEDLINE | ID: mdl-27336094
18.
Arch Gynecol Obstet ; 291(2): 327-40, 2015 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-25135379

RESUMO

PURPOSE: Numerous changes in society, science and health care challenge gynaecology and obstetrics. These challenges include the maintenance of excellence in research, commercial potential and clinical innovation, as well as the maintenance of adequate human resources, new standards for patient orientation and individualised medicine. METHODS: Based on a SWOT analysis of the status quo, of local and national quality data, a search regarding national conceptions and of international best practice for women's health centres, the model of a Department of Women's Health was developed. RESULTS: The Department, consisting of a University Hospital and a Research Institute, should interlink clinical care and science. With the establishment of the department, a pool of expertise is achieved which encompasses gynaecology and obstetrics from basic care to the high-technology segments, as well as all the scientific areas relevant to the medical discipline and women's health, including health services research. Preservation and attraction of personnel resources are based on the department's excellence, on reliable perspectives and the flexibility of job profiles, which also result from the close connection between care and research and the expansion of perspectives on women's health. CONCLUSIONS: Methodological diversity and inter-professionalism build the appropriate base for the further development of research fields. At the same time, the Department creates space for the consolidation of the core areas and the integration of sub-disciplines (clinical and scientific) to maintain the unity of this discipline. Via the scientific monitoring of the implementation, suitable elements can be highlighted for transfer to other facilities.


Assuntos
Atenção à Saúde/tendências , Ginecologia/tendências , Obstetrícia/tendências , Saúde da Mulher , Feminino , Previsões , Hospitais Universitários/tendências , Humanos
19.
Biomed Res Int ; 2014: 913842, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-25544945

RESUMO

Deficits of care exist during the transitional period, when young people with ongoing needs of support to achieve their physical, social, and psychological potential are entering adulthood. This study aims to develop a patient oriented, structured provisional model to improve transitional care for adolescents with Mayer-Rokitansky-Kuester-Hauser-Syndrome as an example for orphan diseases, where problems of access and continuity are even more complex. The study is funded by the German Federal Ministry of Education and Research (BMBF-Funding Code 01GY1125). The target patient group are young females with this disorder, treated at the Centre for Rare Genital Malformations in Women (ZSGF), University Hospital of Tuebingen. The study comprises five phases: an appraisal of literature, assessment of patients (n = 25), parents', partners', and health and social care providers' (n = 24) needs and experienced deficits in care and support in a qualitative approach, construction of a provisional model via scenario technique, followed by communicative validation (including interested public, n = 100), preference finding, and identification of patient-oriented quality aims for follow-up. Quantitative data from questionnaires and chart review (as sociodemographic data, nonresponder analysis, and preference rating) are worked up for descriptive statistics. The results provide a platform for the development of future multidisciplinary transitional intervention programs in orphan diseases.


Assuntos
Transtornos 46, XX do Desenvolvimento Sexual/epidemiologia , Anormalidades Congênitas/epidemiologia , Serviços de Saúde , Ductos Paramesonéfricos/anormalidades , Doenças Raras/epidemiologia , Transtornos 46, XX do Desenvolvimento Sexual/psicologia , Adolescente , Adulto , Anormalidades Congênitas/psicologia , Feminino , Humanos , Transtornos Mentais/epidemiologia , Transtornos Mentais/psicologia , Doenças Raras/psicologia , Inquéritos e Questionários , Adulto Jovem
20.
PLoS One ; 9(12): e114802, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-25517903

RESUMO

Gender affects performance on a variety of cognitive tasks, and this impact may stem from socio-cultural factors such as gender stereotyping. Here we systematically manipulated gender stereotype messages on a social cognition task on which no initial gender gap has been documented. The outcome reveals: (i) Stereotyping affects both females and males, with a more pronounced impact on females. Yet an explicit negative message for males elicits a striking paradoxical deterioration in performance of females. (ii) Irrespective of gender and directness of message, valence of stereotype message affects performance: negative messages have stronger influence than positive ones. (iii) Directness of stereotype message differentially impacts performance of females and males: females tend to be stronger affected by implicit than explicit negative messages, whereas in males this relationship is opposite. The data are discussed in the light of neural networks underlying gender stereotyping. The findings provide novel insights into the sources of gender related fluctuations in cognition and behavior.


Assuntos
Identidade de Gênero , Estereotipagem , Adulto , Cognição , Feminino , Humanos , Masculino , Rede Nervosa/fisiologia , Comportamento Social , Adulto Jovem
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