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2.
BMC Med Inform Decis Mak ; 21(1): 34, 2021 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-33522934

RESUMO

BACKGROUND AND OBJECTIVES: Internet-based technologies play an increasingly important role in the management and outcome of patients with chronic kidney disease (CKD). The healthcare system is currently flooded with digital innovations and internet-based technologies as a consequence of the coronavirus disease 2019 (COVID-19) pandemic. However, information about the attitude of German CKD-patients with access to online tools towards the use of remote, internet-based interactions such as video conferencing, email, electronic medical records and apps in general and for health issues in particular, are missing. DESIGN, SETTING, PARTICIPANTS, AND MEASUREMENTS: To address the use, habits and willingness of CKD patients in handling internet-based technologies we conducted a nationwide cross-sectional questionnaire survey in adults with CKD. RESULTS: We used 380 questionnaires from adult CKD patients (47.6% on dialysis, 43.7% transplanted and 8.7% CKD before renal replacement therapy) for analysis. Of these 18.9% denied using the internet at all (nonusers). Nonusers were significantly older (74.4 years, SD 11.4) than users (54.5 years, SD 14.5, p < 0.001), had a lower educational level than users (≥ 12 years: 6.9% versus 47.1%, p < 0.001) and were more often on dialysis. Within the group of internet users only a minority (2.6%) was using video conferencing with their physician, only 11.7% stated that they were using email to report symptoms and 26.6% were using the internet to schedule appointments. Slightly more than one-third of internet users (35.1%) are concerned that their personal medical data are not safe when submitted via the internet. CONCLUSIONS: Within our group of German CKD-patients we found that almost one out of five patients, especially older patients and patients with a lower educational level, did not use the internet at all. The majority of internet users reported in our survey that they have not used internet-based technologies within a medical context so far, but are willing to consider it. Therefore, it seems to be important to introduce and teach motivated CKD-patients the use and benefits of simple and safe internet-based health care technologies.


Assuntos
Preferência do Paciente , Insuficiência Renal Crônica , Telemedicina , Adolescente , Adulto , Idoso , Estudos Transversais , Feminino , Alemanha/epidemiologia , Pesquisas sobre Serviços de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Preferência do Paciente/estatística & dados numéricos , Insuficiência Renal Crônica/terapia , Telemedicina/estatística & dados numéricos , Adulto Jovem
3.
Eur J Endocrinol ; 184(2): 253-265, 2021 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-33513125

RESUMO

Background: Adrenal insufficiency (AI) is associated with increased cardiovascular morbidity and mortality and reduced quality of life (QoL). Optimum glucocorticoid (GC) dosing and timing are crucial in the treatment of AI, yet the natural circadian secretion of cortisol is difficult to mimic. The once-daily dual-release hydrocortisone (DR-HC) preparation (Plenadren®), offers a more physiological cortisol profile and may address unmet needs. Methods: An investigator-initiated, prospective, cross-over study in patients with AI. Following baseline assessment of cardiometabolic risk factors and QoL, patients switched from their usual hydrocortisone regimen to a once-daily dose equivalent of DR-HC and were reassessed after 12 weeks of treatment. Results: Fifty-one patients (21 PAI/30 SAI) completed the study. Mean age was 41.6 years (s.d. 13), and 58% (n = 30) were male. The median daily HC dose before study entry was 20 mg (IQR 15-20 mg). After 3 months on DR-HC, the mean SBP decreased by 5.7 mmHg, P = 0.0019 and DBP decreased by 4.5 mmHg, P = 0.0011. There was also a significant reduction in mean body weight (-1.23 kg, P = 0.006) and BMI (-0.3 kg/m2, P = 0.003). In a sub-analysis, there was a greater reduction in SBP observed in patients with SAI when compared to PAI post-DR-HC. Patients reported significant improvements in QoL using three validated QoL questionnaires, with a greater improvement in PAI. Conclusion: Dual-release hydrocortisone decreases BP, weight and BMI compared with conventional HC treatment, even at physiological GC replacement doses. Additionally, DR-HC confers significant improvements in QoL compared to immediate-release HC, particularly in patients with PAI, which is also reflected in the patient preference for DR-HC.


Assuntos
Insuficiência Adrenal/tratamento farmacológico , Sistema Cardiovascular/efeitos dos fármacos , Terapia de Reposição Hormonal/métodos , Hidrocortisona/administração & dosagem , Qualidade de Vida , Insuficiência Adrenal/epidemiologia , Insuficiência Adrenal/fisiopatologia , Insuficiência Adrenal/psicologia , Adulto , Peso Corporal/efeitos dos fármacos , Doenças Cardiovasculares/epidemiologia , Estudos Cross-Over , Preparações de Ação Retardada , Formas de Dosagem , Esquema de Medicação , Feminino , Humanos , Hidrocortisona/farmacocinética , Irlanda , Masculino , Pessoa de Meia-Idade , Preferência do Paciente/estatística & dados numéricos , Qualidade de Vida/psicologia
4.
Vaccine ; 39(3): 473-479, 2021 01 15.
Artigo em Inglês | MEDLINE | ID: mdl-33358265

RESUMO

In absence of a COVID-19 vaccine, testing, contact tracing and social restrictions are among the most powerful strategies adopted around the world to slow down the spread of the pandemic. Citizens of most countries are suffering major physical, psychological and economic distress. At this stage, a safe and effective COVID-19 vaccine is the most sustainable option to manage the current pandemic. However, vaccine hesitancy by even a small subset of the population can undermine the success of this strategy. The objective of this research is to investigate the vaccine characteristics that matter the most to Australian citizens and to explore the potential uptake of a COVID-19 vaccine in Australia. Through a stated preference experiment, preferences towards a COVID-19 vaccine of 2136 residents of the Australian states and territories were collected and analysed via a latent class model. Results show that preferences for mild adverse cases, mode of administration, location of administration, price and effectiveness are heterogeneous. Conversely, preferences for immediacy and severe reactions are homogeneous, with respondents preferring a shorter period until vaccine is available and lower instances of severe side effects. The expected uptake of the vaccine is estimated under three different scenarios, with the value of 86% obtained for an average scenario. By calculating individual preferences, the willingness to pay is estimated for immediacy, effectiveness, mild and severe side effects.


Assuntos
/administração & dosagem , Aceitação pelo Paciente de Cuidados de Saúde/psicologia , Preferência do Paciente/psicologia , Vacinação/psicologia , Adulto , Idoso , Austrália , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pandemias/prevenção & controle , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Preferência do Paciente/estatística & dados numéricos , Inquéritos e Questionários
5.
PLoS One ; 15(12): e0242007, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33370307

RESUMO

PURPOSE: Progressive Tinnitus Management (PTM) is an evidence-based interdisciplinary stepped-care approach to improving quality of life for patients with tinnitus. PTM was endorsed by Department of Veterans Affairs (VA) Audiology leadership in 2009. Factors affecting implementation of PTM are unknown. We conducted a study to: 1) estimate levels of PTM program implementation in VA Audiology and Mental Health clinics across the country; and 2) identify barriers and facilitators to PTM implementation based on the experiences of VA audiologists and mental health providers. METHOD: We conducted an anonymous, web-based survey targeting Audiology and Mental Health leaders at 144 major VA facilities. Quantitative analyses summarized respondents' facility characteristics and levels of program implementation (full PTM, partial PTM, or no PTM). Qualitative analyses identified themes in factors influencing the implementation of PTM across VA sites. RESULTS: Surveys from 87 audiologists and 66 mental health clinicians revealed that few facilities offered full PTM; the majority offered partial or no PTM. Inductive analysis of the open-ended survey responses identified seven factors influencing implementation of PTM: 1) available resources, 2) service collaboration, 3) prioritization, 4) Veterans' preferences and needs, 5) clinician training, 6) awareness of (evidence-based) options, and 7) perceptions of scope of practice. CONCLUSION: Results suggest wide variation in services provided, a need for greater engagement of mental health providers in tinnitus care, and an interest among both audiologists and mental health providers in receiving tinnitus-related training. Future research should address barriers to PTM implementation, including methods to: 1) improve understanding among mental health providers of their potential role in tinnitus management; 2) enhance coordination of tinnitus-related care between health care disciplines; and 3) collect empirical data on Veterans' need for and interest in PTM, including delivery by telehealth modalities.


Assuntos
Medicina Baseada em Evidências/organização & administração , Implementação de Plano de Saúde/organização & administração , Hospitais de Veteranos/organização & administração , Zumbido/terapia , Audiologia/organização & administração , Progressão da Doença , Medicina Baseada em Evidências/estatística & dados numéricos , Implementação de Plano de Saúde/estatística & dados numéricos , Hospitais de Veteranos/estatística & dados numéricos , Humanos , Comunicação Interdisciplinar , Serviços de Saúde Mental/organização & administração , Preferência do Paciente/psicologia , Preferência do Paciente/estatística & dados numéricos , Médicos/estatística & dados numéricos , Pesquisa Qualitativa , Qualidade de Vida , Inquéritos e Questionários/estatística & dados numéricos , Telemedicina/organização & administração , Telemedicina/estatística & dados numéricos , Zumbido/psicologia , Estados Unidos , United States Department of Veterans Affairs/organização & administração , Veteranos/psicologia
6.
PLoS One ; 15(9): e0239423, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32977327

RESUMO

OBJECTIVES: We examined how caregivers who had cared for a relative at end of life (EoL) wished to be cared for in the event that they experienced advanced dementia or physical disability in the future, and what factors influenced their preferences for EoL care. METHODS: In this mixed-methods study, 83 participants, recruited from multiple sources in Israel, were interviewed concerning socio-demographic factors, health status, past experience with EoL, preference for extension of life vs. quality of life (QoL), willingness to be dependent on others, and preferences for EoL care. RESULTS: In case of advanced dementia, 58% preferred euthanasia or suicide; around a third chose those for physical disability. Care by family members was the least desired form of care in the advanced dementia scenario, although more desirable than institutional care in the physical disability scenario. QoL was rated as the highest factor impacting preferences for EoL care. Men demonstrated a higher preference than women for extension of life over QoL. CONCLUSION: Our study points to the need for society to consider solutions to the request of participants to reject the type of EoL experienced by their relatives. Those solutions include investing in improving the quality of life at the end of life, and offering alternatives such as euthanasia, which a large proportion of our participants found ethically and medically appropriate within the current system of care in the event of severe physical disability, and more so in the event of advanced dementia.


Assuntos
Cuidadores/psicologia , Família , Preferência do Paciente/estatística & dados numéricos , Assistência Terminal/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade
7.
Ann R Coll Surg Engl ; 102(9): 737-743, 2020 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-32820638

RESUMO

INTRODUCTION: Open thyroidectomy is the most common approach to thyroid surgery. However, 'scarless' (in the neck) endoscopic thyroidectomy, consisting of endoscopic and robotic surgery, is progressively being adopted for its perceived cosmetic benefits. This study aims to determine the patient's preferred surgical approach and to identify the factors that influence their decision. MATERIALS AND METHODS: A pilot study consisting of 100 patients with a surgical thyroid disorder were prospectively recruited from a single tertiary centre. An interviewer-administered survey was conducted. Demographic, socioeconomic status, scar perception and an adapted body image scale were evaluated to identify factors that shaped the patient's perception of the surgical approach. RESULTS: The mean age of participants was 54.5 ± 13.0 years; 72% were women and 87% Chinese. Of the 100 patients, 75 patients considered scarless endoscopic thyroidectomy as their preferred surgical approach while 25 patients opted for open thyroid surgery. Improvement in scar perception score between scarless endoscopic thyroidectomy and open thyroid surgery is associated with an increased willingness to choose scarless endoscopic thyroidectomy. The mean body image scale score was 6.9 ± 2.8, indicating no statistical difference between the surgical approaches. On multivariate analysis, improvement in scar perception score (odds ratio 3.38, 95% confidence interval 1.11-10.29) and having surgeon recommendation (odds ratio 6.38, 95% confidence interval 1.80-22.63) were independently associated with interest in scarless endoscopic thyroidectomy. CONCLUSION: Patients interest in undergoing scarless endoscopic thyroidectomy is driven by improved scar perception and surgeon's recommendation compared with open thyroid surgery.


Assuntos
Cicatriz/etiologia , Endoscopia/efeitos adversos , Preferência do Paciente/estatística & dados numéricos , Tireoidectomia/efeitos adversos , Atitude Frente a Saúde , Cicatriz/prevenção & controle , Cicatriz/psicologia , Estudos Transversais , Endoscopia/métodos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Preferência do Paciente/psicologia , Projetos Piloto , Estudos Prospectivos , Inquéritos e Questionários , Doenças da Glândula Tireoide/cirurgia , Tireoidectomia/métodos
8.
PLoS One ; 15(7): e0235165, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32735588

RESUMO

INTRODUCTION: Patient-reported experience measures (PREMs) are central to inform on the responsiveness of health systems to citizens' health care needs and expectations. At their current form, PREMs do not reflect the weights that patients assign to varying aspects of the care experience. We aimed to investigate patients' preferences and willingness to pay (WTP) for attributes of the care experience in outpatient settings. METHODS: A discrete choice experiment was conducted among a representative sample of the general adult population of Hungary (n = 1000). Choice set attributes and levels were defined based on OECD's standardized PREMs (e.g. a doctor spending enough time in consultation, providing easy to understand explanations, giving opportunity to ask questions, and involving in decision making) and a price attribute. Conditional and mixed logit analyses were conducted. WTP estimates were computed in preference and WTP space. RESULTS: The respondents most preferred attribute was that of a doctor spending enough time in consultation, followed by involvement in decision making. Moreover, waiting times had a less important effect on respondents' choice preference compared with aspects of the doctor-patient relationship. Estimates in the WTP space varied from €4.38 (2.85-5.90) for waiting an hour less at a doctor's office to €36.13 (32.07-40.18) for a consultation where a doctor spends enough time with a patient relative to a consultation where a doctor does not. CONCLUSIONS: A preference-based PREMs approach provide insight on the value patients assign to different aspects of their care experience. This can inform the decisions of policy-makers and other stakeholders to coordinate efforts and resource allocation in a more targeted manner, by acting on attributes of the care experience that have a greater impact on the implementation of patient-centered care.


Assuntos
Assistência Ambulatorial/psicologia , Preferência do Paciente/estatística & dados numéricos , Medidas de Resultados Relatados pelo Paciente , Relações Médico-Paciente , Adolescente , Adulto , Idoso , Assistência Ambulatorial/organização & administração , Assistência Ambulatorial/estatística & dados numéricos , Tomada de Decisão Compartilhada , Feminino , Política de Saúde , Humanos , Hungria , Masculino , Pessoa de Meia-Idade , Assistência Centrada no Paciente/organização & administração , Alocação de Recursos/organização & administração , Adulto Jovem
9.
Pflege ; 33(4): 219-227, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32811324

RESUMO

Background: COVID-19 has led to a change in care for patients with chronic conditions, involving a transfer of drug administration from an outpatient to a community setting. AIM: To investigate patient preferences for treatment settings in the light of the current pandemic. METHODS: Patients, who prior to the pandemic had attended two different outpatient clinics in a university hospital for their infusions or injections, were interviewed by telephone. The semi-structured interviews were analyzed using qualitative and quantitative methods. RESULTS: Out of 49 patients with either anti-inflammatory or immunoglobulin treatments (response rate: 83 %), 24 (49.0 %) switched from subcutaneous (sc) injections in the hospital to the community setting, 18 (36.7 %) from intravenous infusions (iv) in the hospital to sc administration at home and 7 (14.3 %) moved to iv at home. During the pandemic 38 (80.9 %) wanted to continue their treatment at home, but after the pandemic 22 (46.8 %) would opt to go back to the hospital. Satisfaction was high with both settings, slightly favoring drug administration in hospital. Qualitative data shows that patients while emphasizing the importance of the relationship with the healthcare team, had increased concerns about safety as a result of COVID-19. CONCLUSIONS: The experience during the COVID-19 pandemic has increased self-management-skills in some patients, but long-term follow-up is needed. It has repercussions for future shared decision making for patients and their healthcare teams.


Assuntos
Assistência Ambulatorial/organização & administração , Doença Crônica/terapia , Serviços de Saúde Comunitária/organização & administração , Infecções por Coronavirus/epidemiologia , Pandemias , Pneumonia Viral/epidemiologia , Humanos , Preferência do Paciente/estatística & dados numéricos , Pesquisa Qualitativa , Medição de Risco
10.
Med Care ; 58(10): 867-873, 2020 10.
Artigo em Inglês | MEDLINE | ID: mdl-32732781

RESUMO

BACKGROUND: Patient utilization of public reporting has been suboptimal despite attempts to encourage use. Lack of utilization may be due to discordance between reported metrics and what patients want to know when making health care choices. OBJECTIVE: The objective of this study was to identify measures of quality that individuals want to be presented in public reporting and explore factors associated with researching health care. RESEARCH DESIGN: Patient interviews and focus groups were conducted to develop a survey exploring the relative importance of various health care measures. SUBJECTS: Interviews and focus groups conducted at local outpatient clinics. A survey administered nationally on an anonymous digital platform. MEASURES: Likert scale responses were compared using tests of central tendency. Rank-order responses were compared using analysis of variance testing. Associations with binary outcomes were analyzed using multivariable logistic regression. RESULTS: Overall, 4672 responses were received (42.0% response rate). Census balancing yielded 2004 surveys for analysis. Measures identified as most important were hospital reputation (considered important by 61.9%), physician experience (51.5%), and primary care recommendations (43.2%). Unimportant factors included guideline adherence (17.6%) and hospital academic affiliation (13.3%, P<0.001 for all compared with most important factors). Morbidity and mortality outcome measures were not among the most important factors. Patients were unlikely to rank outcome measures as the most important factors in choosing health care providers, irrespective of age, sex, educational status, or income. CONCLUSIONS: Patients valued hospital reputation, physician experience, and primary care recommendations while publicly reported metrics like patient outcomes were less important. Public quality reports contain information that patients perceive to be of relatively low value, which may contribute to low utilization.


Assuntos
Pessoal de Saúde/normas , Hospitais/normas , Preferência do Paciente/estatística & dados numéricos , Qualidade da Assistência à Saúde/normas , Adulto , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Resultados em Cuidados de Saúde/normas , Preferência do Paciente/psicologia , Registros Públicos de Dados de Cuidados de Saúde , Qualidade da Assistência à Saúde/estatística & dados numéricos , Inquéritos e Questionários
11.
Health Qual Life Outcomes ; 18(1): 217, 2020 Jul 07.
Artigo em Inglês | MEDLINE | ID: mdl-32635917

RESUMO

BACKGROUND: Acute myocardial infarction (AMI) is a significant cause of mortality and morbidity worldwide. Today, with increasing life quality and social economy, people pay much attention to the cost-effectiveness of a treatment strategy. This study investigated the preferences of individuals who would be potential caregivers or patients for AMI treatment in order to provide liable and instructive information for cardiologists and other related physicians. METHODS: A discrete choice experiment was conducted among people to assess preferences for hypothetical AMI treatment scenarios characterized by the attributes of treatment method, mortality within 5 years, complication rate within 1 year, treatment duration and expense. A conditional logit regression model and latent class analysis were used to interpret the collected data systematically. The relative importance of each attribute and willingness to pay of people on the trade-offs between different treatment strategies were estimated. RESULTS: Participants valued mortality within 5 years most highly (average importance: 40.9, 95%CI 0.447-0.530). Three classes of participants were identified: Class 1 placed the most importance on treatment duration, class 2 corresponded with the overall result while expense was regarded as the most important attribute in class 3. Individuals favored an intermediate treatment duration of about 10 days instead of the shortest (95% CI 1.044-1.248, P < 0.001). People's characteristics (sex, age, marriage, education and income) affected their preferences (P < 0.01). CONCLUSION: People considered a mortality rate within 5 years as the most crucial attribute in the MI treatment and preferred an intermediate treatment duration of about 10 days. Furthermore, the findings estimated the trade-offs acceptable to patients and heterogeneity in preferences for AMI treatment.


Assuntos
Grupo com Ancestrais do Continente Asiático/psicologia , Grupo com Ancestrais do Continente Asiático/estatística & dados numéricos , Comportamento de Escolha , Infarto do Miocárdio/terapia , Preferência do Paciente/psicologia , Preferência do Paciente/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , China , Feminino , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Fatores Socioeconômicos
12.
Chron Respir Dis ; 17: 1479973120936685, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32602361

RESUMO

Remote models of pulmonary rehabilitation (PR) are vital with suspension of face-to-face activity during the COVID-19 pandemic. We surveyed digital access and behaviours and PR delivery preferences of current PR service users. There was significant heterogeneity in access to and confidence in using the Internet with 31% having never previously accessed the Internet, 48% confident using the Internet and 29% reporting no interest in accessing any component of PR through a Web-based app. These data have implications for the remote delivery of PR during the COVID-19 pandemic and raise questions about the current readiness of service users to adopt Web-based delivered models of PR.


Assuntos
Atitude Frente aos Computadores , Infecções por Coronavirus , Terapia por Exercício , Acesso à Internet/estatística & dados numéricos , Pandemias , Preferência do Paciente/estatística & dados numéricos , Pneumonia Viral , Doenças Respiratórias/reabilitação , Telemedicina/métodos , Idoso , Betacoronavirus , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/prevenção & controle , Terapia por Exercício/métodos , Terapia por Exercício/estatística & dados numéricos , Feminino , Humanos , Intervenção Baseada em Internet , Masculino , Pandemias/prevenção & controle , Pneumonia Viral/epidemiologia , Pneumonia Viral/prevenção & controle , Doenças Respiratórias/epidemiologia , Doenças Respiratórias/psicologia , Reino Unido/epidemiologia
14.
Med. oral patol. oral cir. bucal (Internet) ; 25(4): e455-e460, jul. 2020. tab, graf
Artigo em Inglês | IBECS | ID: ibc-196496

RESUMO

BACKGROUND: Primary care physicians have been reported to be the first choice for patients with oral ulcerations. This study investigates the health-seeking behaviour of lay public in Galicia (North-western Spain) if experiencing a long-standing oral ulceration. MATERIAL AND METHODS: Cross-sectional population-based survey of randomly selected respondents conducted from March 1, 2015 to 30 June 2016. RESULTS: A total of 5,727 pedestrians entered the study (response rate: 53%), mostly in the 45-64 age group (30.2%; n = 1,728), 47.7% of them (n = 2,729) were males. Most participants (42.1%; n = 2,411) reported to visit their dentist once a year and had secondary or compulsory education as their highest educational achievement (28.18%, n = 1,614; 28%, n = 1,600 respectively).When questioned what they would do if they had a wound/ulceration lasting longer than 3 weeks, most participants answered they would go to see their primary care physician (62.8%; n = 3,597) and less than one quarter of the sample (23.8%; n = 1,371) would seek consultation with their dentist. CONCLUSIONS: General Galician population would seek professional consultation about a long-standing oral ulceration, relying mostly on primary care physicians. Those neglecting these lesions are elderly, less-schooled people and unaware of oral cancer


Nodisponible


Assuntos
Humanos , Masculino , Feminino , Adolescente , Adulto Jovem , Adulto , Pessoa de Meia-Idade , Idoso , Úlceras Orais/terapia , Preferência do Paciente/estatística & dados numéricos , Médicos de Atenção Primária , Odontólogos , Estudos Transversais , Inquéritos e Questionários , Fatores Sexuais , Fatores Etários , Fatores Socioeconômicos , Espanha
16.
JCO Glob Oncol ; 6: 844-851, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32552110

RESUMO

PURPOSE: The coronavirus disease 2019 (COVID-19) pandemic has imposed a unique challenge to oncology patients and their treatment. There is no study related to the patients' preference for systemic therapy during this pandemic. We have conducted a prospective study to analyze that aspect. METHODS: All consecutive patients who visited during the lockdown period from April 1-10, 2020, for systemic chemotherapy were included in the study for a questionnaire-based survey to evaluate the willingness to continue chemotherapy during this pandemic and factors influencing the decisions. RESULTS: A total of 302 patients were included (median age, 56 years; range, 21-77 years). Most common sites of cancer were breast (n = 114), lung (n = 44), ovary (n = 34), and colon (n = 20). Home address was within the city for 125 patients (42%), outside the city for 138 (46%), and outside the state for 37 (12%). Treatment was curative in 150 patients and palliative in 152. Educational status was primary and above for 231 patients and no formal schooling for 71. A total of 203 patients wanted to continue chemotherapy, 40 wanted to defer, and 56 wanted the physician to decide. Knowledge about COVID-19 strongly correlated with intent of treatment (P = .01), disease status (P = .02), knowledge about immunosuppression (P < .001), home location (P = .02), and education status (P = .003). The worry about catching SARS-CoV-2 was high in those with controlled disease (P = .06) and knowledge about immunosuppression (P = .02). Worry about disease progression was more with palliative intent (P < .001). CONCLUSION: This study shows that oncology patients in our country are more worried about disease progression than the SARS-CoV-2 and wish to continue chemotherapy during this pandemic. The treatment guidelines in the COVID-19 scenario should incorporate patients' perspectives.


Assuntos
Betacoronavirus/imunologia , Infecções por Coronavirus/prevenção & controle , Imunoterapia/normas , Neoplasias/terapia , Cuidados Paliativos/normas , Pandemias/prevenção & controle , Pneumonia Viral/prevenção & controle , Adulto , Idoso , Antineoplásicos Imunológicos/efeitos adversos , Infecções por Coronavirus/epidemiologia , Infecções por Coronavirus/imunologia , Infecções por Coronavirus/virologia , Progressão da Doença , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Imunoterapia/efeitos adversos , Imunoterapia/métodos , Índia/epidemiologia , Masculino , Pessoa de Meia-Idade , Neoplasias/imunologia , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Cuidados Paliativos/estatística & dados numéricos , Preferência do Paciente/psicologia , Preferência do Paciente/estatística & dados numéricos , Pneumonia Viral/epidemiologia , Pneumonia Viral/imunologia , Pneumonia Viral/virologia , Guias de Prática Clínica como Assunto , Estudos Prospectivos , Inquéritos e Questionários/estatística & dados numéricos , Adulto Jovem
17.
PLoS One ; 15(5): e0233294, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32469901

RESUMO

ClinicalTrials.gov was started with the intention to create a consumer-friendly database for patients and others in search of information on clinical trials. However, there is no research on whether the content of ClinicalTrials.gov aligns with patient preferences. The TransCelerate Clinical Research Access & Information Exchange Initiative convened patient advisory boards and conducted a global online survey (N = 1070) to determine patient preferences when searching for clinical trials for participation. Patient feedback and ClinicalTrials.gov guidance documents were used to construct instruments to assess patient focus and guidance adherence of the Brief Title (a short lay title of the clinical trial) and Brief Summary (a high-level summary of study features) data fields in a representative sample (N = 346) of ClinicalTrials.gov records of interventional trials. When searching for clinical trials, survey participants rated condition (66.4%), trial location (57.0%), trial dates (52.9%), age and gender (48.6%), and health measurements (i.e., what the study measures) (45.5%) as the most important items. When presented with a list of trials from an initial search, participants saw condition, brief summary, study drug name, and brief title as the most helpful items. In a Brief Title, they wanted condition, health measurements, participant age, and study drug name. For Brief Summaries, participants preferred additional information on treatment duration, condition, study goal, health measurements, and frequency of visits. The assessment of patient focus in a representative sample of current ClinicalTrials.gov records showed that patient focus was underdeveloped as study records achieved only 52% (brief titles) and 50% (brief summaries) of the best possible score. The analysis of adherence to ClinicalTrials.gov guidance showed better scores (brief titles 69%, brief summaries 66%). We identified key information elements for registry users when evaluating clinical trials for participation. We found that aspects of patient focus are not common in current ClinicalTrials.gov entries. To support more user-friendly study records, we developed a tool to assess the quality of the plain language fields in study records prior to submission.


Assuntos
Ensaios Clínicos como Assunto/normas , Bases de Dados Factuais , Disseminação de Informação/métodos , Registros Médicos/normas , Preferência do Paciente/estatística & dados numéricos , Sistema de Registros/estatística & dados numéricos , Projetos de Pesquisa/normas , Feminino , Fidelidade a Diretrizes , Humanos , Internet/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários
18.
Acta Diabetol ; 57(9): 1081-1091, 2020 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-32274583

RESUMO

AIMS: Clinical outcomes of diabetic macular edema (DME) have been widely described, but data on diabetic retinopathy perceptions by diabetes patients are limited. The aim of this survey was to explore the lived experience, knowledge, fears and expectations about disease, and treatment in patients with diabetes and macular edema treated with intravitreal injections (IVTI) and to characterize patient profiles. METHODS: Cross-sectional survey including a preliminary qualitative phase (20 patients with DME, treated or treatment-naive, 5 female and 15 male, age 36-74 years) followed by a quantitative survey (116 patients treated with IVTI for DME). Data ASKIA Analyze (version 5.3.3.5) was used for descriptive statistics, and R software (version 3.4.1) for multiple correspondence analysis. RESULTS: The qualitative phase identified the wording used by patients and information helpful to propose modalities of response in the quantitative phase. In the quantitative survey (116 patients, mean age 66.6 years), most patients were treated with anti-vascular endothelial growth factor. Overall, 71.9% reported that the disease negatively affected their daily activities and 33.1% considered that regular visits to the ophthalmologist were disrupting their life. Treatment expectations differed significantly between patients in terms of disease experience (visit and injection schedules), fears and feelings, and relationship with physicians, allowing three patient profiles to be identified: "Worried" patients (n = 45) felt isolated and were worried about the need for repeated treatment and possible side effects. They were mainly active men aged < 60 with type I diabetes (T1D) and DME diagnosed for > 2 years; "Curious" patients (n = 21) experienced insufficient support and requested more information on their disease and existing treatments. They were mainly single women aged 60-69 years; "Passive" patients (n = 50) felt sufficiently informed by their ophthalmologist and were not concerned by DME. They were older (mean age: 70 years) and mainly type 2 diabetic men. CONCLUSIONS: Patients with diabetes and macular edema treated with IVTI form a heterogeneous group regarding fears and expectations. Different patient profiles were identified and need to be confirmed in larger studies. A better understanding of psychological profiles may optimize compliance of diabetic patients.


Assuntos
Inibidores da Angiogênese/administração & dosagem , Retinopatia Diabética/tratamento farmacológico , Retinopatia Diabética/psicologia , Medo/fisiologia , Edema Macular/tratamento farmacológico , Edema Macular/psicologia , Motivação/fisiologia , Adulto , Idoso , Pré-Escolar , Estudos Transversais , Retinopatia Diabética/complicações , Retinopatia Diabética/epidemiologia , Medo/psicologia , Feminino , França/epidemiologia , Humanos , Injeções Intravítreas , Edema Macular/complicações , Edema Macular/epidemiologia , Masculino , Pessoa de Meia-Idade , Cooperação do Paciente/psicologia , Cooperação do Paciente/estatística & dados numéricos , Preferência do Paciente/psicologia , Preferência do Paciente/estatística & dados numéricos , Inquéritos e Questionários , Acuidade Visual/efeitos dos fármacos
19.
Plast Reconstr Surg ; 145(5): 932e-939e, 2020 05.
Artigo em Inglês | MEDLINE | ID: mdl-32332533

RESUMO

BACKGROUND: Aesthetic surgery is a personal choice that appeals to a wide population of individuals. The authors investigated how race and ethnicity, age, gender, income, and education level affect patient motivation to pursue cosmetic surgery and selection of a plastic surgeon. METHODS: One hundred seventy-two consecutive patients from two surgeons (an African American man and a Caucasian woman) completed surveys from 2016 to 2017 that assessed their decision to pursue cosmetic surgery. Univariable cumulative logit models with odds ratios and 95 percent confidence intervals were calculated with the survey data. RESULTS: African American patients were more likely to be willing to travel greater than 100 miles for a surgeon who shared the same ethnicity or race, to consider international surgery, to report that social standards did not influence their decision for surgery, and to view the buttocks as the female feature that best defines attractiveness within their race or ethnicity. Patients with incomes over $125,000 and those over the age of 50 years were more likely to seek a surgeon of the same gender, think a same-gender surgeon could provide better results, be influenced by societal standards to pursue surgery, and view the face as the defining attractive female feature within their race or ethnicity. Patients with college or graduate degrees were more likely to believe a gender- and racially concordant surgeon would provide them with better a result and believed societal standards were unrealistic to obtain with diet and exercise. CONCLUSIONS: Plastic surgeons encounter patients of varying demographics, all of whom have differing perspectives about cosmetic surgery and motivations for its pursuit. Recognizing and defining these differences could enable surgeons to provide a more individualized cosmetic experience and inform future marketing strategies to attract a diverse patient population.


Assuntos
Centros Médicos Acadêmicos/estatística & dados numéricos , Motivação , Preferência do Paciente/psicologia , Procedimentos Cirúrgicos Reconstrutivos/psicologia , Fatores Etários , Comportamento de Escolha , Grupos de Populações Continentais/psicologia , Grupos de Populações Continentais/estatística & dados numéricos , Escolaridade , Grupos Étnicos/psicologia , Grupos Étnicos/estatística & dados numéricos , Feminino , Humanos , Renda/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Preferência do Paciente/estatística & dados numéricos , Satisfação do Paciente , Procedimentos Cirúrgicos Reconstrutivos/estatística & dados numéricos , Fatores Sexuais , Cirurgiões/estatística & dados numéricos , Inquéritos e Questionários/estatística & dados numéricos
20.
J Med Internet Res ; 22(4): e15682, 2020 04 15.
Artigo em Inglês | MEDLINE | ID: mdl-32293573

RESUMO

BACKGROUND: Video-based health care can help address access gaps for patients and is rapidly being offered by health care organizations. However, patients who lack access to technology may be left behind in these initiatives. In 2016, the US Department of Veterans Affairs (VA) began distributing video-enabled tablets to provide video visits to veterans with health care access barriers. OBJECTIVE: This study aimed to evaluate veterans' experiences with VA-issued tablets and identify patient characteristics associated with preferences for video visits vs in-person care. METHODS: A baseline survey was sent to the tablet recipients, and a follow-up survey was sent to the respondents 3 to 6 months later. Multivariate logistic regression was used to identify patient characteristics associated with preferences for care, and we examined qualitative themes around care preferences using standard content analysis methods for coding the data collected in the open-ended questions. RESULTS: Patient-reported access barriers centered around transportation and health-related challenges, outside commitments, and feeling uncomfortable or uneasy at the VA. Satisfaction with the tablet program was high, and in the follow-up survey, approximately two-thirds of tablet recipients preferred care via a tablet (194/604, 32.1%) or expressed that video-based and in-person care were "about the same" (216/604, 35.7%), whereas one-third (192/604, 31.7%) indicated a preference for in-person care. Patients were significantly more likely to report a preference for video visits (vs a preference for in-person visits or rating them "about the same") if they felt uncomfortable in a VA setting, reported a collaborative communication style with their doctor, had a substance use disorder diagnosis, or lived in a place with better broadband coverage. Patients were less likely to report a preference for video visits if they had more chronic conditions. Qualitative analyses identified four themes related to preferences for video-based care: perceived improvements in access to care, perceived differential quality of care, feasibility of obtaining necessary care, and technology-related challenges. CONCLUSIONS: Many recipients of VA-issued tablets report that video care is equivalent to or preferred to in-person care. Results may inform efforts to identify good candidates for virtual care and interventions to support individuals who experience technical challenges.


Assuntos
Acesso aos Serviços de Saúde/normas , Preferência do Paciente/estatística & dados numéricos , Telemedicina/métodos , Veteranos/estatística & dados numéricos , Gravação de Videoteipe/normas , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Comprimidos , Estados Unidos , Adulto Jovem
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