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1.
Support Care Cancer ; 32(5): 313, 2024 Apr 29.
Artigo em Inglês | MEDLINE | ID: mdl-38679639

RESUMO

PURPOSE: People with advanced or metastatic cancer and their caregivers may have different care goals and face unique challenges compared to those with early-stage disease or those nearing the end-of-life. These MASCC-ASCO standards and practice recommendations seek to establish consistent provision of quality survivorship care for people affected by advanced or metastatic cancer. METHODS: An expert panel comprising MASCC and ASCO members was formed. Standards and recommendations relevant to the provision of quality survivorship care for people affected by advanced or metastatic cancer were developed through conducting: (1) a systematic review of unmet supportive care needs; (2) a scoping review of cancer survivorship, supportive care, and palliative care frameworks and guidelines; and (3) an international modified Delphi consensus process. RESULTS: A systematic review involving 81 studies and a scoping review of 17 guidelines and frameworks informed the initial standards and recommendations. Subsequently, 77 experts (including 8 people with lived experience) across 33 countries (33% were low-to-middle resource countries) participated in the Delphi study and achieved ≥ 94.8% agreement for seven standards (1. Person-Centred Care; 2. Coordinated and Integrated Care; 3. Evidence-Based and Comprehensive Care; 4. Evaluated and Communicated Care; 5. Accessible and Equitable Care; 6. Sustainable and Resourced Care; 7. Research and Data-Driven Care) and ≥ 84.2% agreement across 45 practice recommendations. CONCLUSION: Standards of survivorship care for people affected by advanced or metastatic cancer are provided. These MASCC-ASCO standards will support optimization of health outcomes and care experiences by providing guidance to stakeholders in cancer care (healthcare professionals, leaders, and administrators; governments and health ministries; policymakers; advocacy agencies; cancer survivors and caregivers. Practice recommendations may be used to facilitate future research, practice, policy, and advocacy efforts.


Assuntos
Sobreviventes de Câncer , Neoplasias , Cuidados Paliativos , Sobrevivência , Humanos , Técnica Delphi , Metástase Neoplásica , Neoplasias/terapia , Cuidados Paliativos/normas , Cuidados Paliativos/métodos , Assistência Centrada no Paciente/normas , Assistência Centrada no Paciente/organização & administração , Guias de Prática Clínica como Assunto , Qualidade da Assistência à Saúde/normas
2.
BMC Med Educ ; 24(1): 457, 2024 Apr 26.
Artigo em Inglês | MEDLINE | ID: mdl-38671440

RESUMO

BACKGROUND: Team-based care is critical to achieving health care value while maximizing patient outcomes. Few descriptions exist of graduate-level team training interventions and practice models. Experience from the multisite, decade-long Veterans Affairs (VA) Centers of Excellence in Primary Care Education provides lessons for developing internal medicine training experiences in interprofessional clinical learning environments. METHODS: A review of multisite demonstration project transforming traditional silo-model training to interprofessional team-based primary care. Using iterative quality improvement approaches, sites evaluated curricula with learner, faculty and staff feedback. Learner- and patient-level outcomes and organizational culture change were examined using mixed methods, within and across sites. Participants included more than 1600 internal medicine, nurse practitioner, nursing, pharmacy, psychology, social work and physical therapy trainees. This took place in seven academic university-affiliated VA primary care clinics with patient centered medical home design RESULTS: Each site developed innovative design and curricula using common competencies of shared decision making, sustained relationships, performance improvement and interprofessional collaboration. Educational strategies included integrated didactics, workplace collaboration and reflection. Sites shared implementation best practices and outcomes. Cross-site evaluations of the impacts of these educational strategies indicated improvements in trainee clinical knowledge, team-based approaches to care and interest in primary care careers. Improved patient outcomes were seen in the quality of chronic disease management, reduction in polypharmacy, and reduced emergency department and hospitalizations. Evaluations of the culture of training environments demonstrated incorporation and persistence of interprofessional learning and collaboration. CONCLUSIONS: Aligning education and practice goals with cross-site collaboration created a robust interprofessional learning environment. Improved trainee/staff satisfaction and better patient care metrics supports use of this model to transform ambulatory care training. TRIAL REGISTRATION: This evaluation was categorized as an operation improvement activity by the Office of Academic Affairs based on Veterans Health Administration Handbook 1058.05, in which information generated is used for business operations and quality improvement (Title 38 Code of Federal Regulations Part 16 (38 CFR 16.102(l)). The overall project was subject to administrative oversight rather Human Subjects Institutional Review Board, as such informed consent was waived as part of the project implementation and evaluation.


Assuntos
Currículo , Cultura Organizacional , Atenção Primária à Saúde , United States Department of Veterans Affairs , Humanos , Atenção Primária à Saúde/normas , Estados Unidos , Equipe de Assistência ao Paciente , Melhoria de Qualidade , Inovação Organizacional , Assistência Centrada no Paciente/normas , Hospitais de Veteranos/normas , Medicina Interna/educação
3.
PLoS One ; 16(8): e0255989, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34379687

RESUMO

INTRODUCTION: Automated specialty palliative care consultation (SPC) has been proposed as an intervention to improve patient-centered care in the intensive care unit (ICU). Existing automated SPC trigger criteria are designed to identify patients at highest risk of in-hospital death. We sought to evaluate common mortality-based SPC triggers and determine whether these triggers reflect actual use of SPC consultation. We additionally aimed to characterize the population of patients who receive SPC without meeting mortality-based triggers. METHODS: We conducted a retrospective cohort study of all adult ICU admissions from 2012-2017 at an academic medical center with five subspecialty ICUs to determine the sensitivity and specificity of the five most common SPC triggers for predicting receipt of SPC. Among ICU admissions receiving SPC, we assessed differences in patients who met any SPC trigger compared to those who met none. RESULTS: Of 48,744 eligible admissions, 1,965 (4.03%) received SPC; 979 (49.82%) of consultations met at least 1 trigger. The sensitivity and specificity for any trigger predicting SPC was 49.82% and 79.61%, respectively. Patients who met no triggers but received SPC were younger (62.71 years vs 66.58 years, mean difference (MD) 3.87 years (95% confidence interval (CI) 2.44-5.30) p<0.001), had longer ICU length of stay (11.43 days vs 8.42 days, MD -3.01 days (95% CI -4.30 --1.72) p<0.001), and had a lower rate of in-hospital death (48.68% vs 58.12%, p<0.001). CONCLUSION: Mortality-based triggers for specialty palliative care poorly reflect actual use of SPC in the ICU. Reliance on such triggers may unintentionally overlook an important population of patients with clinician-identified palliative care needs.


Assuntos
Hospitalização/estatística & dados numéricos , Unidades de Terapia Intensiva/estatística & dados numéricos , Tempo de Internação/estatística & dados numéricos , Cuidados Paliativos/normas , Assistência Centrada no Paciente/normas , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos
4.
JCO Oncol Pract ; 17(8): 475-492, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-34255551

RESUMO

PURPOSE: To provide Standards on the basis of evidence and expert consensus for a pilot of the Oncology Medical Home (OMH) certification program. The OMH model is a system of care delivery that features coordinated, efficient, accessible, and evidence-based care and includes a process for measurement of outcomes to facilitate continuous quality improvement. The OMH pilot is intended to inform further refinement of Standards for OMH model implementation. METHODS: An Expert Panel was formed, and a systematic review of the literature on the topics of OMH, clinical pathways, and survivorship care plans was performed using PubMed and Google Scholar. Using this evidence base and an informal consensus process, the Expert Panel developed a set of OMH Standards. Public comments were solicited and considered in preparation of the final manuscript. RESULTS: Three comparative peer-reviewed studies of OMH met the inclusion criteria. In addition, the results from 16 studies of clinical pathways and one systematic review of survivorship care plans informed the evidence review. Limitations of the evidence base included the small number of studies of OMH and lack of longer-term outcomes data. More data were available to inform the specific Standards for pathways and survivorship care; however, outcomes were mixed for the latter intervention. The Expert Panel concluded that in the future, practices should be encouraged to publish the results of OMH interventions in peer-reviewed journals to improve the evidence base. STANDARDS: Standards are provided for OMH in the areas of patient engagement, availability and access to care, evidence-based medicine, equitable and comprehensive team-based care, quality improvement, goals of care, palliative and end-of-life care discussions, and chemotherapy safety. Additional information, including a Standards implementation manual, is available at www.asco.org/standards.


Assuntos
Atenção à Saúde/normas , Oncologia , Assistência Centrada no Paciente , Humanos , Oncologia/normas , Cuidados Paliativos/normas , Assistência Centrada no Paciente/normas
5.
Eur J Cancer ; 152: 90-99, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-34090144

RESUMO

BACKGROUND: Patient-reported outcomes (PROs) are the gold standard to assess the patients' subjective health status. While both the Food and Drug Administration and European Medicines Agency recommend the use of PROs as end-points in paediatric clinical trials to support claims for medical product labelling, it is not known how often PROs are actually used. The aim of this study was to assess the usage of PRO instruments in childhood cancer clinical trials investigating anti-cancer medication. METHODS: In June 2020 ClinicalTrials and EudraCT were systematically searched for all trials including children and adolescents (≤21 years) with cancer registered between 2007 and 2020. The use of PRO measures and trials characteristics were analysed. To investigate which trial characteristics are associated with the use of PROs, a binary logistic regression was calculated. RESULTS: Of 4789 identified trials, 711 were included. The most frequent reason for exclusion was age limitation (age >21 years). Of all included trials, only 8.2% used PROs as end-points; .6% as the primary end-point. The most commonly used questionnaire was the PedsQL™ (32.8%), followed by the Patient-Reported Outcomes Measurement Information System scales (12.1%). No association was observed between the use of PROs and trial region, number of centres, trial phase, time period or intervention type (all p > .05). The use of PROs did not substantially increase over time. Only 20.3% of the closed studies had published their results. CONCLUSION: Despite recommendations of regulatory agencies, PRO assessment is extremely rare in paediatric oncology clinical trials. More efforts should be undertaken to facilitate implementation of PRO in paediatric trials to guarantee patient-centred research and treatments.


Assuntos
Antineoplásicos/administração & dosagem , Ensaios Clínicos como Assunto/estatística & dados numéricos , Neoplasias/tratamento farmacológico , Medidas de Resultados Relatados pelo Paciente , Sistema de Registros/estatística & dados numéricos , Antineoplásicos/efeitos adversos , Criança , Ensaios Clínicos como Assunto/normas , Humanos , Oncologia/normas , Oncologia/estatística & dados numéricos , Neoplasias/diagnóstico , Neoplasias/psicologia , Assistência Centrada no Paciente/normas , Qualidade de Vida , Projetos de Pesquisa/normas , Projetos de Pesquisa/estatística & dados numéricos
7.
J Surg Res ; 264: 1-7, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33744772

RESUMO

BACKGROUND: Procedure-based opioid-prescribing guidelines have reduced the amount of opioids prescribed after surgery; however, many patients are still overprescribed opioids. The 24-h predischarge opioid consumption (PDOC) metric has been proposed to guide patient-centered prescribing. MATERIALS AND METHODS: This is a single-institution, retrospective study of patients who underwent major abdominal surgery. We assessed the correlation between inpatient opioid use and discharge prescriptions using morphine milligram equivalents (MMEs). The adequacy of discharge prescriptions for individual patients was assessed using 2 models, one assuming constant opioid use (based on 24-h PDOC) and the other assuming a linear taper. RESULTS: Of 596 included patients, gastric bypass and colectomy were the most common operations. Median length of stay was 3.5 d. Inpatient opioid use and discharge prescriptions were weakly correlated (r = 0.35). Patients with no opioid use 24 h before discharge (n = 133, 22.3%) were frequently discharged with opioid prescriptions. Patients with high opioid use (24-h PDOC >60 MME) were often discharged with prescriptions that would have lasted <48 h (164/200, 82%). Assuming constant opioid use, discharge prescriptions would have lasted patients a median of 5.1 d. With linear opioid tapering, 440 (72.9%) patients would have had leftover pills. A theoretical discharge prescription of 4 times 24-h PDOC would reduce the median prescription by 130 MMEs and allow a linear taper for 97.6% of patients. CONCLUSIONS: At our institution, opioid prescribing was rarely patient-centered, with little correlation between patient's inpatient opioid use and discharge prescriptions. This leads to overprescribing for most patients and underprescribing for others.


Assuntos
Analgésicos Opioides/efeitos adversos , Prescrições de Medicamentos/normas , Dor Pós-Operatória/tratamento farmacológico , Assistência Centrada no Paciente/normas , Guias de Prática Clínica como Assunto , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Prescrições de Medicamentos/estatística & dados numéricos , Feminino , Humanos , Tempo de Internação/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Transtornos Relacionados ao Uso de Opioides/etiologia , Transtornos Relacionados ao Uso de Opioides/prevenção & controle , Manejo da Dor/normas , Manejo da Dor/estatística & dados numéricos , Medição da Dor/estatística & dados numéricos , Dor Pós-Operatória/diagnóstico , Alta do Paciente/normas , Padrões de Prática Médica/normas , Padrões de Prática Médica/estatística & dados numéricos , Estudos Retrospectivos , Resultado do Tratamento , Adulto Jovem
8.
Mol Oncol ; 15(5): 1277-1288, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33734563

RESUMO

There is a persistent variation in cancer outcomes among and within European countries suggesting (among other causes) inequalities in access to or delivery of high-quality cancer care. European policy (EU Cancer Mission and Europe's Beating Cancer Plan) is currently moving towards a mission-oriented approach addressing these inequalities. In this study, we used the quantitative and qualitative data of the Organisation of European Cancer Institutes' Accreditation and Designation Programme, relating to 40 large European cancer centres, to describe their current compliance with quality standards, to identify the hallmarks common to all centres and to show the distinctive features of Comprehensive Cancer Centres. All Comprehensive Cancer Centres and Cancer Centres accredited by the Organisation of European Cancer Institutes show good compliance with quality standards related to care, multidisciplinarity and patient centredness. However, Comprehensive Cancer Centres on average showed significantly better scores on indicators related to the volume, quality and integration of translational research, such as high-impact publications, clinical trial activity (especially in phase I and phase IIa trials) and filing more patents as early indicators of innovation. However, irrespective of their size, centres show significant variability regarding effective governance when functioning as entities within larger hospitals.


Assuntos
Institutos de Câncer , Neoplasias/terapia , Qualidade da Assistência à Saúde , Academias e Institutos/normas , Academias e Institutos/estatística & dados numéricos , Pesquisa Biomédica/organização & administração , Pesquisa Biomédica/normas , Pesquisa Biomédica/estatística & dados numéricos , Institutos de Câncer/organização & administração , Institutos de Câncer/estatística & dados numéricos , Estudos de Coortes , Europa (Continente)/epidemiologia , Humanos , Oncologia/normas , Oncologia/estatística & dados numéricos , Neoplasias/epidemiologia , Equipe de Assistência ao Paciente/organização & administração , Equipe de Assistência ao Paciente/normas , Equipe de Assistência ao Paciente/estatística & dados numéricos , Assistência Centrada no Paciente/organização & administração , Assistência Centrada no Paciente/normas , Assistência Centrada no Paciente/estatística & dados numéricos , Pesquisa Translacional Biomédica/métodos , Pesquisa Translacional Biomédica/organização & administração , Pesquisa Translacional Biomédica/estatística & dados numéricos
10.
JAMA Dermatol ; 157(3): 330-337, 2021 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-33533921

RESUMO

Importance: Shared decision-making (SDM) can improve the quality of care for patients. The extent to which this tool has been used and the evidence supporting its use in dermatology have not been systematically examined. Objective: To perform a scoping review of the literature regarding SDM in dermatology. Evidence Review: Searches of Ovid MEDLINE, PsycINFO, PsycARTICLES, Sciverse Scopus, and EBM Reviews were conduced on July 11, 2019, and March 6, 2020. There were no limits on date, type of article, language, or subject for the initial search. A total of 1673 titles and abstracts were screened by 2 independent reviewers in the Covidence mixed-methods platform. Forty-one full-text studies were assessed for eligibility. For inclusion, articles needed to include a dermatologic diagnosis as well as discussion of SDM or patient decision aids. Two independent reviewers screened 29 full-text articles for inclusion and extracted qualitative data using a set of 26 predefined codes. Qualitative coding was applied to excerpts to categorize the article, define and describe advantages and disadvantages of SDM, understand patient and physician requests for SDM, and discuss methods of implementation. Findings: Despite a small number of articles on SDM (n = 29) in dermatology, the selected literature provided consistent messages regarding the importance of SDM for dermatology and a number of strategies and tools for implementation. Medical dermatology was the most common subspecialty studied, with melanoma, psoriasis, and connective tissue diseases most examined. Only 5 publications introduced SDM tools specifically for dermatologic conditions; of these, only 2 tools were validated. Barriers to implementation that were cited included time and a lack of training for clinicians, although the literature also provided potential solutions to these issues. All articles emphasized the value of SDM for both patients and physicians. Conclusions and Relevance: The literature regarding SDM in dermatology consistently suggests that it is a useful tool for providing patient-centered care. Established tools have been proposed since 2012. More research is needed to implement better practices, especially in dermatologic subspecialties. However, there are substantial suggestions from the literature for strategies and tools with which to begin a shared decision-making practice.


Assuntos
Tomada de Decisão Compartilhada , Dermatologia/normas , Qualidade da Assistência à Saúde , Humanos , Assistência Centrada no Paciente/normas , Dermatopatias/terapia
11.
J Surg Res ; 259: 387-392, 2021 03.
Artigo em Inglês | MEDLINE | ID: mdl-33070993

RESUMO

BACKGROUND: Although obtaining preoperative procedural consent is required to meet legal and ethical obligations, consent is often relegated to a unidirectional conversation between surgeons and patients. In contrast, shared decision-making (SDM) is a collaborative dialog that elicits patient preferences. Despite emerging interest in SDM, there is a paucity of literature on its application to ventral incisional hernia repair (VIHR). The various surgical techniques and mesh types available, the potential impact on functional outcomes and quality of life, the largely elective nature of the operation, and the significant risk of perioperative patient complications render VIHR an ideal field for SDM implementation. METHODS: The authors reviewed the current literature and drew on their own practice experience to describe evidence-based practical guidelines for implementing the SDM into VIHR care. RESULTS: We summarized the evidence basis for SDM in surgery and discussed how this model can be applied to VIHR given the multiple, complex factors that influence surgical decision-making. We outlined an example of using an SDM framework, "SHARE," with a patient with a large, recurrent ventral hernia. CONCLUSIONS: SDM has the potential to improve patient-centered and preference-concordant care among individuals being considered for VIHR to ensure that treatment interventions meet a patient's goals, rather than solely treating the underlying disease process.


Assuntos
Tomada de Decisão Compartilhada , Hérnia Ventral/cirurgia , Herniorrafia/métodos , Hérnia Incisional/cirurgia , Complicações Pós-Operatórias/prevenção & controle , Comunicação , Medicina Baseada em Evidências/métodos , Medicina Baseada em Evidências/organização & administração , Medicina Baseada em Evidências/normas , Implementação de Plano de Saúde , Herniorrafia/efeitos adversos , Herniorrafia/normas , Humanos , Participação do Paciente , Preferência do Paciente , Assistência Centrada no Paciente/métodos , Assistência Centrada no Paciente/organização & administração , Assistência Centrada no Paciente/normas , Relações Médico-Paciente , Complicações Pós-Operatórias/epidemiologia , Complicações Pós-Operatórias/etiologia , Guias de Prática Clínica como Assunto , Qualidade de Vida , Recidiva
12.
Health Serv Res ; 56(3): 352-362, 2021 06.
Artigo em Inglês | MEDLINE | ID: mdl-33135203

RESUMO

OBJECTIVE: To identify the impact of changes surrounding certification as a patient-centered medical home (PCMH) on outcomes for patients with diabetes. STUDY SETTING: Minnesota legislation established mandatory quality reporting for patients with diabetes and statewide standards for certification as a PCMH. Patient-level quality reporting data (2008-2018) were used to study the impact of transition to a PCMH. STUDY DESIGN: Achievement of Minnesota's optimal diabetes care standard-in aggregate and by component-was modeled for adult patients with Type 1 or Type 2 diabetes as a function of time relative to the year the patient's primary care practice achieved PCMH certification. Patients from uncertified practices were used to control for general trend. Practice-level random effects captured time-invariant characteristics of practices and the practices' average patient. DATA COLLECTION: Electronic health record data were submitted by 695 Minnesota practices capturing components of the quality standard: blood sugar control, cholesterol control, blood pressure control, nonsmoking status, and use of aspirin. PRINCIPAL FINDINGS: The first cohort of practices achieving PCMH certification (July 2010-June 2014) showed statistically insignificant changes in optimal care. The next cohort of practices (July 2014-June 2018) achieved larger, clinically meaningful increases in quality of care during the time prior to and following certification. Specifically, this second cohort of practices was estimated to achieve a 12.8 percentage-point improvement (P < .001) in the predicted probability of providing optimal diabetes care over the period spanning 3 years before to 3 years after certification. CONCLUSIONS: Our results suggest that the initial cohort of certified practices was already performing at a high level before certification, perhaps requiring little change in their operations to achieve PCMH certification. The second cohort, on the other hand, made meaningful, quality-improving changes in the years surrounding certification. Differences by cohort may partially explain the inconsistent PCMH impacts found in the literature.


Assuntos
Certificação/normas , Diabetes Mellitus/terapia , Assistência Centrada no Paciente/organização & administração , Atenção Primária à Saúde/organização & administração , Fatores Etários , Idoso , Aspirina/administração & dosagem , Pressão Sanguínea , Colesterol/sangue , Registros Eletrônicos de Saúde , Feminino , Hemoglobinas Glicadas , Humanos , Masculino , Pessoa de Meia-Idade , Minnesota , Assistência Centrada no Paciente/normas , Atenção Primária à Saúde/normas , Fatores Sexuais , Fumar/epidemiologia , Fatores Socioeconômicos
13.
Am J Kidney Dis ; 77(4): 529-537, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33278476

RESUMO

National and international nephrology organizations have identified substantial unmet supportive care needs of patients with kidney disease and issued recommendations. In the United States, the most recent comprehensive effort to change kidney care, the Advancing American Kidney Health Initiative, does not explicitly address supportive care needs, although it attempts to implement more patient-centered care. This Perspective from the leaders of the Coalition for Supportive Care of Kidney Patients advocates for urgent policy changes to improve patient-centered care and the quality of life of seriously ill patients with kidney disease. It argues for the provision of supportive care by an interdisciplinary team led by nephrology clinicians to improve shared decision-making, advance care planning, pain and symptom management, the explicit offering of active medical management without dialysis as an option for patients who may not benefit from dialysis, and the removal by the Centers for Medicare & Medicaid Services and all other payors of financial and regulatory disincentives to quality supportive care, including hospice, for patients with or approaching kidney failure. It also emphasizes that all educational and accreditation programs for nephrology clinicians include kidney supportive care and its essential role in the care of patients with kidney disease.


Assuntos
Centers for Medicare and Medicaid Services, U.S./normas , Nefropatias/terapia , Cuidados Paliativos/normas , Assistência Centrada no Paciente/normas , Política Pública , Índice de Gravidade de Doença , Tomada de Decisão Compartilhada , Humanos , Nefropatias/epidemiologia , Cuidados Paliativos/métodos , Assistência Centrada no Paciente/métodos , Estados Unidos/epidemiologia
14.
Oral Oncol ; 112: 105044, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33130545

RESUMO

Oropharyngeal squamous cell cancer (OPSCC) is now the most common site of head and neck squamous cell cancer. Despite the focus on treatment deintensification in clinical trials, little is known about the preferences, experiences and needs of patients with OPSCC when deciding between surgery and radiation therapy as primary treatment with curative intent. In this qualitative study, pre-treatment and post-treatment oropharyngeal cancer patients were recruited to take part in one-on-one interviews (n = 11 pre-treatment) and focus group discussions (n = 15 post-treatment) about treatment decision-making. Recordings were transcribed and assessed for emergent themes using framework analysis. From the one-on-one interviews and focus group discussions with OPSCC patients, fourteen themes were identified. Participants expressed alarm at diagnosis, decisional conflict, and a variety of roles in decision-making (physician-controlled, shared, and autonomous). Decisions were driven by the perceived recommendation of the treatment team, a desire for physical (surgical) tumor removal, fear of adverse effects of treatment, and patient-specific values. Although participants felt well-informed by their treating physicians, they identified a need for additional patient-centered information. Participants were critical of the poor quality of information available on the internet, and acknowledged the advantage of hearing the experiences of post-treatment patients. The experiences identified herein may be used to guide patient-centered communication during patient counseling and to inform interventions designed to support patients' needs at diagnosis, ultimately helping to implement high-quality, patient-centered care.


Assuntos
Tomada de Decisões , Neoplasias Orofaríngeas/radioterapia , Neoplasias Orofaríngeas/cirurgia , Preferência do Paciente , Carcinoma de Células Escamosas de Cabeça e Pescoço/radioterapia , Carcinoma de Células Escamosas de Cabeça e Pescoço/cirurgia , Idoso , Comunicação , Conflito Psicológico , Informação de Saúde ao Consumidor/normas , Tomada de Decisão Compartilhada , Medo , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação das Necessidades , Neoplasias Orofaríngeas/diagnóstico , Neoplasias Orofaríngeas/psicologia , Assistência Centrada no Paciente/normas , Pesquisa Qualitativa , Fatores Socioeconômicos , Carcinoma de Células Escamosas de Cabeça e Pescoço/diagnóstico , Carcinoma de Células Escamosas de Cabeça e Pescoço/psicologia , Resultado do Tratamento
15.
Artigo em Inglês | MEDLINE | ID: mdl-33325455

RESUMO

This position paper has been drafted by experts from the Czech national board of diseases with bronchial obstruction, of the Czech Pneumological and Phthisiological Society. The statements and recommendations are based on both the results of randomized controlled trials and data from cross-sectional and prospective real-life studies to ensure they are as close as possible to the context of daily clinical practice and the current health care system of the Czech Republic. Chronic Obstructive Pulmonary Disease (COPD) is a preventable and treatable heterogeneous syndrome with a number of pulmonary and extrapulmonary clinical features and concomitant chronic diseases. The disease is associated with significant mortality, morbidity and reduced quality of life. The main characteristics include persistent respiratory symptoms and only partially reversible airflow obstruction developing due to an abnormal inflammatory response of the lungs to noxious particles and gases. Oxidative stress, protease-antiprotease imbalance and increased numbers of pro-inflammatory cells (mainly neutrophils) are the main drivers of primarily non-infectious inflammation in COPD. Besides smoking, household air pollution, occupational exposure, low birth weight, frequent respiratory infections during childhood and also genetic factors are important risk factors of COPD development. Progressive airflow limitation and airway remodelling leads to air trapping, static and dynamic hyperinflation, gas exchange abnormalities and decreased exercise capacity. Various features of the disease are expressed unequally in individual patients, resulting in various types of disease presentation, emerging as the "clinical phenotypes" (for specific clinical characteristics) and "treatable traits" (for treatable characteristics) concept. The estimated prevalence of COPD in Czechia is around 6.7% with 3,200-3,500 deaths reported annually. The elementary requirements for diagnosis of COPD are spirometric confirmation of post-bronchodilator airflow obstruction (post-BD FEV1/VCmax <70%) and respiratory symptoms assessement (dyspnoea, exercise limitation, cough and/or sputum production. In order to establish definite COPD diagnosis, a five-step evaluation should be performed, including: 1/ inhalation risk assessment, 2/ symptoms evaluation, 3/ lung function tests, 4/ laboratory tests and 5/ imaging. At the same time, all alternative diagnoses should be excluded. For disease classification, this position paper uses both GOLD stages (1 to 4), GOLD groups (A to D) and evaluation of clinical phenotype(s). Prognosis assessment should be done in each patient. For this purpose, we recommend the use of the BODE or the CADOT index. Six elementary clinical phenotypes are recognized, including chronic bronchitis, frequent exacerbator, emphysematous, asthma/COPD overlap (ACO), bronchiectases with COPD overlap (BCO) and pulmonary cachexia. In our concept, all of these clinical phenotypes are also considered independent treatable traits. For each treatable trait, specific pharmacological and non-pharmacological therapies are defined in this document. The coincidence of two or more clinical phenotypes (i.e., treatable traits) may occur in a single individual, giving the opportunity of fully individualized, phenotype-specific treatment. Treatment of COPD should reflect the complexity and heterogeneity of the disease and be tailored to individual patients. Major goals of COPD treatment are symptom reduction and decreased exacerbation risk. Treatment strategy is divided into five strata: risk elimination, basic treatment, phenotype-specific treatment, treatment of respiratory failure and palliative care, and treatment of comorbidities. Risk elimination includes interventions against tobacco smoking and environmental/occupational exposures. Basic treatment is based on bronchodilator therapy, pulmonary rehabilitation, vaccination, care for appropriate nutrition, inhalation training, education and psychosocial support. Adequate phenotype-specific treatment varies phenotype by phenotype, including more than ten different pharmacological and non-pharmacological strategies. If more than one clinical phenotype is present, treatment strategy should follow the expression of each phenotypic label separately. In such patients, multicomponental therapeutic regimens are needed, resulting in fully individualized care. In the future, stronger measures against smoking, improvements in occupational and environmental health, early diagnosis strategies, as well as biomarker identification for patients responsive to specific treatments are warranted. New classes of treatment (inhaled PDE3/4 inhibitors, single molecule dual bronchodilators, anti-inflammatory drugs, gene editing molecules or new bronchoscopic procedures) are expected to enter the clinical practice in a very few years.


Assuntos
Broncodilatadores/normas , Assistência Centrada no Paciente/normas , Fenótipo , Guias de Prática Clínica como Assunto , Doença Pulmonar Obstrutiva Crônica/diagnóstico , Doença Pulmonar Obstrutiva Crônica/genética , Doença Pulmonar Obstrutiva Crônica/terapia , Pneumologia/normas , Adulto , Idoso , Idoso de 80 Anos ou mais , Broncodilatadores/uso terapêutico , Doença Crônica/terapia , Estudos Transversais , República Tcheca , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Doença Pulmonar Obstrutiva Crônica/fisiopatologia
17.
Health Qual Life Outcomes ; 18(1): 312, 2020 Sep 22.
Artigo em Inglês | MEDLINE | ID: mdl-32962717

RESUMO

BACKGROUND: A valid measure to describe the most important needs and concerns of people with life-threatening illnesses is missing in Cyprus. Our aim was to adapt and test the cross-cultural validity and responsiveness of the Integrated Palliative care Outcome Scale (IPOS) in a cohort of Turkish speaking cancer patients. METHODS: The IPOS (English) patient-reported measure was translated into Turkish following published guidelines including, 2 independent forward, 2 independent blind backward translations, expert panel review by 7 members and field testing with 11 cognitive interviews (5 patients and 6 specialists) and final approval of the copyright holder. Consecutive cancer patients (n = 234) seen by the community palliative care services were recruited from Help Those with Cancer Society (KHYD); of those 82 were followed-up. The instrument was administered by personal interview. Confirmatory Factor Analysis was used to validate the factor structure of Turkish IPOS. Internal consistency reliability of the subscales was evaluated by Cronbach's alpha and Intraclass Correlation Coefficient respectively. Validity was assessed by calculating Pearson's correlation coefficient (r) between Turkish IPOS scores and Turkish version of EQ-5D-3L - a validated generic measure of health status developed by the EuroQol Group. RESULTS: Turkish IPOS is conceptually and semantically equivalent to the English version and linguistically valid. The CFA was inconclusive for the three factor structure due to low sample size, as the SRMR and CFI tests only approached the defined minimums warranting further investigation. There were low levels of missing values, and no ceiling or floor effects. The Physical (α = 0.91) and the Social and Quality of Care Issues (α = 0.75) sub-scales showed good internal consistencies, however Emotional sub-scale showed poor internal consistency (α = 0.64). The reliability of the Physical (ICC = 0.51, 0.45-0.56 95% CI) and Social Quality of Care Issues (ICC = 0.50, 0.42-0.57 95% CI) were moderate. Poor internal consistency (α =0.64) and reliability (ICC = 0.31, 0.24-0.39, 95% CI) was obtained for Emotional Subscale. Construct validity was evidenced through significant correlations in the predicted directions and strength with EQ-5D. Turkish IPOS showed higher needs and concerns in participants at more advanced stages than those at earlier stages of cancer. The standardized response mean (SRM) of - 0.94 suggested large internal responsiveness to clinical change. CONCLUSION: Turkish IPOS is a clear, relevant, acceptable measure and responsive to the needs and concerns of cancer patients, observing regional differences, it may have implications for use in other Turkish speaking communities. Future studies are needed to clarify the factor structure, assess its external responsiveness and to improve the properties of its Emotional subscale.


Assuntos
Cuidados Paliativos/normas , Medidas de Resultados Relatados pelo Paciente , Assistência Centrada no Paciente/normas , Psicometria/normas , Idoso , Comparação Transcultural , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , Neoplasias/terapia , Qualidade de Vida , Reprodutibilidade dos Testes , Traduções
18.
Afr J Prim Health Care Fam Med ; 12(1): e1-e11, 2020 Jul 27.
Artigo em Inglês | MEDLINE | ID: mdl-32787403

RESUMO

BACKGROUND: Primary health care (PHC) re-engineering forms a crucial part of South Africa's National Health Insurance (NHI), with pharmaceutical services and care being crucial to treatment outcomes. However, owing to a shortage of pharmacists within PHC clinics, task-shifting of the dispensing process to pharmacist's assistants and nurses is common practice. The implications of this task-shifting process on the provision of pharmaceutical services and care remains largely unstudied. AIM: The study aimed to explore the pharmacist-based, pharmacist's assistant-based and nurse-based dispensing models within the PHC setting. SETTING: The Nelson Mandela Bay Health District, South Africa. METHODS: A mixed methods approach was utilised comprising of Phase 1: a pharmaceutical services audit to analyse pharmaceutical service provision and Phase 2: semi-structured interviews to describe the pharmaceutical care provision within each dispensing model thematically. RESULTS: Pharmaceutical services partially fulfilled minimum standards within all models, however, challenges exist that limit the quality of these services. Phase 2 showed that the provision of pharmaceutical care within all models was restricted by context-related constraints, thus patient-centred activities to underpin pharmaceutical services were limited. CONCLUSION: Although pharmaceutical services may have been available for all models, compromised quality of these services impacted overall quality of care. Limited pharmaceutical care provision was evident within each dispensing model. The results raised concerns about the current utilisation of pharmacy personnel, including the pharmacist, within the PHC setting. Further opportunities exist, if constraints allow, for the pharmacist to contribute to better patient-centred care.


Assuntos
Instituições de Assistência Ambulatorial/organização & administração , Modelos Organizacionais , Assistência Centrada no Paciente/organização & administração , Assistência Farmacêutica/organização & administração , Atenção Primária à Saúde/organização & administração , Instituições de Assistência Ambulatorial/normas , Auditoria Clínica , Acessibilidade aos Serviços de Saúde , Humanos , Programas Nacionais de Saúde , Assistência Centrada no Paciente/normas , Assistência Farmacêutica/normas , Farmacêuticos/provisão & distribuição , Atenção Primária à Saúde/normas , África do Sul
19.
Pediatr Blood Cancer ; 67(11): e28665, 2020 11.
Artigo em Inglês | MEDLINE | ID: mdl-32827342

RESUMO

Recent clinical trials have moved iodine-131 (I-131) metaiodobenzylguanidine (MIBG) therapy into frontline management of high-risk neuroblastoma. With this expansion, it is reasonable to anticipate the need for intensive care level resuscitations. Radiation exposure remains the greatest risk to health care professionals managing these patients. We combined shock simulation scenario data with actual radiation dosimetry data to create a care model allowing for aggressive, prolonged in situ resuscitation of a critically ill pediatric patient after I-131 MIBG administration. This model will maintain a critical care provider's radiation level below 10% of the annual occupational dose limit (5 mSv, 500 mrem) per patient managed.


Assuntos
3-Iodobenzilguanidina/efeitos adversos , Estado Terminal/terapia , Radioisótopos do Iodo/efeitos adversos , Modelos Estatísticos , Neuroblastoma/radioterapia , Assistência Centrada no Paciente/normas , Exposição à Radiação/normas , 3-Iodobenzilguanidina/administração & dosagem , Criança , Cuidados Críticos/normas , Estado Terminal/epidemiologia , Feminino , Humanos , Infusões Intravenosas , Radioisótopos do Iodo/administração & dosagem , Michigan/epidemiologia , Prognóstico , Compostos Radiofarmacêuticos/administração & dosagem , Compostos Radiofarmacêuticos/efeitos adversos , Dosagem Radioterapêutica
20.
Endocrinol Metab Clin North Am ; 49(3): 553-564, 2020 09.
Artigo em Inglês | MEDLINE | ID: mdl-32741488

RESUMO

Pituitary tumors are common and require complex and sophisticated procedures for both diagnosis and therapy. To maintain the highest standards of quality, it is proposed to manage patients in pituitary tumors centers of excellence (PTCOEs) with patient-centric organizations, with expert clinical endocrinologists and neurosurgeons forming the core. That core needs to be supported by experts from different disciplines such as neuroradiology, neuropathology, radiation oncology, neuro-ophthalmology, otorhinolaryngology, and trained nursing. To provide high-level medical care to patients with pituitary tumors, PTCOEs further pituitary science through research publication, presentation of results at meetings, and performing clinical trials.


Assuntos
Adenoma/terapia , Institutos de Câncer , Neoplasias Hipofisárias/terapia , Adenoma/diagnóstico , Adenoma/epidemiologia , Institutos de Câncer/organização & administração , Institutos de Câncer/normas , Endocrinologia/organização & administração , Endocrinologia/normas , Humanos , Oncologia/organização & administração , Oncologia/normas , Assistência Centrada no Paciente/organização & administração , Assistência Centrada no Paciente/normas , Neoplasias Hipofisárias/diagnóstico , Neoplasias Hipofisárias/epidemiologia , Medicina de Precisão/normas , Controle de Qualidade , Qualidade da Assistência à Saúde/organização & administração , Qualidade da Assistência à Saúde/normas , Padrões de Referência
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