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1.
Osteoporos Int ; 32(8): 1567-1584, 2021 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-33501570

RESUMO

Patient information is important to help patients fully participate in their healthcare. Commonly accessed osteoporosis patient information resources were identified and assessed for readability, quality, accuracy and consistency. Resources contained inconsistencies and scored low when assessed for quality and readability. We recommend optimal language and identify information gaps to address. INTRODUCTION: The purpose of this paper is to identify commonly accessed patient information resources about osteoporosis and osteoporosis drug treatment, appraise the quality and make recommendations for improvement. METHODS: Patient information resources were purposively sampled and text extracted. Data extracts underwent assessment of readability (Flesch Reading Ease and Flesch-Kincaid Grade Level) and quality (modified International Patient Decision Aid Standards (m-IPDAS)). A thematic analysis was conducted, and keywords and phrases were used to describe osteoporosis and its treatment identified. Findings were presented to a stakeholder group who identified inaccuracies and contradictions and discussed optimal language. RESULTS: Nine patient information resources were selected, including webpages, a video and booklets (available online), from government, charity and private healthcare providers. No resource met acceptable readability scores for both measures of osteoporosis information and drug information. Quality scores from the modified IPDAS ranged from 21 to 64% (7-21/33). Thematic analysis was informed by Leventhal's Common-Sense Model of Disease. Thirteen subthemes relating to the identity, causes, timeline, consequences and controllability of osteoporosis were identified. Phrases and words from 9 subthemes were presented to the stakeholder group who identified a predominance of medical technical language, misleading terms about osteoporotic bone and treatment benefits, and contradictions about symptoms. They recommended key descriptors for providers to use to describe osteoporosis and treatment benefits. CONCLUSIONS: This study found that commonly accessed patient information resources about osteoporosis have highly variable quality, scored poorly on readability assessments and contained inconsistencies and inaccuracies. We produced practical recommendations for information providers to support improvements in understanding, relevance, balance and bias, and to address information gaps.


Assuntos
Osteoporose , Preparações Farmacêuticas , Compreensão , Humanos , Osteoporose/tratamento farmacológico , Leitura
2.
Gynecol Oncol ; 160(1): 24-31, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33160693

RESUMO

OBJECTIVE: Our objective was to investigate whether trial evidence showing that neoadjuvant chemotherapy is non inferior to primary surgery for the primary treatment of advanced ovarian cancer could be extrapolated to groups of patients that were not included in the trials. METHODS: Using a detailed retrospective cohort of all patients managed through a single tertiary hospital we carried out a propensity score analysis, principal component analysis, and cox proportional hazard analysis to compare survival in matched cohorts. RESULTS: A propensity score analysis showed that for at least 41% of all patients with advanced high-grade serous cancer neoadjuvant chemotherapy is non inferior to primary surgery (median survival primary surgery: 38 months, neoadjuvant chemotherapy: 35 months. P = 0.39). However, principal component analysis, supported by cox modelling, suggests that for some subgroups, including patients with subdiaphragmatic nodal disease, primary surgery may be associated with improved survival (HR 0.11, CI 0.026-0.48). CONCLUSIONS: We have shown that the findings of previous trials can be extrapolated to a wider population and that statistical modelling can be used to identify groups or patients who benefit from specific modalities of treatment.


Assuntos
Carcinoma Epitelial do Ovário/mortalidade , Carcinoma Epitelial do Ovário/terapia , Neoplasias Ovarianas/mortalidade , Neoplasias Ovarianas/terapia , Idoso , Carcinoma Epitelial do Ovário/tratamento farmacológico , Carcinoma Epitelial do Ovário/cirurgia , Estudos de Coortes , Inglaterra/epidemiologia , Feminino , Humanos , Pessoa de Meia-Idade , Terapia Neoadjuvante , Neoplasias Ovarianas/tratamento farmacológico , Neoplasias Ovarianas/cirurgia , Análise de Componente Principal , Pontuação de Propensão , Modelos de Riscos Proporcionais , Estudos Retrospectivos
3.
Osteoporos Int ; 31(10): 1837-1851, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-32500301

RESUMO

Decision aids (DAs) are evidence-based tools that support shared decision-making (SDM) implementation in practice; this study aimed to identify existing osteoporosis DAs and assess their quality and efficacy; and to gain feedback from a patient advisory group on findings and implications for further research. We searched multiple bibliographic databases to identify research studies from 2000 to 2019 and undertook an environmental scan (search conducted February 2019, repeated in March 2020). A pair of reviewers, working independently selected studies for inclusion, extracted data, evaluated each trial's risk of bias, and conducted DA quality assessment using the International Patient Decision Aid Standards (IPDAS). Public contributors (patients and caregivers with experience of osteoporosis and fragility fractures) participated in discussion groups to review a sample of DAs, express preferences for a new DA, and discuss plans for development of a new DA. We identified 6 studies, with high or unclear risk of bias. Across included studies, use of an osteoporosis DA was reported to result in reduced decisional conflict compared with baseline, increased SDM, and increased accuracy of patients' perceived fracture risk compared with controls. Eleven DAs were identified, of which none met the full set of IPDAS criteria for certification for minimization of bias. Public contributors expressed preferences for encounter DAs that are individualized to patients' own needs and risk. Using a systematic review and environmental scan, we identified 11 decision aids to inform patient decisions about osteoporosis treatment and 6 studies evaluating their effectiveness. Use of decision aids increased accuracy of risk perception and shared decision-making but the decision aids themselves fail to comprehensively meet international quality standards and patient needs, underpinning the need for new DA development.


Assuntos
Técnicas de Apoio para a Decisão , Osteoporose , Tomada de Decisões , Humanos , Osteoporose/diagnóstico , Osteoporose/tratamento farmacológico , Participação do Paciente
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