Health Literacy: Read All about It …

Horgan, Denis; Bolanos, Natacha; Mastris, Ken; Mendão, Luís; Malats, Núria

doi:10.1159/000481129

Cited by 3 publications

(1 citation statement)

References 5 publications

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“…Meanwhile, the nursing staff, as health educators, palliative caregivers and medical information conveyer, should also be actively involved in the medical decision-making work, aiming to provide high-quality palliative care. Obviously, healthcare professionals are trained to be expert in planning treatment regimens, yet patients are more aware of their lifestyle, environment, financial situation and how much they can rely on home care resources [ 46 ]. As a result, the shared decision-making model is becoming more and more important in modern medicine.…”

Section: Countermeasures To Promote Palliative Care In Asiamentioning

confidence: 99%

Palliative Care for Cancer Patients in Asia: Challenges and Countermeasures

Wang,

Zhang,

Huang

et al. 2024

Oncol Rev.

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With the increasing incidence of cancer worldwide, palliative care has become an effective intervention to relieve cancer patients’ pain and improve their quality of life, although the present development of palliative medicine and hospice care in many Asian countries remains insufficient. To this end, this review comprehensively discussed the main challenges that influence the promotion of palliative medicine, from the perspective of both healthcare professionals and cancer patients. We further proposed and summarized a series of potentially effective countermeasures and solutions, including the shared decision-making modal, multidisciplinary professional cooperation, application of modern science and technology, standardization training for medical workers, personalized palliative treatment regimens, and others, aiming to improve the clinical quality of palliative care practice for cancer patients and promote the development of palliative medicine in Asian regions.

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Section: Countermeasures To Promote Palliative Care In Asiamentioning

confidence: 99%

Palliative Care for Cancer Patients in Asia: Challenges and Countermeasures

Wang,

Zhang,

Huang

et al. 2024

Oncol Rev.

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Awareness of individual goals, preferences, and priorities of persons with severe congenital haemophilia A for a tailored shared decision-making approach to liver-directed gene therapy. A practical guideline

Di Minno,

Spadarella,

Maldonato

et al. 2023

Blood Reviews

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The Hemophilia Gene Therapy Patient Journey: Questions and Answers for Shared Decision-Making

Wang¹,

Négrier²,

Drießler³

et al. 2022

PPA

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Purpose The anticipated emergence of hemophilia gene therapy will present people with hemophilia (PWH) and treating clinicians with increasingly complex treatment options. It will be critical that PWH and their families be empowered to participate fully in decision-making through transparent communication and the development of targeted educational resources. Methods The Council of Hemophilia Community (CHC) convened across a series of roundtable meetings to define the patient journey for hemophilia gene therapy, and to develop a question-and-answer style resource to guide discussion between healthcare professionals (HCPs) and their patients. Patient groups were also consulted during the development of this tool. Results The CHC defined 5 key stages in the hemophilia gene therapy patient journey: pre-gene therapy (information-seeking and decision-making), treatment initiation, short- and long-term post-gene therapy follow-up. PWH will have different questions and concerns at each stage of their journey, which should be discussed with their HCP to aid decision-making. The resulting patient journey infographic and Q&A resource (see Supplementary Materials ) has been developed for HCPs and PWH to provide a novel and practical roadmap of key issues and considerations throughout all stages. Conclusion These resources support a collaborative, patient-centric, shared decision-making approach to inform treatment decision discussions between HCPs and PWH. The value of such discussions will be influenced by the language adopted; health literacy is a particularly important consideration, and these discussions should be accessible and tailored to PWH. HCPs and PWH can benefit from awareness of the common questions and uncertainties as they progress together along the patient journey. While the contents of this article are specific to hemophilia gene therapy, the concepts developed here could be adapted to aid patients in other disease states.

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Health Literacy: Read All about It …

Cited by 3 publications

References 5 publications

Palliative Care for Cancer Patients in Asia: Challenges and Countermeasures

Palliative Care for Cancer Patients in Asia: Challenges and Countermeasures

Awareness of individual goals, preferences, and priorities of persons with severe congenital haemophilia A for a tailored shared decision-making approach to liver-directed gene therapy. A practical guideline

The Hemophilia Gene Therapy Patient Journey: Questions and Answers for Shared Decision-Making

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