Harding Richard, Salins Naveen, Sharan Krishna, Ekstrand Maria L
Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Florence Nightingale School of Nursing, Midwifery and Palliative Care, King's College London, London, UK.
Department of Palliative Medicine and Supportive Care, Kasturba Medical College Manipal, Manipal Academy of Higher Education, Manipal, Karnataka, India.
Psychooncology. 2022 Mar;31(3):532-540. doi: 10.1002/pon.5838. Epub 2021 Nov 3.
Cancer patients in India prefer full information regarding diagnosis and prognosis, but evidence suggests poor insight. This study aimed to identify the role of health literacy among adult patients living with cancer, their families and health professionals in decision-making and treatment outcomes in India.
This cross-sectional in-depth study recruited patients, families and clinicians from three centers. Inductive thematic analysis informed a novel conceptual model.
We recruited n = 34 cancer patients, n = 33 family members, n = 11 doctors and n = 14 nurses (N = 92). Principle emergent themes were the following: (1) Preferences and dynamics of diagnosis and prognosis disclosure, for example, the dominant preference was for families who held hope for cure to discourage disclosure; clinicians sometimes disclosed in line with perceived ability to pay for treatment. (2) Understanding of disease and its treatment options (etiology, potential trajectory, treatment options), for example, lay understandings of cancer etiology as contamination from outside the home, and reluctance of patients to ask questions of clinicians. (3) Priorities in decision-making, for example, not engaging patients due to fear of patient distress, patients initiated on anticancer treatments without knowledge or consent, pursuing futile treatments. (4) Anxieties over finances and outcomes (disclosure, decision-making, care pathways), for example, clinicians attempting to reduce families pursuing expensive and inappropriate treatment options with patients who have poor insight, catastrophic spending based on poor decisions.
The novel evidence-based health literacy model offers potential for feasible and acceptable intervention to support families in communication, disclosure and decision-making. This may improve patients' access to informed, appropriate care pathways.
印度癌症患者倾向于全面了解诊断和预后信息，但有证据表明他们的认知不足。本研究旨在确定癌症成年患者、其家人及医疗专业人员的健康素养在印度的决策制定和治疗结果中的作用。
这项横断面深入研究从三个中心招募了患者、家属和临床医生。归纳主题分析形成了一个新颖的概念模型。
我们招募了n = 34名癌症患者、n = 33名家庭成员、n = 11名医生和n = 14名护士（N = 92）。主要出现的主题如下：（1）诊断和预后披露的偏好及动态，例如，主要偏好是那些对治愈抱有希望的家庭不鼓励披露；临床医生有时会根据对治疗支付能力的认知来披露信息。（2）对疾病及其治疗选择的理解（病因、潜在病程、治疗选择），例如，普通民众将癌症病因理解为来自家庭外部的污染，以及患者不愿向临床医生提问。（3）决策制定中的优先事项，例如，因担心患者痛苦而不让患者参与，患者在不知情或未获同意的情况下开始接受抗癌治疗，进行无效治疗。（4）对财务和结果的焦虑（披露、决策制定、护理途径），例如，临床医生试图减少家庭为认知不足的患者寻求昂贵且不适当的治疗选择，因决策不当导致灾难性支出。
基于证据的新颖健康素养模型为支持家庭进行沟通、披露和决策制定提供了可行且可接受的干预潜力。这可能会改善患者获得知情、适当护理途径的机会。
