OBJECTIVE: Patients diagnosed with advanced larynx cancer face a decisional process in which they can choose between radiotherapy, chemoradiotherapy, or a total laryngectomy with adjuvant radiotherapy. Clinicians do not always agree on the best clinical treatment, making the decisional process for patients a complex problem.METHODS: Guided by the International Patient Decision Aid (PDA) Standards, we followed three developmental phases for which we held semi-structured in-depth interviews with patients and physicians, thinking-out-loud sessions, and a study-specific questionnaire. Audio-recorded interviews were verbatim transcribed, thematically coded, and analyzed. Phase 1 consisted of an evaluation of the decisional needs and the regular counseling process; phase 2 tested the comprehensibility and usability of the PDA; and phase 3 beta tested the feasibility of the PDA.RESULTS: Patients and doctors agreed on the need for development of a PDA. Major revisions were conducted after phase 1 to improve the readability and replace the majority of text with video animations. Patients and physicians considered the PDA to be a major improvement to the current counseling process.CONCLUSION: This study describes the development of a comprehensible and easy-to-use online patient decision aid for advanced larynx cancer, which was found satisfactory by patients and physicians (available on www.treatmentchoice.info). The outcome of the interviews underscores the need for better patient counseling. The feasibility and satisfaction among newly diagnosed patients as well as doctors will need to be proven. To this end, we started a multicenter trial evaluating the PDA in clinical practice (ClinicalTrials.gov Identifier: NCT03292341).LEVEL OF EVIDENCE: NA Laryngoscope, 129:2733-2739, 2019.
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BackgroundThe aim of this study was to describe barriers and facilitators for shared decision making (SDM) as experienced by older patients with multiple chronic conditions (MCCs), informal caregivers and health professionals.MethodsA structured literature search was conducted with 5 databases. Two reviewers independently assessed studies for eligibility and performed a quality assessment. The results from the included studies were summarized using a predefined taxonomy.ResultsOur search yielded 3838 articles. Twenty-eight studies, listing 149 perceived barriers and 67 perceived facilitators for SDM, were included. Due to poor health and cognitive and/or physical impairments, older patients with MCCs participate less in SDM. Poor interpersonal skills of health professionals are perceived as hampering SDM, as do organizational barriers, such as pressure for time and high turnover of patients. However, among older patients with MCCs, SDM could be facilitated when patients share information about personal values, priorities and preferences, as well as information about quality of life and functional status. Informal caregivers may facilitate SDM by assisting patients with decision support, although informal caregivers can also complicate the SDM process, for example, when they have different views on treatment or the patient’s capability to be involved. Coordination of care when multiple health professionals are involved is perceived as important.ConclusionsAlthough poor health is perceived as a barrier to participate in SDM, the personal experience of living with MCCs is considered valuable input in SDM. An explicit invitation to participate in SDM is important to older adults. Health professionals need a supporting organizational context and good communication skills to devise an individualized approach for patient care.
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BackgroundPeople from lower and middle socioeconomic classes and vulnerable populations are among the worst affected by the COVID-19 pandemic, thus exacerbating disparities and the digital divide.ObjectiveTo draw a portrait of e-services as a digital approach to support digital health literacy in vulnerable populations amid the COVID-19 infodemic, and identify the barriers and facilitators for their implementation.MethodsA scoping review was performed to gather published literature with a broad range of study designs and grey literature without exclusions based on country of publication. A search was created in Medline (Ovid) in March 2021 and translated to Medline, PsycINFO, Scopus and CINAHL with Full Text (EBSCOhost). The combined literature search generated 819 manuscripts. To be included, manuscripts had to be written in English, and present information on digital intervention(s) (e.g. social media) used to enable or increase digital health literacy among vulnerable populations during the COVID-19 pandemic (e.g. older adults, Indigenous people living on reserve).ResultsFive articles were included in the study. Various digital health literacy-enabling e-services have been implemented in different vulnerable populations. Identified e-services aimed to increase disease knowledge, digital health literacy and social media usage, help in coping with changes in routines and practices, decrease fear and anxiety, increase digital knowledge and skills, decrease health literacy barriers and increase technology acceptance in specific groups. Many facilitators of digital health literacy-enabling e-services implementation were identified in expectant mothers and their families, older adults and people with low-income. Barriers such as low literacy limited to no knowledge about the viruses, medium of contamination, treatment options played an important role in distracting and believing in misinformation and disinformation. Poor health literacy was the only barrier found, which may hinder the understanding of individual health needs, illness processes and treatments for people with HIV/AIDS.ConclusionsThe literature on the topic is scarce, sparse and immature. We did not find any literature on digital health literacy in Indigenous people, though we targeted this vulnerable population. Although only a few papers were included, two types of health conditions were covered by the literature on digital health literacy-enabling e-services, namely chronic conditions and conditions that are new to the patients. Digital health literacy can help improve prevention and adherence to a healthy lifestyle, improve capacity building and enable users to take the best advantage of the options available, thus strengthening the patient’s involvement in health decisions and empowerment, and finally improving health outcomes. Therefore, there is an urgent need to pursue research on digital health literacy and develop digital platforms to help solve current and future COVID-19-related health needs.
