Measuring Digital Health Literacy, Why and how?

Digital health literacy or eHealth Literacy refers to a person’s ability to search, select, appraise and apply online health information or appropriately use digital health applications. In this presentation I will address the issue of measurement of these skills. First, we will explore why it is important to measure digital health literacy and discuss the different aims of measuring. Second, we will address some of the currently available instruments, including the oldest and most used instrument, the eHealth Literacy Scale or EHEALS Norman & Skinner, 2006 and some more recent instruments, including the eHealth Literacy Questionnaire, eHLQ Kayser et al. 2018 and the Digital Health Literacy Instrument, DHLI. Van der Vaart & Drossaert, 2017. Of each instrument, I will briefly discuss its underlying theory, some empirical findings, and its strengths and weaknesses. I will conclude with discussing some general challenges in measuring digital health literacy and directions for future research

Shared decision-making in palliative cancer care:a life span perspective

Background: Due to complex treatment decisions, shared decision-making is advocated for in elderly cancer patients and in palliative cancer care. However, the process of (shared) decision-making is not comprehensively understood in these groups. Studies suggest age-based differences in patients’ level of preferences and actual involvement. Methods: Patients with metastatic cancers (n = 77) were included in three age groups: ‘middle aged’ (40-64 years), ‘young elderly-’ (65-74 years) and ‘old elderly’ (≥ 75 years). A cross-sectional questionnaire assessed patients’ preferences (CPS), perceived involvement (PICS), level of information (decisional conflict scale) and self-efficacy in patient-physician interaction (PEPPI), health-related quality of life (EORTC QLQ-C30), loneliness and temporal perspective (TFS) as potential correlates. Findings: Χ2 testing revealed that preferences, perceived participation and degrees of concordance do not differ between age groups. A majority of patients preferred and perceived to be involved in decision-making. Nearly 20% of patients was less involved than preferred. Age related factors were not related to perceived and preferred decision-making, although ‘old elderly’ patients were less encouraged by their oncologist to talk about worries. Shared decision-making was more often perceived by women than men and was associated with higher levels of self-efficacy in communication with oncologists. Discussion: Age-related differences with regard to decision making preferences and perceived participation seemed to be cancelled out in palliative cancer care, probably due to near-to-death perception. If clinical practice aims to achieve higher concordance levels, patients’ preferences for involvement should be explicitly discussed. Increased attention to (older) patients’ psycho-social needs is suggested

Experiences of Self-Criticism and Self-Compassion in People Diagnosed With Cancer:A Multimethod Qualitative Study

Objective: Self-criticism is a self-condemning and self-compassion a supportive style of self-to-self relating. These concepts have increasingly been studied in people with cancer, but mainly with quantitative studies. This study is the first to explore how adult cancer patients experience self-criticism and self-compassion in the context of their illness. Design: A multimethod qualitative study design was used, combining individual and group semi-structured interviews. Participants were 26 people with cancer who familiarized themselves with the topic by doing various self-compassion exercises for 2 weeks prior to the interview. Individual and group interviews were analyzed together using thematic analysis. Results: Four themes regarding self-criticism were identified: (1) being harsh or strict with yourself, (2) feeling guilty or angry, (3) feeling useless or like a burden, (4) feeling ashamed and not wanting to show weakness. Six themes regarding self-compassion were identified: (1) being mild to yourself, (2) guarding your boundaries, (3) accepting the illness and limitations, (4) maintaining a positive perspective, (5) connecting to others, and (6) taking responsibility for your health. Conclusion: Our findings offer insights into practical and daily life experiences of self-criticism and self-compassion of people with cancer, which can aid the further development of theory, scales and interventions

Exploring facilitators and barriers to using a person centered care intervention in a nursing home setting

Person-centered care (PCC) interventions have the potential to improve resident well-being in nursing homes, but can be difficult to implement. This study investigates perceived facilitators and barriers reported by nursing staff to using a PCC intervention consisting of three components: assessment of resident well-being, planning of well-being support, and behavioral changes in care to support resident well-being. Our explorative mixed method study combined interviews (n = 11) with a longitudinal survey (n = 132) to examine which determinants were most prevalent and predictive for intention to use the intervention and actual implementation 3 months later (n = 63). Results showed that perceived barriers and facilitators were dependent on the components of the intervention. Assessment of resident well-being required a stable nursing home context and a detailed implementation plan, while planning of well-being support was impeded by knowledge. Behavioral changes in nursing care required easy integration in daily caring tasks and social support

Personalized surveillance and aftercare for non-metastasized breast cancer:the NABOR study protocol of a multiple interrupted time series design

Background: Follow-up of curatively treated primary breast cancer patients consists of surveillance and aftercare and is currently mostly the same for all patients. A more personalized approach, based on patients’ individual risk of recurrence and personal needs and preferences, may reduce patient burden and reduce (healthcare) costs. The NABOR study will examine the (cost-)effectiveness of personalized surveillance (PSP) and personalized aftercare plans (PAP) on patient-reported cancer worry, self-rated and overall quality of life and (cost-)effectiveness.Methods: A prospective multicenter multiple interrupted time series (MITs) design is being used. In this design, 10 participating hospitals will be observed for a period of eighteen months, while they -stepwise- will transit from care as usual to PSPs and PAPs. The PSP contains decisions on the surveillance trajectory based on individual risks and needs, assessed with the ‘Breast Cancer Surveillance Decision Aid’ including the INFLUENCE prediction tool. The PAP contains decisions on the aftercare trajectory based on individual needs and preferences and available care resources, which decision-making is supported by a patient decision aid. Patients are non-metastasized female primary breast cancer patients (N = 1040) who are curatively treated and start follow-up care. Patient reported outcomes will be measured at five points in time during two years of follow-up care (starting about one year after treatment and every six months thereafter). In addition, data on diagnostics and hospital visits from patients’ Electronical Health Records (EHR) will be gathered. Primary outcomes are patient-reported cancer worry (Cancer Worry Scale) and overall quality of life (as assessed with EQ-VAS score). Secondary outcomes include health care costs and resource use, health-related quality of life (as measured with EQ5D-5L/SF-12/EORTC-QLQ-C30), risk perception, shared decision-making, patient satisfaction, societal participation, and cost-effectiveness. Next, the uptake and appreciation of personalized plans and patients’ experiences of their decision-making process will be evaluated. Discussion: This study will contribute to insight in the (cost-)effectiveness of personalized follow-up care and contributes to development of uniform evidence-based guidelines, stimulating sustainable implementation of personalized surveillance and aftercare plans. Trial registration: Study sponsor: ZonMw. Retrospectively registered at ClinicalTrials.gov (2023), ID: NCT05975437.</p

Mammography: EUSOBI recommendations for women’s information

This paper summarises the basic information to be offered to women who undergo mammography. After a delineation of the general aim of early diagnosis of breast cancer, the main difference between screening mammography and diagnostic mammography is explained. The best time for scheduling mammography in fertile women is defined. The need to bring images and reports from the previous mammogram (and from other recent breast imaging examinations) is highlighted. The technique and procedure of mammography are briefly described with particular attention to discomfort and pain experienced by a fraction of women who undergo the test. Information is given on the recall during a screening program and on the request for further work-up after a diagnostic mammography. The logic of the diagnostic mammography report and of classification systems such as BI-RADS and R1-R5 is illustrated, and brief but clear information is given about the diagnostic performance of the test, with particular reference to interval cancers. Moreover, the breast cancer risk due to radiation exposure from mammography is compared to the reduction in mortality obtained with the test, and the concept of overdiagnosis is presented. Finally, five frequently asked questions are answered

Intent to use a web-based psychological intervention for partners of cancer patients:Associated factors and preferences

This study examined partners of cancer patients intention to use a web-based psychological intervention, their preferences regarding its preconditions, functionalities and topics, and factors related to their intention. One hundred and sixty-eight partners completed a questionnaire about these aspects. Forty-eight percent of the partners would (maybe) make use of a web-based intervention. Partners who intended to participate were significantly younger, used the Internet more often, and perceived more caregiver strain. Most partners preferred an intervention that takes less than 1 hour/week, lasts five weeks or more, and contains information and peer support. Half of the partners would like to receive online guidance