Navigational health literacy among people with chronic illness

Objectives People with chronic illness are particularly dependent on navigating and using the health care system. This requires navigational health literacy (HL-NAV). The article aims to examine the distribution and predictors of HL-NAV in a sample of chronically ill individuals. Methods Data of 1,105 people with chronic illness from the general population in Germany were collected in December 2019 and January 2020. HL-NAV was assessed by 12 items (score 0–100). Bivariate and multiple linear regression analysis were performed. Results HL-NAV score was 39.1 (SD 27.3). In bivariate analyses, HL-NAV was lower among chronically ill persons aged 65 or above, with low education, limited functional health literacy, low social status, financial deprivation, poor social support, multiple chronic conditions, and an illness duration of 6–10 years. In multivariate analyses, advanced age, lower education, less functional health literacy, lower social status, and less social support remained associated with lower HL-NAV. Discussion The results underline the importance of promoting HL-NAV among people with chronic illness. Strategies should aim at strengthening individual competencies taking into account the social and situational factors but also at reducing the demands placed on chronically ill people by providing user-friendly and trustworthy information on the health care system along the illness trajectory.

Eliciting patients’ healthcare goals and concerns: Do questions influence responses?

There is increasing interest in asking patients questions before their visits to elicit goals and concerns, which is part of the move to support the concept of coproducing care. The phrasing and delivery of such questions differs across settings and is likely to influence responses. This report describes a study that (i) used a three-level model to categorize the goals and concerns elicited by two different pre-visit questions, and (ii) describes associations between responses elicited and the phrasing and delivery of the two questions. The questions were administered to patients with rheumatic disease, and patients with inflammatory bowel disease (IBD). Paper-based responses from 150 patients with rheumatic disease and 338 patients with IBD were analyzed (163 paper, 175 electronic). The goals and concerns elicited were primarily disease or symptom-specific. The specific goal and concern examples featured in one pre-visit question were more commonly reported in responses to that question, compared to the question without examples. Questions completed electronically before the visit were associated with longer responses than those completed on paper in the waiting room. In conclusion, how and when patients’ goals and concerns are elicited appears to have an impact on responses and warrants further investigation.

A survey study of adults with chronic conditions: Examining the correlation between patient activation and health locus of control

Objectives This study aimed to examine (1) the association between patient activation (PA), health locus of control (HLOC), sociodemographic and clinical factors, and (2) the effect of HLOC dimensions, sociodemographic and clinical factors on PA. Methods Three hundred U.S. adults, with at least one chronic condition (CC) were recruited through Amazon Mechanical Turk and completed an online survey which included sociodemographic questions, the Patient Activation Measure® - 10, and the Multidimensional Locus of Control (MHLC) - Form B. Statistical analyses, including descriptive, correlation, and multiple linear regression, were conducted using IBM SPSS v25. Results Of the 300 participants, more than half were male (66.3%), White (70.7%), with at least a college degree (76.0%), and employed full-time (79.0%). The average PA score was 68.8 ± 14.5. Multiple linear regression indicated that participants who reported they were Black, retired, with a greater number of CCs, and with higher scores in Chance MHLC had higher PA, while participants with higher scores in Internal MHLC, were unemployed and reported to have been affected by COVID-19-related worry or fear to manage their CC, had lower PA. Discussion HLOC dimensions should be addressed concurrently with PA for patients with CCs, thus adding to a more patient-centered clinical approach.

Impact of COVID-19 on perceived wellbeing, self-management and views of novel modalities of care among medically vulnerable patients in Singapore

Objectives This study aims to examine the impact of COVID-19 measures on wellbeing and self-management in medically vulnerable non-COVID patients and their views of novel modalities of care in Singapore. Methods Patients with cardiovascular disease (CVD), respiratory disease, chronic kidney disease, diabetes and cancer were recruited from the SingHealth cluster and national cohort of older adults. Data on demographics, chronic conditions and perceived wellbeing were collected using questionnaire. We performed multivariable regression to examine factors associated with perceived wellbeing. Qualitative interviews were conducted to elicit patient's experience and thematically analyzed. Results A total of 91 patients participated. Male patients compared with female patients perceived a lower impact of the pandemic on subjective wellbeing. Patients with CVD compared to those having conditions other than CVD perceived a lower impact. Impacts of the pandemic were primarily described in relation to emotional distress and interference in maintaining self-care. Hampering of physical activity featured prominently, but most did not seek alternative ways to maintain activity. Despite general willingness to try novel care modalities, lack of physical interaction and communication difficulties were perceived as main barriers. Discussion Findings underline the need to alleviate emotional distress and develop adaptive strategies to empower patients to maintain wellbeing and self-care.

Patient, carer and healthcare professional perspectives on increasing calorie intake in Amyotrophic Lateral Sclerosis

Objectives Research suggests that higher Body Mass Index is associated with improved survival in people with Amyotrophic Lateral Sclerosis (pwALS). Yet, understanding of the barriers and enablers to increasing calorie intake is limited. This study sought to explore these issues from the perspective of pwALS, informal carers, and healthcare professionals. Methods Interviews with 18 pwALS and 16 informal carers, and focus groups with 51 healthcare professionals. Data were analysed using template analysis and mapped to the COM-B model and Theoretical Domains Framework (TDF). Results All three COM-B components (Capability, Opportunity and Motivation) are important to achieving high calorie diets in pwALS. Eleven TDF domains were identified: Physical skills (ALS symptoms); Knowledge (about high calorie diets and healthy eating); Memory, attention, and decision processes (reflecting cognitive difficulties); Environmental context/resources (availability of informal and formal carers); Social influences (social aspects of eating); Beliefs about consequences (healthy eating vs. high calorie diets); Identity (interest in health lifestyles); Goals (sense of control); Reinforcement (eating habits); and Optimism and Emotion (low mood, poor appetite). Discussion To promote high calorie diets for pwALS, greater clarity around the rationale and content of recommended diets is needed. Interventions should be tailored to patient symptoms, preferences, motivations, and opportunities.

Experiences of Participants Who Then Become Coaches in a Peer Coach Diabetes Self-Management Program: Lessons for Future Programs

Objectives Peer support programs are effective in improving outcomes among low-resource populations. Prior studies suggest that shared experiences improve peer partnerships. We hypothesized that participants in a peer coaching program who then became coaches might bring insight into their coaching role. We explored the motivations of coaches in a diabetes self-management coaching program who became coaches after completing the program as participants. Methods Between June 2016 and April 2017 we conducted semi-structured interviews with eight participants-turned-coaches and four of their peer partners in a six-month peer coaching program for patients with poor glycemic control at the Detroit VA. The interviews were transcribed, reviewed and coded by two researchers in an iterative process until consensus was reached. Key themes were identified and analyzed. Results Participants-turned-coaches reported the importance of their own peer coach in their decision to become a coach. Participants-turned-coaches described commitment to their partners, providing realistic encouragement, and fostering a reciprocal partnership. Participants-turned-coaches shared their own difficulties to motivate their partners and create a sense of commonality. Discussion Encouraging participants who complete diabetes peer coach interventions to become coaches appears to be a useful strategy for developing peer coaches who bring sensitivity, commitment, and reciprocity to their role.

Health Care Professionals’ Experiences of Facilitating Patient Activation and Empowerment in Chronic Illness using a Person-Centered and Strengths-Based Self-Management Program

Objective Patients with chronic illness who are empowered and activated are more likely to engage in self-management in order to stabilise their condition and enhance their quality of life. This study aimed to explore Health Care Professional's (HCP) assessment of a person-centered intervention called ‘The Bodyknowledging Program’ (BKP) for the facilitation of empowerment and patient activation in the context of chronic illness. Methods This study employed a qualitative process evaluation after programme completion. Data was collected through focus-groups and individual interviews with HCPs and content analysis was used in the analysis. Results Four themes were identified: 1) Shifts towards the patient-perspective, 2) The value of a patient-centered conceptual framework, 3) Patient activation through dialogue based support and 4) Challenging competencies. Discussion: This study introduces ‘The Bodyknowledging Program’ as a useful tool to uncover patients’ needs and to activate and empower them to take more responsibility for their health through self-care management. The usability of the new intervention depends on HCP's ability to develop their counselling skills and changing their approach towards utilising patients’ individual resources in the promotion of their health.

Designing an mHealth Roadmap for the Journey to Self-Management: A Qualitative Study with Adolescents and Young Adults Living with Chronic Illness

Objectives Adolescents and young adults (AYA) with chronic illnesses often struggle with illness self-management. The objective of this study is to understand how AYA with various chronic illnesses develop self-management skills and which mobile health (mHealth) strategies they believe could be helpful. Methods Semi-structured interviews were conducted with patients, between 16 to 20 years old, living with at least one chronic illness (N = 19), between 2018 and 2019 in Los Angeles, CA. Three coders completed thematic coding to understand how AYA develop and maintain self-management skills, to inform the development of mHealth interventions appropriate across a variety of chronic conditions. Results Results suggest that AYA develop self-management skills through several strategies, including (1) getting organized, (2) making it work for me and (3) keeping the right mentality. AYA described developing these strategies through: (1) receiving social support, (2) accessing helpful tools and technologies, and (3) going through a maturation process. They provided recommendations for mHealth intervention developers. Discussion The results suggest that an appealing mHealth intervention could support AYA patients in proactively acquiring self-management skills and prevent having to rely on trial and error or uneven access to guidance and support. Interventions should be responsive to individual technology preferences and practices.

Machine learning-based patient classification system for adults with stroke: A systematic review

Objective To evaluate the existing evidence of a machine learning-based classification system that stratifies patients with stroke. Methods The authors carried out a systematic review following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) recommendations for a review article. PubMed, MEDLINE, Web of Science, and CINAHL Plus Full Text were searched from January 2015 to February 2021. Results There are twelve studies included in this systematic review. Fifteen algorithms were used in the included studies. The most common forms of machine learning (ML) used to classify stroke patients were the support vector machine (SVM) (n = 8 studies), followed by random forest (RF) (n = 7 studies), decision tree (DT) (n = 4 studies), gradient boosting (GB) (n = 4 studies), neural networks (NNs) (n = 3 studies), deep learning (n = 2 studies), and k-nearest neighbor (k-NN) (n = 2 studies), respectively. Forty-four features of inputs were used in the included studies, and age and gender are the most common features in the ML model. Discussion There is no single algorithm that performed better or worse than all others at classifying patients with stroke, in part because different input data require different algorithms to achieve optimal outcomes.

Healthcare providers perception of therapeutic patient education efficacy according to patient and healthcare provider characteristics

Objectives Therapeutic patient education improves numerous health and psychological outcomes in patients with chronic diseases. However, little is known about what makes a therapeutic patient education intervention more effective than another one. This study aims to identify in healthcare professionals the perceived determinants of therapeutic patient education efficacy at the individual level. Methods Semi-structured individual interviews have been conducted with healthcare professionals (HCP, n=28, including 20 nurses) involved in therapeutic patient education programs ( n=14) covering various chronic conditions (kidney and cardiovascular diseases, chronic pain, diabetes, etc.). A thematic content analysis following an inductive approach was used (Nvivo.11 software). Results Five themes were retrieved for patient characteristics: understanding and education, personality, readiness and motivation, social environment, and misinformation and beliefs. Four themes were retrieved for healthcare professionals’ characteristics: medical knowledge, appropriate attitude and relational skills, pedagogical skills, and training. Discussion Patient personality is rarely discussed in the literature. Patients who are introverted, lack curiosity, or are not compliant might benefit from specific therapeutic patient education practices or formats. All these potential determinants regarding patients and healthcare professionals should be routinely assessed in future studies about therapeutic patient education efficacy to understand precisely what makes an intervention successful.