Quality Appraisal of Quality of Life Research in Children and Adolescents with Food Allergy: A Systematic Review.

INTRODUCTION: Quality of life (QOL) and health-related quality of life (HRQOL) in children and adolescents with food allergies have been an important and steadily growing field of research for the past 20 years. There seem to be conceptual and methodological challenges that might influence the face validity of QOL and HRQOL research in general health research, but this has not been investigated in pediatric and adolescent food allergy research up until now. The aim of this study was to perform a systematic review of the QOL and HRQOL studies on food allergy in children and adolescents under the age of 18. METHODS: The systematic review was conducted on studies purporting to measure QOL or HRQOL in children and adolescents with food allergies. The literature search was developed in Ovid MEDLINE and databases used in the review were Embase, Cochrane Database of Systematic Reviews, CINAHL, and Scopus. Studies were evaluated based on a set of face validity criteria developed by Gill and Feinstein in 1994 and refined by Moons et al. in 2004. RESULTS: Out of 61 studies eligible for the review, 11 (18%) defined QOL or HRQOL and two distinguished QOL from HRQOL. The Food Allergy Quality of Life (FAQLQ) instrument series is the most frequently used HRQOL measurement among the studies included. QOL and HRQOL were employed interchangeably in half of the studies, some of them also using a third term in addition. CONCLUSION: Our findings lead to the conclusion that the research field investigated contains methodological and conceptual shortcomings regarding QOL and HRQOL. An increased awareness toward the terminology as well as consideration of points to reflect upon will be beneficial, as this will also improve the validity of future studies.

Profiles of health literacy and digital health literacy in clusters of hospitalised patients: a single-centre, cross-sectional study.

OBJECTIVE: To investigate health literacy (HL) and digital health literacy (eHL) among patients hospitalised in surgical and medical wards using a cluster analysis approach. DESIGN: Cross-sectional study using Ward's hierarchical clustering method to measure cluster adequacy by evaluating distances between cluster centroids (a measure of cohesion). Different distances produced different cluster solutions. SETTING AND PARTICIPANTS: The study was conducted at a Norwegian university hospital. A total of 260 hospitalised patients were enrolled between 24 May and 6 June 2021. DATA COLLECTION: All data were collected by self-reported questionnaires. Data on HL and eHL were collected by the Health Literacy Questionnaire (HLQ) and the eHealth Literacy Questionnaire (eHLQ). We also collected data on background characteristics, health status and patient diagnosis. RESULTS: We found six HLQ clusters to be the best solution of the sample, identifying substantial diversity in HL strengths and challenges. Two clusters, representing 21% of the total sample, reported the lowest HLQ scores in eight of nine HLQ domains. Compared with the other clusters, these two contained the highest number of women, as well as the patients with the highest mean age, a low level of education and the lowest proportion of being employed. One of these clusters also represented patients with the lowest health status score. We identified six eHL clusters, two of which represented 31% of the total sample with the lowest eHLQ scores in five of seven eHLQ domains, with background characteristics comparable to patients in the low-scoring HLQ clusters. CONCLUSIONS: This study provides new, nuanced knowledge about HL and eHL profiles in different clusters of patients hospitalised in surgical and medical wards. With such data, healthcare professionals can take into account vulnerable patients' HL needs and tailor information and communication accordingly.

Adolescent Cancer Survivors and Their Parents' Experiences With the Transition Off Treatment to Survivorship: A Qualitative Interview Study.

Background: Transitioning from active cancer treatment to survivorship represents a vulnerable yet underresearched phase for adolescents and their families. Knowledge of their support needs, the challenges they experience, and how they manage them are useful to inform tailored follow-up care. Thus, we aimed to explore their transition experiences. Method: We interviewed 15 adolescents (12-19 years) who had transitioned off of treatment 1 to 47 months prior at Oslo University Hospital's Department of Paediatric Haematology and Oncology and their biological parents (n = 16). The interviews were analyzed using inductive, reflexive thematic analysis inspired by Braun and Clarke. NVivo-12 was used for data management. Results: Four main themes were identified: (a) consequences of cancer beyond transition, (b) transition back to normalcy, (c) survivorship competence, and (d) changes in roles and relationships. The families described happiness and relief but also said that the lingering effects of cancer treatment had a profound impact on day-to-day living. The adolescents expressed closeness with and dependency on their parents, and they perceived family and friends as essential for social readjustment. Discussion: Although adolescent survivors and their parents described a wide variety of strategies for returning to "normalcy," their perspectives also illustrate ongoing psychosocial and educational support needs that changed over time. Our findings indicate a need for improved preparation for and support through the transition. Nurses are well positioned to provide continuous and structured transition support tailored to the needs of the individual survivors and their families.

Effectiveness of a health communication intervention on health literacy in the first year following kidney transplantation - A randomized controlled study.

OBJECTIVE: This study aimed to evaluate the effect of a new health communication intervention focusing on knowledge management skills on health literacy and medication adherence during the first year following kidney transplantation. METHODS: We randomized 195 patients during 2020-2021, to either intervention- or control group. Questionnaires were completed at baseline and at 12 months post-transplantation with a 12-month response rate of 84%. Health literacy was measured by the multidimensional Health Literacy Questionnaire (HLQ) instrument. Medication adherence was measured by the self-reported questionnaire (BAASIS©). RESULTS: Results showed that the intervention group had a significant increase in 2 HLQ domains compared to the control group capturing the "ability to appraise health information" Domain 5, (p-value = 0.002) and the "ability to navigate the healthcare system" Domain 7, (p-value <0.04). The effect sizes of SRM were 0.49 (Domain 5) and 0.33 (Domain 7). Medication adherence was comparable in the groups at any measure points. CONCLUSIONS: This study contributes to important knowledge about how a health communication intervention focusing on knowledge translation using motivational interviewing techniques positively strengthens health literacy in kidney transplant recipients. PRACTICAL IMPLICATIONS: Current patient education practice may benefit from focusing on knowledge translation in combination with motivational interview technique.

Impacts of a health literacy-informed intervention in people with chronic obstructive pulmonary disease (COPD) on hospitalization, health literacy, self-management, quality of life, and health costs - A randomized controlled trial.

OBJECTIVE: To compare the effect of motivational interviewing (MI) and tailored health literacy (HL) follow-up with usual care on hospitalization, costs, HL, self-management, Quality of life (QOL), and psychological stress in people with chronic obstructive pulmonary disease (COPD). METHODS: A RCT was undertaken in Norway between March 2018-December 2020 (n = 127). The control group (CG, n = 63) received usual care. The intervention group (IG, n = 64) received tailored HL follow-up from MI-trained COPD nurses with home visits for eight weeks and phone calls for four months after hospitalization. Primary outcomes were hospitalization at eight weeks, six months, and one year from baseline. The trial was registered with ClinicalTrials.gov (NCT03216603) and analysed per protocol. RESULTS: Compared with the IG, the CG had 2.8 higher odds (95% CI [1.3 to 5.8]) of hospitalization and higher hospital health costs (MD=€ -6230, 95% CI [-6510 to -5951]) and lower QALYs (MD=0.1, 95% CI [0.10 to 0.11]) that gives an ICER = - 62,300. The IG reported higher QOL, self-management, and HL (p = 0.02- to <0.01). CONCLUSION: MI-trained COPD nurses using tailored HL follow-up is cost-effective, reduces hospitalization, and increases QOL, HL, and self-care in COPD. PRACTICE IMPLICATION: Tailored HL follow-up is beneficial for individuals with COPD and the healthcare system.

Implementation of advance care planning in the routine care for acutely admitted patients in geriatric units: protocol for a cluster randomized controlled trial.

BACKGROUND: Acutely ill and frail older adults and their next of kin are often poorly involved in treatment and care decisions. This may lead to either over- or undertreatment and unnecessary burdens. The aim of this project is to improve user involvement and health services for frail older adults living at home, and their relatives, by implementing advance care planning (ACP) in selected hospital wards, and to evaluate the clinical and the implementation interventions. METHODS: This is a cluster randomized trial with 12 hospital units. The intervention arm receives implementation support for 18 months; control units receive the same support afterwards. The ACP intervention consists of 1. Clinical intervention: ACP; 2. Implementation interventions: Implementation team, ACP coordinator, network meetings, training and supervision for health care personnel, documentation tools and other resources, and fidelity measurements with tailored feedback; 3. Implementation strategies: leadership commitment, whole ward approach and responsive evaluation. Fidelity will be measured three times in the intervention arm and twice in the control arm. Here, the primary outcome is the difference in fidelity changes between the arms. We will also include 420 geriatric patients with one close relative and an attending clinician in a triadic sub-study. Here, the primary outcomes are quality of communication and decision-making when approaching the end of life as perceived by patients and next of kin, and congruence between the patient's preferences for information and involvement and the clinician's perceptions of the same. For patients we will also collect clinical data and health register data. Additionally, all clinical staff in both arms will be invited to answer a questionnaire before and during the implementation period. To explore barriers and facilitators and further explore the significance of ACP, qualitative interviews will be performed in the intervention units with patients, next of kin, health care personnel and implementation teams, and with other stakeholders up to national level. Lastly, we will evaluate resource utilization, costs and health outcomes in a cost-effectiveness analysis. DISCUSSION: The project may contribute to improved implementation of ACP as well as valuable knowledge and methodological developments in the scientific fields of ACP, health service research and implementation science. TRIAL REGISTRATION: ClinicalTrials.gov Identifier NCT05681585. Registered 03.01.23.

eHealth literacy among hospital health care providers: a systematic review.

BACKGROUND: eHealth literacy is a key concept in the implementation of eHealth resources. However, most eHealth literacy definitions and frameworks are designed from the perceptive of the individual receiving eHealth care, which do not include health care providers' eHealth literacy or acceptance of delivering eHealth resources. AIMS: To identify existing research on eHealth literacy domains and measurements and identify eHealth literacy scores and associated factors among hospital health care providers. METHODS: This systematic review was reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 checklist. A systematic literature search was conducted in MEDLINE, Cinahl, Embase, Scopus, PEDro, AMED and Web of Science. Quantitative studies assessing eHealth literacy with original research, targeting hospital health care providers were included. Three eHealth literacy domains based on the eHealth literacy framework were defined a priori; (1) Individual eHealth literacy, (2) Interaction with the eHealth system, and (3) Access to the system. Pairs of authors independently assessed eligibility, appraised methodological quality and extracted data. RESULTS: Fourteen publications, of which twelve publications were conducted in non-Western countries, were included. In total, 3,666 health care providers within eleven different professions were included, with nurses being the largest group. Nine of the included studies used the eHealth literacy scale (eHEALS) to measure eHealth literacy, representing the domain of individual eHealth literacy. A minority of the studies covered domains such as interaction with the eHealth system and access to the system. The mean eHEALS score in the studies ranged from 27.8 to 31.7 (8-40), indicating a higher eHealth literacy. One study reported desirable eHealth literacy based on the Digital Health Literacy Instrument. Another study reported a relatively high score on the Staff eHealth literacy questionnaire. eHealth literacy was associated with socio-demographic factors, experience of technology, health behaviour and work-related factors. CONCLUSIONS: Health care providers have good individual eHealth literacy. However, more research is needed on the eHealth literacy domains dependent on interaction with the eHealth system and access to the system. Furthermore, most studies were conducted in Eastern and Central-Africa, and more research is thus needed in a Western context. TRIAL REGISTRATION: PROSPERO International Prospective Register of Systematic Reviews (CRD42022363039).

Health literacy in individuals with knee pain-a mixed methods study.

BACKGROUND: Low health literacy is associated with worse pain and poorer self-management. This study (1) examined the level of health literacy and associations with lifestyle habits, health status, chronic pain, and radiographic knee osteoarthritis; and (2) explored experiences illuminating health literacy among individuals with knee pain. METHODS: A convergent parallel mixed-methods design was used, including 221 individuals. Health literacy was assessed by HLS-EU-Q16 and eHEALS. The questionnaire included questions on lifestyle habits, health status, and pain distribution. Radiographic knee osteoarthritis was assessed with x-rays. Associations were analysed using logistic regression analyses. Individual semi-structured interviews were conducted (n = 19) and analysed with qualitative content analysis. RESULTS: The result showed that 71% reported sufficient health literacy. Higher education, healthy lifestyle habits, better general health, and absence of widespread pain were associated with sufficient health literacy. Experiences regarding health literacy influencing the decision-making process toward a decision on action comprised: (1) searching for information actively or passively; (2) processing of the information included being informed, critical, and interpretive; and (3) taking a stand on the information based on trustfulness and motivation. CONCLUSION: Seven out of 10 reported sufficient health literacy. Despite this, unhealthy lifestyles were common, suggesting that having sufficient HL is not enough for a behavioural change and the decision-making process, including different phases such as searching, processing, and taking a stand on health information is important to consider. More research on health literacy is needed to gain knowledge of how best to develop health promotion in individuals with knee pain.

Barriers and facilitators to implementing advance care planning in naïve contexts - where to look when plowing new terrain?

BACKGROUND: Advance care planning (ACP) is a way of applying modern medicine to the principle of patient autonomy and ensuring that patients receive medical care that is consistent with their values, goals and preferences. Robust evidence supports the benefits of ACP, but it remains an underutilized resource in most countries. This paper goes from the naïve point of view, and seeks to identify the barriers and facilitators to implementation in unfamiliarized contexts and in a whole system approach involving the clinical, institutional and policy level to improve the implementation of ACP. METHODS: Qualitative interviews were chosen to enable an explorative, flexible design. Qualitative interviews were conducted with 40 health care professionals and chief physicians in hospitals and in municipalities. The thematic analysis was done following Braun and Clarke's strategy for thematic analysis. RESULTS: The main reported barriers were the lack of time and space, a lack of culture and leadership legitimizing ACP, lack of common communication systems, and unclear responsibility about who should initiate, resulting in missed opportunities and overtreatment. Policy development, public and professional education, and standardization of documentation were reported as key to facilitate ACP and build trust across the health care system. CONCLUSIONS: Progressively changing the education of health professionals and the clinical culture are major efforts that need to be tackled to implement ACP in unfamiliarized contexts, particularly in contexts where patient's wishes are not legally binding. This will need to be tackled through rectifying the misconception that ACP is only about death, and providing practical training for health professionals, as well as developing policies and legislation on how to include patients and caregivers in the planning of care.

Developing and maintaining health literacy: A continuous emotional, cognitive, and social process for parents of children with epilepsy-A qualitative study.

Childhood epilepsy is often complicated by neurobehavioral comorbidities, and parents are expected to actively engage in managing the condition. Insufficient parental health literacy (HL) has been associated with reduced health outcomes for children with epilepsy. Little is known about the parents' experiences of information seeking, social support, navigating the healthcare system, and interactions with healthcare professionals and how these skills may contribute to the development of sufficient HL. This study explored parents' experiences of their caregiver responsibility and the development of their HL in relation to caring for their child with epilepsy. Ten parents of children under 12 years of age with epilepsy were purposedly sampled and interviewed individually, using semi-structured interviews. The interviews were analyzed using qualitative content analysis, in line with Graneheim & Lundman. The analyses resulted in three themes, each comprising two sub-themes. The themes were: (1) Alone with the responsibility, (2) The combat for information and support, and (3) Developing vigilance and distrust in system competence. Lack of flexibility in healthcare services, insufficient multidisciplinary collaboration, and unclear treatment provider responsibility made the parents feel alone in the caregiver's responsibility. Poor local provider competence related to childhood epilepsy was a barrier to developing sufficient HL. A trusting relationship with professionals and timely access to competent health services were facilitators for developing HL. Higher HL made the parents more critical for the healthcare services, which triggered vigilance and reduced their trust in the professionals' information. For the parents, developing and maintaining HL was a continuous emotional, cognitive, and social process. Health information and care support need to be adjusted to the severity of the child's condition, the resources are available, and the parent's HL. The results of this study may contribute to the development of future interventions for strengthening parental HL in the childhood epilepsy context.

The Parent Health Literacy Questionnaire (HLQ-Parent). Adaptation and validity testing with parents of children with epilepsy.

AIMS: The aim of this study was to adapt the Health Literacy Questionnaire (HLQ) in English and Norwegian for use with parents. METHODS: The research group evaluated all HLQ items and, where relevant, modified them to refocus the attribution of care to that of a child by a parent. Five cognitive interviews with parents were undertaken to gain a detailed depiction of the meanings and processes they used to respond to the HLQ items. Assessment of the psychometric properties of the revised HLQ was undertaken using data from a cross-sectional survey of 254 parents of children with epilepsy. Analysis included internal consistency (Cronbach's alpha) and confirmatory factor analysis (CFA). RESULTS: Some 22 out of 44 items and the names of three domains were modified (e.g. attribution changed from 'me' to 'my child'). Cognitive interviews indicated that parents interpreted the HLQ-Parent items in the way intended. All but three factor loadings were high to acceptable. All nine HLQ scales showed satisfactory to good internal consistency (Cronbach's alpha 0.70 to 0.87). When fitting one-factor CFA models, correlated residuals were required for four scales to generate an acceptable fit. One scale, '8. Ability to find good health information', required inclusion of two correlated residuals to generate an acceptable CFA model fit, indicating that further work on this scale is warranted. CONCLUSIONS: The results from both the adaptation process and the CFA analysis supported the relevance, understanding and theoretical structure of the instrument in a parental context.

How to co-design a health literacy-informed intervention based on a needs assessment study in chronic obstructive pulmonary disease.

OBJECTIVE: To develop a co-designed health literacy (HL)-informed intervention for people with chronic obstructive pulmonary disease (COPD) that enables them to find, understand, remember, use and communicate the health information needed to promote and maintain good health. DESIGN: This study used a co-design approach informed by the programme logic of the Ophelia (Optimising Health Literacy and Access) process. The co-design included workshops where possible solutions for an HL-informed intervention were discussed based on an HL needs assessment study. SETTINGS: Five workshops were performed in a local community setting in the specialist and municipality healthcare services in Oslo, Norway. PARTICIPANTS: People with COPD, multidisciplinary healthcare professionals (HCPs) from the municipality and specialist healthcare services, and researchers (n=19) participated in the workshops. The co-designed HL-informed intervention was based on seven focus groups with people with COPD (n=14) and HCPs (n=21), and a cross-sectional study of people with COPD using the Health Literacy Questionnaire (n=69). RESULTS: The workshop co-design process identified 45 action points and 51 description points for possible intervention solutions to meet the HL needs of people with COPD. The final recommendation for an HL-informed intervention focused on tailored follow-up after hospitalisation, which uses motivational interviewing techniques, is based on the individual's HL, self-management and quality of life needs and is implemented in cooperation with HCPs in both the specialist and municipality healthcare services. CONCLUSION: During the codesign process, the workshop group generated several ideas for how to help patients find, understand, remember, use and communicate health information in order to promote and maintain good health. People with COPD need tailored follow-up based on their individual HL needs by HCPs that have knowledge of COPD and are able to motivate them for self-management tasks and help them to improve their quality of life (QOL) and decrease hospitalisation.

Neck and back pain: Differences between patients treated in primary and specialist health care.

OBJECTIVE: To describe and compare patients with neck and back pain treated by physiotherapists in primary healthcare (PHC) and in departments for physical medicine and rehabilitation in specialist healthcare (SHC) in Norway. DESIGN: Cross-sectional study using data from the FYSIOPRIM database in PHC and the Norwegian Neck and Back Registry in SHC. Neck and back pain patients in the period 2014-18 aged ≥ 18 years were included. Demographics, lifestyle and clinical factors were investigated. RESULTS: A total of 8,125 patients were included: 584 in PHC and 7,541 in SHC. Mean age was 47.1 and 45.5 years, respectively, with more females in PHC (72% vs 56%). Low levels of education and physical activity, high workload and receiving social benefits were associated with treatment in SHC. Treatment in SHC was most common from 3 to 12 months' pain duration. Higher pain intensity and lower health-related quality of life were found in patients treated in SHC, no differences were found for psychological distress. CONCLUSION: This is the first study comparing register data in patients with neck and back pain treated in PHC and SHC. Differences were found in pain and health-related quality of life, but levels of psychological distress were similar between patients treated in PHC and those treated in SHC.

Prepared for survivorship? Multidisciplinary healthcare professionals' experiences with adolescents' transition off cancer treatment: A focus group study.

PURPOSE: Research indicates that re-entering everyday life after completed cancer treatment can be challenging for adolescents, and knowledge about how healthcare professionals prepare them is scarce. This study explored (a) healthcare professionals' experiences with adolescents with cancer transitioning off active cancer treatment; and (b) what healthcare professionals' do to prepare adolescents and their families for this transition; and c) their ideas to improve current practice. METHODS: We conducted 8 focus-group interviews with 56 multidisciplinary healthcare professionals working in paediatric oncology settings across Norway. The sample consisted of nurses, physicians, social workers, psychologists, physiotherapists, a nutritionist, a dentist, a teacher and a music therapist. Inductive thematic analyses was used. RESULTS: We identified three main themes: (a) the multifaceted nature of the end of the treatment phase; (b) navigating challenges in providing early survivorship care; and (c) healthcare professionals' views and wishes regarding their role in transition care. The healthcare professionals conveyed uncertainty regarding how and when to talk about survivorship during treatment. Post-treatment, healthcare professionals' challenges included time restrictions, meeting the families' individual information needs and providing tailored psychosocial care. Suggestions for improvements included checklists, defined roles and dedicated transition consultations. CONCLUSIONS: Healthcare professionals were aware of the challenges families face during transition, and felt many were not addressed adequately. Although they had similar concrete suggestions for improvements, system barriers and lack of time and focus on survivorship were seen to hamper implementation. Implementing a standardized transition programme with increased nurse involvement could potentially improve the transition phase for everyone involved.

"A bit of everything": Health literacy interventions in chronic conditions - a systematic review.

OBJECTIVE: To systematically evaluate health literacy (HL) interventions in chronic conditions by exploring theoretical perspectives, intervention content and effectiveness. METHOD: We searched MEDLINE, Cochrane, CINAHL, EMBASE, ERIC, Web of Science and PsycINFO. Standardised systematic review methods were used, and sequences informing our research question were extracted and analysed. The study includes a descriptive summary of the included papers. RESULTS: We included 39 unique interventions, with diabetes and heart disease as the most targeted chronic conditions. Fifty-four percent of papers included a definition of HL, but the studies showed significant heterogeneity of theoretical underpinnings, modes, measures and content. We identified 23 HL measures, mostly assessing functional HL. The HL interventions were often more complex than the measures indicated. A significant change in HL was found in 28 studies. Study quality was generally poor. CONCLUSIONS: Interventions optimizing HL appear important to improve health outcomes in chronic conditions. To ensure cumulative knowledge development of this field we need theory-based interventions, consistency in methods and more tailored and comprehensive measures to capture the interventions' complexity. PRACTICE IMPLICATIONS: A more valid understanding of HL interventions and measurements is needed to reach an agreed understanding of their components and intentions.

The importance of shared meaning-making for sustainable knowledge translation and health literacy.

The aim of the present paper is to describe and discuss how recent theories about translation, bridging medical and humanistic understandings of knowledge translation, in the medical humanities can bring about a new understanding of health literacy in the context of patient education. We argue that knowledge translation must be understood as active engagement with contextual meaning, considering the understandings, interpretation, and expertise of both patient and health care provider (deconstruction of the distinction between biomedical and cultural knowledge). To illustrate our points, we will describe the case of Jim, a kidney transplant recipient who received standard patient education but lost the graft (the new kidney). If we apply Kristeva's view to this context, graft function is not merely biology but a complex biocultural fact. In this perspective, graft function is seen as a phenomenon that embraces translation between health as a biomedical phenomenon and healing as lived experience, and that opens for shared meaning-making processes between the patient and the health care provider. In Jim's case, this means that we need to rethink the approach to patient education in a way that encourages the patient's idiosyncratic way of thinking and experiencing, and to transform health information into a means for sustaining Jim's singular life - not biological life "in general." The patient education programme did not take into consideration the singularities of Jim's biographical temporality, with its changes in everyday life, priorities, attitudes, and values. Hence, we claim that health literacy should involve a simultaneous interrogation of the patients and the health professional's constructions of knowledge.

Parents of children with epilepsy: Characteristics associated with high and low levels of health literacy.

Parents of children with epilepsy play a key role in the management of their child's condition. Their level of health literacy (HL), which refers to their ability to seek, understand, assess, remember, and utilize health information, is essential for handling the child optimally. The aim of this study was to investigate characteristics associated with high and low levels of different dimensions of HL in parents. HL was assessed with the multidimensional Health Literacy Questionnaire (parents' version) and the electronic Health Literacy Scale, using data from a cohort of 254 parents of children <12 years. Bivariate correlation and multiple hierarchal linear regression (STATA version 16 SE) were used to investigate variables associated with HL. Self-efficacy (St. ß = 0.14-0.34) was the only variable that predicted higher scores on every HL scale. Being older than 35 years (St. ß = 0.18-0.21), level of education (St. ß = 0.16-0.27), and the child having a coordinator of services (St. ß = 0.16-0.28) were associated with higher scores, while sick leave due to the child's epilepsy (St. ß = -0.13 to -0.16), child comorbidities (St. ß = -0.15 to -0.19), and higher levels of mental distress (St. ß = -0.13 to -0.19) were associated with lower scores in several of the different HL dimensions. A total of 44.8% of the parents scored over the cutoff (≥1.85) predicting a mental disorder on the Hopkins symptom checklist. This is the first study to investigate multidimensional parental HL in a childhood epilepsy context. Our results highlight the need to investigate multiple variables, especially mental distress, to determine characteristics that may predict low parental HL. Further qualitative studies are needed to explore the underlying reasons for the parents' HL scores and to develop inventions tailored to meet different HL needs.

Definitions and measurement of health literacy in health and medicine research: a systematic review.

OBJECTIVES: The way health literacy is understood (conceptualised) should be closely linked to how it is measured (operationalised). This study aimed to gain insights into how health literacy is defined and measured in current health literacy research and to examine the relationship between health literacy definitions and instruments. DESIGN: Systematic review in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. DATA SOURCES: The MEDLINE, PsycINFO, ERIC and CINAHL databases were searched for articles published during two randomly selected months (March and October) in 2019. ELIGIBILITY CRITERIA: We included articles with a quantitative design that measured health literacy, were peer-reviewed and original, were published in the English language and included a study population older than 16 years. DATA EXTRACTION AND SYNTHESIS: Six researchers screened the articles for eligibility and extracted the data independently. All health literacy definitions and instruments were considered in relation to category 1 (describing basic reading and writing skills, disease-specific knowledge and practical skills) and category 2 (social health literacy competence and the ability to interpret and critically assess health information). The categories were inspired by Nutbeam's descriptions of the different health literacy levels. RESULTS: 120 articles were included in the review: 60 within public health and 60 within clinical health. The majority of the articles (n=77) used instruments from category 1. In total, 79 of the studies provided a health literacy definition; of these, 71 were in category 2 and 8 were in category 1. In almost half of the studies (n=38), health literacy was defined in a broad perspective (category 2) but measured with a more narrow focus (category 1). CONCLUSION: Due to the high degree of inconsistency between health literacy definitions and instruments in current health literacy research, there is a risk of missing important information about health literacy considered be important to the initial understanding of the concept recognised in the studies. PROSPERO REGISTRATION NUMBER: CRD42020179699.

Relevant associations between alexithymia and health-literacy in persons with psoriasis.

OBJECTIVE: To explore possible associations between alexithymia and health literacy (HL) in persons with psoriasis. METHODS: We conducted a cross-sectional study, including 825 persons with moderate to severe psoriasis, using the Toronto Alexithymia Scale, and the Health Literacy Questionnaire. Descriptive statistics compare HL means between alexithymic and not alexithymic participants. Associations between alexithymia and HL are analyzed using a linear multiple regression model. RESULTS: Twenty-six percent of the participants were characterized as alexithymic, and 26.8% had borderline alexithymia. Higher alexithymia scores were associated with lower education, biological medicines, and more comorbidities, together with lower self-efficacy. The HL domains with the strongest associations with alexithymia were those focusing on managing and getting support for health, as well as the ability to find health information. CONCLUSION: A more elevated alexithymia score is associated with lower HL. Further studies of these associations may contribute to a more comprehensive perspective of psoriasis. To know a patient's alexithymia level and HL needs may guide health care personnel's understanding of possible associations between health status, clinical presentation, behavior, and response to treatment.

Exploring patients' and health professionals' perspectives on health literacy needs in the context of chronic obstructive pulmonary disease.

OBJECTIVE: Persons with chronic obstructive pulmonary disease (COPD) require complex follow-up by healthcare professionals (HCPs) and may experience several health literacy (HL) needs. This study aimed to explore such needs in people with COPD and the HCPs who care for them. METHODS: From October 2016 to August 2017 a qualitative study with four focus groups (FG) were performed in people with COPD (n = 14) and three in multidisciplinary HCPs (n = 21). An inductive thematic analysis was used to investigate HL needs. RESULTS: Four HL needs emerged: 1) strengthening the feeling of security; 2) combating the burden of insufficient knowledge on COPD and lack of informational flow; 3) supporting motivation for endurance and self-management; and 4) strengthening dignity. DISCUSSION: This study highlights a gap between people with COPD who express important HL needs and HCPs' capabilities to care for these needs. For HCPs to increase HL in such cases, HCPs need to improve their own HL. It is essential to find solutions on how to improve HL in HCPs who care for people with COPD and to increase the availability of interventions that increase HL in COPD. Education programs, health organizations, and governments should be aware of HL needs in such situations.