[Identification and Prioritization of Research Questions on Paraplegia Caused by Traumatic Spinal Cord Injury with Those Affected, Their Relatives and Health Care Professionals]. / Identifizierung und Priorisierung von Forschungsfragen zu Paraplegie infolge einer unfallbedingten Querschnittlähmung mit Betroffenen, Angehörigen und professionell Versorgenden.

BACKGROUND: Objective With expertise based on experience, paraplegics, their relatives and health care professionals can contribute to the development of research questions relevant for those affected and those in health care practice. For this purpose, the James Lind Alliance (JLA) has provided a methodological approach. The aim of this study was to develop a research agenda for paraplegia resulting from traumatic spinal cord injury with an adapted JLA approach. METHODS: Four consecutive online surveys of people with paraplegia caused by traumatic spinal cord injury, their relatives and caregivers were conducted. In the first survey, the respondents freely formulated research questions unanswered from their point of view. These were synthesized and checked to see if they can already be answered by available evidence. The unresolved questions were prioritized stepwise in the subsequent surveys. In the second survey, the relevance of questions was rated on a five-point rating scale (1-5). Questions with a mean value of 4 or higher were taken up in the third survey, in which the 10 most relevant questions were determined. These were ranked in the fourth survey as a top-10 list. RESULTS: Based on the first survey (n=52), 38 unresolved research questions were identified. Of these, 26 questions were rated as important (2nd survey; n=53), from which 10 questions were selected (3rd survey; n=17) and ranked (4th survey; n=12) as a top-10 list. Four prioritized questions related to treatment of spinal cord injury or associated health issues, three to aspects of the health care system with regard to assistive devices and the implementation of new therapies, two to possibilities of those affected to improve their own situation, and one to research on the course of disease. CONCLUSIONS: Nine priorities focus on research that could help improve the life and health care situation of paraplegic patients and one on curative treatment. The prioritized questions should be taken up by researchers and research funders for the benefit of patients and to help health care providers. For some priorities, a need for research was consistently identified in present guidelines or systematic reviews.

Patients' Health Literacy in Rehabilitation: Comparison between the Estimation of Patients and Health Care Professionals.

The term health literacy (HL) comprises the handling of health information and disease-specific and generic self-management skills, especially relevant for patients with chronic conditions. Health care professionals (HCPs) should correctly identify patients' communication needs and their HL levels. Therefore, the aims of the study were (1) to determine inpatient medical rehabilitation patients' HL based on self-assessment, (2) to evaluate changes from admission to discharge, (3) to identify HCPs estimation of patients' HL, and (4) to compare the estimated patient HL by patients and HCPs. A combined cross-sectional and longitudinal study was conducted in an orthopedic rehabilitation center in Germany. The multidimensional Health Literacy Questionnaire (HLQ) was filled in by patients (admission, discharge). An adapted version was administered to HCPs (n = 32) in order to assess HL of individual patients. Data from 287 patients were used for the longitudinal analysis, and comparison was based on n = 278 cases with at least two HL estimations. The results showed a significant increase in HL in five of nine scales with small effect sizes. Moreover, HCPs mostly provided higher scores than patients, and agreement was poor to fair. Differences between the HL estimation might lead to communication problems, and communication training could be useful.

Organizational Health Literacy in a Hospital-Insights on the Patients' Perspective.

Health literacy-sensitive communication has been found to be an important dimension of organizational health literacy measured from the patients' perspective. Little is known about the role of health literacy-sensitive communication in complex care structures. Therefore, our aim was to assess which hospital characteristics (in terms of process organization) and patient characteristics (e.g., age, chronic illness, etc.) contribute to better perceptions of health literacy-sensitive communication, as well as whether better health literacy-sensitive communication is associated with better patient reported experiences. Data were derived from a patient survey conducted in 2020 in four clinical departments of a university hospital in Germany. Health literacy-sensitive communication was measured with the HL-COM scale. Data from 209 patients (response rate 24.2%) were analyzed with a structural equation model (SEM). Results revealed that no patient characteristics were associated with HL-COM scores. Better process organization as perceived by patients was associated with significantly better HL-COM scores, and, in turn, better HL-COM scores were associated with more patient-reported social support provided by physicians and nurses as well as fewer unmet information needs. Investing into good process organization might improve health literacy-sensitive communication, which in turn has the potential to foster the patient-provider relationship as well as to reduce unmet information needs of patients.

Improving professional health literacy in hospitals: study protocol of a participatory codesign and implementation study.

INTRODUCTION: In connection with a hospital stay, patients have to make important health-related decisions. They need to find, understand, assess and apply health-related information, and therefore, require health literacy. Adequately responding to the needs of patients requires promoting the communication skills of healthcare professionals within healthcare organisations. Health-literate healthcare organisations can provide an environment strengthening professionals' and patients' health literacy. When developing health-literate healthcare organisations, it has to be considered that implementing organisational change is typically challenging. In this study, a communication concept based on previously evaluated communication training is codesigned, implemented and evaluated in four clinical departments of a university hospital. METHOD AND ANALYSIS: In a codesign phase, focus group interviews among employees and patients as well as a workshop series with employees and hospital management are used to tailor the communication concept to the clinical departments and to patients' needs. Also, representatives responsible for the topic of health literacy are established among employees. The communication concept is implemented over a 12-month period; outcomes studied are health literacy on the organisational and patient levels. Longitudinal survey data acquired from a control cohort prior to the implementation phase are compared with data of an intervention cohort after the implementation phase. Moreover, survey data from healthcare professionals before and after the implementation are compared. For formative evaluation, healthcare professionals are interviewed in focus groups. ETHICS AND DISSEMINATION: The study protocol was approved by the Ethics Committee of the Medical Faculty of the University of Oldenburg and is in accordance with the Declaration of Helsinki. Study participants are asked to provide written informed consent. The results are disseminated via direct communication within the hospital, publications and conference presentations. If the intervention turns out to be successful, the intervention and implementation strategies will be made available to other hospitals. TRIAL REGISTRATION NUMBER: DRKS00019830.

Priorities of patients, caregivers and health-care professionals for health research - A systematic review.

BACKGROUND: Based on subjective experience, patients can identify research priorities important for health services research. A systematic method for priority setting has been developed by the James Lind Alliance. OBJECTIVE: This article reviews the literature on the research priorities of patients, caregivers and health-care professionals and presents the prioritized research themes and prioritization methods used. SEARCH STRATEGY: Three electronic databases were searched on 22 May 2018. The search was not limited to any time period or language. INCLUSION CRITERIA: The included studies reported the identification and prioritization of research priorities involving patients, relatives and caregivers. Each included paper addressed a specific ICD-coded health problem, and at least one-third of the sample involved in the prioritization process was affected by the health problem. DATA EXTRACTION AND SYNTHESIS: The 10 top-ranked research priorities were included in the thematic analysis. With an inductive approach, a system of identified themes and subthemes was developed from the research priorities. Each research priority was assigned to one research theme. MAIN RESULTS: The priority lists of 34 publications involving 331 research priorities were included. Nine main themes represent the content of the research priorities. The most frequently represented main themes are 'Treatment', 'Patients' and 'Health condition'. The distribution of the research priorities varied depending on the health conditions and prioritization methods. DISCUSSION AND CONCLUSIONS: This review provides a comprehensive overview of the overarching research themes in research priorities of affected individuals. The results can guide future patient-oriented research.

The Agreement between Patients' and Healthcare Professionals' Assessment of Patients' Health Literacy-A Systematic Review.

Healthcare professionals (HCPs) can play a key role in promoting health literacy (HL) in patients to help them navigate the healthcare system effectively. This involves assisting patients to locate, comprehend and evaluate health information. HCPs should assess patients' health literacy needs and check the patient´s understanding to communicate adequate health information. This review investigates the agreement between the patients' and HCPs assessment of patients' HL. A systematic literature search in PubMed, Scopus, PsycINFO, CINAHL and the Cochrane Library was performed in November 2019. The search yielded 6762 citations, seven studies met the inclusion criteria. The following HL measurement instruments were completed by the patients in the included studies: REALM (n = 2), REALM-R (n = 1), S-TOFHLA (n = 1), NVS (n = 1), SILS (n = 1), HLSI-SF (n = 1) and HLS-EU-Q16 (n = 1). The HCPs assessed patients' HL by answering questions that reflect the content of standardized tools. Six studies reported that a high proportion of patients assigned to have HL needs based on their self-report were overestimated by their HCPs in terms of the HL level. The results demonstrated that HCPs had difficulty determining patients' HL adequately. Differences between the HL estimation of HCPs and the actual HL skills of patients might lead to communication problems.