Effectiveness of a novel digital patient education programme to support self-management of early rheumatoid arthritis: a randomised controlled trial.

OBJECTIVES: To evaluate the effectiveness of a novel digital patient education (PE) programme in improving self-management in patients newly diagnosed with rheumatoid arthritis (RA). METHODS: This was a parallel, open-label, two arms, randomised controlled trial with superiority design. Patients from five rheumatology clinics were randomised into digital PE (intervention) or face-to-face PE (control). The primary outcome was self-efficacy, measured by average difference in the Rheumatoid Arthritis Self-Efficacy (RASE) score from baseline to month 12. Secondary outcomes were RA knowledge, health literacy, adherence, and quality of life. Healthcare utilisation data and digital PE programme usage were recorded. Self-efficacy, knowledge, and health literacy data were analysed using mixed-effects repeated measures modelling; adherence using logistic regression, and quality of life and healthcare utilization using descriptive statistics with the Wilcoxon rank-sum test. RESULTS: Of the 180 patients randomised (digital PE, n = 89; face-to-face PE, n = 91), 175 had data available for analysis. Median age was 59.0 years, and 61% were women. The average difference in self-efficacy between groups from baseline to month 12 was significant by a -4.34 difference in RASE score, favouring the intervention group (95%CI -8.17 to -0.51; p= 0.026). RA knowledge, health literacy, and quality of life showed minor improvements over time but no difference between groups, except out-patient clinic contacts which were fewer in the intervention group. CONCLUSIONS: The findings suggest that digital PE is effective in improving self-efficacy and therefore self-management in patients with early RA. This intervention has potential to lower healthcare costs by decreasing out-patient clinic contacts. TRIAL REGISTRATION NUMBER: clinicaltrials.gov, NCT04669340.

2022 EULAR points to consider for remote care in rheumatic and musculoskeletal diseases.

BACKGROUND: Remote care and telehealth have the potential to expand healthcare access, and the COVID-19 pandemic has called for alternative solutions to conventional face-to-face follow-up and monitoring. However, guidance is needed on the integration of telehealth into clinical care of people with rheumatic and musculoskeletal diseases (RMD). OBJECTIVE: To develop EULAR points to consider (PtC) for the development, prioritisation and implementation of telehealth for people with RMD. METHODS: A multidisciplinary EULAR task force (TF) of 30 members from 14 European countries was established, and the EULAR standardised operating procedures for development of PtC were followed. A systematic literature review was conducted to support the TF in formulating the PtC. The level of agreement among the TF was established by anonymous online voting. RESULTS: Four overarching principles and nine PtC were formulated. The use of telehealth should be tailored to patient's needs and preferences. The healthcare team should have adequate equipment and training and have telecommunication skills. Telehealth can be used in screening for RMD as preassessment in the referral process, for disease monitoring and regulation of medication dosages and in some non-pharmacological interventions. People with RMD should be offered training in using telehealth, and barriers should be resolved whenever possible.The level of agreement to each statement ranged from 8.5 to 9.8/10. CONCLUSION: The PtC have identified areas where telehealth could improve quality of care and increase healthcare access. Knowing about drivers and barriers of telehealth is a prerequisite to successfully establish remote care approaches in rheumatologic clinical practice.

Client labor: adults with hearing impairment describing their participation in their hearing help-seeking and rehabilitation.

BACKGROUND: The uptake and use of hearing aids is low compared to the prevalence of hearing impairment. People who seek help and take part in a hearing aid rehabilitation process participate actively in this process in several ways. PURPOSE: In order to gain more knowledge on the challenges of hearing help-seeking and hearing aid use, this qualitative study sought to understand the ways that people with hearing impairment describe themselves as active participants throughout the hearing aid rehabilitation process. RESEARCH DESIGN: In this qualitative interview study we examined the hearing rehabilitation process from the perspective of the hearing impaired. In this article we describe how the qualitative interview material was interpreted by a pragmatic qualitative thematic analysis. The analysis described in this article focused on the efforts, initiatives, actions, and participation the study participants described that they had engaged in during their rehabilitation. STUDY SAMPLE: Interviews were conducted with people with hearing impairment in Australia, Denmark, the United Kingdom, and the United States. The 34 interview participants were distributed equally between the sites, just as men and women were almost equally represented (56% women). The average age of the participants was 64. All participants had a hearing impairment in at least one ear. The participants were recruited to represent a range of experiences with hearing help-seeking and rehabilitation. DATA COLLECTION AND ANALYSIS: With each participant one qualitative semistructured interview ranging between 1 and 2 hr was carried out. The interviews were transcribed verbatim, read through several times, and themes were identified, defined, and reviewed by an iterative process. RESULTS: From this thematic focus a concept called "client labor" has emerged. Client labor contains nine subthemes divided into three overarching groups: cognitive labor, emotional labor, and physical labor. The participants' experiences and meaning-making related to these conceptual types of efforts is described. CONCLUSIONS: The study findings have implications for the clinical encounter between people with hearing impairment and hearing health-care professionals. We suggest that a patient-centered approach that bears in mind the client's active participation could help toward improving clinical dispensing, fitting, and counseling practices with the end goal to increase hearing aid benefit and satisfaction.

Face validity and reliability test of the Danish version of the compliance questionnaire rheumatology in patients with early rheumatoid arthritis.

BACKGROUND: Supporting adherence to medication is an essential part of the treatment and care of patients with rheumatic and musculoskeletal diseases. The Compliance Questionnaire Rheumatology (CQR) measures adherence in rheumatic diseases through 19 items covering drug-taking behaviour to identify the reasons for adhering to treatment and the factors that contribute to suboptimal adherence. The objective of this study was to present the translation of the CQR into Danish and the face validity and reliability test. METHODS: The CQR was translated into Danish according to international guidelines, followed by a face validity test among 10 patients with rheumatoid arthritis in 2009. The test-retest reliability of the Danish CQR was evaluated in 49 patients with rheumatoid arthritis in 2020 - 2021 using the standard error of the measurement (SEM) converted into the minimally detectable change (MDC) and the intraclass correlation coefficient (ICC). Questionnaires were administered with a minimum of 10 days between assessments. RESULTS: The participants in the reliability test had a mean age of 57.4 years (SD 16.1) and a mean disease duration of 1.13 years (range 2 months-2 years). The mean CQR score in the test and retest was 62.7 (confidence interval (CI) 58.8; 66.6) and 62.5 (CI 58.9; 66.1), respectively, with a SEM of 8.59 (7.16; 10.73) and an MDC of 16.83. A satisfactory test-retest reliability was confirmed by an ICC value of 0.79 (CI 0.68; 0.89). CONCLUSION: The Danish CQR has satisfactory test-retest reliability in patients newly diagnosed with rheumatoid arthritis and is considered a reliable tool to measure adherence in this group.

The WebRA study: Opportunities and challenges in digital patient education from the perspective of patients with rheumatoid arthritis: A qualitative study.

OBJECTIVE: To explore patients' perceptions of digital patient education (PE), and how this contributes to self-management of rheumatoid arthritis (RA). METHODS: Individual interviews based on 'interpretive description' methodology. The patients were purposively selected from a randomized controlled trial that investigated the effects of digital PE. The analysis included a descriptive section, followed by the interpretation and extraction of the main messages. RESULTS: Overall, participants had positive perceptions of the e-learning program. Advantages were flexibility, the possibility for repetition, entertainment, availability, and learning in familiar surroundings. Disadvantages were unmet relational support needs due to missing dialogue with health care providers (HCPs). For the majority, a need for insight into the condition led to an active approach to using e-learning. The e-learning program facilitated knowledge acquisition about RA, but relational support from HCPs and a positive attitude toward living with RA were also important for achieving self-management. CONCLUSION: Digital PE is useful for self-management support in RA, however different forms and combinations of PE must be offered in the future to accommodate various needs throughout the disease course. PRACTICE IMPLICATIONS: These results may inform future development and implementation of digital PE that adequately takes individual preferences for self-management support into account.

Socioeconomic, Disease-Related, and Personal Factors Associated With Participation in Remote Follow-Up in Rheumatoid Arthritis: A Cross-Sectional Study.

OBJECTIVE: To identify socioeconomic, disease-related, and personal factors associated with participation in remote follow-up in patients with rheumatoid arthritis (RA). METHODS: Following the implementation of a patient-reported outcome-based remote follow-up intervention in RA patients in Denmark, a cross-sectional study was conducted among 775 prevalent patients. In 2019, an electronic questionnaire was sent to eligible RA patients, covering health literacy and patient experience regarding involvement and confidence with remote care. Questionnaire data were linked to nationwide registries regarding socioeconomic status, labor market affiliation, and comorbidity level. Associations between registry- and questionnaire-based factors and remote follow-up were analyzed using multiple logistic regression analysis. RESULTS: All 775 patients were included in the registry-based analyses, but only 394 of 646 (61%) completed the questionnaire. No attachment to the labor market or low household income was associated with lower odds of remote follow-up participation (odds ratio [OR] 0.53 [95% confidence interval (95% CI) 0.34-0.83]) and (OR 0.69 [95% CI 0.48-1.00]). Further, a high level of comorbidity was associated with lower odds of remote follow-up participation compared to a low/medium level of comorbidity (OR 0.53 [95% CI 0.34-0.81]). No association was found between health literacy and remote follow-up, but remote follow-up attendees reported more confidence in remote care (OR 1.33 [95% CI 1.21-1.47]). CONCLUSION: Participation in remote follow-up was associated with attachement to the labor market, household income, degree of comorbidity, and confidence with remote care. Additional research is necessary to investigate whether a larger and more divergent group of RA patients should be considered for inclusion in remote follow-up programs.

Urokinase-Type Plasminogen Activator Receptor (uPAR) Expression and [64Cu]Cu-DOTA-AE105 uPAR-PET/CT in Patient-Derived Xenograft Models of Oral Squamous Cell Carcinoma.

PURPOSE: [64Cu]Cu-DOTA-AE105 urokinase-type plasminogen activator receptor (uPAR)-PET/CT is a novel and promising imaging modality for cancer visualization, although it has not been tested in head and neck cancer patients nor in preclinical models that closely resemble these heterogenous tumors, i.e., patient-derived xenograft (PDX) models. The aim of the present study was to establish and validate oral squamous cell carcinoma (OSCC) PDX models and to evaluate [64Cu]Cu-uPAR-PET/CT for tumor imaging in these models. PROCEDURES: PDX flank tumor models were established by engrafting tumor tissue from three patients with locally advanced OSCC into immunodeficient mice. [64Cu]Cu-DOTA-AE105 was injected in passage 2 (P2) mice, and [64Cu]Cu-uPAR-PET/CT was performed 1 h and 24 h after injection. After the last PET scan, all animals were euthanized, and tumors dissected for autoradiography and immunohistochemical (IHC) staining. RESULTS: Three PDX models were established, and all of them showed histological stability and unchanged heterogenicity, uPAR expression, and Ki67 expression through passages. A significant correlation between uPAR expression and tumor growth was found. All tumors of all models (n=29) showed tumor uptake of [64Cu]Cu-DOTA-AE105. There was a clear visual concordance between the distribution of uPAR expression (IHC) and [64Cu]Cu-DOTA-AE105 uptake pattern in tumor tissue (autoradiography). No significant correlation was found between IHC (H-score) and PET-signal (SUVmax) (r=0.34; p=0.07). CONCLUSIONS: OSCC PDX models in early passages histologically mimic donor tumors and could serve as a valuable platform for the development of uPAR-targeted imaging and therapeutic modalities. Furthermore, [64Cu]Cu-uPAR-PET/CT showed target- and tumor-specific uptake in OSCC PDX models demonstrating the diagnostic potential of this modality for OSCC patients.

Targeted imaging of uPAR expression in vivo with cyclic AE105 variants.

A comprehensive literature reports on the correlation between elevated levels of urokinase-type plasminogen activator receptor (uPAR) and the severity of diseases with chronic inflammation including solid cancers. Molecular imaging is widely used as a non-invasive method to locate disease dissemination via full body scans and to stratify patients for targeted treatment. To date, the only imaging probe targeting uPAR that has reached clinical phase-II testing relies on a high-affinity 9-mer peptide (AE105), and several studies by positron emission tomography (PET) scanning or near-infra red (NIR) fluorescence imaging have validated its utility and specificity in vivo. While our previous studies focused on applying various reporter groups, the current study aims to improve uPAR-targeting properties of AE105. We successfully stabilized the small uPAR-targeting core of AE105 by constraining its conformational landscape by disulfide-mediated cyclization. Importantly, this modification mitigated the penalty on uPAR-affinity typically observed after conjugation to macrocyclic chelators. Cyclization did not impair tumor targeting efficiency of AE105 in vivo as assessed by PET imaging and a trend towards increased tracer uptake was observed. In future studies, we predict that this knowledge will aid development of new fluorescent AE105 derivatives with a view to optical imaging of uPAR to assist precision guided cancer surgery.

Conducting qualitative research in audiology: a tutorial.

OBJECTIVE: Qualitative research methodologies are being used more frequently in audiology as it allows for a better understanding of the perspectives of people with hearing impairment. This article describes why and how international interdisciplinary qualitative research can be conducted. DESIGN: This paper is based on a literature review and our recent experience with the conduction of an international interdisciplinary qualitative study in audiology. RESULTS: We describe some available qualitative methods for sampling, data collection, and analysis and we discuss the rationale for choosing particular methods. The focus is on four approaches which have all previously been applied to audiologic research: grounded theory, interpretative phenomenological analysis, conversational analysis, and qualitative content analysis. CONCLUSIONS: This article provides a review of methodological issues useful for those designing qualitative research projects in audiology or needing assistance in the interpretation of qualitative literature.

Hearing help-seeking and rehabilitation: perspectives of adults with hearing impairment.

OBJECTIVE: This study investigated the perspectives of adults with hearing impairment on hearing help-seeking and rehabilitation. DESIGN: Individual semi-structured interviews were completed. STUDY SAMPLE: In total, 34 adults with hearing impairment in four countries (Australia, Denmark, UK, and USA) participated. Participants had a range of experience with hearing help-seeking and rehabilitation, from never having sought help to being satisfied hearing-aid users. RESULTS: Qualitative content analysis identified four main categories ('perceiving my hearing impairment', 'seeking hearing help', 'using my hearing aids', and 'perspectives and knowledge') and, at the next level, 25 categories. This article reports on the densest categories: they are described, exemplified with interview quotes, and discussed. CONCLUSIONS: People largely described hearing help-seeking and rehabilitation in the context of their daily lives. Adults with hearing impairment rarely described clinical encounters towards hearing help-seeking and rehabilitation as a connected process. They portrayed interactions with clinicians as isolated events rather than chronologically-ordered steps relating to a common goal. Clinical implications of the findings are discussed.

Design and development of an e-learning patient education program for self-management support in patients with rheumatoid arthritis.

Objective: To develop an e-learning education program targeting patients with rheumatoid arthritis. Methods: The development process involved content specification and creative design. It was theoretically framed within theories of multimedia learning and entertainment-education and empirically based on evidence of patient education in rheumatoid arthritis and focus group discussions with stakeholders. We conducted a feasibility test among ten patients to assess the acceptability and usability of the program, and to identify areas to be adjusted. Results: The following themes for educational needs were found in focus group discussions: "Knowledge of rheumatoid arthritis," he disease course and prognosis," "Medical treatment," "A new life situation" and "Daily life with rheumatoid arthritis." Based on this, an e-learning program covering the disease course, examinations, treatment, and daily life, was created. It combines animations, videos, podcasts, text, speech, and tests. Test persons found the program feasible-that is, clear in content and easy to understand with a suitable pace and coherence between graphics, speech, and text. Conclusion: This e-learning program is based on solid theoretical knowledge that meets users' needs and is easy to use. Innovation: This study contributes to the innovation of health care by the development of a new digital tool for patient education.

The effectiveness of e-learning in patient education delivered to patients with rheumatoid arthritis: The WebRA study-protocol for a pragmatic randomised controlled trial.

BACKGROUND: Patient education is integral to the treatment and care of patients with rheumatoid arthritis. Change is taking place in the organisation of healthcare systems because of a demographic shift towards ageing populations, an increasing use of technology and advancements in digital technologies, allowing for new interventions. This study will aim to evaluate the effectiveness of a newly developed e-learning patient education programme based on self-management that targets patients with rheumatoid arthritis. METHODS: A pragmatic multi-centre randomised controlled trial is planned. We intend to recruit approximately 200 patients with a new diagnosis (< 3 months) of rheumatoid arthritis. Participants will be randomised 1:1 to web-based patient education delivered through an e-learning programme at home or standard face-to-face patient education provided at the hospital. The primary outcome is self-efficacy. Secondary outcomes are improved knowledge of rheumatoid arthritis, adherence to medication, health literacy level and quality of life. Outcomes will be measured at baseline and follow-up occurring 1, 3, 6 and 12 months after enrolment. Furthermore, data on healthcare utilisation and utilisation of the e-learning programme will be assessed at the 12-month follow-up. Statistical analysis, including differences between groups, will be evaluated using the chi-square and Kruskal-Wallis tests. Statistical analysis will follow the intention-to-treat principle, and analysis of variance will be used to evaluate the within- and between-groups differences testing the hypothesis of the 'superiority' of web-based patient education over standard face-to-face education provided at the hospital. Per protocol analysis will be used to assess the impact of missing data. Enrolment started in February 2021 and will end in June 2022. DISCUSSION: The study is expected to contribute to the evidence on the effectiveness of web-based patient education within rheumatic diseases. If the e-learning programme is effective, it will be incorporated into existing services to improve the self-management of patients with rheumatoid arthritis. Further, this mode of providing patient education may impact the organisation of health care for both rheumatic diseases and other chronic diseases by offering different modes of delivering patient education based on the needs and preferences of patients. TRIAL REGISTRATION: ClinicalTrials.gov identifier NCT04669340. Registered on November 27, 2020. https://www.clinicaltrials.gov/ct2/show/NCT04669340?term=e-learning&cond=Rheumatoid+Arthritis&draw=2&rank=1 . See Additional file 1 for detailed information on the dataset according to the World Health Organization Trial Registration Data Set.

Hygiene versus fertiliser: the use of human excreta in agriculture--a Vietnamese example.

The use of human excreta as fertiliser in agriculture is a common practice in parts of South East Asia benefiting production but at the same time a risk factor for increased helminth infections. This paper describes the hygienic handling of human excreta for use in agriculture in Central Vietnam from a practical farming perspective presenting the farmers perceived health risks and benefits of its use. Further, in the study findings are discussed relating to the new Vietnamese guidelines for the use of human excreta in agriculture to their implications on an on-farm context. A total of 471 households in five communes responded to a structured questionnaire. This survey was supplemented by focus group discussions, key informant interviews and participant observations. More than 90% of the surveyed households used their own excreta as fertiliser and a total of 94% composted the excreta before use, either inside or outside the latrine. However, due to the prevailing design of the latrine and the three annual cropping seasons, it was found that for a minimum of one cultivation season per year 74% of the households will have only 3-4 months for composting before the input is needed in production, which is short of the 6 months stipulated in the national guidelines. The community associated great benefits from using human excreta in agriculture, especially if composted, and did not associate risks with the use of composted excreta if it was dry and lacked odour. It is recommended that the guidelines be revised and attempts made to identify ways of reducing the time needed to ensure the die-off of helminth eggs, including the use of pH regulators, such as an increased use of lime in the latrines.

The fear of awful smell: risk perceptions among farmers in Vietnam using wastewater and human excreta in agriculture.

Vietnamese farmers' health-risk awareness, knowledge, and practices related to their use of wastewater and human excreta was investigated in an anthropological study by a multidisciplinary team in peri-urban Hanoi and Nghe An Province. Farmers identified health risks associated with their use of excreta and wastewater, but they viewed these as unavoidable risks related to production. They perceived the health risks as different for the use of wastewater and human feces. They perceived health risks from wastewater as non-serious because it remained on the skin and only caused skin problems, but they considered health risks from non-composted smelly feces serious because it entered the body through 'polluted' air. Most farmers were more aware of threats to health from 'dirt' entering the domestic environment than of the health risks during their work. The concept of 'dirt' should be separated from understanding of germs, viruses, and parasites so that it is understood that things that carrying health risks cannot always be identified by their 'dirtiness' or smell. Farmers mainly considered hygiene and health as women's issues. Men's responsibility for the health and hygiene of the family should therefore be emphasized.

Transition from child to adult care in an outpatient clinic for adolescents with juvenile idiopathic arthritis: An inductive qualitative study.

AIM: The aim of this study was to investigate experiences and needs in the transition from child to adult care in an outpatient clinic from the perspective of adolescents with juvenile idiopathic arthritis and their parents focusing on which aspects in the transition could ease the process. DESIGN: A qualitative design with an inductive approach. METHODS: Inductive content analysis was used to analyse individual interviews with three parents and three adolescents from a rheumatology clinic in Denmark. RESULTS: Three descriptive categories emerged: "Information during transition," "Personalized care" and "A change of roles." The comparative analysis of the categories revealed two explanatory themes: "To move from something known to something unknown" and "To develop and change." We found that preparation for transition, information of organisational and procedural changes when entering adult care, continuity and relationships with health professionals characterised by trust as well as involvement of adolescents and parents will ease the process of transition.

Experiences With Telehealth Followup in Patients With Rheumatoid Arthritis: A Qualitative Interview Study.

OBJECTIVE: To explore the experiences of a patient-reported outcome (PRO)-based telehealth followup from the perspective of patients with rheumatoid arthritis (RA) and their experiences of increasing their active role, and responsibility for disease control in particular. METHODS: Adopting a strategy of interpretive description, we conducted individual, semistructured interviews with 15 RA patients participating in a telehealth followup. Participants were selected purposively and consecutively from both sexes and with various ages, disease durations, and disease severity. The analysis was inductive, with a constant comparative approach. First, we identified the main themes conveying the participants' experiences. Then we constructed patient typologies to explain different perspectives on the telehealth followup. RESULTS: Five themes covered the participants' experiences: a flexible solution, responsibility, knowledge of RA, communication and involvement, and continuity. Two typologies, the keen patient and the reluctant patient, represented opposite perspectives and preferences regarding the core value of and approach to the telehealth followup. CONCLUSION: The participants had positive perceptions of the PRO-based telehealth followup and saw it as a flexible and resource-saving solution. They reported disadvantages related to missing face-to-face contact with health professionals. The 2 typologies, the keen and the reluctant patient, help us understand the patients' different needs, wishes, and abilities to take part in telehealth followup. Our findings reveal a need for more insight into how telehealth followup could be integrated in routine clinical practice, paying special attention to how reluctant patients may be supported.

Factors influencing help seeking, hearing aid uptake, hearing aid use and satisfaction with hearing aids: a review of the literature.

OBJECTIVES: This descriptive summary of the literature provides an overview of the available studies (published between January 1980 and January 2009) on correlates of help-seeking behavior for hearing loss, hearing-aid uptake, hearing-aid use, and satisfaction with the device. METHODS: Publications were identified by structured searches in Pubmed and Cinahl and by inspecting the reference lists of relevant articles. The articles covered different stages that a person with hearing impairment may go through: prior to hearing aid fitting, the period covering the fitting and the period post hearing aid fitting. Inclusion of articles occurred according to strict inclusion and exclusion criteria. Data were extracted by two independent researchers. Thirty-nine papers were included that identified 31 factors examined in relation to the four outcome measures. These covered personal factors (e.g., source of motivation, expectation, attitude), demographic factors (e.g., age, gender) and external factors (e.g., cost, counseling). Only two studies covered the actual fitting process. There was only one factor positively affecting all four outcome variables. This was self-reported hearing disability. The vast majority of studies showed no relationship of age and gender with any of the outcome domains. DISCUSSION AND CONCLUSION: Whereas research of the last 28 years yielded valuable information regarding relevant and irrelevant factors in hearing aid health care, there are still many relevant issues that have never been investigated in controlled studies. These are discussed.