Effect of non-pharmacological interventions on symptoms and quality of life in patients with hematological malignancies - A systematic review.

BACKGROUND: Non-pharmacological interventions have the potential to enhance health-related quality of life (HRQoL) through symptom management. This systematic review aims to identify, collate, and assess randomized controlled trials investigating the effect of non-pharmacological interventions on symptoms and HRQoL within hematology. METHODS: MEDLINE/PUBMED, EMBASE, CINAHL, PSYCINFO and COCHRANE were searched up to April 2021. Outcomes were changes in symptoms and HRQoL. RESULTS: Sixty-five studies were categorized into five intervention types: Mind/body (n=9), Web-based (n=9), Music/art (n=6), Consultation-based (n=4), and Physical activity (n=37). We found significantly reduced fatigue (n=12 studies), anxiety (n=8) and depression (n=7), with 11 studies showing significant improvements in HRQoL. CONCLUSIONS: The evidence for non-pharmacological interventions shows substantial variation in efficacy and methodological quality. While specific symptoms and HRQoL outcomes significantly favored the intervention, no particular intervention can be emphasized as more favorable, given the inability to conduct a meta-analysis.

Self-management Support for Patients with Atopic Dermatitis: A Qualitative Interview Study.

Patients with a chronic skin disease, eg, atopic dermatitis, need self-management skills to increase their quality of life. We explored patients' needs for self-management support from healthcare professionals and how these needs can be met in a dermatology setting. Interpretive description methodology was chosen for iterative data collection and analysis of qualitative interviews with patients with atopic dermatitis. Two mutually dependent themes were found to be supportive of patients' self-management. Personal and disease-related recognition was fundamental to successful support. However, guidance for agenda-setting from healthcare professionals was also needed on the wide range of topics that could be covered in the consultation based on individual needs. Patients need self-management support in addition to what can be found with family, friends, or peers. It is crucial that the support is delivered with an appreciative approach by healthcare professionals with profound knowledge of atopic dermatitis. Equally important is guidance towards agenda-setting, a way to co-construct the consultation with a clear focus on the specific patient's needs.

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.

Experiences of an interprofessional follow-up program in primary care practice.

BACKGROUND: An integrative cooperation of different healthcare professional is a key component for high quality health services. With an aging population and many with long-term conditions, more health tasks and follow-up care are being transferred to primary care and locally where people live. Interprofessional collaboration among providers of different professional designations will be of increasing importance to optimizing primary care capacity in years to come. There is a call for further exploration of models of interprofessional collaboration that might be applicable in Norwegian primary care. The aim of this study was to explore experiences of interprofessional collaboration between primary care physicians and nurses working in primary care by applying an intervention for people with type 2 diabetes. Specifically, this study was designed to strengthen and gain deeper insight into interprofessional collaboration between primary care physicians and nurses in primary care settings. METHODS: We applied Interpretive Description as a research strategy. The participants within this study were primary care physicians and nurses from four different primary care practices in the western and eastern parts of Norway. We used semi-structured telephone interviews for collecting the data between January and September 2021. RESULTS: The analysis revealed two key features of the primary care physicians and the nurses experience with interprofessional collaboration in primary care practices. The first involved managing the influence of discrepancies in their expectations of IPC and the second involved becoming aware of the competence they developed that allowed for better complementarity consultation. CONCLUSIONS: This study indicates that interprofessional collaboration in primary care practice requires that primary care physicians and nurses clarify their expectations and, in turn, determine how flexible they can become in changing their usual primary care practices. Moreover, findings reveal that nurses and primary care physicians had discrepancies in expectations of how interprofessional collaboration should be carried out in primary care practice. However, both the nurses and primary care physicians appreciated the blending of complementary competencies and skills that facilitated a more collaborative care practice. They experienced that this interprofessional collaboration represented an essential quality improvement in the primary care services. TRIAL REGISTRATION: The trial is registered 03/09/2019 in ClinicalTrials.gov (ID: NCT04076384).

Evaluating the effect of Conversation Cards on agenda-setting in annual diabetes status visits: A multi-method study.

OBJECTIVE: To evaluate Conversation Cards for shared agenda-setting between patients and nurses in status visits for type 2 diabetes. METHODS: Non-randomized comparison of survey responses between intervention and control groups. Content analysis of interview data of patient experiences from a purposive sample of the intervention group. RESULTS: The survey included 52 patients in the intervention and 55 in the control group. Survey data showed no significant differences between the groups. Regardless of the intervention, patients experienced that topics relevant to them were addressed. One in four patients rated the Conversation Cards as very supportive. Interview data indicated that the Conversation Cards added structure, commitment to the conversation, and support to raise topics not previously considered diabetes related. CONCLUSION: Topics of concern were addressed in both intervention and control groups. The Conversation Cards for agenda-setting clarified a mutually agreed structure of the conversation, eased raising hitherto ignored topics, and increased engagement. PRACTICE IMPLICATIONS: The Conversation Cards have potential to improve shared agenda-setting, but implementation requires efforts from both parties. Patients are expected to consider their concerns and take an active part in agenda-setting. Nurses are expected to collaborate with the patient in the agenda-setting, which might challenge the nurses' habitual practice.

Copenhagen Diabetes Consensus (CODIAC) 2021: User involvement in diabetes care, prevention and research.

AIMS: User involvement is pivotal for health development, but there are significant gaps in our understanding of the concept. The Copenhagen Diabetes Consensus on User Involvement in Diabetes Care, Prevention and Research (CODIAC) was established to address these gaps, share knowledge and develop best practices. METHODS: A literature review of user involvement was undertaken in diabetes care, prevention and research. Moreover, a Group Concept Mapping (GCM) survey synthesized the knowledge and opinions of researchers, healthcare professionals and people with diabetes and their carers to identify gaps between what is important for user involvement and what is being done in practice. Finally, a consensus conference discussed the main gaps in knowledge and practice while developing plans to address the shortcomings. RESULTS: The literature review demonstrated that user involvement is an effective strategy for diabetes care, prevention and research, given the right support and conditions, but gaps and key challenges regarding the value and impact of user involvement approaches were found. The GCM process identified 11 major gaps, where important issues were not being sufficiently practised. The conference considered these gaps and opportunities to develop new collaborative initiatives under eight overall themes. CONCLUSIONS: User involvement is effective and adds value to diabetes care, prevention and research when used under the right circumstances. CODIAC developed new learning about the way in which academic and research knowledge can be transferred to more practice-oriented knowledge and concrete collaborative initiatives. This approach may be a potential new framework for initiatives in which coherence of process can lead to coherent outputs.

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.

The impact of a patient decision aid on treatment choices after anterior cruciate ligament injuries.

PURPOSE: The present study aimed to investigate whether exposure to a patient decision aid (PDA) had an impact on the proportion of patients selecting non-surgical or surgical treatments after anterior cruciate ligament (ACL) injuries and whether exposure to a PDA affected the proportion of patients switching from non-surgical to surgical treatment within the first year. METHODS: In a consecutive case series, proportions of surgery and non-surgery were compared before and after patients' exposure to a PDA. Data were collected from the health records of patients with ACL injuries who presented to the Clinic of Sports Traumatology. To identify proportional differences between the two groups, t-tests and proportion tests were used. RESULTS: In total, 1,053 patients with ACL injuries were included: 563 patients with no exposure to the PDA (January 2015 to January 2017) and 490 patients with exposure to the PDA (January 2017 to January 2019). Before implementing the PDA, 27% of the patients selected non-surgical treatment. After implementing the PDA, 30% choose non-surgical treatment (p > 0.05). Before implementing the PDA, 21% of patients who initially chose non-surgical treatment had surgery within the first year. After implementation of the PDA, this number fell to 16%, but the difference was not statistically significant (p > 0,05). CONCLUSION: Exposure to the PDA did not significantly alter the proportion of ACL injury patients selecting non-surgical or surgical treatments or the proportion of patients switching to surgery within the first year.

Patient involvement in decisions about discharge from the emergency department: A qualitative interview study of the healthcare professionals' experiences.

BACKGROUND: Patients in the emergency department are less involved in making decisions than they would like to be. Involving patients improves health-related outcomes, but success depends on the healthcare professional's ability to act in a patient-involving manner, and therefore more knowledge is needed about the healthcare professional's perspective of involving patients in the decisions. AIM: To explore what challenges healthcare professionals experience in their daily practice regarding patient involvement in decisions when planning discharge from the emergency department. METHOD: Five focus group interviews were conducted with nurses and physicians. The data were analyzed using content analysis. FINDINGS: The healthcare professionals described how they experienced that there is no choice to offer the patients in the clinical practice. First, they had to manage the department's routines, which directed them to focus on acute needs and avoid overcrowding. Second, it was too difficult to navigate the diversity of patients with different characteristics. Third, they wanted to guard the patient from a lack of genuine options. CONCLUSION: The healthcare professionals experienced patient involvement as incompatible with professionalism. If patient involvement is to be practiced, then new initiatives are needed to improve the conversation with the individual patient about decisions regarding their discharge.

Patient Involvement in Decisions regarding Emergency Department Discharge: A Multimethod Study.

Background: Unmet care needs and more than one reasonable discharge solution have been identified among patients in the emergency department. Less than half of the patients attending emergency care have reported being involved in decisions to the degree they have wanted. Having a person-centered approach, such as involving patients in decisions regarding their discharge, has been reported as being associated with beneficial outcomes for the patient. Aim: The aim of the study was to explore the extent of patients' involvement in discharge planning in acute care and how patient involvement in decisions regarding discharge planning is managed in clinical practice. Methods: A multimethod study, including both quantitative and qualitative data, was carried out. The quantitative part included a descriptive and comparative analysis of additional data from the patient's medical records and patient's responses to the CollaboRATE questionnaire. The qualitative part included a content analysis of notes from field studies of interactions between healthcare professionals and patients. Results: A total of 615 patients from an emergency department at a medium-sized hospital completed the questionnaire. Roughly, a third gave top-box scores (36%), indicating optimal involvement in decisions. Two factors, being discharged home and not readmitted, were significantly associated with the experience of being involved. In clinical practice, there was a focus on symptoms, and diagnostic tools and choice of treatment were decisive for the further care trajectory of the patients. Speed and low continuity left limited opportunities for dialogue to uncover patients' preferences. At the same time, the patients did not expect to be involved. Conclusions: Two out of three patients did not experience being involved in decisions regarding emergency department discharge. The interactions reflected an organizational structure in which the conditions for patient involvement were limited. Uncovering opportunities and initiatives to increase the number of patients who experience being involved in decisions is important tasks for the future.

The value of partnership in patient-driven as well as in researcher-driven projects.

Patient involvement in health research is rarely driven solely by patients, who could be considered to have the highest degree of investment in such research. In the Kidney Connect project, the patients have been the driving force. This commentary considers the following questions: How did we, as patients, lead the work as the driving force in the project? What went well and what did not go so well from our perspective? How did the project compare with work driven by researchers? We argue that projects driven solely by either patients or researchers each have their own limitations. Projects driven solely by patients have some limitations in their robustness, rigour, and likelihood of publication. Nevertheless, a project driven solely by patients has been able to produce findings that are broadly comparable to a project driven solely by researchers that employed methods ensuring robustness and rigour. We suggest collaboration between patients and researchers also for projects driven by patients.

Health research often uses patients as either participants or partners. Patients running the research is less common, even though the outcomes might be more important to patients than to anyone else. A medical company started the Kidney Connect project, but invited patients to drive it. The main driving role was planning and conducting data collection and analysis of data for the project. In this commentary, patient representatives describe how they led the project's work, what went well and what did not go so well for patients. It then compares the project's results with those from similar work that involved patients as partners but had only researchers in charge. We found that certain things can limit research that is run only by patients, but it has similar results to a project with only researchers in charge.

Flexible patient-reported outcome-based telehealth follow-up for type 1 diabetes: A qualitative study.

BACKGROUND: Successful diabetes management requires collaboration between patients and healthcare professionals and should be aligned with an individual's condition and resources. We developed a flexible, individualised, patient-reported outcome (PRO)-based telehealth intervention called "DiabetesFlex Care" in which patients completed an annual self-reported questionnaire from home, one required face-to-face appointment, and two optional outpatient consultations. In this study, we investigated patients' experiences using DiabetesFlex Care. METHODS: We conducted a qualitative, interpretive descriptive (ID) study based on semi-structured interviews with a purposeful sample of 36 patients with type 1 diabetes (T1D) who had used DiabetesFlex Care. Recorded audio data were transcribed and analysed inductively using the constant comparative method. RESULTS: DiabetesFlex Care changed participants' perspectives on living with diabetes. Patients became more involved in their own care and found that DiabetesFlex Care helped to make their conversations with healthcare professionals more relevant. Furthermore, participants appreciated the ability to both choose the format of their appointments (face-to-face vs. phone call) and cancel unnecessary appointments. CONCLUSION: DiabetesFlex Care was a flexible and inclusive health service that enabled patients to take more responsibility for their own diabetes management. The questionnaire-based approach in DiabetesFlex Care can help healthcare professionals systematically account for patients' perspectives and support user involvement and self-management. By extension, this approach can also help minimise healthcare-related disruptions in patients' lives. Further studies are needed to determine whether flexible PRO-based telehealth is an acceptable solution for all patients.

Open-source automated insulin delivery systems and formal healthcare: A qualitative study of challenges in the interaction between service-users with type 1 diabetes and healthcare professionals.

OBJECTIVES: To explore the challenges that open-source automated insulin delivery systems pose to the encounter between service-users and healthcare professionals and how these challenges might be addressed in the future. METHODS: Five adult service-users and six healthcare professionals participated in semi-structured interviews. A six-step thematic analysis was conducted, the focus being on challenges and needs for improvement of the interactions. RESULTS: The analysis revealed three overarching challenges and wishes: (1) Lack of exchange of experiences. Service-users are reticent about disclosing their use of the systems to healthcare professionals. (2) Unclear ethical responsibility. Service-users are aware of their responsibility and guidelines can help to alleviate healthcare professional's legal responsibility; however, ambiguities around ethical responsibility for healthcare professionals remain an impediment to meaningful clinical interactions. (3) Unresolved individual and mutual expectations. Service-users expect better access to technology and focus on psychosocial aspects. In contrast, healthcare professionals fear the burden associated with the rising technical expectations. CONCLUSION: Transparency and openness towards open-source systems need to be part of service-user and healthcare professionals interaction. Requirements for future care include improved knowledge about the systems, an openminded approach towards user-driven initiatives among healthcare professionals, and a focus on psychosocial aspects in the interaction.

Test-retest reliability and measurement error of the WHO-5 Well-being Index and the Problem Areas in Diabetes questionnaire (PAID) used in telehealth among patients with type 1 diabetes.

BACKGROUND: Patient-reported outcome (PRO) measures may be used in telehealth for the clinical assessment of mental health and diabetes distress, which are important aspects in diabetes care, but valid and reliable instruments on these topics are necessary. We aimed to evaluate the test-retest reliability and measurement error of the Danish versions of the WHO-Five Well-being Index (WHO-5) and Problem Areas in Diabetes (PAID) questionnaires used in a PRO-based telehealth intervention among patients with type 1 diabetes. A further aim was to evaluate the test-retest reliability of single items concerning patients' symptom burden and general health status. METHODS: Outpatients with type 1 diabetes from the Steno Diabetes Center Aarhus, Aarhus University Hospital, Denmark, were enrolled from April 2019 to June 2020. Patients aged ≥ 18 who had type 1 diabetes for > 1 year, internet access, and the ability to understand, read, and write Danish were included. Intraclass correlation coefficients (ICC) and weighted Kappa values were used to assess test-retest reliability, and measurement error was assessed by estimating the minimal detectable change (MDC). RESULTS: A total of 146/255 (57%) patients completed the web questionnaire twice. The median response time between the two-time points was five days. The ICC of the WHO-5 scale was 0.87 (95% CI 0.82-0.90), and MDC was 18.56 points (95% CI 16.65-20.99). The ICC of the PAID scale was 0.89 (95% CI 0.84-0.92), and MDC was 11.86 points (95% CI 10.46-13.70). Overall, test-retest reliability of single symptoms and general health status items was substantial. CONCLUSIONS: The WHO-5 and PAID questionnaires, and single symptoms and general health status items showed substantial test-retest reliability among patients with type 1 diabetes. Measurement error of the PAID questionnaire was considered acceptable; however, a larger measurement error of the WHO-5 questionnaire was observed. Further research is recommended to explore these findings.

Development and Test of a Decision Aid for Shared Decision Making in Patients with Anterior Cruciate Ligament Injury.

Background. Patients with anterior crucial ligament injury are faced with a choice between surgery or nonsurgical treatment with intensive rehabilitation. Patients must be involved in the decision making to choose a treatment that meets their individual values, lifestyle, and conditions. The aim of the study was to describe, develop, and evaluate a patient decision aid to support shared decision making. Methods. The development of a patient decision aid was based on international criteria, current literature, and former patients' experiences and suggestions on how to optimize the decision-making process. The patient decision aid was evaluated by the SDM-Q9 questionnaire and semistructured interviews with patients and doctors. Results. On a scale from 0 to 5, patients experienced a high degree of shared decision making in their treatment decision both before (score 4.3) and after (score 4.3) implementation of the patient decision aid (P = .72). From interviews, patients expressed that they found the patient decision aid very useful. Reflection time was especially important for some patients. Doctors reported that the patient decision aid improved shared decision making by supporting the dialogue clarifying patients' values concerning issues important for treatment choices. Conclusion. A systematic process involving patients with an anterior crucial ligament injury was successfully used to develop a patient decision aid for treatment options. No statistically significant difference in the SDM-Q9 score was found presumably caused by the ceiling effect. However, patients experienced the decision aid as very useful when making treatment decisions, and doctors reported that it improved the dialogue clarifying patients' values important for the treatment options. The developing process and patient decision aid can be used as inspiration in similar situations to increase shared decision making in treatment choices. Highlights: A patient decision aid for anterior cruciate ligament injured patients was developed based on international criteria, the current literature, and patients' experiences and suggestions on how to optimize the decision-making process about surgical and nonsurgical treatment.The decision aid improved shared decision making by supporting the dialog between the patient and the doctor to clarify the patients' values concerning issues important for the treatment options.

Randomized controlled study to evaluate the impact of flexible patient-controlled visits in people with type 1 diabetes: The DiabetesFlex Trial.

AIM: The objective of this study was to assess the impact of health care-initiated visits versus patient-controlled flexible visits on clinical and patient-reported outcomes in people with type 1 diabetes. METHODS: The DiabetesFlex trial was a randomized controlled, pragmatic non-inferiority 15-month follow-up study comparing standard care (face-to-face visits every 4 months) with DiabetesFlex (patient-controlled flexible visits using patient-reported, outcome-based telehealth follow-up). Of 343 enrolled participants, 160 in each group completed the study. The primary outcome was mean change in HbA1c from baseline to 15-month follow-up. Secondary outcomes were blood pressure, lipid levels, frequency of visits, the World Health Organization score-five well-being-index (WHO-5), the Problem Areas In Diabetes (PAID) scale and experience of participation in own care (participation score). RESULTS: The adjusted mean difference in HbA1c between standard care and DiabetesFlex was similar and below the predefined non-inferiority margin of 0.4% (-0.03% [95%CI: 0.15, 0.11]/-0.27 mmol/mol [-1.71, 1.16]). No intergroup mean changes in lipid or blood pressure were observed. Conversely, DiabetesFlex participants presented an increased mean WHO-5 index of 4.5 (1.3, 7.3), participation score of 1.1 (0.5, 2.0), and decreased PAID score of -4.8 (-7.1, -2.6) compared with standard care. During follow-up, DiabetesFlex participants actively changed 23% of face-to-face visits to telephone consultations, cancelled more visits (17% vs. 9%), and stayed away without cancellation less often (2% vs. 8%). CONCLUSION: Compared with standard care, flexible patient-controlled visits combined with patient-reported outcomes in participants with metabolic controlled type 1 diabetes and good psychological well-being further improved diabetes-related well-being and decreased face-to-face visits while maintaining safe diabetes management.

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.

"Less is more": A design thinking approach to the development of the agenda-setting conversation cards for people with type 2 diabetes.

Objectives: To report a design-thinking approach to a user-centred agenda-setting tool for use in type 2 diabetes clinics. Methods: The study followed design-thinking phases: emphasizing, defining, and ideating an intervention, followed by iterative user-testing of prototypes. It was conducted at a Danish diabetes center using observations, interviews, workshops, focus groups, and questionnaires. Results: Nurses wanted to put more emphasis on agenda-setting in status visits. During brainstorms the idea of using illustrated cards that listed key agenda topics was proposed and became the goal of this research. Adopting a design-thinking approach provided the basis for developing prototypes for iterative user-testing that led to a version that was acceptable to stakeholders. The resulting tool, Conversation Cards, was a set of cards that listed and illustrated seven key topics that were considered important to consider during diabetes status visits. Conclusion: The goal of the Conversation Card intervention is to support collaborative agenda-setting in diabetes status visits. Further evaluation is needed to determine the utility and acceptability of the tool to nurses and to people with diabetes in routine settings. Innovation: This novel tool is designed to trigger agenda-setting conversations and thereby prioritize individuals' choice of topics to talk about during diabetes status visits.

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.

Effect of patient-reported outcomes as a dialogue-based tool in cancer consultations on patient self-management and health-related quality of life: a clinical, controlled trial.

BACKGROUND: With increased survival among patients with metastatic melanoma and limited time with health care providers, patients are expected to assume a more active role in managing their treatment and care. Activated patients have the knowledge, skills, and confidence to make effective solutions to self-manage health. The use of patient-reported outcomes (PRO) could have the potential to enhance patient activation. However, PRO-based interventions that facilitate an activation in patients with metastatic melanoma are lacking and warranted. MATERIAL AND METHODS: In this prospective non-randomized controlled, clinical trial, patients with metastatic melanoma were assigned to either the intervention (systematic feedback and discussion of PRO during consultation) given at one hospital or the control group (treatment as usual) if they received treatment from two other hospitals in Denmark. The primary outcome was the patient activation measure (PAM), which reflects self-management. Secondary outcomes were health-related quality of life (HRQoL), self-efficacy, and Patient-Physician interaction. Outcomes were measured at baseline, and after 3, 6, and 12 months. The analysis of the effect from baseline to 12 months employed mixed-effects modeling. RESULTS: Between 2017 and 2019, patients were allocated to either the intervention group (n = 137) or the control group (n = 142). We found no significant difference in the course of patient activation between the two groups over time. The course of HRQoL was statistically significantly improved by the intervention compared to the control group. Especially, females in the intervention group performed better than males. The other secondary outcomes were not improved by the intervention. CONCLUSION: The intervention did not improve knowledge, skills, and confidence for self-management for patients with metastatic melanoma. Neither did it improve coping self-efficacy nor perceived efficacy in Patient-Physician interaction. However, the results suggest that the intervention can have a significant impact on HRQoL and in particular social and emotional well-being among the females.