Investigating Digital Patient-Reported Outcome Measures in Patient-Centered Diabetes Specialist Outpatient Care (DigiDiaS): Protocol for a Multimethod Prospective Observational Study.

BACKGROUND: Living with type 1 diabetes is challenging, and to support self-management, repeated consultations in specialist outpatient care are often required. The emergence of new digital solutions has revolutionized how health care services can be patient centered, providing unprecedented opportunities for flexible, high-quality care. However, there is a lack of studies exploring how the use of digital patient-reported outcome measures (PROMs) for flexible specialist care affects diabetes self-management. To provide new knowledge on the relevance of using PROMs in standard care, we have designed a multimethod prospective study. OBJECTIVE: The overall aim of this protocol is to describe our prospective multimethod observational study designed to investigate digital PROMs in a routine specialist outpatient setting for flexible patient-centered diabetes care (DigiDiaS). METHODS: This protocol outlines the design of a multimethod prospective observational cohort study that includes data from electronic health records, self-reported questionnaires, clinical consultation field observations, and individual in-depth interviews with patients and diabetes health care personnel. All patients with type 1 diabetes at a designated outpatient clinic were invited to participate and use the digital PROM implemented in clinical care. Both users and nonusers of the digital PROM were eligible for the prospective study, allowing for a comparison of the two groups. Data were collected at baseline and after 12 months, including self-management as the primary outcome assessed using the Patient Activation Measure, along with the secondary outcomes of digital health literacy, quality of life, health economy, and clinical variables such as glycated hemoglobin. RESULTS: The digital solution was implemented for routine clinical care in the department in November 2021, and data collection for the prospective study started in October 2022. As of September 6, 2023, 84.6% (186/220) of patients among those in the digital PROM and 15.5% (34/220) of patients among the nonusers have consented to participate. We expect the study to have enough participants by the autumn of 2023. With 1 year of follow-up, the results are expected by spring 2025. CONCLUSIONS: In conclusion, a multimethod prospective observational cohort study can offer valuable insights into the relevance, effectiveness, and acceptability of digital tools using PROMs in diabetes specialist care. Such knowledge is crucial for achieving broad and successful implementation and use of these tools in a large diabetes outpatient clinic. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52766.

The needs of healthcare personnel who provide home-based pediatric palliative care: a mixed method systematic review.

BACKGROUND: Families with children who have life-limiting or life-threatening illnesses often prefer to receive care at home to maintain a sense of normalcy. However, caring for children at home is different from caring for them in a hospital, and we do not know enough about the needs of healthcare personnel who provide home-based pediatric palliative care. AIM: The aim of this review was to systematically summarize, appraise and synthesize available quantitative, qualitative, and mixed methods research to identify the needs of healthcare personnel in home-based pediatric palliative care. METHODS: We used the Joanna Briggs Institute methodology for mixed method systematic reviews and searched systematically in Medline, Embase, PsycINFO, CINAHL, Web of Science, AMED, and the Cochrane Library. Quantitative, qualitative and mixed methods studies from 2012 to 2021 reporting on healthcare personnel's needs, experiences, perspectives, coping strategies, and/or challenges related to home-based pediatric palliative care were eligible for inclusion. The screening was conducted independently in pairs. The quantitative data were transformed into qualitative data and analyzed using thematic synthesis. RESULTS: Overall, 9285 citations were identified, and 21 studies were eligible for review. Most of the studies were qualitative and interview-based. Few studies included healthcare personnel other than doctors and nurses. Three analytical themes were developed: (1) being connected and engaged with the child and family, (2) being part of a dedicated team, and (3) ensuring the quality of home-based pediatric palliative care services. Healthcare personnel strived to deliver high-quality, home-based pediatric palliative care. Establishing a relationship with the child and their parents, collaborating within a committed team, and having sufficient resources were identified as important needs influencing healthcare personnel when providing home-based pediatric palliative care. CONCLUSION: The findings underscore the importance of building trusting relationships among healthcare personnel, children, and families. It also emphasizes the significance of interdisciplinary collaboration that is effective, along with the presence of enough skilled personnel to ensure high-quality home-based pediatric palliative care. Further research is necessary to include healthcare personnel beyond doctors and nurses, as palliative care requires a team of professionals from various disciplines. Addressing the needs of healthcare personnel can ensure safe and professional palliative care for children at home.

Patient-reported outcome measures in diabetes outpatient care: a scoping review.

BACKGROUND: Patient-reported outcome (PRO) measures are increasingly used in clinical diabetes care to increase patient involvement and improve healthcare services. The objectives were to identify instruments used to measure PROs in outpatient diabetes clinics and to investigate the use of these PRO measures alongside the experiences of patients and healthcare personnel in a clinical setting. RESEARCH DESIGN AND METHODS: A scoping review was conducted according to the framework of Arksey and O'Malley with scoping searches of Cinahl, EMBASE, Medline and Health and Psychosocial Instruments. Studies reporting on adults with diabetes in a clinical setting where the PRO measure response directly affected patient care were eligible for inclusion. RESULTS: In total, 35 197 citations were identified, of which 7 reports presenting 4 different PRO measures were included in the review. All four of the included items measured psychosocial aspects of diabetes, and three included elements of the Problem Areas in Diabetes scale. All the patients were satisfied with the use of PRO measures in clinical care, whereas the level of satisfaction among healthcare personnel with PRO measures varied within and among studies. CONCLUSIONS: The limited number of eligible studies in this review suggests that research on PRO measures for diabetes outpatient care is scarce. Patients welcome the opportunity to express their concerns through the systematic collection of PRO measures, and some healthcare personnel value the broader insight that PRO measures provide into the impact of diabetes on patients' lives. However, the heterogeneity among services and among patients challenges the implementation of PRO measures. Research is needed to explore how PRO measures in clinical outpatient care affect healthcare personnel workflow. REVIEW REGISTRATION: https://doi.org/10.17605/OSF.IO/46AHC.

Patient-reported outcome measures in children, adolescents, and young adults with palliative care needs-a scoping review.

BACKGROUND: Measuring outcomes facilitates evaluation of palliative services for children, adolescents, and young adults (CAYAs) with life-limiting and/or life-threatening (LL/LT) conditions. Implementation of patient-reported, proxy-reported, or patient-centered outcome measures (hereafter PROMs) is recommended to ensure palliative services. The purpose of this scoping review was to provide an overview of PROMs relevant for CAYAs living with LL/LT conditions eligible for pediatric palliative care (PPC). METHODS: Arksey and O'Malley's 6-stage scoping review framework was used to guide the review. The identified citations had to report on PROMs in any context including CAYAs with LL/LT conditions up to 25 years of age. A systematic search of Medline, EMBASE, CINAHL, APA PsycInfo, Health and Psychosocial Instruments, and AMED took place in January 2021 and was updated in June 2022. Citations were screened independently by pairs of researchers. The scoping review protocol was registered, and peer-review published. RESULTS: Of 3690 identified citations, 98 reports were included, of which the majority were from Western countries and about PROMs in CAYAs living with cancer or organ failure. A total of 80 PROMs were identified, assessing a range of phenomena, where quality of life and symptoms (especially pain) during the stage of ongoing care were the most frequent. There were only a few reports about outcome measures at time of diagnosis or in end-of-life care. CAYAs self-reported on the PROMs or collaborated with their parents in about half of the reports, while the remaining had proxies answering on behalf of the CAYAs. In the identified reports, PROMs were used to characterize a sample through cross-sectional or longitudinal research, and less often to assess effects of interventions. CONCLUSION: The identified PROMs in the CAYA population eligible for PPC is characterized by studies in high-income countries during ongoing care, primarily in patients with cancer or organ failure. More research is needed in patients living with other LL/LT conditions, and during different stages of the disease course, especially at time of diagnosis, during transition to adulthood, and in end-of-life care. This scoping review of PROMs relevant for young patients eligible for PPC may inform future research about patient-/proxy-reported or patient-centered outcome measures in PPC. TRIAL REGISTRATION: Review registration: ( https://osf.io/yfch2/ ) and published protocol (Holmen et al. Syst Rev. 10:237, 2021).

Integrating research in health professions education: a scoping review.

BACKGROUND: Integrating teaching and research may boost students' learning and improve future clinical practice when incorporated into education. Explorations of health professions students' involvement in the research processes and their learning outcomes are sparse. Thus, the purpose of this scoping review is to explore the existing scientific literature on courses involving students from health professions education in research activities. The research questions are: Which parts of the research process are the health professions students involved in, and what are the students' main learning outcomes related to the research process reported to be? METHODS: A scoping review following the six-step approach of Arksey and O'Malley was undertaken. We searched four electronic databases to identify studies focusing on research-based teaching in health professions education. Inspired by content analysis, we identified key concepts relating to the research process and learning outcomes. RESULTS: We screened 1084 abstracts, reviewed 95 full-text reports, and included 24 for analysis. Overall, the students were more involved in conducting and disseminating research than in the planning phases. Learning outcomes were most frequently reported as specific research skills, such as conducting literature reviews, writing academically, and presenting results, but also as improved understanding of research in general as well as improved motivation and confidence in conducting research. CONCLUSIONS: The heterogeneity of educational programs, study designs, and measures makes it difficult to draw conclusions across the studies included in the review. More research is needed to conclude whether health professions students who actively engage in research gain a better understanding of the research process, become more likely to pursue research in their practice, or are more motivated to choose an academic career.

Digital Outpatient Services for Adults: Development of an Intervention and Protocol for a Multicenter Non-Randomized Controlled Trial.

BACKGROUND: Health care services are being challenged by an increasing number of patients and limited resources. Hence, research investigating options to reduce costs and increase effectiveness is warranted. Digital outpatient services can provide flexible and tailored follow-up, improve patients' health literacy, and facilitate the identification of adverse courses of disease. However, previous research largely focused on disease-specific contexts and outcomes. Therefore, research on digital services investigating generic outcomes such as health literacy is warranted. OBJECTIVE: This article aims to describe the "digital outpatient service" intervention and present the protocol for an ongoing multicenter, nonrandomized trial evaluating this intervention. METHODS: Based on previous experiences and evidence-based knowledge, we developed this intervention through patient-journey maps in collaboration with each clinical specialty. The patients gain access to a mobile app for self-monitoring and patient-reported outcomes and a chat for contact between the patients and health care workers. The health care workers' dashboard includes a traffic light system to draw attention to the most urgent patient reports. In this multicenter, non-randomized controlled trial, patients are allocated to the control group receiving standard care or the 6-month intervention. Eligible patients are aged 18 years or older who receive outpatient care at the neurology, lung, pain, or cancer departments at 2 university hospitals in Norway. Our evaluation will include patient-reported outcomes, qualitative interviews, and clinical measures. The primary outcome will be health literacy using the Health Literacy Questionnaire. A sample size of 165 participants is split into a 1:2 ratio in favor of the intervention. We will analyze quantitative data in SPSS (IBM Corp) using descriptive statistics and logistic regression, and qualitative data using thematic analysis. RESULTS: This trial started in September 2021, and the intervention started in January 2022. Recruitment has ended, with 55 patients in the control group and 107 patients in the intervention group. Follow-up is expected to end in July 2023, with results expected to be obtained in December 2023. CONCLUSIONS: This study will evaluate an intervention facilitated by an already certified digital multicomponent solution, with intervention content based on patient-reported outcomes, health literacy, and self-monitoring. The intervention is specifically tailored to each participating center and the needs of their patients using patient journey maps. The comprehensive and generic evaluation of this digital outpatient service intervention is a strength as it targets a heterogeneous sample of patients. Thus, this study will provide important knowledge about the applicability and effects of digital health care services. As a result, patients and health care workers will gain a new, evidence-based understanding of whether and how digital tools may be used in clinical care. TRIAL REGISTRATION: ClinicalTrials.gov NCT05068869; https://clinicaltrials.gov/ct2/show/NCT05068869. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/46649.

Advantages and Challenges of Using Telehealth for Home-Based Palliative Care: Systematic Mixed Studies Review.

BACKGROUND: Owing to the increasing number of people with palliative care needs and the current shortage of health care professionals (HCPs), providing quality palliative care has become challenging. Telehealth could enable patients to spend as much time as possible at home. However, no previous systematic mixed studies reviews have synthesized evidence on patients' experiences of the advantages and challenges of telehealth in home-based palliative care. OBJECTIVE: In this systematic mixed studies review, we aimed to critically appraise and synthesize the findings from studies that investigated patients' use of telehealth in home-based palliative care, focusing on the advantages and challenges experienced by patients. METHODS: This is a systematic mixed studies review with a convergent design. The review is reported according to the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. A systematic search was performed in the following databases: Allied and Complementary Medicine Database, CINAHL, Cochrane Central Register of Controlled Trials, Embase, Latin American and Caribbean Health Sciences Literature, MEDLINE, PsycInfo, and Web of Science. The inclusion criteria were as follows: studies using quantitative, qualitative, or mixed methods; studies that investigated the experience of using telehealth with follow-up from HCPs of home-based patients aged ≥18; studies published between January 2010 and June 2022; and studies published in Norwegian, Danish, Swedish, English, Portuguese, or Spanish in peer-reviewed journals. Five pairs of authors independently assessed eligibility of the studies, appraised methodological quality, and extracted data. The data were synthesized using thematic synthesis. RESULTS: This systematic mixed studies review included 41 reports from 40 studies. The following 4 analytical themes were synthesized: potential for a support system and self-governance at home; visibility supports interpersonal relationships and a joint understanding of care needs; optimized information flow facilitates tailoring of remote caring practices; and technology, relationships, and complexity as perpetual obstacles in telehealth. CONCLUSIONS: The advantages of telehealth were that patients experience a potential support system that could enable them to remain at home, and the visual features of telehealth enable them to build interpersonal relationships with HCPs over time. Self-reporting provides HCPs with information about symptoms and circumstances that facilitates tailoring care to specific patients. Challenges with the use of telehealth were related to barriers to technology use and inflexible reporting of complex and fluctuating symptoms and circumstances using electronic questionnaires. Few studies have included the self-reporting of existential or spiritual concerns, emotions, and well-being. Some patients perceived telehealth as intrusive and a threat to their privacy at home. To optimize the advantages and minimize the challenges with the use of telehealth in home-based palliative care, future research should include users in the design and development process.

Health Care Professionals' Experiences and Perspectives on Using Telehealth for Home-based Palliative Care: Scoping Review.

BACKGROUND: Telehealth seems feasible for use in home-based palliative care (HBPC). It may improve access to health care professionals (HCPs) at patients' homes, reduce hospital admissions, enhance patients' feelings of security and safety, and increase the time spent at home for patients in HBPC. HBPC requires the involvement of various HCPs such as nurses, physicians, allied health professionals, dietitians, psychologists, religious counselors, and social workers. Acceptance of the use of technology among HCPs is essential for the successful delivery of telehealth in practice. No scoping review has mapped the experiences and perspectives of HCPs regarding the use of telehealth in HBPC. OBJECTIVE: The aim of this review was to systematically map published studies on HCPs' experiences and perspectives on the use of telehealth in HBPC. METHODS: A scoping review was conducted using the methodology of Arksey and O'Malley. The review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews. A systematic search was performed in AMED, CINAHL, Embase, MEDLINE, PsycINFO, and Web of Science for studies published in peer-reviewed journals between January 1, 2000, and August 23, 2022. The reference lists of the included papers were hand searched to identify additional studies. The inclusion criteria were (1) studies using qualitative, quantitative, or mixed methods; (2) studies including HCPs using telehealth with patients in HBPC; (3) studies on HCPs' experiences and perspectives on the use of telehealth in HBPC; (4) studies published between January 1, 2000, and August 23, 2022; and (5) studies published in English, Portuguese, Norwegian, Danish, Swedish, or Spanish. Pairs of authors independently included studies and extracted data. The first 2 stages of thematic synthesis were used to thematically organize the data. RESULTS: This scoping review included 29 papers from 28 studies. Four descriptive themes were identified: (1) easy to use but technological issues undermine confidence, (2) adds value but personal and organizational barriers challenge adoption, (3) potential to provide useful and meaningful patient-reported data, and (4) mutual trust as a prerequisite for interpersonal relationships. CONCLUSIONS: Telehealth in HBPC seems to be easy to use and may improve the coordination of care, time efficiency, clinical assessments, and help build and enhance personal and professional relationships. However, the introduction of technology in HBPC is complex, as it may not align well with the overall aim of palliative care from HCPs' point of view. Further, changes in practice and requirements for HCPs may reduce motivation for the use of telehealth in HBPC. HCPs consider themselves to have central roles in implementing telehealth, and a lack of acceptance and motivation is a key barrier to telehealth adoption. Policy makers and telehealth developers should be aware of this potential barrier when developing or implementing new technology for use in HBPC. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/33305.

Unpacking the Public Health Triad of Social Inequality in Health, Health Literacy, and Quality of Life-A Scoping Review of Research Characteristics.

Social inequalities in health, health literacy, and quality of life serve as distinct public health indicators, but it remains unclear how and to what extent they are applied and combined in the literature. Thus, the characteristics of the research have yet to be established, and we aim to identify and describe the characteristics of research that intersects social inequality in health, health literacy, and quality of life. We conducted a scoping review with systematic searches in ten databases. Studies applying any design in any population were eligible if social inequality in health, health literacy, and quality of life were combined. Citations were independently screened using Covidence. The search yielded 4111 citations, with 73 eligible reports. The reviewed research was mostly quantitative and aimed at patient populations in a community setting, with a scarcity of reports specifically defining and assessing social inequality in health, health literacy, and quality of life, and with only 2/73 citations providing a definition for all three. The published research combining social inequality in health, health literacy, and quality of life is heterogeneous regarding research designs, populations, contexts, and geography, where social inequality appears as a contextualizing variable.

Adapting a Patient-Reported Outcome Measure to Digital Outpatient Specialist Health Care Services for Type 1 Diabetes: User Involvement Study.

BACKGROUND: Diabetes self-management is crucial for patients with type 1 diabetes, and digital services can support their self-management and facilitate flexible follow-up. The potential of using digital patient-reported outcome (PRO) measures in routine outpatient care is not fully used owing to a lack of adapted PRO measures. OBJECTIVE: This study presents the process of identifying and adapting a digital PRO measure for use in clinical diabetes practice and describes the preferred item topics of the adapted PRO measure, as reported by patients and diabetes specialist nurses. METHODS: With the involvement of patients, diabetes specialist nurses, management, and researchers, we hosted a series of workshops and 2 dialogue conferences. Scoping searches to identify relevant PRO measures formed the foundation for the process. An in-person dialogue conference was conducted with diabetes specialist nurses as participants, and a digital dialogue conference was conducted with patients with type 1 diabetes as participants. A diabetes-specific PRO measure was translated and adapted to our digital platform. Notes and summaries from the dialogue conferences were imported into NVivo (QSR International) and thematically analyzed as a single combined data set. RESULTS: The thematic analysis of the 2 dialogue conferences aimed to explore the views of patients with type 1 diabetes and diabetes specialist nurses on the outcomes necessary to measure. An overarching theme, Ensuring that the PRO measure captures the patients' needs precisely and accurately, in a way that facilitates care and communication with health care personnel, was identified and supported with data from both the patients and diabetes specialist nurses. This theme contained four categories: The need for explanatory text after questions to ensure understanding and accurate response, Capturing individual needs in standardized questions, getting to the heart of the patient's problem, and The questions increase patient reflection. CONCLUSIONS: We successfully conducted an iterative process that identified a PRO measure aligned with the topics raised by the diabetes specialist nurses. Similarly, the patients found the PRO measure to be relevant and one that was addressing their needs. Only minor adjustments were necessary when programming the PRO measure in the digital platform. Our management, patients, and diabetes specialist nurses had a valuable impact on the results. User involvement facilitated a specific focus on the clinical requests to be met by PRO measures and how they must be adapted to local and digital platforms. Overall, this has facilitated the current implementation of the adapted digital PRO measure.

Stories of paediatric palliative care: a qualitative study exploring health care professionals' understanding of the concept.

BACKGROUND: By sharing patient stories, health care professionals (HCPs) may communicate their attitudes, values and beliefs about caring and treatment. Previous qualitative research has shown that HCPs usually associate paediatric palliative care (PPC) with death or dying and that they find the concept challenging to understand and difficult to implement. Attending to HCPs' stories may provide a richer account of their understanding of PPC. Thus, the aim of this study was to explore PPC stories narrated by HCPs to gain increased insight into their understanding of what PPC entails. METHODS: This qualitative study collected data from four focus group interviews with 21 HCPs from different units in two Norwegian hospitals. Stories told by the HCPs to illustrate their comprehension of PPC were analysed following thematic analysis procedures. RESULTS: Four themes were identified illustrating what PPC meant to the participants: creating spaces for normality, providing tailored support for the family, careful preparations for saying goodbye and experiencing dilemmas and distress. The stories centred on family care, particularly relating to dramatic or affective situations when the death of a child was imminent. CONCLUSION: The stories reflect how the HCPs view PPC as a specific field of health care that requires particular professional sensitivity, including good communication, collaboration and planning. Thus, the HCPs in this study demonstrated knowledge about the core qualities needed to succeed in PPC. However, similar to previous research, the stories illustrate that how HCPs speak about PPC is strongly associated with end-of-life care, and by that the HCPs do not capture the breadth of the PPC concept. The findings highlight the importance of increasing knowledge about the meaning and content of PPC among HCPs in order to maintain quality of life for all children with life-limiting or life-threatening conditions throughout their illness trajectory.

"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.

Making room for life and death at the same time - a qualitative study of health and social care professionals' understanding and use of the concept of paediatric palliative care.

BACKGROUND: The concept of pediatric palliative care (PPC) is applied differently within the healthcare system and among healthcare professionals (HCPs). To our knowledge, no studies have investigated how multidisciplinary HCPs understand the concept of PPC and the aim of this study was to explore the concept of PPC from the view of HCP in a paediatric setting. METHODS: We employed an explorative and descriptive design and conducted four focus groups with a total of 21 HCPs working in hospitals with children in palliative care. The data were analysed using qualitative content analysis. RESULTS: The data analysis of the concept of pediatric palliative care resulted in two themes. The first theme "A frightening concept that evokes negative emotions," contains categories to explore the meaning, named "An unfamiliar and not meaningful concept, "A concept still associated with death and dying" and "Healthcare professionals' responsibility for introducing and using the concept and, to obtain a common meaning." The second theme was named "A broad and complementary concept," containing the categories "Total care for the child and the family," "Making room for life and death at the same time" and "The meaning of alleviation and palliative care." CONCLUSIONS: The included HCPs reflected differently around PPC but most of them highlighted quality of life, total care for the child and the child's family and interdisciplinary collaboration as core elements. Attention to and knowledge among HCPs might change the perception about PPC from a frightening concept to one that is accepted by all parties, implemented in practice and used as intended. However, our study reveals that there is still some work to do before PPC is understood and accepted by all those involved.

Health Care Professionals' Experiences and Perspectives on Using Telehealth for Home-Based Palliative Care: Protocol for a Scoping Review.

BACKGROUND: Telehealth seems feasible for use in home-based palliative care. However, acceptance among health care professionals (HCPs) is essential for the successful delivery of telehealth in practice. No scoping review has mapped the experiences and perspectives of HCPs on the use of telehealth for home-based palliative care. OBJECTIVE: The aim of this review is to systematically map published studies on HCPs' experiences and perspectives on the use of telehealth in home-based palliative care. METHODS: The proposed scoping review will employ the methodology of Arksey and O'Malley. This protocol is guided by the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocol (PRISMA-P). A systematic search will be performed in MEDLINE, PsycINFO, EMBASE, CINAHL, Allied and Complementary Medicine (AMED), and Web of Science for studies published between January 2000 and July 5, 2021. We will also hand search the reference lists of included papers to identify additional studies of relevance. The search will be updated in 2022. Pairs of authors will independently assess the eligibility of studies and extract data. The first 2 stages of thematic synthesis will be used to thematically organize the data. Because the scoping review methodology consists of reviewing and collecting data from publicly available materials, this study does not require ethics approval. RESULTS: The database searches; testing of eligibility criteria; and screening of titles, abstracts, and full-text papers will be performed by fall 2021. The results from this scoping review will be presented as a descriptive summary of the results from all included papers, and will be inductively organized into descriptive themes. A frequency table illustrating which papers were included in which descriptive themes will be made. Results are anticipated by the fall of 2022. CONCLUSIONS: A mapping of studies could identify research gaps regarding HCPs' experiences and perspectives on the use of telehealth in home-based palliative care and may determine the value and feasibility of conducting a full systematic review. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/33305.

Patient-reported outcome measures in pediatric palliative care-a protocol for a scoping review.

BACKGROUND: In pediatric palliative care (PPC), there is a need to involve the child's voice in situations regarding their symptoms and care needs. Patient-reported outcome measures (PROMs) can be tools to systematically gather data reported from the child or a proxy if the child is not capable to self-report in order to provide the services they need. There has been a rapid development in PROM research the last decade, and there is a need for an overview of current knowledge and experiences in the field. Thus, we aim to explore and summarize what is known from the published research about PROMs in PPC. METHODS: We propose a scoping review following the framework by Arksey and O'Malley and the PRISMA Extension for Scoping Reviews checklist. A systematic search will be performed in the following databases: Medical Literature Analysis and Retrieval System Online (Medline), Excerpta Medica database (EMBASE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), American Psychological Association (APA) PsycInfo, Health and Psychosocial Instruments (HaPI), and Allied and Complementary Medicine Database (AMED). The search will be followed by snowballing to identify key papers and significant researchers for additional citations. Covidence will facilitate the independent review of eligible citations, and data will be extracted and presented descriptively, and thematically analyzed using NVivo. DISCUSSION: The scoping review suggested in this protocol will identify PROMs which have been proposed in PPC and clarify the experiences with their use. The findings of this review will be relevant for researchers and healthcare personnel caring for children and adolescents in PPC. In addition, by highlighting knowledge gaps about the use of PROMs in PPC, this review will point out future needs within this field of research, which is crucial for improving quality of care in PPC. SYSTEMATIC REVIEW REGISTRATION: https://osf.io/yfch2/ .

Advantages and Challenges in Using Telehealth for Home-Based Palliative Care: Protocol for a Systematic Mixed Studies Review.

BACKGROUND: Given the increasing number of people in need of palliative care services and the current health care professional workforce strain, providing equitable, quality palliative care has become a challenge. Telehealth could be an innovative approach to palliative care delivery, enabling patients to spend more time or even remain at home, if they wish, throughout the illness trajectory. However, no previous systematic mixed studies reviews have synthesized evidence on patients' experiences of the advantages and challenges of telehealth for home-based palliative care. OBJECTIVE: The aim of this systematic mixed studies review is to critically appraise and synthesize findings from studies that investigated patients' use of telehealth in home-based palliative care with a focus on the advantages and challenges experienced by the patients. METHODS: This article describes the protocol for a systematic mixed studies review with a convergent design. The reporting will be guided by the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) statement. A systematic search was performed in eight databases for studies published from January 2010 to June 2020. The search will be updated in 2021. Pairs of authors will independently assess eligibility, extract data, and assess methodological quality. The data will then be analyzed using thematic synthesis. RESULTS: We describe the rationale and design of a systematic mixed studies review. The database searches were performed on June 25, 2020. Assessment of eligibility and further steps have not yet been performed. Results are anticipated by August 2021. CONCLUSIONS: Following the ethos of patient-centered palliative care, this systematic mixed studies review could lead to recommendations for practice and policy, enabling the development and implementation of telehealth applications and services that align with patients' preferences and needs at home. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/22626.

Students' top 10 priorities of research uncertainties on students' sleep: a pragmatic James Lind Alliance approach.

OBJECTIVES: Inspired by the James Lind Alliance (JLA) user involvement approach, the aim of the present study was to identify the top 10 uncertainties for sleep research raised by students in higher education, and to discuss our experiences with adapting the JLA method to a student population. DESIGN: The study design is a pragmatic JLA approach, including a priority setting partnership within the field of sleep, collection of sleep-related research uncertainties as reported by students in higher education, sorting of the uncertainties and a final identification of the top 10 uncertainties through collaborative work between researchers, students, stakeholders and experts in the field. Uncertainties were collected using a one-question online survey: 'as a student, which question(s) do you consider to be important with regards to sleep?'. A variety of approaches were applied to promote the survey to the students, including social media, radio, the university website, stands in university cafeterias and a sleep stunt. NVivo V.12 was used to code and sort the questions. SETTING: A higher education institution in Norway. PARTICIPANTS: 555 students. RESULTS: The data collection provided 608 uncertainties, and the following prioritised top 10: (1) screen time, (2) stress, (3) educational achievements, (4) social relations, (5) mental health, (6) physical activity, (7) indoor environment, (8) substance abuse, (9) shift work and (10) sleep quality. Despite successful data collection, we found sleep to be a broad topic, and defining specific questions throughout the sorting and verification process proved difficult. CONCLUSIONS: We identified the prioritised top 10 research uncertainties as reported by students in higher education, ranking screen time first. However, the process was time and resource consuming. The research uncertainties addressed by the students showed great diversity, characterised by heterogeneity and a lack of specificity, making verification of the uncertainties challenging.

Home-Based Pediatric Palliative Care and Electronic Health: Systematic Mixed Methods Review.

BACKGROUND: Children and families in pediatric palliative care depend on close contact with health care personnel, and electronic health (eHealth) is suggested to support care at home by facilitating their remote interactions. OBJECTIVE: This study aimed to identify and review the use of eHealth to communicate and support home-based pediatric palliative care and appraise the methodological quality of the published research. METHODS: We conducted a convergent, systematic mixed methods review and searched Medical Literature Analysis and Retrieval System Online (Medline), EMBASE, PsycINFO, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Web of Science, and Scopus for eligible papers. Studies evaluating 2-way communication technology for palliative care for children aged ≤18 years and applying quantitative, qualitative, or mixed methods from 2012 to 2018 were eligible for inclusion. Quantitative and qualitative studies were equally valued during the search, screening, extraction, and analysis. Quantitative data were transformed into qualitative data and analyzed using a thematic analysis. Overall, 2 independent researchers methodologically appraised all included studies. RESULTS: We identified 1277 citations. Only 7 papers were eligible for review. Evaluating eHealth interventions in pediatric palliative care poses specific methodological and ethical challenges. eHealth to facilitate remote pediatric palliative care was acknowledged both as an intrusion and as a support at home. Reluctance toward eHealth was mainly identified among professionals. CONCLUSIONS: The strengths of the conclusions are limited by the studies' methodological challenges. Despite the limitless possibilities held by new technologies, research on eHealth in home-based pediatric palliative care is scarce. The affected children and families appeared to hold positive attitudes toward eHealth, although their views were less apparent compared with those of the professionals. TRIAL REGISTRATION: PROSPERO CRD42018119051; https://tinyurl.com/rtsw5ky.

Working with patients suffering from chronic diseases can be a balancing act for health care professionals - a meta-synthesis of qualitative studies.

BACKGROUND: The number of patients with long-term chronic diseases is increasing. These patients place a strain on health care systems and health care professionals (HCPs). Presently, we aimed to systematically review the literature on HCPs' experiences working with patients with long-term chronic diseases such as type 2 diabetes, chronic obstructive pulmonary disease (COPD), and chronic kidney disease (CKD). METHOD: A systematic search of papers published between 2002 and July 2019 was conducted in the Embase, AMED, PsycINFO, MEDLINE, CINAHL, and COCHRANE databases to identify studies reporting qualitative interviews addressing HCPs' experiences working with adults with COPD, CKD or type 2 diabetes. An interdisciplinary research group were involved in all phases of the study. With the help of NVivo, extracts of each paper were coded, and codes were compared across papers and refined using translational analysis. Further codes were clustered in categories that in turn formed overarching themes. RESULTS: Our comprehensive search identified 4170 citations. Of these, 20 papers met our inclusion criteria. Regarding HCPs' experiences working with patients with COPD, CKD, or type 2 diabetes, we developed 10 sub-categories that formed three overarching main themes of work experiences: 1) individualizing one's professional approach within the clinical encounter; 2) managing one's emotions over time; 3) working to maintain professionalism. Overall these three themes suggest that HCPs' work is a complex balancing act depending on the interaction between patient and professional, reality and professional ideals, and contextual support and managing one's own emotions. CONCLUSION: Few qualitative studies highlighted HCPs' general working experiences, as they mainly focused on the patients' experiences or HCPs' experiences of using particular clinical procedures. This study brings new insights about the complexity embedded in HCPs' work in terms of weighing different, often contrasting aspects, in order to deliver appropriate practice. Acknowledging, discussing and supporting this complexity can empower HCPs to avoid burning out. Leaders, health organizations, and educational institutions have a particular responsibility to provide HCPs with thorough professional knowledge and systematic support. TRIAL REGISTRATION: PROSPERO number: CRD42019119052.

Tailored Communication Within Mobile Apps for Diabetes Self-Management: A Systematic Review.

BACKGROUND: The prevalence of diabetes is increasing and with the requirements for self-management and risk of late complications, it remains a challenge for the individual and society. Patients can benefit from support from health care personnel in their self-management, and the traditional communication between patients and health care personnel is changing. Smartphones and apps offer a unique platform for communication, but apps with integrated health care personnel communication based on patient data are yet to be investigated to provide evidence of possible effects. OBJECTIVE: Our goal was to systematically review studies that aimed to evaluate integrated communication within mobile apps for tailored feedback between patients with diabetes and health care personnel in terms of (1) study characteristics, (2) functions, (3) study outcomes, (4) effects, and (5) methodological quality. METHODS: A systematic literature search was conducted following our International Prospective Register of Systematic Reviews (PROSPERO) protocol, searching for apps with integrated communication for persons with diabetes tested in a controlled trial in the period 2008 to 2016. We searched the databases PubMed, Medical Literature Analysis and Retrieval System Online (MEDLINE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Cochrane Central, Excerpta Medica database (EMBASE), ClinicalTrials.gov, and the World Health Organization (WHO) International Clinical Trials Registry Platform. The search was closed in September 2016. Reference lists of primary articles and review papers were assessed. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed, and we applied the Cochrane risk of bias tool to assess methodological quality. RESULTS: We identified 2822 citations and after duplicate removal, we assessed 1128 citations. A total of 6 papers were included in this systematic review, reporting on data from 431 persons participating in small trials of short duration. The integrated communication features were mostly individualized as written non-real-time feedback. The number of functions varied from 2 to 9, and blood glucose tracking was the most common. HbA1c was the most common primary outcome, but the remaining reported outcomes were not standardized and comparable. Because of both the heterogeneity of the included trials and the poor methodological quality of the studies, a meta-analysis was not possible. A statistically significant improvement in the primary measure of outcome was found in 3 of the 6 included studies, of which 2 were HbA1c and 1 was mean daytime ambulatory blood pressure. Participants in the included trials reported positive usability or feasibility postintervention in 5 out of 6 trials. The overall methodological quality of the trials was, however, scored as an uncertain risk of bias. CONCLUSIONS: This systematic review highlights the need for more trials of higher methodological quality. Few studies offer an integrated function for communication and feedback from health care personnel, and the research field represents an area of heterogeneity with few studies of highly rigorous methodological quality. This, in combination with a low number of participants and a short follow-up, is making it difficult to provide reliable evidence of effects for stakeholders.