The syntheses of multiple qualitative studies can pull together data across different contexts, generate new theoretical or conceptual models, identify research gaps, and provide evidence for the ...development, implementation and evaluation of health interventions. This study aims to develop a framework for reporting the synthesis of qualitative health research.
We conducted a comprehensive search for guidance and reviews relevant to the synthesis of qualitative research, methodology papers, and published syntheses of qualitative health research in MEDLINE, Embase, CINAHL and relevant organisational websites to May 2011. Initial items were generated inductively from guides to synthesizing qualitative health research. The preliminary checklist was piloted against forty published syntheses of qualitative research, purposively selected to capture a range of year of publication, methods and methodologies, and health topics. We removed items that were duplicated, impractical to assess, and rephrased items for clarity.
The Enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement consists of 21 items grouped into five main domains: introduction, methods and methodology, literature search and selection, appraisal, and synthesis of findings.
The ENTREQ statement can help researchers to report the stages most commonly associated with the synthesis of qualitative health research: searching and selecting qualitative research, quality appraisal, and methods for synthesising qualitative findings. The synthesis of qualitative research is an expanding and evolving methodological area and we would value feedback from all stakeholders for the continued development and extension of the ENTREQ statement.
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Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
•Remote monitoring supports self-management, by increasing patient confidence.•Remote monitoring enables early identification of clinical exacerbations.•Remote monitoring increased shared ...decision-making.•Patients unfamiliar with technology were more concerned and doubted reliability.•Patients value face-to-face consultations with clinicians.
To describe the range of patients’ beliefs, attitudes, expectations, and experiences of remote monitoring for chronic conditions across different healthcare contexts and populations.
We searched MEDLINE, Embase, PsychINFO, and CINAHL, Google Scholar, and reference lists of related studies through to July 2017. Thematic synthesis was used to analyse the findings of the primary studies. Study characteristics were examined to explain differences in findings.
All healthcare settings
Adults with chronic diseases
Patient beliefs, attitudes, expectations and experiences of remote monitoring
We included 16 studies involving 307 participants with chronic obstructive pulmonary disease, heart failure, diabetes, hypertension, and end stage kidney disease. The studies were conducted in 8 countries. We identified four themes: gaining knowledge and triggering actions (tracking and responding to change, prompting timely and accessible care, supporting self-management and shared decision-making); reassurance and security (safety in being alone, peace of mind); concern about additional burden (reluctance to learn something new, lack of trust in technology, avoiding additional out-of-pocket costs), and jeopardising interpersonal connections (fear of being lost in data, losing face to face contact).
For patients with chronic disease, remote monitoring increased their disease-specific knowledge, triggered earlier clinical assessment and treatment, improved self-management and shared decision-making. However, these potential benefits were balanced against concerns about losing interpersonal contact, and the additional personal responsibility of remote monitoring.
Background In the context of clinical research, investigators have historically selected the outcomes that they consider to be important, but these are often discordant with patients’ priorities. ...Efforts to define and report patient-centered outcomes are gaining momentum, though little work has been done in nephrology. We aimed to identify patient and caregiver priorities for outcomes in hemodialysis. Study Design Nominal group technique. Setting & Participants Patients on hemodialysis therapy and their caregivers were purposively sampled from 4 dialysis units in Australia (Sydney and Melbourne) and 7 dialysis units in Canada (Calgary). Methodology Identification and ranking of outcomes. Analytical Approach Mean rank score (of 10) for top 10 outcomes and thematic analysis. Results 82 participants (58 patients, 24 caregivers) aged 24 to 87 (mean, 58.4) years in 12 nominal groups identified 68 outcomes. The 10 top-ranked outcomes were fatigue/energy (mean rank score, 4.5), survival (defined by patients as resilience and coping; 3.7), ability to travel (3.6), dialysis-free time (3.3), impact on family (3.2), ability to work (2.5), sleep (2.3), anxiety/stress (2.1), decrease in blood pressure (2.0), and lack of appetite/taste (1.9). Mortality ranked only 14th and was not regarded as the complement of survival. Caregivers ranked mortality, anxiety, and depression higher than patients, whereas patients ranked ability to work higher. Four themes underpinned their rankings: living well, ability to control outcomes, tangible and experiential relevance, and severity and intrusiveness. Limitations Only English-speaking participants were eligible. Conclusions Although trials in hemodialysis have typically focused on outcomes such as death, adverse events, and biological markers, patients tend to prioritize outcomes that are more relevant to their daily living and well-being. Researchers need to consider interventions that are likely to improve these outcomes and measure and report patient-relevant outcomes in trials, and clinicians may become more patient-orientated by using these outcomes in their clinical encounters.
Background Survival and quality of life for patients on hemodialysis therapy remain poor despite substantial research efforts. Existing trials often report surrogate outcomes that may not be relevant ...to patients and clinicians. The aim of this project was to generate a consensus-based prioritized list of core outcomes for trials in hemodialysis. Study Design In a Delphi survey, participants rated the importance of outcomes using a 9-point Likert scale in round 1 and then re-rated outcomes in rounds 2 and 3 after reviewing other respondents’ scores. For each outcome, the median, mean, and proportion rating as 7 to 9 (critically important) were calculated. Setting & Participants 1,181 participants (202 17% patients/caregivers, 979 health professionals) from 73 countries completed round 1, with 838 (71%) completing round 3. Outcomes & Measurements Outcomes included in the potential core outcome set met the following criteria for both patients/caregivers and health professionals: median score ≥ 8, mean score ≥ 7.5, proportion rating the outcome as critically important ≥ 75%, and median score in the forced ranking question < 10. Results Patients/caregivers rated 4 outcomes higher than health professionals: ability to travel, dialysis-free time, dialysis adequacy, and washed out after dialysis (mean differences of 0.9, 0.5, 0.3, and 0.2, respectively). Health professionals gave a higher rating for mortality, hospitalization, decrease in blood pressure, vascular access complications, depression, cardiovascular disease, target weight, infection, and potassium (mean differences of 1.0, 1.0, 1.0, 0.9, 0.9, 0.8, 0.7, 0.4, and 0.4, respectively). Limitations The Delphi survey was conducted online in English and excludes participants without access to a computer and internet connection. Conclusions Patients/caregivers gave higher priority to lifestyle-related outcomes than health professionals. The prioritized outcomes for both groups were vascular access problems, dialysis adequacy, fatigue, cardiovascular disease, and mortality. This process will inform a core outcome set that in turn will improve the relevance, efficiency, and comparability of trial evidence to facilitate treatment decisions.
Physical inactivity accounts for 9% of all deaths worldwide and is among the top 10 risk factors for global disease burden. Nearly half of people aged over 60 years are inactive. Efforts to identify ...which factors influence physical activity behaviour are needed.
To identify and synthesise the range of barriers and facilitators to physical activity participation.
Systematic review of qualitative studies on the perspectives of physical activity among people aged 60 years and over. MEDLINE, EMBASE, CINAHL, PsychINFO and AMED were searched. Independent raters assessed comprehensiveness of reporting of included studies. Thematic synthesis was used to analyse the data.
From 132 studies involving 5987 participants, we identified six major themes: social influences (valuing interaction with peers, social awkwardness, encouragement from others, dependence on professional instruction); physical limitations (pain or discomfort, concerns about falling, comorbidities); competing priorities; access difficulties (environmental barriers, affordability); personal benefits of physical activity (strength, balance and flexibility, self-confidence, independence, improved health and mental well-being); and motivation and beliefs (apathy, irrelevance and inefficacy, maintaining habits).
Some older people still believe that physical activity is unnecessary or even potentially harmful. Others recognise the benefits of physical activity, but report a range of barriers to physical activity participation. Strategies to enhance physical activity participation among older people should include (1) raising awareness of the benefits and minimise the perceived risks of physical activity and (2) improving the environmental and financial access to physical activity opportunities.
Evidence-informed decision making in clinical care and policy in nephrology is undermined by trials that selectively report a large number of heterogeneous outcomes, many of which are not patient ...centered. The Standardized Outcomes in Nephrology−Hemodialysis (SONG-HD) Initiative convened an international consensus workshop on November 7, 2015, to discuss the identification and implementation of a potential core outcome set for all trials in hemodialysis. The purpose of this article is to report qualitative analyses of the workshop discussions, describing the key aspects to consider when establishing core outcomes in trials involving patients on hemodialysis therapy. Key stakeholders including 8 patients/caregivers and 47 health professionals (nephrologists, policymakers, industry, and researchers) attended the workshop. Attendees suggested that identifying core outcomes required equitable stakeholder engagement to ensure relevance across patient populations, flexibility to consider evolving priorities over time, deconstruction of language and meaning for conceptual consistency and clarity, understanding of potential overlap and associations between outcomes, and an assessment of applicability to the range of interventions in hemodialysis. For implementation, they proposed that core outcomes must have simple, inexpensive, and validated outcome measures that could be used in clinical care (quality indicators) and trials (including pragmatic trials) and endorsement by regulatory agencies. Integrating these recommendations may foster acceptance and optimize the uptake and translation of core outcomes in hemodialysis, leading to more informative research, for better treatment and improved patient outcomes.
Background Managing the complex fluid and diet requirements of chronic kidney disease (CKD) is challenging for patients. We aimed to summarize patients’ perspectives of dietary and fluid management ...in CKD to inform clinical practice and research. Study Design Systematic review of qualitative studies. Setting & Population Adults with CKD who express opinions about dietary and fluid management. Search Strategy & Sources MEDLINE, EMBASE, PsycINFO, CINAHL, Google Scholar, reference lists, and PhD dissertations were searched to May 2013. Analytical Approach Thematic synthesis. Results We included 46 studies involving 816 patients living in middle- to high-income countries. Studies involved patients treated with facility-based and home hemodialysis (33 studies; 462 patients), peritoneal dialysis (10 studies; 112 patients), either hemodialysis or peritoneal dialysis (3 studies; 73 patients), kidney transplant recipients (9 studies; 89 patients), and patients with non–dialysis-dependent CKD stages 1 to 5 (5 studies; 80 patients). Five major themes were identified: preserving relationships (interference with roles, social limitations, and being a burden), navigating change (feeling deprived, disrupting held truths, breaking habits and norms, being overwhelmed by information, questioning efficacy, and negotiating priorities), fighting temptation (resisting impositions, experiencing mental invasion, and withstanding physiologic needs), optimizing health (accepting responsibility, valuing self-management, preventing disease progression, and preparing for and protecting a transplant), and becoming empowered (comprehending paradoxes, finding solutions, and mastering change and demands). Limitations Limited data in non-English languages and low-income settings and for adults with CKD not treated with hemodialysis. Conclusions Dietary and fluid restrictions are disorienting and an intense burden for patients with CKD. Patient-prioritized education strategies, harnessing patients’ motivation to stay well for a transplant or to avoid dialysis, and viewing adaptation to restrictions as a collaborative journey are suggested strategies to help patients adjust to dietary regimens in order to reduce their impact on quality of life.
Research priority setting with stakeholders can help direct the limited resources for health research toward priority areas of need. Ensuring transparency of the priority setting process can ...strengthen legitimacy and credibility for influencing the research agenda. This study aims to develop a reporting guideline for priority setting of health research.
We searched electronic databases and relevant websites for sources (frameworks, guidelines, or models for conducting, appraising, reporting or evaluating health research priority setting, and reviews (including systematic reviews)), and primary studies of research priority setting to July 2019. We inductively developed a list of reporting items and piloted the preliminary guideline with a diverse range of 30 priority setting studies from the records retrieved.
From 21,556 records, we included 26 sources for the candidate REPRISE framework and 455 primary research studies. The REporting guideline for PRIority SEtting of health research (REPRISE) has 31 reporting items that cover 10 domains: context and scope, governance and team, framework for priority setting, stakeholders/participants, identification and collection of priorities, prioritization of research topics, output, evaluation and feedback, translation and implementation, and funding and conflict of interest. Each reporting item includes a descriptor and examples.
The REPRISE guideline can facilitate comprehensive reporting of studies of research priority setting. Improved transparency in research priority setting may strengthen the acceptability and implementation of the research priorities identified, so that efforts and funding are invested in generating evidence that is of importance to all stakeholders.
Not applicable.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
ObjectiveImmunosuppressed individuals are at a high risk of latent tuberculosis infection (LTBI) and clinical practice guidelines for the screening and management of LTBI in at-risk patients have ...been developed. We assessed the scope, quality and consistency of clinical practice guidelines on screening for LTBI and the prevention of tuberculosis infection (TB) in high-risk patient populations.DesignWe conducted a systematic review of clinical practice guidelines. Methodological quality of these guidelines was assessed using the Appraisal of Guidelines for Research and Education (AGREE) II instrument. Textual synthesis was used to summarise and compare the recommendations.Data sourcesElectronic databases (MEDLINE, EMBASE, PsycINFO) and guideline registries were searched from inception to December 2017.ResultsThirty-eight guidelines were included. Nineteen focused on patients receiving medical immunosuppression, seven on transplantation, three on patients with HIV and nine were generalised across all at risk populations. Most guidelines (n=32, 84%) used a systematic approach to identify and appraise the evidence. The methodological quality of the guidelines varied with the overall mean AGREE II scores ranging from 35% to 80%. Guidelines performed poorly in terms of editorial independence (average score 35%, range 0%–92%); however, most were robust in defining their scope and purpose (average score 80%, range 56%–100%). Guidelines recommended either or both the tuberculin skin test and the interferon gamma release assay for screening. Treatment of LTBI with isoniazid was consistently recommended.ConclusionClinical practice guidelines on LTBI vary in quality and scope. The recommendations for screening varied across guidelines, while recommendations for treatment were largely consistent. Improving the consistency and quality of guidelines may help to optimise the screening and management of LTBI for improved patient outcomes.
Background Although home hemodialysis (HD) is associated with better survival compared with hospital HD, the burden of treatment may be intensified for patients and their caregivers and deter ...patients from this treatment choice. We describe patient and caregiver perspectives and experiences of home HD to inform home HD programs that align with patient preferences. Study Design Systematic review of qualitative studies. Setting & Population Adults with chronic kidney disease and caregivers of both home and hospital dialysis patients who expressed opinions about home HD. Search Strategy & Sources MEDLINE, EMBASE, PsycINFO, CINAHL, and reference lists were searched to October 2013. Analytical Approach Thematic synthesis. Results 24 studies involving 221 patients (home HD n = 109, hospital HD n = 97, and predialysis n = 15) and 121 caregivers were eligible. We identified 5 themes: vulnerability of dialyzing independently (fear of self-needling, feeling unqualified, and anticipating catastrophic complications), fear of being alone (social isolation and medical disconnection), concern of family burden (emotional demands on caregivers, imposing responsibility, family involvement, and medicalizing the home), opportunity to thrive (re-establishing a healthy self-identity, gaining control and freedom, strengthening relationships, experiencing improved health, and ownership of decision), and appreciating medical responsiveness (attentive monitoring and communication, depending on learning and support, developing readiness, and clinician validation). Limitations Non-English articles were excluded. Conclusions Patients and caregivers perceive that home HD offers the opportunity to thrive; improves freedom, flexibility, and well-being; and strengthens relationships. However, some voice anxiety and fear about starting home HD due to the confronting nature of the treatment and isolation from medical and social support. Acknowledging and addressing these apprehensions can improve the delivery of predialysis and home HD programs to better support patients and caregivers considering home HD.
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