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BMJ Open Sep 2022To provide a comprehensive overview of interventions that support shared decision-making (SDM) for treatment modality decisions in advanced kidney disease (AKD). To...
OBJECTIVES
To provide a comprehensive overview of interventions that support shared decision-making (SDM) for treatment modality decisions in advanced kidney disease (AKD). To provide summarised information on their content, use and reported results. To provide an overview of interventions currently under development or investigation.
DESIGN
The JBI methodology for scoping reviews was followed. This review conforms to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) checklist.
DATA SOURCES
MEDLINE, Embase, Web of Science, Cochrane Library, Emcare, PsycINFO, PROSPERO and Academic Search Premier for peer-reviewed literature. Other online databases (eg, clinicaltrials.gov, OpenGrey) for grey literature.
ELIGIBILITY FOR INCLUSION
Records in English with a study population of patients >18 years of age with an estimated glomerular filtration rate <30 mL/min/1.73 m. Records had to be on the subject of SDM, or explicitly mention that the intervention reported on could be used to support SDM for treatment modality decisions in AKD.
DATA EXTRACTION AND SYNTHESIS
Two reviewers independently screened and selected records for data extraction. Interventions were categorised as prognostic tools (PTs), educational programmes (EPs), patient decision aids (PtDAs) or multicomponent initiatives (MIs). Interventions were subsequently categorised based on the decisions they were developed to support.
RESULTS
One hundred forty-five interventions were identified in a total of 158 included records: 52 PTs, 51 EPs, 29 PtDAs and 13 MIs. Sixteen (n=16, 11%) were novel interventions currently under investigation. Forty-six (n=46, 35.7%) were reported to have been implemented in clinical practice. Sixty-seven (n=67, 51.9%) were evaluated for their effects on outcomes in the intended users.
CONCLUSION
There is no conclusive evidence on which intervention is the most efficacious in supporting SDM for treatment modality decisions in AKD. There is a lot of variation in selected outcomes, and the body of evidence is largely based on observational research. In addition, the effects of these interventions on SDM are under-reported.
Topics: Decision Making; Decision Making, Shared; Humans; Kidney Diseases; Patient Participation; Prognosis
PubMed: 36130746
DOI: 10.1136/bmjopen-2021-055248 -
Patient Education and Counseling Jun 2020Surrogate decision-makers play an increasingly important role in the lives of older adults who have lost their ability to make decisions. Currently, there is a lack of...
OBJECTIVE
Surrogate decision-makers play an increasingly important role in the lives of older adults who have lost their ability to make decisions. Currently, there is a lack of evidence to support family surrogates in making a variety of decisions. Additionally, a greater understanding of family caregivers' experiences and perspectives toward making surrogate decisions is needed.
METHODS
This study employed a qualitative systematic review and thematic synthesis of the research evidence using the methodologies of the Joanna Briggs Institute (2014) and Thomas and Harden (2008).
RESULTS
Decisions were classified per three main types: intensive care treatment, end-of-life treatment, and placement. Six themes were identified concerning surrogates' experiences: struggle and reluctance, seeking reassurance, communication with healthcare professionals, family support, older adults' wishes, and negative impact.
CONCLUSION
Family surrogates often lack adequate preparation and education regarding decision-making. Quality communication between surrogates and healthcare providers helps reduce the anxiety and guilt experienced when making surrogate decisions. Further research is required to elucidate these experiences with more cultural and racial nuances.
PRACTICE IMPLICATIONS
This review informs healthcare providers' awareness of the challenges faced by surrogates and fosters improved surrogate decision-making experiences.
Topics: Advance Directives; Aged; Caregivers; Communication; Decision Making; Family; Humans; Qualitative Research
PubMed: 31866198
DOI: 10.1016/j.pec.2019.12.011 -
European Child & Adolescent Psychiatry Feb 2023Reviews around interventions to improve shared decision making (SDM) for child and youth mental health have produced inconclusive findings on what approaches increase... (Review)
Review
A systematic review of shared decision making interventions in child and youth mental health: synthesising the use of theory, intervention functions, and behaviour change techniques.
Reviews around interventions to improve shared decision making (SDM) for child and youth mental health have produced inconclusive findings on what approaches increase participation. Importantly, the previous reviews did not explore the use of theory, as well as mechanisms of change (intervention functions) and active units of change (behaviour change techniques). The aim of this review was to explore these factors and ascertain how, if at all, these contribute to SDM. Five databases were searched up until April 2020. Studies met inclusion criteria if they were: (a) an intervention to facilitate SDM; (b) aimed at children, adolescence, or young people aged up to 25, with a mental health difficulty, or their parents/guardians; and (c) included a control group. Data were extracted on patient characteristics, study design, intervention, theoretical background, intervention functions, behaviour change techniques, and SDM. Quality assessment of the studies was undertaken using the Effective Public Health Practice Project (EPHPP) quality assessment tool. Eight different interventions met inclusion criteria. The role of theory to increase SDM remains unclear. Specific intervention functions, such as 'education' on SDM and treatment options and 'environmental restructuring' using decision aids, are being used in SDM interventions, as well as 'training' for clinicians. Similarly, behaviour change techniques linked to these, such as 'adding objects to the environment', 'discussing pros/cons', and clinicians engaging in 'behavioural practice/rehearsal'. However, as most studies scored low on the quality assessment criteria, as well as a small number of studies included and a low number of behaviour change techniques utilised, links between behaviour change techniques, intervention functions and increased participation remain tentative. Intervention developers and clinicians may wish to consider specific intervention functions and behaviour change techniques to facilitate SDM.
Topics: Humans; Child; Adolescent; Aged; Decision Making; Mental Health; Decision Making, Shared; Patient Participation; Behavior Therapy
PubMed: 33890174
DOI: 10.1007/s00787-021-01782-x -
JAMA Network Open Nov 2020Many patients are admitted to the intensive care unit following surgery, and some of them will experience incomplete recovery. For patients in this situation,...
IMPORTANCE
Many patients are admitted to the intensive care unit following surgery, and some of them will experience incomplete recovery. For patients in this situation, preoperative discussions regarding patient values and preferences may direct care decisions. Existing literature shows that it is uncommon for surgeons to have these conversations preoperatively; it is unclear whether anesthesia professionals engage with patients on this topic prior to surgery.
OBJECTIVE
To review the literature on communication between patients and anesthesia professionals, with a focus on discussions related to postoperative critical care.
EVIDENCE REVIEW
MEDLINE and Web of Science were searched using specific search criteria from January 1980 to April 2020. Studies describing encounters between patients and anesthesia professionals were selected, and data regarding study objectives, study design, methodology, measures, outcomes, patient characteristics, and clinical setting were extracted and collated. The Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) reporting guideline was followed.
FINDINGS
A total of 12 studies including 1284 individual patient encounters were eligible for inclusion in the review. These studies demonstrated that communication between patients and anesthesia professionals related to postoperative care is rare: only 2 studies reported communication regarding adverse postoperative events, and this communication behavior was reported in only 46 of 1284 consultations (3.6%) across all studies. Additional findings were that communication during these encounters is dominated by anesthetic planning and perioperative logistics, with variable discussion of perioperative risks vs benefits and infrequent elicitation of patient values and preferences. Some data suggest that patients wish to be involved in perioperative decision-making but are often limited by an incomplete understanding of risks and benefits.
CONCLUSIONS AND RELEVANCE
This systematic review found that communication in anesthesia is dominated by anesthetic planning and discussion of preoperative logistics, whereas postoperative critical care is rarely discussed. Most patients who are admitted to an intensive care unit after a major operation will not have had a discussion regarding goals of care specific to protracted recovery or prolonged intensive care with their anesthesiologist.
Topics: Anesthesiology; Critical Care; Decision Making; Humans; Patient Preference; Physician-Patient Relations; Postoperative Care
PubMed: 33180130
DOI: 10.1001/jamanetworkopen.2020.23503 -
British Journal of Anaesthesia Apr 2023Mortality, morbidity, and organ failure are important and common serious harms after surgery. However, there are many candidate measures to describe these outcome...
BACKGROUND
Mortality, morbidity, and organ failure are important and common serious harms after surgery. However, there are many candidate measures to describe these outcome domains. Definitions of these measures are highly variable, and validity is often unclear. As part of the International Standardised Endpoints in Perioperative Medicine (StEP) initiative, this study aimed to derive a set of standardised and valid measures of mortality, morbidity, and organ failure for use in perioperative clinical trials.
METHODS
Three domains of endpoints (mortality, morbidity, and organ failure) were explored through systematic literature review and a three-stage Delphi consensus process using methods consistently applied across the StEP initiative. Reliability, feasibility, and patient-centredness were assessed in round 3 of the consensus process.
RESULTS
A high level of consensus was achieved for two mortality time points, 30-day and 1-yr mortality, and these two measures are recommended. No organ failure endpoints achieved threshold criteria for consensus recommendation. The Clavien-Dindo classification of complications achieved threshold criteria for consensus in round 2 of the Delphi process but did not achieve the threshold criteria in round 3 where it scored equivalently to the Post Operative Morbidity Survey. Clavien-Dindo therefore received conditional endorsement as the most widely used measure. No composite measures of organ failure achieved an acceptable level of consensus.
CONCLUSIONS
Both 30-day and 1-yr mortality measures are recommended. No measure is recommended for organ failure. One measure (Clavien-Dindo) is conditionally endorsed for postoperative morbidity, but our findings suggest that no single endpoint offers a reliable and valid measure to describe perioperative morbidity that is not dependent on the quality of deli-vered care. Further refinement of current measures, or development of novel measures, of postoperative morbidity might improve consensus in this area.
Topics: Humans; Perioperative Care; Consensus; Reproducibility of Results; Perioperative Medicine; Morbidity; Delphi Technique
PubMed: 36697275
DOI: 10.1016/j.bja.2022.12.012 -
BMC Medical Education May 2024Shared decision making (SDM) has been presented as the preferred approach for decisions where there is more than one acceptable option and has been identified a priority...
BACKGROUND
Shared decision making (SDM) has been presented as the preferred approach for decisions where there is more than one acceptable option and has been identified a priority feature of high-quality patient-centered care. Considering the foundation of trust between general practitioners (GPs) and patients and the variety of diseases in primary care, the primary care context can be viewed as roots of SDM. GPs are requesting training programs to improve their SDM skills leading to a more patient-centered care approach. Because of the high number of training programs available, it is important to overview these training interventions specifically for primary care and to explore how these training programs are evaluated.
METHODS
This review was reported in accordance with the PRISMA guideline. Eight different databases were used in December 2022 and updated in September 2023. Risk of bias was assessed using ICROMS. Training effectiveness was analyzed using the Kirkpatrick evaluation model and categorized according to training format (online, live or blended learning).
RESULTS
We identified 29 different SDM training programs for GPs. SDM training has a moderate impact on patient (SMD 0.53 95% CI 0.15-0.90) and observer reported SDM skills (SMD 0.59 95%CI 0.21-0.97). For blended training programs, we found a high impact for quality of life (SMD 1.20 95% CI -0.38-2.78) and patient reported SDM skills (SMD 2.89 95%CI -0.55-6.32).
CONCLUSION
SDM training improves patient and observer reported SDM skills in GPs. Blended learning as learning format for SDM appears to show better effects on learning outcomes than online or live learning formats. This suggests that teaching facilities designing SDM training may want to prioritize blended learning formats. More homogeneity in SDM measurement scales and evaluation approaches and direct comparisons of different types of educational formats are needed to develop the most appropriate and effective SDM training format.
TRIAL REGISTRATION
PROSPERO: A systematic review of shared-decision making training programs in a primary care setting. PROSPERO 2023 CRD42023393385 Available from: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42023393385 .
Topics: Humans; Decision Making, Shared; General Practitioners; Patient-Centered Care; Primary Health Care; Physician-Patient Relations
PubMed: 38811922
DOI: 10.1186/s12909-024-05557-1 -
Patient Education and Counseling Nov 2023To systematically review randomized controlled trials and clinical controlled trials evaluating the effectiveness of Decision Aids (DAs) compared to usual care or... (Meta-Analysis)
Meta-Analysis Review
OBJECTIVE
To systematically review randomized controlled trials and clinical controlled trials evaluating the effectiveness of Decision Aids (DAs) compared to usual care or alternative interventions for older patients facing treatment, screening, or care decisions.
METHODS
A systematic search of several databases was conducted. Eligible studies included patients ≥ 65 years or reported a mean of ≥ 70 years. Primary outcomes were attributes of the choice made and decision making process, user experience and ways in which DAs were tailored to older patients. Meta-analysis was conducted, if possible, or outcomes were synthesized descriptively.
RESULTS
Overall, 15 studies were included. Using DAs were effective in increasing knowledge (SMD 0.90; 95% CI [0.48, 1.32]), decreasing decisional conflict (SMD -0.15; 95% CI [-0.29, -0.01]), improving patient-provider communication (RR 1.67; 95% CI [1.21, 2.29]), and preparing patients to make an individualized decision (MD 35.7%; 95% CI [26.8, 44.6]). Nine studies provided details on how the DA was tailored to older patients.
CONCLUSION
This review shows a number of favourable results for the effectiveness of DAs in decision making with older patients.
PRACTICE IMPLICATIONS
Current DAs can be used to support shared decision making with older patients when faced with treatment, screening or care decisions.
Topics: Humans; Decision Support Techniques; Patient Participation; Decision Making, Shared; Communication; Knowledge; Decision Making
PubMed: 37716242
DOI: 10.1016/j.pec.2023.107981 -
JAMA Network Open Nov 2021Decisions for older adults (aged ≥65 years) and their clinicians about whether to continue to screen for cancer are not easy. Many older adults who are frail or have...
IMPORTANCE
Decisions for older adults (aged ≥65 years) and their clinicians about whether to continue to screen for cancer are not easy. Many older adults who are frail or have limited life expectancy or comorbidities continue to be screened for cancer despite guidelines suggesting they should not; furthermore, many older adults have limited knowledge of the potential harms of continuing to be screened.
OBJECTIVE
To summarize the patient-reported factors associated with older adults' decisions regarding screening for breast, prostate, colorectal, and cervical cancer.
EVIDENCE REVIEW
Studies were identified by searching databases from January 2000 to June 2020 and were independently assessed for inclusion by 2 authors. Data extraction and risk of bias assessment were independently conducted by 2 authors, and then all decisions were cross-checked and discussed where necessary. Data analysis was performed from September to December 2020.
FINDINGS
The search yielded 2475 records, of which 21 unique studies were included. Nine studies were quantitative, 8 were qualitative, and 4 used mixed method designs. Of the 21 studies, 17 were conducted in the US, and 10 of 21 assessed breast cancer screening decisions only. Factors associated with decision-making were synthesized into 5 categories: demographic, health and clinical, psychological, physician, and social and system. Commonly identified factors associated with the decision to undergo screening included personal or family history of cancer, positive screening attitudes, routine or habit, to gain knowledge, friends, and a physician's recommendation. Factors associated with the decision to forgo screening included being older, negative screening attitudes, and desire not to know about cancer. Some factors had varying associations, including insurance coverage, living in a nursing home, prior screening experience, health problems, limited life expectancy, perceived cancer risk, risks of screening, family, and a physician's recommendation to stop.
CONCLUSIONS AND RELEVANCE
Although guidelines suggest incorporating life expectancy and health status to inform older adults' cancer screening decisions, older adults' ingrained beliefs about screening may run counter to these concepts. Communication strategies are needed that support older adults to make informed cancer screening decisions by addressing underlying screening beliefs in context with their perceived and actual risk of developing cancer.
Topics: Aged; Aged, 80 and over; Attitude to Health; Decision Making; Early Detection of Cancer; Female; Humans; Male; Mass Screening; Patient Acceptance of Health Care; Patient Preference; Patient Reported Outcome Measures; Physician-Patient Relations
PubMed: 34748004
DOI: 10.1001/jamanetworkopen.2021.33406 -
Transplantation Reviews (Orlando, Fla.) Jan 2022To assess public knowledge and attitudes towards the family's role in deceased organ donation in Europe. (Review)
Review
Should the family have a role in deceased organ donation decision-making? A systematic review of public knowledge and attitudes towards organ procurement policies in Europe.
GOAL
To assess public knowledge and attitudes towards the family's role in deceased organ donation in Europe.
METHODS
A systematic search was conducted in CINHAL, MEDLINE, PAIS Index, Scopus, PsycINFO, and Web of Science on December 15th, 2017. Eligibility criteria were socio-empirical studies conducted in Europe from 2008 to 2017 addressing either knowledge or attitudes by the public towards the consent system, including the involvement of the family in the decision-making process, for post-mortem organ retrieval. Screening and data collection were performed by two or more independent reviewers for each record.
RESULTS
Of the 1482 results, 467 studies were assessed in full-text form, and 33 were included in this synthesis. When the deceased has not expressed any preference, a majority of the public support the family's role as a surrogate decision-maker. When the deceased expressly consented, the respondents' answers depend on whether they see themselves as potential donors or as a deceased's next-of-kin. Answers also depend on the relationship between the deceased and the decision-maker(s) within the family, and on their ethnic or cultural background.
CONCLUSIONS
Public views on the authority of the family in organ donation decision-making requiere further research. A common conceptual framework and validated well-designed questionnaires are needed for future studies. The findings should be considered in the development of Government policy and guidance regarding the role of families in deceased organ donation.
Topics: Attitude; Decision Making; Europe; Family; Humans; Organ Transplantation; Policy; Tissue Donors; Tissue and Organ Procurement
PubMed: 34864448
DOI: 10.1016/j.trre.2021.100673 -
Journal of Pediatric Nursing 2023Decision-making during the end-of-life (EOL) phase for children with cancer is extremely difficult for parents. We synthesized the qualitative experiences of children... (Review)
Review
BACKGROUND
Decision-making during the end-of-life (EOL) phase for children with cancer is extremely difficult for parents. We synthesized the qualitative experiences of children with cancer, parents, and healthcare professionals (HCPs), and their social interactions during the EOL decision-making process in the pediatric oncology setting.
METHODS
Meta-ethnography was used to conduct a systematic review and meta-synthesis. We searched four online databases to identify original studies published in English and Japanese and examined 21 relevant studies. Two Japanese reviewers discussed the differences/relationships and included studies that synthesized the translated qualitative findings. A conceptual model of social interactions was created.
RESULTS
We identified four themes regarding children's, parents', and HCPs' experiences: hope and confrontation with the child's death, guidance and support during uncertainty, awareness of being protected and having hope, and mutual unspoken integration of values.
CONCLUSIONS
These themes evince the experiences of children, parents, and HCPs during the EOL decision-making process and suggests a complex three-way social interaction model. While considering such distinctive social interactions during a child's EOL, this study revealed the sharing of prudent information and psychosocial support by HCPs. The findings indicate that hope and uncertainty are key elements for effectively understanding the experiences of children and parents and that EOL decision-making should not be rushed but should be supported by leaving room for uncertainty and acknowledging parents' emotional needs and fostering new hope. Further research into how hope can be further supported in situations that are rife with uncertainty is needed.
Topics: Child; Humans; Qualitative Research; Parents; Anthropology, Cultural; Neoplasms; Death; Delivery of Health Care; Decision Making
PubMed: 36586777
DOI: 10.1016/j.pedn.2022.12.004