Browsing by Author "Fiest, Kirsten M"
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Item Open Access A qualitative study of physician perceptions and experiences of caring for critically ill patients in the context of resource strain during the first wave of the COVID-19 pandemic(2021-04-22) Parsons Leigh, Jeanna; Kemp, Laryssa G; de Grood, Chloe; Brundin-Mather, Rebecca; Stelfox, Henry T; Ng-Kamstra, Josh S; Fiest, Kirsten MAbstract Background The COVID-19 pandemic has led to global shortages in the resources required to care for critically ill patients and to protect frontline healthcare providers. This study investigated physicians’ perceptions and experiences of caring for critically ill patients in the context of actual or anticipated resource strain during the COVID-19 pandemic, and explored implications for the healthcare workforce and the delivery of patient care. Methods We recruited a diverse sample of critical care physicians from 13 Canadian Universities with adult critical care training programs. We conducted semi-structured telephone interviews between March 25–June 25, 2020 and used qualitative thematic analysis to derive primary themes and subthemes. Results Fifteen participants (eight female, seven male; median age = 40) from 14 different intensive care units described three overarching themes related to physicians’ perceptions and experiences of caring for critically ill patients during the pandemic: 1) Conditions contributing to resource strain (e.g., continuously evolving pandemic conditions); 2) Implications of resource strain on critical care physicians personally (e.g., safety concerns) and professionally (e.g. practice change); and 3) Enablers of resource sufficiency (e.g., adequate human resources). Conclusions The COVID-19 pandemic has required health systems and healthcare providers to continuously adapt to rapidly evolving circumstances. Participants’ uncertainty about whether their unit’s planning and resources would be sufficient to ensure the delivery of high quality patient care throughout the pandemic, coupled with fear and anxiety over personal and familial transmission, indicate the need for a unified systemic pandemic response plan for future infectious disease outbreaks.Item Open Access A study protocol for a randomized controlled trial of family-partnered delirium prevention, detection, and management in critically ill adults: the ACTIVATE study(2020-05-24) Fiest, Kirsten M; Krewulak, Karla D; Sept, Bonnie G; Spence, Krista L; Davidson, Judy E; Ely, E. W; Soo, Andrea; Stelfox, Henry TAbstract Background Delirium is very common in critically ill patients admitted to the intensive care unit (ICU) and results in negative long-term outcomes. Family members are also at risk of long-term complications, including depression and anxiety. Family members are frequently at the bedside and want to be engaged; they know the patient best and may notice subtle changes prior to the care team. By engaging family members in delirium care, we may be able to improve both patient and family outcomes by identifying delirium sooner and capacitating family members in care. Methods The primary aim of this study is to determine the effect of family-administered delirium prevention, detection, and management in critically ill patients on family member symptoms of depression and anxiety, compared to usual care. One-hundred and ninety-eight patient-family dyads will be recruited from four medical-surgical ICUs in Calgary, Canada. Dyads will be randomized 1:1 to the intervention or control group. The intervention consists of family-partnered delirium prevention, detection, and management, while the control group will receive usual care. Delirium, depression, and anxiety will be measured using validated tools, and participants will be followed for 1- and 3-months post-ICU discharge. All analyses will be intention-to-treat and adjusted for pre-identified covariates. Ethical approval has been granted by the University of Calgary Conjoint Health Research Ethics Board (REB19–1000) and the trial registered. The protocol adheres to the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT) checklist. Discussion Critically ill patients are frequently unable to participate in their own care, and partnering with their family members is particularly important for improving experiences and outcomes of care for both patients and families. Trial registration Registered September 23, 2019 on Clinicaltrials.gov NCT04099472.Item Open Access Adverse events associated with administration of vasopressor medications through a peripheral intravenous catheter: a systematic review and meta-analysis(2021-04-16) Owen, Victoria S; Rosgen, Brianna K; Cherak, Stephana J; Ferland, Andre; Stelfox, Henry T; Fiest, Kirsten M; Niven, Daniel JAbstract Background It is unclear whether vasopressors can be safely administered through a peripheral intravenous (PIV). Systematic review and meta-analysis methodology was used to examine the incidence of local anatomic adverse events associated with PIV vasopressor administration in patients of any age cared for in any acute care environment. Methods MEDLINE, EMBASE, CINAHL, the Cochrane Central Register of controlled trials, and the Database of Abstracts of Reviews of Effects were searched without restriction from inception to October 2019. References of included studies and related reviews, as well as relevant conference proceedings were also searched. Studies were included if they were: (1) cohort, quasi-experimental, or randomized controlled trial study design; (2) conducted in humans of any age or clinical setting; and (3) reported on local anatomic adverse events associated with PIV vasopressor administration. Risk of bias was assessed using the Revised Cochrane risk-of-bias tool for randomized trials or the Joanna Briggs Institute checklist for prevalence studies where appropriate. Incidence estimates were pooled using random effects meta-analysis. Subgroup analyses were used to explore sources of heterogeneity. Results Twenty-three studies were included in the systematic review, of which 16 and 7 described adults and children, respectively. Meta-analysis from 11 adult studies including 16,055 patients demonstrated a pooled incidence proportion of adverse events associated with PIV vasopressor administration as 1.8% (95% CI 0.1–4.8%, I2 = 93.7%). In children, meta-analysis from four studies and 388 patients demonstrated a pooled incidence proportion of adverse events as 3.3% (95% CI 0.0–10.1%, I2 = 82.4%). Subgroup analyses did not detect any statistically significant effects associated with stratification based on differences in clinical location, risk of bias or design between studies, PIV location and size, or vasopressor type or duration. Most studies had high or some concern for risk of bias. Conclusion The incidence of adverse events associated with PIV vasopressor administration is low. Additional research is required to examine the effects of PIV location and size, vasopressor type and dose, and patient characteristics on the safety of PIV vasopressor administration.Item Open Access Allocation of intensive care resources during an infectious disease outbreak: a rapid review to inform practice(2020-12-18) Fiest, Kirsten M; Krewulak, Karla D; Plotnikoff, Kara M; Kemp, Laryssa G; Parhar, Ken K S; Niven, Daniel J; Kortbeek, John B; Stelfox, Henry T; Parsons Leigh, JeannaAbstract Background The COVID-19 pandemic has placed sustained demand on health systems globally, and the capacity to provide critical care has been overwhelmed in some jurisdictions. It is unknown which triage criteria for allocation of resources perform best to inform health system decision-making. We sought to summarize and describe existing triage tools and ethical frameworks to aid healthcare decision-making during infectious disease outbreaks. Methods We conducted a rapid review of triage criteria and ethical frameworks for the allocation of critical care resources during epidemics and pandemics. We searched Medline, EMBASE, and SCOPUS from inception to November 3, 2020. Full-text screening and data abstraction were conducted independently and in duplicate by three reviewers. Articles were included if they were primary research, an adult critical care setting, and the framework described was related to an infectious disease outbreak. We summarized each triage tool and ethical guidelines or framework including their elements and operating characteristics using descriptive statistics. We assessed the quality of each article with applicable checklists tailored to each study design. Results From 11,539 unique citations, 697 full-text articles were reviewed and 83 articles were included. Fifty-nine described critical care triage protocols and 25 described ethical frameworks. Of these, four articles described both a protocol and ethical framework. Sixty articles described 52 unique triage criteria (29 algorithm-based, 23 point-based). Few algorithmic- or point-based triage protocols were good predictors of mortality with AUCs ranging from 0.51 (PMEWS) to 0.85 (admitting SOFA > 11). Most published triage protocols included the substantive values of duty to provide care, equity, stewardship and trust, and the procedural value of reason. Conclusions This review summarizes available triage protocols and ethical guidelines to provide decision-makers with data to help select and tailor triage tools. Given the uncertainty about how the COVID-19 pandemic will progress and any future pandemics, jurisdictions should prepare by selecting and adapting a triage tool that works best for their circumstances.Item Open Access Association between delirium in the intensive care unit and subsequent neuropsychiatric disorders(2020-07-31) Brown, Kyla N; Soo, Andrea; Faris, Peter; Patten, Scott B; Fiest, Kirsten M; Stelfox, Henry TAbstract Background Patients in the intensive care unit (ICU) are known to be at increased risk of developing delirium, but the risk of subsequent neuropsychiatric disorders is unclear. We therefore sought to examine the association between the presence of delirium in the ICU and incident neuropsychiatric disorders (including depressive, anxiety, trauma-and-stressor-related, and neurocognitive disorders) post-ICU stay among adult medical-surgical ICU patients. Methods Retrospective cohort study utilizing clinical and administrative data from both inpatient and outpatient healthcare visits to identify the ICU cohort and diagnostic information 5 years prior to and 1 year post-ICU stay. Patients ≥ 18 years of age admitted to one of 14 medical-surgical ICUs across Alberta, Canada, January 1, 2014–June 30, 2016, and survived to hospital discharge were included. The main outcome of interest was a new diagnosis of any neuropsychiatric disorder 1 year post-ICU stay. The exposure variable was delirium during the ICU stay identified through any positive delirium screen by the Intensive Care Unit Delirium Screening Checklist (ICDSC) during the ICU stay. Results Of 16,005 unique patients with at least one ICU admission, 4033 patients were included in the study of which 1792 (44%) experienced delirium during their ICU stay. The overall cumulative incidence of any neuropsychiatric disorder during the subsequent year was 19.7% for ICU patients. After adjusting for hospital characteristics using log-binomial regression, patients with delirium during the ICU stay had a risk ratio (RR) of 1.14 (95% confidence interval [CI] 0.98–1.33) of developing any neuropsychiatric disorder within 1 year post-ICU compared to those who did not experience delirium. Delirium was significantly associated with neurocognitive disorders (RR 1.59, 95% CI 1.08–2.35), but not depressive disorders (RR 1.16, 95% CI 0.92–1.45), anxiety (RR 1.16, 95% CI 0.92–1.47), and trauma-and-stressor-related (RR 0.82, 95% CI 0.53–1.28) disorders. Conclusions The diagnosis of new onset of neurocognitive disorders is associated with ICU-acquired delirium. In this study, significant associations were not observed for depressive, anxiety, and trauma-and-stressor-related disorders.Item Open Access Associations between caregiver-detected delirium and symptoms of depression and anxiety in family caregivers of critically ill patients: a cross-sectional study(2021-04-09) Rosgen, Brianna K; Krewulak, Karla D; Davidson, Judy E; Ely, E. W; Stelfox, Henry T; Fiest, Kirsten MAbstract Background Witnessing delirium can be distressing for family caregivers (i.e., relatives or friends) of critically ill patients. This study aimed to evaluate associations between caregiver-detected delirium in critically ill patients and depression and anxiety symptoms in their family caregivers. Methods Consecutive adult patient-caregiver dyads were enrolled from a 28-bed medical-surgical intensive care unit. Patient delirium was screened for daily by family caregivers using the Sour Seven instrument. Family caregivers completed the Patient Health Questionnaire-9 (PHQ-9) and General Anxiety Disorder-7 (GAD-7) instruments daily to assess their own depression and anxiety symptoms. Response feature analysis was used to handle repeated measures. Descriptive statistics and regression analyses were completed. Results One hundred forty-seven patient-caregiver dyads were enrolled. Clinically significant symptoms of depression and anxiety occurred in 27% and 35% of family caregivers, respectively. Caregiver-detected delirium occurred in 65% of patients, and was not associated with clinically significant caregiver depression (Odds Ratio [OR] 1.4, 95% Confidence Interval [95%CI] 0.6–3.1) or anxiety (OR 1.2, 95%CI 0.6–2.6) symptoms. When stratified by Sour Seven scores, scores 1–3 and 4–9 were associated with increased symptoms of anxiety (OR 3.1, 95%CI 1.3–7.0) and depression (OR 2.6, 95%CI 1.1–6.1) in family caregivers. Caregiver-detected delirium score was associated with severity of family caregiver anxiety symptoms (coefficient 0.2, 95%CI 0.1–0.4), but not depression symptoms (coefficient 0.2, 95%CI -0.0–0.3). Conclusions Caregiver-detected patient delirium was associated with increased depression and anxiety symptoms in family caregivers of critically ill patients. Further randomized research is required to confirm these associations.Item Open Access Bereavement interventions to support informal caregivers in the intensive care unit: a systematic review(2021-05-12) Moss, Stephana J; Wollny, Krista; Poulin, Therese G; Cook, Deborah J; Stelfox, Henry T; Ordons, Amanda R d; Fiest, Kirsten MAbstract Background Informal caregivers of critically ill patients in intensive care unit (ICUs) experience negative psychological sequelae that worsen after death. We synthesized outcomes reported from ICU bereavement interventions intended to improve informal caregivers’ ability to cope with grief. Data sources MEDLINE, EMBASE, CINAHL and PsycINFO from inception to October 2020. Study selection Randomized controlled trials (RCTs) of bereavement interventions to support informal caregivers of adult patients who died in ICU. Data extraction Two reviewers independently extracted data in duplicate. Narrative synthesis was conducted. Data synthesis Bereavement interventions were categorized according to the UK National Institute for Health and Clinical Excellence three-tiered model of bereavement support according to the level of need: (1) Universal information provided to all those bereaved; (2) Selected or targeted non-specialist support provided to those who are at-risk of developing complex needs; and/or (3) Professional specialist interventions provided to those with a high level of complex needs. Outcome measures were synthesized according to core outcomes established for evaluating bereavement support for adults who have lost other adults to illness. Results Three studies of ICU bereavement interventions from 31 ICUs across 26 hospitals were included. One trial examining the effect of family presence at brain death assessment integrated all three categories of support but did not report significant improvement in emotional or psychological distress. Two other trials assessed a condolence letter intervention, which did not decrease grief symptoms and may have increased symptoms of depression and post-traumatic stress disorder, and a storytelling intervention that found no significant improvements in anxiety, depression, post-traumatic stress, or complicated grief. Four of nine core bereavement outcomes were not assessed anytime in follow-up. Conclusions Currently available trial evidence is sparse and does not support the use of bereavement interventions for informal caregivers of critically ill patients who die in the ICU.Item Open Access Deidentified dataset from Time spent formatting research manuscripts for submission annually(2018-10-21) Fiest, Kirsten M; Stelfox, Henry TData from journals studied to determine how long it takes to complete the formatting and submission process. No patient data is in this dataset. Data was generated by two research assistants who timed how long it took them to format and submit papers for publication to the top 10 general internal medicine journals. Other data came from publicly available websites.Item Open Access Discriminative ability of quality of life measures in multiple sclerosis(2017-12-21) Fiest, Kirsten M; Greenfield, Jamie; Metz, Luanne M; Patten, Scott B; Jetté, Nathalie; Marrie, Ruth AnnAbstract Background Though many people with multiple sclerosis (MS) have comorbidities, the use of generic and disease-specific health related quality of life (HRQOL) scales to discriminate the effects of comorbidity has not been established. The utility of these scales to discriminate differences between persons with varying levels of disability is also unknown. Methods Using online questionnaires, a convenience sample of Albertans with MS was recruited between July 2011 and March 2013. Participants completed demographic questions, a validated comorbidity questionnaire, a self-reported disability scale, and the following HRQOL scales: the Short Form (SF)-36, SF-6D, Health Utilities Index-Mark III (HUI-III), and Multiple Sclerosis Quality of Life-54 (MSQOL-54). The ability of each HRQOL scale to distinguish between comorbidity groups was assessed using a one-way analysis of covariance, adjusting for age, sex, disease course, and disability level. Results Five hundred sixty three participants completed all relevant questionnaires. All HRQOL measures distinguished between persons with or without depression, while none were able to distinguish between participants with or without hypertension, thyroid disease, irritable bowel syndrome, or osteoporosis. The SF-36 physical scale, SF-6D, HUI-III, and MSQOL-54 physical scales were able to distinguish between all disability groups, though the HUI-III was better able to distinguish between individuals with moderate versus severe disability. Conclusions Disease-specific measures would discriminate better between those with and without comorbidities than generic-specific measures and the HUI-III would discriminate best between persons with differing severities of disability. Generic or disease-specific measures may be useful in future studies examining the effects of comorbidity in MS and the effects of treatment of comorbidities in MS.Item Open Access Experiences and management of physician psychological symptoms during infectious disease outbreaks: a rapid review(2021-02-10) Fiest, Kirsten M; Parsons Leigh, Jeanna; Krewulak, Karla D; Plotnikoff, Kara M; Kemp, Laryssa G; Ng-Kamstra, Joshua; Stelfox, Henry TAbstract Background Prior to the COVID-19 pandemic, physicians experienced unprecedented levels of burnout. The uncertainty of the ongoing COVID-19 pandemic along with increased workload and difficult medical triage decisions may lead to a further decline in physician psychological health. Methods We searched Medline, EMBASE, and PsycINFO for primary research from database inception (Medline [1946], EMBASE [1974], PsycINFO [1806]) to November 17, 2020. Titles and abstracts were screened by one of three reviewers and full-text article screening and data abstraction were conducted independently, and in duplicate, by three reviewers. Results From 6223 unique citations, 480 articles were reviewed in full-text, with 193 studies (of 90,499 physicians) included in the final review. Studies reported on physician psychological symptoms and management during seven infectious disease outbreaks (severe acute respiratory syndrome [SARS], three strains of Influenza A virus [H1N1, H5N1, H7N9], Ebola, Middle East respiratory syndrome [MERS], and COVID-19) in 57 countries. Psychological symptoms of anxiety (14.3–92.3%), stress (11.9–93.7%), depression (17–80.5%), post-traumatic stress disorder (13.2–75.2%) and burnout (14.7–76%) were commonly reported among physicians, regardless of infectious disease outbreak or country. Younger, female (vs. male), single (vs. married), early career physicians, and those providing direct care to infected patients were associated with worse psychological symptoms. Interpretation Physicians should be aware that psychological symptoms of anxiety, depression, fear and distress are common, manifest differently and self-management strategies to improve psychological well-being exist. Health systems should implement short and long-term psychological supports for physicians caring for patients with COVID-19.Item Open Access Global assessment of migraine severity measure: preliminary evidence of construct validity(2019-04-04) Sajobi, Tolulope T; Amoozegar, Farnaz; Wang, Meng; Wiebe, Natalie; Fiest, Kirsten M; Patten, Scott B; Jette, NathalieAbstract Background In persons with migraine, severity of migraine is an important determinant of several health outcomes (e.g., patient quality of life and health care resource utilization). This study investigated how migraine patients rate the severity of their disease and how these ratings correlate with their socio-demographic, clinical, and psycho-social characteristics. Methods This is a cohort of 263 adult migraine patients consecutively enrolled in the Neurological Disease and Depression Study (NEEDs). We obtained a broad range of clinical and patient-reported measures (e.g., patients’ ratings of migraine severity using the Global Assessment of Migraine Severity (GAMS), and migraine-related disability, as measured by the Migraine Disability Scale (MIDAS)). Depression was measured using the 9-item Patient Health Questionnaire (PHQ-9) and the 14-item Hospital Anxiety and Depression Scale (HADS). Median regression analysis was used to examine the predictors of patient ratings of migraine severity. Results The mean age for the patients was 42.5 years (SD = 13.2). While 209 (79.4%) patients were females, 177 (67.4%) participants reported “moderately severe” to “extremely severe” migraine on the GAMS, and 100 (31.6%) patients had chronic migraine. Patients’ report of severity on the GAMS was strongly correlated with patients’ ratings of MIDAS global severity question, overall MIDAS score, migraine type, PHQ-9 score, and frequency of migraine attacks. Mediation analyses revealed that MIDAS mediated the effect of depression on patient ratings of migraine severity, accounting for about 32% of the total effect of depression. Overall, migraine subtype, frequency of migraine, employment status, depression, and migraine-related disability were statistically significant predictors of patient-ratings of migraine severity. Conclusions This study highlights the impact of clinical and psychosocial determinants of patient-ratings of migraine severity. GAMS is a brief and valid tool that can be used to assess migraine severity in busy clinical settings.Item Open Access Psychometric evaluation of the family caregiver ICU delirium knowledge questionnaire(2020-02-14) Krewulak, Karla D; Bull, Margaret J; Ely, E. W; Stelfox, Henry T; Fiest, Kirsten MAbstract Background Delirium is a common condition in critically ill patients, affecting nearly half of all patients admitted to an intensive care unit (ICU). Family caregivers of critically ill patients can be partners in the early recognition, prevention and management of delirium provided they are aware of the signs/symptoms and appropriate non-pharmacological strategies that might be taken. Valid, reliable instruments that assess family caregiver knowledge are essential so that nurses can prepare family caregivers to be effective partners. The purpose of the current study was to (a) adapt an existing caregiver delirium knowledge questionnaire (CDKQ) for use by nurses to measure a family caregiver’s delirium knowledge in the ICU; and (b) examine the psychometric properties and structure of the adapted Caregiver ICU Delirium Knowledge Questionnaire (CIDKQ). Methods In this cross-sectional study, a multidisciplinary team developed the 21-item CIDKQ (possible score range: 0–21) and administered it to 158 family caregivers of critically ill patients. Descriptive statistics were examined for all variables. The CIDKQ was analyzed for face validity, content validity, reliability and internal consistency. Results The mean CIDKQ score was 14.1 (SD: 3.5, range = 2 to 21). Path analysis revealed that a family caregiver’s delirium knowledge in the actions and symptoms dimensions had a direct effect on knowledge of delirium risk factors. The CIDKQ was found to have face validity and reliability (Cronbach’s α = 0.79). Conclusions The findings indicated good validity and reliability of the CIDKQ as a measure of ICU delirium knowledge in family caregivers of critically ill patients.Item Open Access Sex-specific prevalence and outcomes of frailty in critically ill patients(2020-09-29) Hessey, Erin; Montgomery, Carmel; Zuege, Danny J; Rolfson, Darryl; Stelfox, Henry T; Fiest, Kirsten M; Bagshaw, Sean MAbstract Background The prevalence of frailty, an important risk factor for short- and long-term outcomes in hospitalized adults, differs by sex. Studies in critically ill adults have also found differences in mortality and organ support rates in males and females. The objective of this study was to determine if these observed differences in mortality and organ support rates can be explained by sex and frailty alone, or if the interaction between sex and frailty is an important risk factor. Methods This is a retrospective multi-centre population-based cohort study of all adult patients (≥ 18 years) admitted to the seventeen intensive care units (ICUs) across Alberta, Canada, between 2016 and 2017. On admission, physicians assigned a Clinical Frailty Scale (CFS) score (1 = very fit, 9 = terminally ill) to all patients. Patients with missing CFS scores or who died within 24 h of ICU admission were excluded. Frailty was defined as CFS ≥ 5. Outcomes included all-cause hospital mortality, ICU mortality, and organ support rates. A propensity score for female sex was generated and 1:1 matching on sex was performed. Multivariable Cox regression or logistic regression, as appropriate, was performed to evaluate the association between sex, frailty, and the sex-frailty interaction term with outcomes. Results Of 15,238 patients included in the cohort, after propensity score matching 11,816 patients remained (mean [standard deviation] age 57.3 [16.9]). In the matched cohort, females had a higher prevalence of frailty than males (32% vs. 27%, respectively) and higher odds of frailty (odds ratio [95% confidence interval (CI)] 1.29 [1.20–1.40]). Though females were less likely to receive invasive mechanical ventilation (hazard ratio [95% CI] 0.78 [0.71–0.86]), the interaction between sex and frailty (i.e., males and females with and without frailty) was not associated with differences in organ support rates. Receipt of dialysis and vasoactive support, as well as hospital mortality and ICU mortality were associated with frailty but were not associated with female sex or the interaction between sex and frailty. Conclusions Although frailty and sex were individually associated with mortality and differences in organ support in the ICU, there does not appear to be a significant interaction between sex and frailty with regards to these outcomes.Item Open Access Translating evidence to patient care through caregivers: a systematic review of caregiver-mediated interventions(2018-07-12) Fiest, Kirsten M; McIntosh, Christiane J; Demiantschuk, Danielle; Leigh, Jeanna P; Stelfox, Henry TAbstract Background Caregivers may promote the uptake of science into patient care and the practice of evidence-informed medicine. The purpose of this study was to determine whether caregiver-mediated (non-clinical caregiver-delivered) interventions are effective in improving patient, caregiver, provider, or health system outcomes. Methods We searched the MEDLINE, Embase, PsycINFO, Cumulative Index of Nursing and Allied Health, and Scopus databases from inception to February 27, 2017. Interventions (with a comparison group) reporting on a quality improvement intervention mediated by a caregiver and directed to a patient, in all ages and patient-care settings, were selected for inclusion. A three-category framework was developed to characterize caregiver-mediated interventions: inform (e.g., provide knowledge), activate (e.g., prompt action), and collaborate (e.g., lead to interaction between caregivers and other groups [e.g., care providers]). Results Fifty-six studies met the inclusion criteria, and 64% were randomized controlled trials (RCTs). The most commonly assessed outcomes were patient- (n = 40) and caregiver-oriented (n = 33); few health system- (n = 10) and provider-oriented (n = 2) outcomes were reported. Patient outcomes (e.g., satisfaction) were most improved by caregiver-mediated interventions that provided condition and treatment education (e.g., symptom management information) and practical condition-management support (e.g., practicing medication protocol). Caregiver outcomes (e.g., stress-related/psychiatric outcomes) were most improved by interventions that activated caregiver roles (e.g., monitoring blood glucose) and provided information related to that action (e.g., why and how to monitor). The risk of bias was generally high, and the overall quality of the evidence was low-moderate, based on Grading of Recommendations Assessment Development and Evaluation ratings. Conclusions There is a large body of research, including many RCTs, to support the use of caregiver-mediated interventions that inform and activate caregivers to improve patient and caregiver outcomes. Select caregiver-mediated interventions improve patient (inform-activate) and caregiver (inform-activate-collaborate) outcomes and should be considered by all researchers implementing patient- and family-oriented research. Systematic review PROSPERO, CRD42016052509 .