Publications by authors named "Sandra L Carroll"

33 Publications

Testing a nurse-led, pre-implantation educational intervention for primary prevention implantable cardioverter-defibrillator candidates: a randomized feasibility trial.

Eur J Cardiovasc Nurs 2020 Dec 5. Epub 2020 Dec 5.

School of Nursing, McMaster University, 1280 Main Street West, HSC 2J17, Hamilton, ON L8S 4K1, Canada.

Aims: Implantable cardioverter-defibrillators (ICDs) deliver therapy for life-threatening arrhythmias. Evidence suggests that ICD candidates have misconceptions regarding ICD therapy and unmet information needs. We undertook a pilot feasibility trial comparing a nurse-led educational intervention plus standard care, vs. standard pre-ICD implantation care. Secondary aims included examination of anxiety, quality of life, and shock anxiety.

Methods And Results: Implantable cardioverter-defibrillator candidates were consented and randomized to standard pre-ICD implantation care vs. standard care plus a nurse-led educational intervention. The primary feasibility outcomes included: recruitment rate, consent rate, randomization rate, proportion of participants able to complete all questionnaires, time to deliver intervention, and intervention topics completion. At baseline, demographic and Patient-Reported Outcomes Measurement Information System (PROMIS) anxiety scores were collected. Four weeks post-ICD implantation, participants completed the PROMIS, Florida Patient Acceptance Survey (FPAS), and Florida Shock Anxiety Scale (FSAS). Twenty patients consented (10 per group). Feasibility targets were achieved for all but two outcomes: consent rate was 87% vs. 95% target, and completion of data collection measures was 85% vs. 90% target. Consent rate was lower than expected as one patient declined, and two could not be approached. Completion rate was lower than expected as two patients were lost to follow-up, and one did not receive an ICD during the study period, leading to incomplete post-implantation survey collections.

Conclusion: The results demonstrate the feasibility of conducting a trial comparing a nurse-led pre-implantation educational intervention to standard care in an outpatient setting. Further study to evaluate the effectiveness of this intervention on patient-reported outcomes is warranted.
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http://dx.doi.org/10.1093/eurjcn/zvaa009DOI Listing
December 2020

Transition Experiences of Caregivers of Older Adults With Dementia and Multiple Chronic Conditions: An Interpretive Description Study.

SAGE Open Nurs 2020 Jan-Dec;6:2377960820934290. Epub 2020 Jun 18.

School of Nursing, McMaster University, Hamilton, ON, Canada.

Introduction: Family caregivers provide most of the care for older persons living with dementia (PLWD) and multiple chronic conditions (MCCs) in the community. Caregivers experience transitions, such as changes to their health, roles, and responsibilities, during the process of caring. Transitions encompass a time when caregivers undergo stressful responses to change. However, we know little about the transition experiences of caregivers of persons living with both dementia and MCCs.

Objective: This qualitative study explored the transition experiences of caregivers of PLWD within the context of MCCs, from the perspective of both caregivers and practitioners. The research question was the following: What are the transition experiences of family caregivers in providing care to older PLWD and MCCs living in the community?

Methods: This study was conducted using an interpretive description approach. Semistructured interviews were conducted with 19 caregivers of older community-dwelling PLWD and MCCs and 7 health-care providers working with caregivers in Ontario, Canada. Concurrent data collection and inductive data analysis were used.

Results: Caregivers of older PLWD and MCCs experienced four key transitions: (a) taking on responsibility for managing multiple complex conditions, (b) my health is getting worse, (c) caregiving now defines my social life, and (d) expecting that things will change. Findings highlight how the coexistence of MCCs with dementia complicates caregiver transitions and the importance of social networks for facilitating transitions.

Conclusion: The study provided insight on the transition experiences of caregivers of older PLWD and MCCs. MCCs increased the care load and further complicated caregivers' transition experiences. Health-care providers, such as nurses, can play important roles in supporting caregivers during these transitions and engage them as partners in care.
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http://dx.doi.org/10.1177/2377960820934290DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7774379PMC
June 2020

Impact of nurse scientist-led digital health interventions on management of chronic conditions.

Nurs Outlook 2020 Nov - Dec;68(6):745-762. Epub 2020 Sep 7.

School of Nursing, McMaster University, Hamilton, ON, Canada; Population Health Research Unit, Hamilton ON, Canada.

Background: Chronic conditions are a major contributor to the burden of disease worldwide. Using innovative digital health technologies, nurse scientists are well-positioned to lead efforts to reduce the burden of chronic conditions on individuals, communities, and systems.

Purpose: The purpose of this review was to summarize the outcomes commonly measured in nurse-led digital health interventions that target chronic conditions and pose recommendations for the education of future nurse scientists to lead these studies.

Methods: A rapid review of the literature was completed using CINAHL and Ovid Emcare. Studies were included if the research: a) was led by a nurse; b) described outcomes of a digital health intervention; and c) included any population with a prevalent chronic condition.

Findings: 26 studies were included in this review. Nurse-led digital health interventions are being used to support and manage a range of chronic conditions in varied settings.

Discussion: Digital health interventions are changing the delivery of healthcare for individuals living with chronic conditions. These interventions are bridging the gaps between the digital and physical worlds and are rapidly evolving.

Conclusion: The recommendations posed in this review reiterate the importance of robust content and methods education for nurse scientists to address future research needs in a digital era.
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http://dx.doi.org/10.1016/j.outlook.2020.06.010DOI Listing
December 2020

Health-Related Quality of Life in Patients With Atrial Fibrillation Treated With Catheter Ablation or Antiarrhythmic Drug Therapy: A Systematic Review and Meta-analysis.

CJC Open 2020 Jul 2;2(4):286-295. Epub 2020 Apr 2.

School of Nursing, McMaster University, Hamilton, Ontario, Canada.

Background: Catheter ablation (CA) is performed in patients with atrial fibrillation (AF) to reduce symptoms and improve health-related quality of life (HRQL).

Methods: This systematic review and meta-analysis of randomized controlled trials (RCTs) evaluated CA of any energy modality compared with antiarrhythmic drugs (AADs) using inverse-variance random-effects models. We searched for RCTs reporting HRQL and AF-related symptoms at 3, 6, 12, 24, 48, and 60 months after treatment as well as the number of repeat ablations.

Results: Of 15,878 records, we included 13 RCTs of CA vs AADs for the analyses of HRQL, 7 RCTs for the analyses of AF-related symptoms, and 13 RCTs for the number of repeat ablations. For the HRQL analyses at 3 months, there were significant increases in both the Physical Component Summary score (3 months' standardized mean difference = 0.58 [0.39-0.78]; < 0.00001,  = 6%, 3 trials, n = 443) and the Mental Component Summary score (3 months' standardized mean difference = 0.57 [0.37-0.77]; < 0.00001,  = 0%, 3 trials, n = 443), favouring CA over AADs. These differences were sustained at 12 months but not >24 months after randomization. Similar results were seen for AF-related symptoms. The number of repeat ablations and success rates after procedure varied considerably across trials.

Conclusions: Evidence from few trials suggests that CA improves physical and mental health and AF-related symptoms in the short term, but these benefits decrease with time. More trials, reporting both HRQL and AF-related symptoms, at consistent time points are needed to assess the effectiveness of CA for the treatment of AF.
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http://dx.doi.org/10.1016/j.cjco.2020.03.013DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7365832PMC
July 2020

Decision Support for Implantable Cardioverter-Defibrillator Replacement: A Pilot Feasibility Randomized Controlled Trial.

J Cardiovasc Nurs 2021 Mar-Apr 01;36(2):143-150

Background: Decision support can help patients facing implantable cardioverter-defibrillator (ICD) replacement understand their options and reach an informed decision reflective of their preferences.

Objective: The aim of this study was to evaluate the feasibility of a decision support intervention for patients faced with the decision to replace their ICD.

Methods: A pilot feasibility randomized trial was conducted. Patients approaching ICD battery depletion were randomized to decision support intervention or usual care. Feasibility outcomes included recruitment rates, intervention use, and completeness of data; secondary outcomes were knowledge, values-choice concordance, decisional conflict, involvement in decision making, and choice.

Results: A total of 30 patients were randomized to intervention (n = 15) or usual care (n = 15). The intervention was used as intended, with 2% missing data. Patients in the intervention arm had better knowledge (77.4% vs 51.1%; P = .002). By 12 months, 8 of 13 (61.5%) in the intervention arm and 10 of 14 (71.4%) in the usual care arm accepted ICD replacement; 1 per arm declined (7.7% vs 7.1%, respectively).

Conclusion: It was feasible to deliver the intervention, collect data, despite slow recruitment. The decision support intervention has the potential to improve ICD replacement decision quality.
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http://dx.doi.org/10.1097/JCN.0000000000000694DOI Listing
May 2020

Preparing for patient partnership: A scoping review of patient partner engagement and evaluation in research.

Health Expect 2020 Jun 10;23(3):523-539. Epub 2020 Mar 10.

Faculty of Health Sciences, School of Nursing, McMaster University, Hamilton, ON, Canada.

Background: Realizing patient partnership in research requires a shift from patient participation in ancillary roles to engagement as contributing members of research teams. While engaging patient partners is often discussed, impact is rarely measured.

Objective: Our primary aim was to conduct a scoping review of the impact of patient partnership on research outcomes. The secondary aim was to describe barriers and facilitators to realizing effective partnerships.

Search Strategy: A comprehensive bibliographic search was undertaken in EBSCO CINAHL, and Embase, MEDLINE and PsycINFO via Ovid. Reference lists of included articles were hand-searched.

Inclusion Criteria: Included studies were: (a) related to health care; (b) involved patients or proxies in the research process; and (c) reported results related to impact/evaluation of patient partnership on research outcomes.

Data Extraction And Synthesis: Data were extracted from 14 studies meeting inclusion criteria using a narrative synthesis approach.

Main Results: Patient partners were involved in a range of research activities. Results highlight critical barriers and facilitators for researchers seeking to undertake patient partnerships to be aware of, such as power imbalances between patient partners and researchers, as well as valuing of patient partner roles.

Discussion: Addressing power dynamics in patient partner-researcher relationships and mitigating risks to patient partners through inclusive recruitment and training strategies may contribute towards effective engagement. Further guidance is needed to address evaluation strategies for patient partnerships across the continuum of patient partner involvement in research.

Conclusions: Research teams can employ preparation strategies outlined in this review to support patient partnerships in their work.
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http://dx.doi.org/10.1111/hex.13040DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7321722PMC
June 2020

Clinical Outcomes in Atrial Fibrillation Research: Shining a Light on a New Path.

JACC Clin Electrophysiol 2019 05;5(5):606-607

Population Health Research Institute, McMaster University, Hamilton, Ontario, Canada; School of Nursing, McMaster University, Hamilton, Ontario, Canada.

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http://dx.doi.org/10.1016/j.jacep.2019.03.016DOI Listing
May 2019

Examination of psychological risk factors for chronic pain following cardiac surgery: protocol for a prospective observational study.

BMJ Open 2019 03 1;9(2):e022995. Epub 2019 Mar 1.

Anesthesiology, Perioperative Medicine and Surgical Research Unit, Population Health Research Institute, Hamilton, Ontario, Canada.

Introduction: Approximately 400 000 Americans and 36 000 Canadians undergo cardiac surgery annually, and up to 56% will develop chronic postsurgical pain (CPSP). The primary aim of this study is to explore the association of pain-related beliefs and gender-based pain expectations on the development of CPSP. Secondary goals are to: (A) explore risk factors for poor functional status and patient-level cost of illness from a societal perspective up to 12 months following cardiac surgery; and (B) determine the impact of CPSP on quality-adjusted life years (QALYs) borne by cardiac surgery, in addition to the incremental cost for one additional QALY gained, among those who develop CPSP compared with those who do not.

Methods And Analyses: In this prospective cohort study, 1250 adults undergoing cardiac surgery, including coronary artery bypass grafting and open-heart procedures, will be recruited over a 3-year period. Putative risk factors for CPSP will be captured prior to surgery, at postoperative day 3 (in hospital) and day 30 (at home). Outcome data will be collected via telephone interview at 6-month and 12-month follow-up. We will employ generalised estimating equations to model the primary (CPSP) and secondary outcomes (function and cost) while adjusting for prespecified model covariates. QALYs will be estimated by converting data from the Short Form-12 (version 2) to a utility score.

Ethics And Dissemination: This protocol has been approved by the responsible bodies at each of the hospital sites, and study enrolment began May 2015. We will disseminate our results through CardiacPain.Net, a web-based knowledge dissemination platform, presentation at international conferences and publications in scientific journals.

Trial Registration Number: NCT01842568.
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http://dx.doi.org/10.1136/bmjopen-2018-022995DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6398732PMC
March 2019

"I don't know exactly what you're referring to": the challenge of values elicitation in decision making for implantable cardioverter-defibrillators.

Patient Prefer Adherence 2018 28;12:1947-1954. Epub 2018 Sep 28.

School of Nursing, University of Ottawa, Ottawa, ON, Canada.

Purpose: Patients' values are a key component of patient-centered care and shared decision making in health care organizations. There is limited understanding on how patients' values guide their health related decision making or how patients understand the concept of values during these processes. This study investigated patients' understanding of their values in the context of considering the risks/benefits of receiving an implantable cardioverter-defibrillator (ICD).

Patients And Methods: A qualitative substudy was conducted within a feasibility trial with first-time ICD candidates randomized to receive a patient decision aid or usual care prior to specialist consultation. Semi-structured interviews were conducted with participants post-implantation or post-specialist consultation.

Results: Sixteen patients (ten male) aged 47-87 years participated. Of these, ten (62.5%) received the patient decision aid prior to specialist consultation. Findings revealed patients were confused by the word "values" and had difficulty expressing values related to risks/benefits during ICD decision making. When probed, values were conceptualized broadly capturing other factors such as desire to live, good quality of life, family's views, ICD information, control over decision, and medical authority.

Conclusion: This study revealed the difficulty patients considering an ICD had with articulating their values in the context of an ICD health decision and highlighted the challenge to effectively elicit patients' values within health decisions overall. It is suggested that there should be a shift away from the use of the word "values" when speaking directly to patients toward language such as "what matters to you the most" or "what is most important to you".
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http://dx.doi.org/10.2147/PPA.S173705DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC6168006PMC
September 2018

Postoperative Remote Automated Monitoring: Need for and State of the Science.

Can J Cardiol 2018 07 25;34(7):850-862. Epub 2018 Apr 25.

McMaster University, Faculty of Health Sciences, Hamilton, Ontario, Canada; Population Health Research Institute, McMaster University and Hamilton Health Sciences, Hamilton, Ontario, Canada.

Worldwide, more than 230 million adults have major noncardiac surgery each year. Although surgery can improve quality and duration of life, it can also precipitate major complications. Moreover, a substantial proportion of deaths occur after discharge. Current systems for monitoring patients postoperatively, on surgical wards and after transition to home, are inadequate. On the surgical ward, vital signs evaluation usually occurs only every 4-8 hours. Reduced in-hospital ward monitoring, followed by no vital signs monitoring at home, leads to thousands of cases of undetected/delayed detection of hemodynamic compromise. In this article we review work to date on postoperative remote automated monitoring on surgical wards and strategy for advancing this field. Key considerations for overcoming current barriers to implementing remote automated monitoring in Canada are also presented.
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http://dx.doi.org/10.1016/j.cjca.2018.04.021DOI Listing
July 2018

User-centered Development of a Decision Aid for Patients Facing Implantable Cardioverter-Defibrillator Replacement: A Mixed-Methods Study.

J Cardiovasc Nurs 2018 Sep/Oct;33(5):481-491

Krystina B. Lewis, MN, RN PhD candidate, School of Nursing, University of Ottawa, and Registered Nurse, University of Ottawa Health Institute, Ontario, Canada. David Birnie, MD Director of Arrhythmia Service, University of Ottawa Heart Institute, Ontario, Canada. Sandra L. Carroll, PhD, RN Associate Professor, School of Nursing, McMaster University, Hamilton, Ontario, Canada. Lorraine Clark, MHS, RN Clinical Manager, Clinical Services, University of Ottawa Heart Institute, Ontario, Canada. Freya Kelly, MN, RN Registered Nurse, University of Ottawa Heart Institute, Ontario, Canada. Paul Gibson Patient Partner, Health Consumer, Ottawa, Canada. Lloyd Rockburn Patient Partner, Health Consumer, Ottawa, Canada. Louise Rockburn Patient Partner, Health Consumer, Ottawa, Canada. Dawn Stacey, PhD, RN Professor, School of Nursing, University of Ottawa, and Senior Scientist, Ottawa Hospital Research Institute, Ontario, Canada.

Background: Because of battery depletion, an implantable cardioverter-defibrillator (ICD) generator requires surgical replacement every 5 to 7 years. Routine replacement is the norm without discussion with patients about whether or not to proceed.

Objective: The aim of this study was to develop a patient decision aid (PDA) for patients facing ICD replacement and plan for its implementation.

Methods: An embedded mixed-methods study was conducted using questionnaires and semistructured interviews focused on current ICD replacement practices; PDA acceptability, usability, and content; and PDA implementation. Transcripts were analyzed using constant comparative analysis.

Results: Eighteen PDA end users in 16 interviews characterized the current ICD replacement approach as automatic without consideration for patient preferences. The PDA was positively received, and the content was iteratively revised 4 times during the interviews. Changes were related to missing and excess information, language, and wording. The PDA was identified as a means to support a shared decision-making (SDM) process, not to be used as a standalone instrument. To shift current practices to an SDM process, participants identified that an invitation to discuss the option of ICD replacement is required-whether initiated by the patient or the clinician.

Conclusion: Currently, the option of ICD replacement is rarely offered, and patient preferences are seldom elicited. Participants believed the PDA to be a useful intervention that could help facilitate an SDM process for patients facing ICD replacement. Preparing for implementation during the development phase will allow us to strategize effectively to overcome perceived barriers and capitalize on perceived facilitators during actual implementation.
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http://dx.doi.org/10.1097/JCN.0000000000000477DOI Listing
November 2019

Incorporating patients' preference diagnosis in implantable cardioverter defibrillator decision-making: a review of recent literature.

Curr Opin Cardiol 2018 Jan;33(1):42-49

aSchool of Nursing, University of OttawabUniversity of Ottawa Heart Institute, OttawacSchool of Nursing, McMaster University, HamiltondOttawa Hospital Research Institute, Ottawa, CanadaeDepartment of Medicine, School of Medicine, University of Colorado, Aurora, Colorado, USA.

Purpose Of Review: Strong recommendations exist for implantable cardioverter defibrillators (ICD) in appropriately selected patients. Yet, patient preferences are not often incorporated when decisions about ICD therapy are made. Literature published since 2016 was reviewed aiming to discuss current advances and ongoing challenges with ICD decision-making in adults, discuss shared decision-making (SDM) as a strategy to incorporate preference diagnoses, summarize current evidence on effective interventions to facilitate SDM, and identify opportunities for research and practice.

Recent Findings: Advances in risk stratification can identify patients who will most and least likely benefit from the ICD. Interventions to support SDM are emerging. These interventions present options, the risks, and the benefits of each option, and elicit patients' values and preferences regarding possible outcomes.

Summary: Appropriate patient selection for initial or continued ICD therapy is multifactorial. It requires accurate clinical diagnosis using careful risk stratification and accurate preference diagnosis based upon the patient's preferences. SDM aims to unite the elements that constitute these two equally important diagnoses. High-quality decision-making will be difficult to achieve if patients lack or misunderstand information, and if evolving patient preferences are not incorporated when making decisions.
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http://dx.doi.org/10.1097/HCO.0000000000000464DOI Listing
January 2018

Evaluating the feasibility of conducting a trial using a patient decision aid in implantable cardioverter defibrillator candidates: a randomized controlled feasibility trial.

Pilot Feasibility Stud 2017 21;3:49. Epub 2017 Nov 21.

Population Health Research Institute, Hamilton Health Sciences, Hamilton, ON Canada.

Background: Patient decision aids (PtDA) support quality decision-making. The aim of this research was to evaluate the feasibility of conducting a randomized controlled trial delivering an implantable cardioverter defibrillator (ICD)-specific PtDA to new ICD candidates and examining preliminary estimates of differences in outcomes.

Methods: Prior to recruitment, ICD candidacy was determined. Consented patients were randomized to (1) usual care or (2) PtDA intervention. Feasibility outcomes included referral and recruitment rates, successful PtDA delivery, and completion of measures. The PtDA intervention was administered prior to specialist consultation and baseline demographics, and measures of decision quality including decisional conflict (DCS), SURE test (Sure of myself, Understand information, Risk-benefit ratio, Encouragement), patient's ICD specific values, ICD knowledge, and health-related quality of life were recorded. Post-consultation, participant's DCS was repeated and decisions to proceed, decline, or defer ICD implantation were collected. Feasibility data was determined using descriptive statistics (continuous and categorical). Preliminary estimates of differences in outcomes were assessed using mean differences. Concordance between values and decision choice was assessed using logistic regression of the intervention group.

Results: We identified 135 eligible patients. Eighty-two consented to the trial randomizing patients to usual care ( = 41) or PtDA intervention ( = 41). Feasibility outcome results were (1) referral rate at approximately 20/month, (2) recruitment rate 61%, and (3) successful delivery of PtDA and study management. Pre-consultation, PtDA patients scored lower on the DCS scale (mean, standard deviation [SD] 27.3 (18.4) compared to usual care, 49.4 (18.6); the between-group difference in means [95% confidence interval (CI)] was - 22.1[- 30.23, - 13.97]. A difference remained post-implantation 21.2 (11.7), PtDA intervention 29.9 (13.3), and usual care - 8.7 [- 14.61, - 2.86]. SURE test results supported DCS differences. The PtDA group scored higher on the ICD-related knowledge questions, with 47.50% scoring greater than 3/5 of the knowledge questions correct, compared to 23.09% receiving usual care. The mean [SD] number of correct knowledge responses out of 5 was 3.33(1.19) in the PtDA group and 2.62 (1.16) in usual care pre-implant. Concordance between values and decision choice found a strong association between predicted and actual ICD implant status in the intervention group.

Conclusion: Our results suggest that a future definitive trial is feasible. The ICD-specific PtDA shows promise with respect to preliminary estimates of differences in outcomes.

Trial Registration: NCT01876173.
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http://dx.doi.org/10.1186/s40814-017-0189-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5697082PMC
November 2017

Questioning patient engagement: research scientists' perceptions of the challenges of patient engagement in a cardiovascular research network.

Patient Prefer Adherence 2017 13;11:1573-1583. Epub 2017 Sep 13.

Faculty of Health Sciences, Department of Medicine, McMaster University, Hamilton, ON, Canada.

Background: Patient engagement in research is a dominant discourse in clinical research settings as it is seen as a move toward sustainable and equitable health care systems. In Canada, a key driver is the Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, which asserts that meaningful patient engagement can only be fostered when stakeholders understand its value. This study assessed researchers' perceptions of the meaning and value of patient engagement in research within a Canadian cardiovascular research network. In doing so, the secondary aim was to inform the development of a structured patient engagement initiative by identifying potential challenges and related mitigation strategies.

Methods: We employed a multi-method strategy involving electronic surveys and semi-structured telephone interviews with network research scientists across Canada. Interview data were analyzed using thematic and content analysis. Survey data were analyzed using descriptive statistics.

Results: Thirty-eight electronic surveys (response rate =33%) and 16 interviews were completed with network members. Some participants were uncertain about the meaning and value of patient engagement. While voicing guarded support, four challenges relating to patient engagement were identified from the interviews: 1) identification of representative and appropriate patients, 2) uncertainty about the scope of patients' roles given concerns about knowledge discrepancies, 3) a perceived lack of evidence of the impact of patient engagement, and 4) the need for education and culture change as a prerequisite for patient engagement. Research scientists were largely concerned that patients untrained in science and tasked with conveying an authentic patient experience and being a conduit for the voices of others might unsettle a traditional model of conducting research.

Conclusion: Concerns about patient involvement in research were related to a lack of clarity about the meaning, process, and impact of involvement. This study highlights the need for education on the meaning of patient engagement, evidence of its impact, and guidance on practical aspects of implementation within this research community.
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http://dx.doi.org/10.2147/PPA.S135457DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5602467PMC
September 2017

The Caregiver Contribution to Heart Failure Self-Care (CACHS): Further Psychometric Testing of a Novel Instrument.

Res Nurs Health 2017 04 16;40(2):165-176. Epub 2016 Nov 16.

Associate Professor, Faculty of Health Sciences, School of Nursing, McMaster University, Hamilton, ON.

Caregivers (CGs) contribute important assistance with heart failure (HF) self-care, including daily maintenance, symptom monitoring, and management. Until CGs' contributions to self-care can be quantified, it is impossible to characterize it, account for its impact on patient outcomes, or perform meaningful cost analyses. The purpose of this study was to conduct psychometric testing and item reduction on the recently developed 34-item Caregiver Contribution to Heart Failure Self-care (CACHS) instrument using classical and item response theory methods. Fifty CGs (mean age 63 years ±12.84; 70% female) recruited from a HF clinic completed the CACHS in 2014 and results evaluated using classical test theory and item response theory. Items would be deleted for low (<.05) or high (>.95) endorsement, low (<.3) or high (>.7) corrected item-total correlations, significant pairwise correlation coefficients, floor or ceiling effects, relatively low latent trait and item information function levels (<1.5 and p > .5), and differential item functioning. After analysis, 14 items were excluded, resulting in a 20-item instrument (self-care maintenance eight items; monitoring seven items; and management five items). Most items demonstrated moderate to high discrimination (median 2.13, minimum .77, maximum 5.05), and appropriate item difficulty (-2.7 to 1.4). Internal consistency reliability was excellent (Cronbach α = .94, average inter-item correlation = .41) with no ceiling effects. The newly developed 20-item version of the CACHS is supported by rigorous instrument development and represents a novel instrument to measure CGs' contribution to HF self-care. © 2016 Wiley Periodicals, Inc.
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http://dx.doi.org/10.1002/nur.21775DOI Listing
April 2017

The Canadian Arrhythmogenic Right Ventricular Cardiomyopathy Registry: Rationale, Design, and Preliminary Recruitment.

Can J Cardiol 2016 12 21;32(12):1396-1401. Epub 2016 Apr 21.

QEII Health Sciences Center, Halifax, Nova Scotia, Canada.

Background: Arrhythmogenic right ventricular cardiomyopathy (ARVC) is a complex and clinically heterogeneous arrhythmic condition. Incomplete penetrance and variable expressivity are particularly evident in ARVC, making clinical decision-making challenging.

Methods: Pediatric and adult cardiologists, geneticists, genetic counsellors, ethicists, nurses, and qualitative researchers are collaborating to create the Canadian ARVC registry using a web-based clinical database. Biological samples will be banked and systematic analysis will be performed to examine potentially causative mutations, variants, and biomarkers. Outcomes will include syncope, ventricular arrhythmias, defibrillator therapies, heart failure, and mortality.

Results: Preliminary recruitment has enrolled 365 participants (aged 42.7 ± 17.1 years; 50% women), including 129 probands and 236 family members. Previous cardiac arrest occurred in 28 (8%) participants, syncope occurred in 43 (12%) participants, and 46% of probands had a family history of sudden death. Overall yield of genetic testing was 36% for a disease-causing mutation and 20% for a variant of unknown significance. Target enrollment is 1000 affected patients and 500 unaffected family member controls over 7 years. The cross-sectional and longitudinal data collected in this manner will allow a robust assessment of the natural history and clinical course of genetic subtypes.

Conclusions: The Canadian ARVC Registry will create a population-based cohort of patients and their families to inform clinical decisions regarding patients with ARVC.
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http://dx.doi.org/10.1016/j.cjca.2016.04.004DOI Listing
December 2016

Estimating the Risks and Benefits of Implantable Cardioverter Defibrillator Generator Replacement: A Systematic Review.

Pacing Clin Electrophysiol 2016 Jul 29;39(7):709-22. Epub 2016 Apr 29.

University of Ottawa Heart Institute, Ottawa, Canada.

Background: Every 4-7 years an implantable cardioverter defibrillator (ICD) pulse generator must be replaced surgically. This procedure is not without risk. In some cases, the risk versus benefit ratio may be against replacement. We aimed to synthesize the evidence on risks, benefits, and costs related to ICD replacement.

Methods: A systematic review was conducted using electronic databases from 2000 onward. Literature screening, quality appraisal, and data extraction were independently conducted by two reviewers. Outcomes included major and minor complications, ICD therapies, and costs, which were synthesized descriptively.

Results: Of 1,483 citations, 17 nonrandomized studies met criteria. Median rate of major complications was 4.05% (range 0.55-7.37%) and minor complications was 3.50% (range 0.36-7.37%). Without non-ICD control groups, the true risk reduction provided by the ICD following replacement is unknown. Following ICD replacement, annualized rate of appropriate ICD therapy was 10.52% (range 2.42-75.00%). Of these, patients without therapies during their first generator life and those no longer meeting ICD criteria received appropriate therapies at nontrivial rates.

Conclusion: Rates of complications associated with ICD replacement are substantial. No study had nonreplacement groups, hence the true risk reduction provided by the ICD following replacement is unknown. Our analysis did not identify a subgroup at low risk of therapies following replacement. Shared discussions should occur with patients about the evidence, healthcare goals, risk tolerances, and feelings about life and death trade-offs to enable high-quality decisions about ICD replacement.
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http://dx.doi.org/10.1111/pace.12850DOI Listing
July 2016

Transition to palliative care when transcatheter aortic valve implantation is not an option: opportunities and recommendations.

Curr Opin Support Palliat Care 2016 Mar;10(1):18-23

aSt. Paul's Hospital Vancouver, Canada bUniversity of British Columbia, Vancouver, Canada cMcMaster University, Hamilton, Canada dVancouver General Hospital, Vancouver, Canada.

Purpose Of Review: Transcatheter aortic valve implantation (TAVI) is the recommended treatment for most patients with symptomatic aortic stenosis at high surgical risk. However, TAVI may be clinically futile for patients who have multiple comorbidities and excessive frailty. This group benefits from transition to palliative care to maximize quality of life, improve symptoms, and ensure continuity of health services. We discuss the clinical determination of utility and futility, explore the current evidence guiding the integration of palliative care in procedure-focused cardiac programs, and outline recommendations for TAVI programs.

Recent Findings: The determination of futility of treatment in elderly patients with aortic stenosis is challenging. There is a paucity of research available to guide best practices when TAVI is not an option. Opportunities exist to build on the evidence gained in the management of end of life and heart failure. TAVI programs and primary care providers can facilitate improved communication and processes of care to provide decision support and transition to palliative care.

Summary: The increased availability of transcatheter options for the management of valvular heart disease will increase the assessment of people with life-limiting conditions for whom treatment may not be an option. It is pivotal to bridge cardiac innovation and palliation to optimize patient outcomes.
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http://dx.doi.org/10.1097/SPC.0000000000000180DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4927321PMC
March 2016

Factors influencing the decision of older adults to be assessed for transcatheter aortic valve implantation: An exploratory study.

Eur J Cardiovasc Nurs 2016 12 23;15(7):486-494. Epub 2015 Oct 23.

Centre for Heart Valve Innovation, St Paul's Hospital, Canada.

Background: Transcatheter aortic valve implantation (TAVI) is the recommended therapy for patients with severe symptomatic aortic stenosis at increased surgical risk and likely to derive benefit. Multimodality and multidisciplinary assessment is required for the heart team to determine eligibility for TAVI in a primarily older population. Little is known about patients' motivation and perspectives on making the decision to undergo the complex assessment.

Aims: To explore factors influencing patients' decision making to undergo TAVI eligibility assessment to inform practice, programme development, health policy and future research.

Methods: An exploratory qualitative approach was used. Semistructured interviews were conducted with 15 patients at the time of their referral for assessment to a quaternary cardiac and high volume TAVI centre.

Results: Multiple, intersecting factors that included biomedical, functional, social and environmental considerations influenced patients' decision. The six distinct factors were symptom burden, participants' perception as 'experienced' patients, expectations of benefit and risks, healthcare system and informal support, logistical barriers and facilitators, and obligations and responsibilities.

Conclusions: The decision to undergo TAVI eligibility assessment is multifaceted and complex. Programmatic processes of care must be in place to facilitate appropriate and patient-centered decision making and access to TAVI. Strategies are required to mitigate the risks associated with the rapid deterioration of severe aortic stenosis, address patient and referring physicians' education needs, and provide individualised care and equitable access. Future research must focus on patients' experiences throughout the trajectory of TAVI care.
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http://dx.doi.org/10.1177/1474515115612927DOI Listing
December 2016

The CREATE Method for Expressing Continuous Outcome Data in Absolute Terms for Use in Patient Treatment Decision Aids: A Validation Study.

Med Decis Making 2015 11 5;35(8):959-66. Epub 2015 Aug 5.

University of Ottawa and Ottawa Hospital Research Institute, Ottawa, ON, Canada (DS).

Background: Patient decision aids (PtDAs) supplement advice from health care professionals by communicating the absolute risk or benefit of treatment options (i.e., X/100). As such, PtDAs have been amenable to binary outcomes only. We aimed to develop and test the validity of the Conversion to Risk Estimates through Application of Normal Theory (CREATE) method for estimating absolute risk based on continuous outcome data.

Methods: CREATE is designed to derive an estimate of the proportion of those who experience a clinically relevant degree of change (CRDoC). We used a 2-stage validation process using real and simulated change score data, respectively. First, using raw data from published intervention trials, we calculated the proportion of patients with a CRDoC and compared that with our CREATE-derived estimate using chi-square tests of association. Second, 200,000 simulated distributions of change scores were generated with widely varying distribution characteristics. Actual and CREATE-derived estimates were compared for each simulated distribution, and relative differences were summarized graphically.

Results: The absolute difference between the estimated and actual CRDoC did not exceed 5% for any of the samples based on real data. Applying the CREATE method to 200,000 simulated scenarios demonstrated that the CREATE method should be avoided for outcomes where the underlying distribution can be reasonably assumed to have high levels of skew or kurtosis.

Conclusion: Our results suggest that standard statistical theory can be used to estimate continuous outcomes in absolute terms with reasonable accuracy for use in PtDAs; caution is advised if outcome summary statistics are assumed to have been derived from highly skewed distributions.
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http://dx.doi.org/10.1177/0272989X15598540DOI Listing
November 2015

Living with an implantable cardiac defibrillator: a model of chronic uncertainty.

Res Theory Nurs Pract 2014 ;28(1):71-86

Over the last two decades, the number of patients receiving implantable cardiac defibrillators (ICDs) for the prevention of sudden cardiac death has grown significantly. This growth is largely the result of broadened indication for ICD use because of the success of trials demonstrating efficacy. Early ICD indication centered on secondary prevention, which then advanced to primary prevention in high-risk patients. Nurses delivering care to these patients not only manage this complex technology but also patients' uncertainty about their survival and related psychosocial adjustment to receiving an ICD. To inform practice, theoretical models such as Mishel's (1988) uncertainty in illness model provide insight into such acute phases of illness. This article proposes expansion of the uncertainty in illness model to advance knowledge in this field for nurses caring for patients with ICD.
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http://dx.doi.org/10.1891/1541-6577.28.1.71DOI Listing
June 2014

Impact of self-management interventions on stable angina symptoms and health-related quality of life: a meta-analysis.

BMC Cardiovasc Disord 2014 Feb 1;14:14. Epub 2014 Feb 1.

Faculty of Health Sciences, McMaster University, 1280 Main Street West, Room HSC 2J20A, Hamilton, ON L8S 4K1, Canada.

Background: Chronic stable angina (CSA) has a major negative impact on health-related quality of life (HRQL) including poor general health status, psychological distress, and inability to self-manage.

Methods: We used meta-analysis to assess the effectiveness of self-management interventions for improving stable angina symptoms, HRQL and psychological well-being. Nine trials, involving 1,282 participants in total, were included. We used standard inverse-variance random-effects meta-analysis to combine the trials. Heterogeneity between trials was evaluated using chi-square tests for the tau-squared statistic and quantified using the I2 statistic.

Results: There was significant improvement in the frequency of angina symptoms (Seattle Angina Questionnaire [SAQ], symptom diary) across trials, standardized mean difference (SMD): 0.30 (95% Confidence interval [CI] 0.14, 0.47), as well as reduction in the use of sublingual (SL) nitrates, SMD: -0.49 (95% CI -0.77, -0.20). Significant improvements for physical limitation (SAQ), SMD: 0.38 (95% CI 0.20, 0.55) and depression scores (Hospital Anxiety and Depression Scale), SMD: -1.38 (95% CI -2.46, -0.30) were also found. The impact of SM on anxiety was uncertain due to statistical heterogeneity across trials for this outcome, I2 = 98%. SM did not improve other HRQL dimensions including angina stability, disease perception, and treatment satisfaction.

Conclusions: SM interventions significantly improve angina frequency and physical limitation; they also decrease the use of SL nitrates and improve depression in some cases. Further work is needed to make definitive conclusions about the impact of SM on cardiac-specific anxiety.
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http://dx.doi.org/10.1186/1471-2261-14-14DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3945741PMC
February 2014

Caregivers' contributions to heart failure self-care: a systematic review.

Eur J Cardiovasc Nurs 2015 Feb 6;14(1):79-89. Epub 2014 Jan 6.

McMaster University, Canada Hamilton Health Sciences, Canada.

Aims: The purpose of this study was to conduct a systematic review answering the following questions: (a) what specific activities do caregivers (CGs) contribute to patients' self-care in heart failure (HF)?; and (b) how mature (or developed) is the science of the CG contribution to self-care?

Methods: MEDLINE, EMBASE, Cumulative Index of Nursing and Allied Health Literature (CINAHL), the Cochrane Library and ClinicalTrials.gov were searched using the terms heart failure and caregiv* as well as the keywords 'careers', 'family members' and 'lay persons' for studies published between 1948 and September 2012. Inclusion criteria for studies were: informal CGs of adult HF patients-either as dependent/independent variable in quantitative studies or participant in qualitative studies; English language. Exclusion criteria for studies were: formal CGs; pediatric, adult congenital, or devices or transplant CGs; mixed diagnosis; non-empiric reports or reports publishing duplicate results. Each study was abstracted and confirmed by two authors. After CG activities were identified and theoretically categorized, an analysis across studies was conducted.

Results: Forty papers were reviewed from a pool of 283 papers. CGs contribute substantively to HF patients' self-care characterized from concrete (weighing the patient) to interpersonal (providing understanding). Only two studies attempted to quantify the impact of CGs' activities on patients' self-care reporting a positive impact. Our analysis provides evidence for a rapidly developing science that is based largely on observational research.

Conclusions And Implications Of Key Findings: To our knowledge, this is the first systematic review to examine CGs' contributions in depth. Informal caregivers play a major role in HF self-care. Longitudinal research is needed to examine the impact of CGs' contributions on patient self-care outcomes.
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http://dx.doi.org/10.1177/1474515113518434DOI Listing
February 2015

Development and feasibility testing of decision support for patients who are candidates for a prophylactic implantable defibrillator: a study protocol for a pilot randomized controlled trial.

Trials 2013 Oct 22;14:346. Epub 2013 Oct 22.

School of Nursing, Faculty of Health Sciences, McMaster University, Hamilton, ON, Canada.

Background: Patients, identified to be at risk for but who have never experienced a potentially lethal cardiac arrhythmia, have the option of receiving an implantable cardioverter defibrillator (ICD) as prophylaxis against sudden cardiac death - a primary prevention indication. In Canada, there is no clear framework to support patients' decision-making for these devices. Decision support, using a decision aid, could moderate treatment-related uncertainty and prepare patients to make well-informed decisions. Patient decision aids provide information on treatment options, risks, and benefits, to help patients clarify their values for outcomes of treatment options. The objectives of this research are: 1) develop a decision aid, 2) evaluate the decision aid, and 3) determine the feasibility of conducting a trial.

Methods/design: A development panel comprised of the core investigative team, health service researchers, decision science experts, cardiovascular healthcare practitioners, and ICD patient representatives will collaborate to provide input on the content and format of the aid. To generate probabilities to include in the aid, we will synthesize primary prevention ICD evidence. To obtain anonymous input about the facts and content, we will employ a modified Delphi process. To evaluate the draft decision aid will invite ICD patients and their families (n = 30) to rate its acceptability. After we evaluate the aid, to determine the feasibility, we will conduct a feasibility pilot randomized controlled trial (RCT) in new ICD candidates (n = 80). Participants will be randomized to receive a decision aid prior to specialist consultation versus usual care. Results from the pilot RCT will determine the feasibility of research processes; inform sample size calculation, measure decision quality (knowledge, values, decision conflict) and the influence of health related quality of life on decision-making.

Discussion: Our study seeks to develop a decision aid, for patients offered their first ICD for prophylaxis against sudden cardiac death. This paper outlines the background and methods of a pilot randomized trial which will inform a larger multicenter trial. Ultimately, decision support prior to specialist consultation could enhance the decision-making process between patients, physicians, and families, associated with life-prolonging medical devices like the ICD.

Trial Registration: ClinicalTrials.gov: NCT01876173.
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http://dx.doi.org/10.1186/1745-6215-14-346DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4015905PMC
October 2013

Management of patients with refractory angina: Canadian Cardiovascular Society/Canadian Pain Society joint guidelines.

Can J Cardiol 2012 Mar-Apr;28(2 Suppl):S20-41

University of Toronto, Toronto, Ontario, Canada.

Refractory angina (RFA) is a debilitating disease characterized by cardiac pain resistant to conventional treatments for coronary artery disease including nitrates, calcium-channel and β-adrenoceptor blockade, vasculoprotective agents, percutaneous coronary interventions, and coronary artery bypass grafting. The mortality rate of patients living with RFA is not known but is thought to be in the range of approximately 3%. These individuals suffer severely impaired health-related quality of life with recurrent and sustained pain, poor general health status, psychological distress, impaired role functioning, and activity restriction. Effective care for RFA sufferers in Canada is critically underdeveloped. These guidelines are predicated upon a 2009 Canadian Cardiovascular Society (CCS) Position Statement which identified that underlying the problem of RFA management is the lack of a formalized, coordinated, interprofessional strategy between the cardiovascular and pain science/clinical communities. The guidelines are therefore a joint initiative of the CCS and the Canadian Pain Society (CPS) and make practice recommendations about treatment options for RFA that are based on the best available evidence. Concluding summary recommendations are also made, giving direction to future clinical practice and research on RFA management in Canada.
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http://dx.doi.org/10.1016/j.cjca.2011.07.007DOI Listing
May 2012

Age and mental health predict early device-specific quality of life in patients receiving prophylactic implantable defibrillators.

Can J Cardiol 2012 Jul-Aug;28(4):502-7. Epub 2012 Mar 15.

School of Nursing, Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada.

Background: Ventricular arrhythmia is a significant cause of sudden death. Implantable cardioverter-defibrillators (ICDs) offer at-risk patients a prophylactic treatment option. This prophylaxis is largely responsible for growth in utilization of ICDs. Identification of factors that may impact device-specific quality of life (QOL) is warranted. The influence of preimplant patient variables on postimplant device-specific QOL is unknown. The study aimed to determine whether preimplant psychosocial, generic health-related quality of life (HRQOL), personality disposition, or demographic factors predicted early postimplant device-specific QOL.

Methods: A prospective cohort study design was employed in 70 adults receiving an ICD for primary prevention. Preimplant, we measured generic HRQOL, personality disposition, depressive symptoms, age, and sex. The primary outcome was 3-month ICD device-specific QOL as measured by the Florida Patient Acceptance Scale (FPAS). We applied hierarchical multivariate regression analysis.

Results: Mean age was 64.8 ± 9.4 years; 12.9% were women. Most had ischemic heart disease (77%) and a heart failure history (54.3%). Preimplant prevalence of elevated depressive symptoms was 30%. Three months post implant, the mean adjusted FPAS score was 76.8 ± 12.98. Of the variance in FPAS scores, 37% was explained by the independent variables. Younger age and poor preimplant mental HRQOL contributed most to lower FPAS scores.

Conclusions: Patient support and psychosocial interventions should target younger ICD candidates and those reporting poor preimplant mental HRQOL; these patients may be at risk for poor postimplant device-specific QOL.
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http://dx.doi.org/10.1016/j.cjca.2012.01.008DOI Listing
October 2012

Readability and content of patient education material related to implantable cardioverter defibrillators.

J Cardiovasc Nurs 2012 Nov-Dec;27(6):495-504

School of Nursing, McMaster University, Hamilton, Ontario, Canada.

Background: Implantable cardioverter defibrillators (ICDs) are increasingly offered to patients for primary prevention of sudden cardiac death. Candidates for ICD receive ICD-related patient education material when they make decisions to consent or decline a primary prevention ICD. Printed patient education material directed at ICD candidates has not been the focus of direct appraisal.

Objective: We evaluated the readability and content of ICD-related print education materials made available to patients who were enrolled in a study involving patient decision making for ICD from 3 ICD sites in southern Ontario, Canada.

Methods: All ICD print materials referred to during interviews and/or that were available in ICD site waiting rooms were collected for analysis. Readability testing was conducted using the "simple measurement of gobbledygook" and Fry methods. The material was evaluated according to selected plain-language criteria, thematic content analysis, and rhetoric analysis.

Results: Twenty-one print materials were identified and analyzed. Documents were authored by device manufacturers, tertiary care hospitals, and cardiac support organizations. Although many documents adhered to plain-language recommendations, text-reading levels were higher than recommended. Twelve major content themes were identified. Content focused heavily on the positive aspects of living with the device to the exclusion of other possible information that could be relevant to the decisions that patients made.

Conclusions: Print-based patient education materials for ICD candidates are geared to a highly literate population. The focus on positive information to the exclusion of potentially negative aspects of the ICD, or alternatives to accepting 1, could influence and/or confuse patients about the purpose and implications of this medical device. Development of print materials is indicated that includes information about possible problems and that would be relevant for the multicultural and debilitated population who may require ICDs. The findings are highly relevant for nurses who care for primary prevention ICD candidates.
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http://dx.doi.org/10.1097/JCN.0b013e31822ad3ddDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3380065PMC
April 2013

Patients' decision making to accept or decline an implantable cardioverter defibrillator for primary prevention of sudden cardiac death.

Health Expect 2013 Mar 7;16(1):69-79. Epub 2011 Jun 7.

School of Nursing, McMaster University, Hamilton, ON, Canada.

Background: Patients are offered implantable defibrillators (ICDs) for the prevention of sudden cardiac death (SCD). However, patients' decision-making process (DMP) of whether or not to accept an ICD has not been explored. We asked patients about their decision making when offered an ICD.

Design/setting: A grounded theory methodology was employed. Patients were recruited from three ICD centres. Those who received an ICD underwent interviews the first month after implant. Declining patients had interviews at their convenience. In-depth analysis of transcripts was completed. Identified themes were placed along process pathways in a DMP model and tested.

Findings: Forty-four patients consented to participate (25% women). Thirty-four accepted an ICD and 10 (23%) declined. Ages ranged from 26 to 87 (mean = 65; SD = 12.5). Participants were retired (65%), had ischaemic heart disease (64%) and some post-secondary education (52%). The DMP was triggered when patient's risk for SCD was communicated. The physician's recommendation and a new awareness SCD risk were motivators to accept the ICD. Patient's decision-making approaches fell along a continuum, from active and engaged to passive and indifferent. Patient's approaches were influenced most by the following: (i) trust; (ii) social influences and (iii) health state.

Conclusions: Health-care providers need to recognize the DMP pathways in which ICD candidacy and SCD risk are understood. The factors that influence a patient's decision warrant discussion pre-implant. It is imperative that patients comprehend the meaning of ICD candidacy to make an informed decision. Participants did not recall alternatives to receiving ICD therapy.
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http://dx.doi.org/10.1111/j.1369-7625.2011.00703.xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3380066PMC
March 2013

Patients' perspectives on end-of-life issues and implantable cardioverter defibrillators.

J Palliat Care 2011 ;27(1):6-11

McMaster University, School of Nursing, HSC 2J20D, 1200 Main Street West, Hamilton, Ontario, Canada, L8N 3Z5.

Increasing numbers of cardiovascular patients are receiving implantable cardioverter defibrillators (ICDs) for primary prevention of sudden cardiac death (SCD). This report examines patients' perspectives on related end-of-life issues. Using a grounded theory approach, audiotaped, semi-structured interviews were undertaken with 30 participants from two ICD referral centres in southwestern Ontario (24 who accepted an ICD and 6 who declined). Interview transcripts, verification with interviewees, researcher memos, published literature, and participant demographics were analyzed using NVivo7. Most participants were male, had comorbidities and an ejection fraction of less than 30 percent, and ranged in age from 26 to 87. Consensus was reached by three research team members on three main themes: quality versus quantity of life, preferred mode of death, and the technical realities of the ICD. The ICD was considered in relation to both quantity and quality of life. Most participants focused on the prevention of SCD, not the implications of the ICD for death by any other cause. Participants advocated for incorporating the ICD into advance care planning. Our findings have implications for the development of advance care plans and education of health professionals.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166954PMC
June 2011