Navigating Living Kidney Donation and Transplantation Among South Asian Canadians: The ACTION Project.

RATIONALE & OBJECTIVE: South Asian (SA) Canadians with kidney failure have a 50%-77% lower likelihood of kidney transplant and are less likely to identify potential living donors (LDs). This study aimed to identify health system-, patient-, and community-level barriers and facilitators for accessing LD kidney transplantation in the SA community to inform the development of health system- and community-level interventions to address barriers. STUDY DESIGN: Qualitative study. SETTING & PARTICIPANTS: 20 SA recipients of an LD or deceased-donor kidney transplant, 10 SA LDs, and 41 general SA community members. ANALYTICAL APPROACH: In-depth multilingual interviews were conducted with recipients and LDs. Gender-, language-, and age-stratified focus groups were conducted with general SA community members. Summative content analysis was used to analyze the data. RESULTS: Hesitancy in approaching potential donors, fear about the health of potential LDs, information gaps, language barriers, and challenges evaluating out-of-country donors were highlighted as significant barriers by recipients, and financial concerns and information gaps were identified by donors. Cultural barriers in the SA community were highlighted by donors, recipients, and community members as critical factors when considering donation and transplant; women and elderly SA Canadians highlighted nuanced challenges. Participants reported generally a favorable perception of their health care teams, citing SA representation in the teams as important to providing culturally and linguistically sensitive care. LIMITATIONS: Limited geographic, race, and cultural representation and reliance on virtual data collection. CONCLUSIONS: This study highlights several culturally relevant barriers to donation and transplant that are potentially modifiable through patient-, health system-, and community-focused engagement and education.

The dynamic nature of patient engagement within a Canadian patient-oriented kidney health research network: Perspectives of researchers and patient partners.

INTRODUCTION: Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD) is a pan-Canadian health research network that engages patients as partners across 18 unique projects and core infrastructure. In this qualitative study, we explored how research teams integrated patient partners into network research activities to inform our patient engagement approach. METHODS: To capture a breadth of perspectives, this qualitative descriptive study purposively sampled researchers and patient partners across 18 network research teams. We conducted 4 focus groups (2 patients and 2 researchers; n = 26) and 28 individual telephone interviews (n = 12 patient partners; n = 16 researchers). Transcripts were coded in duplicate, and themes were developed through an inductive, thematic analysis approach. RESULTS: We included 24 patient partners and 24 researchers from 17 of the 18 projects and all core committees within the network. Overarching concepts relate participants' initial impressions and uncertainty about patient engagement to an evolving appreciation of its value, impact and sustainability. We identified four themes with subthemes that characterized the dynamic nature of patient engagement and how participants integrated patients across network initiatives: (1) Reinforcing a shared purpose (learning together, collective commitment, evolving attitudes); (2) Fostering a culture of responsive and innovative research (accessible supports, strengthened process and product); (3) Aligning priorities, goals and needs (amenability to patient involvement, mutually productive relationships, harmonizing expectations); (4) Building a path to sustainability (value creation, capacity building, sustaining knowledge use). CONCLUSIONS: Our findings demonstrate the dynamic and adaptive processes related to patient engagement within a national, patient-oriented kidney health research network. Optimization of support structures and capacity are key factors to promote sustainability of engagement processes within and beyond the network. PATIENT OR PUBLIC CONTRIBUTION: This project was conceived in collaboration with a Can-SOLVE CKD patient partner (N. F.), with lived experience of kidney failure. He also co-designed the study's protocol, led focus groups and researcher interviews, and contributed to data analysis. L. G. has lived experience as a caregiver for a person with CKD and facilitated patient partner focus groups. The patient partners, both of whom are listed authors, provided important insights that shaped our interpretation and presentation of study findings.

Lessons from professional nursing associations' policy advocacy responses to the COVID-19 pandemic: An interpretive description.

BACKGROUND: Professional nursing associations across jurisdictions engaged in significant policy advocacy during the COVID-19 pandemic to support nurses, the public and health systems. While professional nursing associations have a long history of engaging in policy advocacy, scholars have rarely critically examined this important function. PURPOSE: The purpose of this study was twofold: (a) to examine how professional nursing associations engage in the process of policy advocacy and (b) to develop knowledge specific to policy advocacy in the context of a global pandemic. METHODS: This study was conducted using interpretive description. A total of eight individuals from four professional nursing associations (two local, one national and one international) participated. Data sources included semi-structured interviews conducted between October 2021 and December 2021 and internal and external documents produced by organizations. Data collection and analysis occurred concurrently. Within-case analysis was conducted prior to cross-case comparisons. FINDINGS: Six key themes were developed to illustrate the lessons learned from these organizations including their organization's role in supporting a wide audience (professional nursing associations as a compass); the scope of their policy priorities (bridging the gaps between issues and solutions), the breadth of their advocacy strategies (top down, bottom up and everything in between), the factors influencing their decision-making (looking in and looking out), their evaluation practices (focus on contribution, not attribution) and the importance of capitalizing on windows of opportunity. CONCLUSIONS: This study provides insight into the nature of policy advocacy carried out by professional nursing associations. IMPACT: The findings suggest the need for those leading this important function to think critically about their role in supporting a wide range of audiences, the breadth and depth of their policy priorities and advocacy strategies, the factors that influence their decision-making, and the ways in which their policy advocacy work can be evaluated to move towards greater influence and impact.

Nigerian Health Care Providers and Diabetes Self-Management Support: Their Perspectives and Practices.

Nigeria struggles to reframe its traditional acute-care disease approach to health care to accommodate rising needs for chronic disease care. This interpretive descriptive study explored Nigerian healthcare providers' (HCPs) perspectives, experiences, and practices related to self-management support (SMS). Observational and experiential data were gathered from 19 HCPs at two urban hospitals in Southeastern Nigeria (seven physicians, four nurses, five dietitians/nutritionists, and three health educators). There were four themes: (a) compliance-oriented medical model, (b) SMS as advice, informal counseling, and education, (c) navigating the sociocultural terrain, and (d) workarounds. Nigerian HCPs perspectives and SMS practices were characterized by attempts to foster compliance with healthcare instructions within a traditional biomedical model. Participants enhanced patient support using specific strategies to bypass structural system obstacles. These findings demonstrate the need to reevaluate the current understanding of SMS in Nigeria and its practice.

Knowledge translation resources to support the use of quality of life assessment tools for the care of older adults living at home and their family caregivers.

PURPOSE: To support the use of quality of life (QOL) assessment tools for older adults, we developed knowledge translation (KT) resources tailored for four audiences: (1) older adults and their family caregivers (micro), (2) healthcare providers (micro), (3) healthcare managers and leaders (meso), and (4) government leaders and decision-makers (macro). Our objectives were to (1) describe knowledge gaps and resources and (2) develop corresponding tailored KT resources to support use of QOL assessment tools by each of the micro-, meso-, and macro-audiences. METHODS: Data were collected in two phases through semi-structured interviews/focus groups with the four audiences in Canada. Data were analyzed using qualitative description analysis. KT resources were iteratively refined through formative evaluation. RESULTS: Older adults and family caregivers (N = 12) wanted basic knowledge about what "QOL assessment" meant and how it could improve their care. Healthcare providers (N = 13) needed practical solutions on how to integrate QOL assessment tools in their practice. Healthcare managers and leaders (N = 14) desired information about using patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in healthcare programs and quality improvement. Government leaders and decision-makers (N = 11) needed to know how to access, use, and interpret PROM and PREM information for decision-making purposes. Based on these insights and evidence-based sources, we developed KT resources to introduce QOL assessment through 8 infographic brochures, 1 whiteboard animation, 1 live-action video, and a webpage. CONCLUSION: Our study affirms the need to tailor KT resources on QOL assessment for different audiences. Our KT resources are available: www.healthyqol.com/older-adults .

Theory utilization in applied qualitative nursing research.

AIMS: To explore the nuances of theory utilization in qualitative methodologies, discuss the different relationships that applied qualitative methodologies have with theory and use the foundational underpinnings of interpretive description to challenge strongly entrenched ideas of theory that have extended into applied qualitative nursing research. DESIGN: Methodology discussion paper. DATA SOURCES: Narrative literature review and personal observations. CONCLUSION: Many qualitative research traditions have viewed the use of an explicit theoretical framework as an integral grounding for qualitative research studies. Much of the discussion of theory in extant qualitative methodological literature focuses on its use in the context of traditional methodologies such as ethnography, phenomenology and grounded theory, with less attention on methodological approaches developed for applied and practice disciplines such as nursing. Uncritical adoption of ideas about theory based on traditional qualitative methodological conventions can result in findings with little utility for application to the practice context. IMPACT: Nursing researchers should think critically about how theory is used in research endeavours geared towards applied practice and ensure that their methodological choices are in alignment with their philosophical and disciplinary epistemological positionings.

'There is always a way to living with illness'-Self-management strategies reported by Chinese hospitalized patients with cardiovascular disease: A descriptive qualitative study.

OBJECTIVES: Patients living with cardiovascular diseases use different strategies to solve various problems. This study aimed to identify the category, type and specific self-management strategies reported by hospitalized patients with cardiovascular diseases. METHODS: This is a qualitative descriptive study. Twenty-eight individuals with cardiovascular diseases from a Cardiology Department affiliated with a school in China were recruited by purposive sampling. Face-to-face semi-structured interviews were used. The interviews were audio-recorded, transcribed, translated and analysed by using content analysis. RESULTS: Five self-management strategy categories (medical and alternative therapy uptake, risk assessment and avoidance, resource seeking and utilization, maintaining normality, and optional management), and seventeen self-management strategy types, encompassing one hundred and ten specific strategies were identified. The most commonly used self-management strategy types were lifestyle adjustment (eleven strategies), self-maintenance (nine strategies) and problem-solving (nine strategies). Additionally, the most described explicit self-management strategies were receiving family/colleague support, maintaining daily routines, monitoring symptoms and managing side effects, discussing with professionals, using medicines, and improving awareness. CONCLUSION: This study identified diverse strategies reported by some Chinese cardiovascular patients. It may inform the design and development of personalized self-management interventions for health practitioners and policymakers, helping cardiovascular patients in Chinese communities worldwide receive culture-tailored services.

Policy Advocacy and Nursing Organizations: A Scoping Review.

Policy advocacy is a fundamental component of nursing's social mandate. While it has become a core function of nursing organizations across the globe, the discourse around advocacy has focused largely on the responsibilities and accountabilities of individual nurses, with little attention to the policy advocacy work undertaken by nursing organizations. To strengthen this critical function, an understanding of the extant literature is needed to identify areas that require further research. We conducted a scoping review to examine the nature, extent, and range of scholarly work focused on nursing organizations and policy advocacy. A systematic search of six databases produced 4,731 papers and 68 were included for analysis and synthesis. Findings suggest that the literature has been increasing over the years, is largely non-empirical, and covers a broad range of topics ranging from the role and purpose of nursing organizations in policy advocacy, the identity of nursing organizations, the development and process of policy advocacy initiatives, the policy advocacy products of nursing organizations, and the impact and evaluation of organizations' policy advocacy work. Based on the review, we identify several research gaps and propose areas for further research to strengthen the influence and impact of this critical function undertaken by nursing organizations.

A cluster randomized controlled trial for the Evaluation of routinely Measured PATient reported outcomes in HemodialYsis care (EMPATHY): a study protocol.

BACKGROUND: Kidney failure requiring dialysis is associated with poor health outcomes and health-related quality of life (HRQL). Patient-reported outcome measures (PROMs) capture symptom burden, level of functioning and other outcomes from a patient perspective, and can support clinicians to monitor disease progression, address symptoms, and facilitate patient-centered care. While evidence suggests the use of PROMs in clinical practice can lead to improved patient experience in some settings, the impact on patients' health outcomes and experiences is not fully understood, and their cost-effectiveness in clinical settings is unknown. This study aims to fill these gaps by evaluating the effectiveness and cost-effectiveness of routinely measuring PROMs on patient-reported experience, clinical outcomes, HRQL, and healthcare utilization. METHODS: The EMPATHY trial is a pragmatic multi-centre cluster randomized controlled trial that will implement and evaluate the use of disease-specific and generic PROMs in three kidney care programs in Canada. In-centre hemodialysis units will be randomized into four groups, whereby patients: 1) complete a disease-specific PROM; 2) complete a generic PROM; 3) complete both types of PROMs; 4) receive usual care and do not complete any PROMs. While clinical care pathways are available to all hemodialysis units in the study, for the three active intervention groups, the results of the PROMs will be linked to treatment aids for clinicians and patients. The primary outcome of this study is patient-provider communication, assessed by the Communication Assessment Tool (CAT). Secondary outcomes include patient management and symptoms, use of healthcare services, and the costs of implementing this intervention will also be estimated. The present protocol fulfilled the Standard Protocol Items: Recommendations for Intervention Trials (SPIRIT) checklist. DISCUSSION: While using PROMs in clinical practice is supported by theory and rationale, and may engage patients and enhance their role in decisions regarding their care and outcomes, the best approach of their use is still uncertain. It is important to rigorously evaluate such interventions and investments to ensure they provide value for patients and health systems. TRIAL REGISTRATION: Protocol version (1.0) and trial registration data are available on www.clinicaltrials.gov , identifier: NCT03535922 , registered May 24, 2018.

Holding Secrets While Living With Life-Threatening Illness: Normalizing Patients' Decisions to Reveal or Conceal.

Communicating openly and directly about illness comes easily for some patients, whereas for others fear of disclosure keeps them silent. In this article, we discuss findings about the role of keeping secrets regarding health and illness. These findings were part of a larger project on how people with life-threatening illnesses re-story their lives. A narrative approach drawing on Frank's dialogical narrative analysis and Riesman's inductive approach was used. Interviews were conducted with 32 participants from three populations: chronic kidney disease, HIV/AIDS, and cancer. Findings include case exemplars which suggest keeping secrets is a social practice that acts along continuums of connecting-isolating, protecting-harming, and empowering-imprisoning. Keeping secrets about illness is a normative practice that is negotiated with each encounter. Findings call health-care providers to rethink the role of secrets for patients by considering patient privilege, a person's right to take the lead in revealing or concealing their health and illness experience.

Use of Electronic Patient-Reported Outcomes in the Care of Patients with Kidney Failure.

This article in the "Exploring the Evidence" series provides nephrology nurses and clinicians with a description of what electronic patient-reported outcomes (ePROs) and patient-reported outcome measures (PROMs) entail, as well as an understanding of how they can be used in nephrology patient care. Specifically highlighted are some questions and issues that clinicians have raised in our various research studies that have explored ePRO use and integration in the movement toward person-centered kidney care (Schick-Makaroff, 2017; Schick-Makaroff and Molzahn, 2014, 2015, 2017; Schick-Makaroff, Tate et al., 2019).

The role of exercise in improving patient-reported outcomes in individuals on dialysis: A scoping review.

Exercise improves objective measures of physical function in individuals on hemodialysis, but its effect on patient-reported outcomes (PROs) is largely unknown. We performed a scoping review to characterize the existing knowledge base on exercise and PROs in dialysis patients to make recommendations for future research. We searched Medline, Embase, Cochrane Database of Systematic Reviews; Cochrane Central Register of Controlled Trials, CINAHL, and SPORT Discus from inception to November 28, 2018 and then screened results for randomized controlled trials comparing aerobic/resistance exercise, or both, with no exercise in individuals on dialysis that reported results of any PRO. Of 1374 eligible studies, 25 studies met inclusion criteria. Study interventions included aerobic exercise (11 intradialytic and 3 home-based trials); intradialytic resistance exercise (seven studies) and combined aerobic and resistance exercise (six intradialytic and one facility-based trial). The PROs measured included health-related quality of life (n = 19), depression (n = 6), anxiety (n = 3), symptom burden (n = 4), sleep quality (n = 2), restless legs syndrome (n = 2), disability (n = 2), and self-reported physical activity level (n = 4). Only five studies included a PRO as a primary outcome. Studies primarily used broad/generic measures of health-related quality of life and the effect of exercise on symptoms remains relatively unexplored, particularly in peritoneal dialysis populations. Although limited, the role of exercise in improving restless legs was consistent and is a promising outcome for future study. A critical step to improving the quality of the research on this topic includes the use of validated and consistent PRO measures.

Living with dying: A narrative inquiry of people with chronic kidney disease and their family members.

AIMS: To describe how people diagnosed with chronic kidney disease and their family members describe uncertainty related to impending death. BACKGROUND: There has been little research about the experiences of people with chronic kidney disease and their family members as they near the end-of-life. We need to understand these experiences to give holistic person-centred care. DESIGN: A narrative enquiry was undertaken using a social constructionist perspective. METHODS: Data were collected in two in-depth interviews, approximately 3-4 months apart, followed by a telephone follow-up 2-3 months later. RESULTS: Eleven people with advanced chronic kidney disease and nine family members/significant others participated. For both participants in the dyad, a number of key themes/storylines were identified. These included recognition that: @life has a boundary, living on the edge, I'm not afraid to die but… and remembering loss and death experiences@. CONCLUSIONS: This enquiry illuminated four key storylines of about death and dying with advanced chronic kidney disease for people with the illness and their family members. Discussion about past experiences with illness, loss, death, and dying can give an entry for discussion about end-of-life. The person with illness and family members often held very similar perceptions and desires, but healthcare professionals' contributions to understanding of the experience were not mentioned. Implications for clinicians include attending to peoples' awareness of death as a distinct opportunity, listening attentively and posing questions that genuinely invite concerns and wishes about end-of-life and living well.

Micro-Meso-Macro Practice Tensions in Using Patient-Reported Outcome and Experience Measures in Hospital Palliative Care.

This article applies a micro-meso-macro analytical framework to understand clinicians' experiences and perspectives of using patient-reported outcome and experience measures (PROMs and PREMs) in routine hospital-based palliative care. We structure our discussion through qualitative analysis of a design and implementation project for using an electronic tablet-based tool among hospital-based palliative clinicians to assess patients' and their family caregivers' quality of life concerns and experiences of care. Our analysis identified three categories of practice tensions shaping clinicians' use of PROMs and PREMs in routine care: tensions surrounding implementation, tensions in standardization and quantification, and tensions that arose from scope of practice concerns. Our findings highlight that clinicians necessarily work within the confluence of multiple system priorities, that navigating these priorities can result in irreducible practice tensions, and that awareness of these tensions is a critical consideration when integrating PROMs and PREMs into routine practice.

Living with Chronic Kidney Disease: Illness Perceptions, Symptoms, Coping, and Quality of Life.

The purpose of this study was to explore how illness perceptions, specifically intrusiveness, impact individuals with chronic kidney disease living with dialysis therapy and kidney transplants, and to determine the relationships among illness perceptions, symptoms, coping, and quality of life (QoL). Forty-two individuals on dialysis and with renal transplants completed an online survey. We found strong relationships between illness intrusiveness, symptom scores, and QoL. Illness intrusiveness was highly disruptive to one's financial situation, health, and work. Intrusiveness was also significantly related to individual symptoms, especially tiredness, feelings of well-being, and sleep. Correlations between intrusiveness and QoL were significant. Emotion-focused coping strategies were also significantly associated with intrusiveness. Health professionals can target illness perceptions, symptom burden, and coping strategies to enhance QoL.

Symptoms, Coping, and Quality of Life of People with Chronic Kidney Disease.

The purpose of this study was to explore how symptoms affect quality of life (QOL) for people living with chronic kidney disease (CKD) and kidney transplants, and to determine the relationship among various coping styles, symptoms, and QOL. An online survey was conducted; 42 people with CKD or a kidney transplant completed all parts of the survey. We found strong significant relationships between symptoms and QOL ratings. Problem-focused coping strategies were the most frequently employed, but there were few significant relationships between symptoms and coping, or between problem focused coping strategies and QOL. Future research should explore whether interventions to address emotion-focused coping strategies impact QOL as well as symptom burden.

Evaluation of real-time use of electronic patient-reported outcome data by nurses with patients in home dialysis clinics.

BACKGROUND: Internationally, the use of patient-reported outcomes (PROs) is increasing. Electronic PROs (ePROs) offer immediate access of such reports to healthcare providers. The objectives of this study were to assess nurses' perspectives on the usefulness and impact of ePRO administration in home dialysis clinics and assess patient perceptions of satisfaction with nursing care following use of ePROs. METHODS: A concurrent, longitudinal, mixed methods study was conducted over 6 months during home dialysis outpatient clinic visits in two cities. Patients (n = 99) provided ePROs using tablet computers when they visited the clinic on two consecutive occasions approximately 3 months apart. Results were scored, printed, and given to nurses before patient appointments. Patients completed satisfaction items from the Comox Valley Nursing Centre Client questionnaire following their appointments. All clinic nurses (n = 11) participated and they were each interviewed twice, three months and six months after the start of the study. RESULTS: The five themes that emerged from the interviews with the nurses include: enhancing focus of the nurses, directing interdisciplinary follow-up, offering support to patients through the process, interpreting results from the visual display, and integrating into workflow. Scores on the Client Questionnaire suggested that patients believed that they received excellent care (97%), and that the nurses perfectly understood their needs (90.9%). However, their satisfaction with care did not change over time when ePRO data was repeatedly provided to their nurses. CONCLUSIONS: Nurses reported that sharing ePRO data in real-time informed their practice. Although there was no statistically significant change in patient satisfaction scores over time, some patients reported changes and benefits from the use of ePROs. Further research is needed to provide guidance about how ePRO data could enhance person-centered care.

Patient and Caregiver Priorities for Outcomes in Hemodialysis: An International Nominal Group Technique Study.

BACKGROUND: In the context of clinical research, investigators have historically selected the outcomes that they consider to be important, but these are often discordant with patients' priorities. Efforts to define and report patient-centered outcomes are gaining momentum, though little work has been done in nephrology. We aimed to identify patient and caregiver priorities for outcomes in hemodialysis. STUDY DESIGN: Nominal group technique. SETTING & PARTICIPANTS: Patients on hemodialysis therapy and their caregivers were purposively sampled from 4 dialysis units in Australia (Sydney and Melbourne) and 7 dialysis units in Canada (Calgary). METHODOLOGY: Identification and ranking of outcomes. ANALYTICAL APPROACH: Mean rank score (of 10) for top 10 outcomes and thematic analysis. RESULTS: 82 participants (58 patients, 24 caregivers) aged 24 to 87 (mean, 58.4) years in 12 nominal groups identified 68 outcomes. The 10 top-ranked outcomes were fatigue/energy (mean rank score, 4.5), survival (defined by patients as resilience and coping; 3.7), ability to travel (3.6), dialysis-free time (3.3), impact on family (3.2), ability to work (2.5), sleep (2.3), anxiety/stress (2.1), decrease in blood pressure (2.0), and lack of appetite/taste (1.9). Mortality ranked only 14th and was not regarded as the complement of survival. Caregivers ranked mortality, anxiety, and depression higher than patients, whereas patients ranked ability to work higher. Four themes underpinned their rankings: living well, ability to control outcomes, tangible and experiential relevance, and severity and intrusiveness. LIMITATIONS: Only English-speaking participants were eligible. CONCLUSIONS: Although trials in hemodialysis have typically focused on outcomes such as death, adverse events, and biological markers, patients tend to prioritize outcomes that are more relevant to their daily living and well-being. Researchers need to consider interventions that are likely to improve these outcomes and measure and report patient-relevant outcomes in trials, and clinicians may become more patient-orientated by using these outcomes in their clinical encounters.

Strategies to use tablet computers for collection of electronic patient-reported outcomes.

BACKGROUND: Mobile devices are increasingly being used for data collection in research. However, many researchers do not have experience in collecting data electronically. Hence, the purpose of this short report was to identify issues that emerged in a study that incorporated electronic capture of patient-reported outcomes in clinical settings, and strategies used to address the issues. FINDINGS: The issues pertaining to electronic patient-reported outcome data collection were captured qualitatively during a study on use of electronic patient-reported outcomes in two home dialysis units. Fifty-six patients completed three surveys on tablet computers, including the Kidney Disease Quality of Life-36, the Edmonton Symptom Assessment Scale, and a satisfaction measure. Issues that arose throughout the research process were recorded during ethics reviews, implementation process, and data collection. Four core issues emerged including logistics of technology, security, institutional and financial support, and electronic design. CONCLUSIONS: Although use of mobile devices for data collection has many benefits, it also poses new challenges for researchers. Advance consideration of possible issues that emerge in the process, and strategies that can help address these issues, may prevent disruption and enhance validity of findings.

Self- and Proxy-Completion of Quality of Life Assessment in Dementia Care: A Review of Reviews.

Background and Purpose: Quality of life (QOL) assessment invites the perspectives of people living with dementia to be shared with family caregivers and healthcare providers. A review of reviews was conducted to describe synthesized evidence (i.e., from other reviews) regarding self- and proxy-reports of QOL for this population. Methods: Searches were conducted in four databases. The 25 included articles addressed self- or proxy-rated patient-reported outcome measures, focused on any type of dementia, and were a review or synthesis published in English. Results: Individuals with dementia are largely able to self-report QOL. Proxy-reports are incongruent with self-reports due to various factors, including the proxy-patient relationship and perspective of measurement. Conclusion: When assessing QOL for people with dementia, self-reports are preferred to proxy-reports; however, a combination is recommended.