Rethinking the transfusion pathway in myelodysplastic syndromes: Study protocol for a novel randomized feasibility n-of-1 trial of weekly-interval red cell transfusion in myelodysplastic syndromes.

BACKGROUND: Anemia in myelodysplastic syndromes (MDS) is associated with poorer health-related quality of life (HRQoL) and physical function, and is frequently treated with transfusions. The current common practice of transfusing multiple red blood cells (RBC) units every 2-4 weeks may result in peaks/troughs in hemoglobin (Hb) level, yet maintaining a stable Hb may better improve HRQoL. We describe a study protocol aiming to investigate the feasibility of weekly low-dose RBC transfusion in MDS patients, including assessing HRQoL and physical function outcomes. STUDY DESIGN AND METHODS: In this n-of-1 pilot study, patients receive two treatment arms, with randomly allocated treatment sequence: arm A (patient's usual transfusion schedule) and arm B (weekly transfusion, individualized per patient). To facilitate timely delivery of weekly transfusion, extended-matched RBCs are provided, with transfusion based upon the previous week's Hb/pre-transfusion testing results to eliminate delays of awaiting contemporaneous cross-matching. Primary outcome is the feasibility of delivering weekly transfusion. Secondary outcomes include HRQoL, functional activity measurements, RBC usage, and alloimmunization rates. A qualitative substudy explores patient and staff experiences. RESULTS: The trial is open in Australia, Netherlands, and UK. The first patient was recruited in 2020. Inter-country differences in providing RBCs are observed, including patient genotyping versus serological phenotyping to select compatible units. DISCUSSION: This pilot trial evaluates a novel personalized transfusion approach of weekly matched RBC transfusion and challenges the dogma of current routine pre-transfusion matching practice. Findings on study feasibility, HRQoL, and physical functional outcomes and the qualitative substudy will inform the design of a larger definitive trial powered for clinical outcomes.

Barriers and enablers of active surveillance for prostate cancer: a qualitive study of clinicians.

OBJECTIVES: To identify and explore barriers to, and enablers of, active surveillance (AS) in men with low-risk prostate cancer (LRPCa), as perceived by PCa clinicians. PATIENTS AND METHODS: Urologists and radiation oncologists in Australia and New Zealand were purposively sampled for a cross-section on gender and practice setting (metropolitan/regional; public/private). Using a grounded theory approach, semi-structed interviews were conducted with participants. Interviews were coded independently by two researchers using open, axial, and selective coding. A constant comparative approach was used to analyse data as it was collected. Thematic saturation was reached after 18 interviews, and a detailed model of barriers to, and enablers of, AS for LRPCa, as perceived by clinicians was developed. RESULTS: A model explaining what affects clinician decision making regarding AS in LRPCa emerged. It was underpinned by three broad themes: (i) clinician perception of patients' barriers and enablers; (ii) clinician perception of their own barriers and enablers; and (iii) engagement with healthcare team and resource availability. CONCLUSIONS: Clinicians unanimously agree that AS is an evidence-based approach for managing LRPCa. Despite this many men do not undergo AS for LRPCa, which is due to the interplay of patient and clinician factors, and their interaction with the wider healthcare system. This study identifies strategies to mitigate barriers and enhance enablers, which could increase access to AS by patients with LRPCa.

Impact of work and coping factors on mental health: Australian truck drivers' perspective.

INTRODUCTION: Truck driving is one of the most common male occupations worldwide. Drivers endure long working hours, isolation, separation from family, compromised sleep, and face rigid regulatory requirements. Studies have documented the work factors contributing to poor health outcomes, however these have not been explored in the Australian context. The aim of this grounded theory study was to explore the impact of work and coping factors on mental health of Australian truck drivers from their perspective. METHODS: Recruitment used a purposive snowball sampling, through social media campaigns and direct email invites. Interview data were collected via phone/teleconference, audio recorded and typed verbatim. Inductive coding and thematic analysis were completed with triangulation of themes. RESULTS: Seventeen interviews were completed (94% male). Six themes arose, two supporting (Connections; Coping methods), and four disrupting mental health (Compromised supports; Unrealistic demands; Financial pressures; Lack of respect). Drivers had concerns regarding the many things beyond their control and the interactions of themes impacting their health even further. CONCLUSION: This study explored the impact of work and coping factors affecting truck driver mental health in Australia. Themes described the importance of connections and coping methods drivers had to support their health. Many factors that compromised their health were often outside their control. These results highlight the need for a multi-faceted collaboration between stakeholders; the driver, employing companies, policy makers/regulators and the public to address the negative impact of truck driving on mental health.

Exploring the Health and Economic Burden Among Truck Drivers in Australia: A Health Economic Modelling Study.

Background The transport and logistics industry contributes to a significant proportion of the Australian economy. However, few studies have explored the economic and clinical burden attributed to poor truck driver health. We therefore estimated the work-related mortality burden among truck drivers over a 10-year period. Methods Dynamic life table modelling was used to simulate the follow-up of the Australian male working-age population (aged 15-65 years) over a 10-year period of follow-up (2021-2030). The model estimated the number of deaths occurring among the Australian working population, as well as deaths occurring for male truck drivers. Data from the Driving Health study and other published sources were used to inform work-related mortality and associated productivity loss, hospitalisations and medication costs, patient utilities and the value of statistical life year (VoSLY). All outcomes were discounted by 5% per annum. Results Over 10 years, poor truck driver health was associated with a loss of 21,173 years of life lived (discounted), or 18,294 QALYs (discounted). Healthcare costs amounted to AU$485 million (discounted) over this period. From a broader, societal perspective, a total cost of AU$2.6 billion (discounted) in lost productivity and AU$4.7 billion in lost years of life was estimated over a 10-year period. Scenario analyses supported the robustness of our findings. Conclusions The health and economic consequences of poor driver health are significant, and highlight the need for interventions to reduce the burden of work-related injury or disease for truck drivers and other transport workers.

A Gentle Introduction to Bayesian Network Meta-Analysis Using an Automated R Package.

Network meta-analysis is an extension of standard meta-analysis. It allows researchers to build a network of evidence to compare multiple interventions that may have not been compared directly in existing publications. With a Bayesian approach, network meta-analysis can be used to obtain a posterior probability distribution of all the relative treatment effects, which allows for the estimation of relative treatment effects to quantify the uncertainty of parameter estimates, and to rank all the treatments in the network. Ranking treatments using both direct and indirect evidence can provide guidance to policy makers and clinicians for making decisions. The purpose of this paper is to introduce fundamental concepts of Bayesian network meta-analysis (BNMA) to researchers in psychology and social sciences. We discuss several essential concepts of BNMA, including the assumptions of homogeneity and consistency, the fixed and random effects models, prior specification, and model fit evaluation strategies, while pointing out some issues and areas where researchers should use caution in the application of BNMA. Additionally, using an automated R package, we provide a step-by-step demonstration on how to conduct and report the findings of BNMA with a real dataset of psychological interventions extracted from PubMed.

The physical and mental health of Australian truck drivers: a national cross-sectional study.

BACKGROUND: The negative health consequences of truck driving are well documented. However, despite the distinct occupational challenges between long- and short-haul driving, limited research has been conducted on how the health profile of these drivers differ. The aims of this study were to characterise the physical and mental health of Australian truck drivers overall, and to identify any differences in factors influencing the health profile of long-haul compared to short-haul drivers. DESIGN, SETTING, AND PARTICIPANTS: In this cross-sectional study, 1390 Australian truck drivers completed an online survey between August 2019 and May 2020. Questions included validated measures of psychological distress, general health, work ability and health-related quality-of-life. Participants driving 500 km or more per day were categorised as long-haul and those driving less than 500 km as short-haul. RESULTS: The majority of survey respondents were classified as either overweight (25.2%) or obese (54.3%). Three in ten reported three or more chronic health conditions (29.5%) and poor general health (29.9%). The most commonly diagnosed conditions were back problems (34.5%), high blood pressure (25.8%) and mental health problems (19.4%). Chronic pain was reported by 44% of drivers. Half of drivers reported low levels of psychological distress (50.0%), whereas 13.3 and 36.7% experienced severe or moderate level of psychological distress respectively. There were a small number of differences between the health of long- and short-haul drivers. A higher proportion of short-haul drivers reported severe psychological distress compared to long-haul drivers (15.2% vs 10.4%, χ2 = 8.8, 0.012). Long-haul drivers were more likely to be obese (63.0% vs 50.9%, χ2 = 19.8, < 0.001) and report pain lasting over a year (40.0% vs 31.5%, χ2 = 12.3, 0.006). Having more than one diagnosed chronic condition was associated with poor mental and physical health outcomes in both long- and short-haul drivers. CONCLUSION: Australian truck drivers report a high prevalence of multiple physical and mental health problems. Strategies focused on improving diet, exercise and preventing chronic conditions and psychological distress, that can also be implemented within the unique occupational environment of trucking are needed to help improve driver health. Further research is needed to explore risk and protective factors that specifically affect health in both short-haul and long-haul drivers.

Effect of cannabis on opioid use in patients with cancer receiving palliative care.

OBJECTIVE: Opioids are the primary therapy for cancer-related pain in patients receiving palliative care. More states are legalizing medical cannabis, which may provide a pain management alternative for some of these patients. This study aimed to estimate the effect of cannabis on opioid use in patients with cancer receiving palliative care. METHODS: This was a retrospective cohort study of patients with cancer at an academic medical center palliative care clinic. The primary outcome was change in morphine equivalent daily dose (MEDD) from baseline to 84-day follow-up in the cannabis plus opioid group compared to that in the opioid-only group. RESULTS: A total of 83 patients were included: 61 in the opioid monotherapy group and 22 in the cannabis plus opioid group. An increase in MEDD from the baseline to 84 days was seen in both the opioid monotherapy and opioid plus cannabis group (28.8 vs. 10.8); however, the study lacked power to detect a statistical difference. CONCLUSION: A possibly meaningful difference in MEDD increase was seen when comparing the opioid monotherapy group with the opioid plus cannabis group. However, the study was not powered to test this hypothesis; the findings suggest that further research is warranted to determine the impact of cannabis use on opioid dosing in patients receiving palliative care for cancer.

Outcomes after occupational therapy intervention for traumatic brachial plexus injury: A prospective longitudinal cohort study.

STUDY DESIGN: Prospective longitudinal cohort study. INTRODUCTION: Traumatic brachial plexus injuries (BPIs) can be devastating and negatively impact daily function and quality of life. Occupational therapists play an important role in rehabilitation; however, studies identifying outcomes are lacking. PURPOSE: This study aims to describe outcomes including motor recovery, upper limb function, participation, pain, and quality of life for people receiving occupational therapy intervention. METHODS: A convenience sample of English-speaking adults (n = 30) with a traumatic BPI, attending the clinic between December 1, 2014, to November 30, 2016, participated. Participants received occupational therapy focusing on sensorimotor retraining and activity-based rehabilitation. Data on active range of motion (goniometry), strength (Medical Research Council (MRC)), upper-limb function (UEFI15, QuickDASH), participation (PSFS), pain (Brief Pain Inventory), and quality of life (EQ-5D-3L) were collected at baseline, 3, 6, 9, and 12 months. RESULTS: Elbow flexion strength showed significant improvement at all time-points, average increase 2.17 (MRC) (95% confidence interval: 1.29-3.04; P < .001) and mean final MRC grading 3.86 (standard error: 0.44). Significant improvements at 12 months were seen in: shoulder abduction strength and range, flexion strength and range, external rotation range; elbow extension strength and flexion range; thumb flexion and extension strength. Upper limb function (QuickDASH) showed significant improvement (mean change = 18.85; 95% confidence interval: 4.12-33.59; P = .02). Forearm protonation range and finger flexion strength were significantly worse. Remaining outcomes did not show significant improvement. CONCLUSIONS: Occupational therapy with surgical intervention can improve strength, range, and upper limb function with people following traumatic BPI. Further investigations into impact on participation, pain, and quality of life are required.

Single-center, retrospective evaluation of safety and efficacy of direct oral anticoagulants versus low-molecular-weight heparin and vitamin K antagonist in patients with cancer.

INTRODUCTION: The safety and efficacy of direct oral anticoagulants in cancer patients is currently unclear. Low-molecular-weight heparin remains the standard of care for cancer patients with venous thromboembolism, with warfarin, a vitamin K antagonist, as an alternative. Clear recommendations do not exist for patients with both active cancer and non-valvular atrial fibrillation. The objectives of this study were to report safety and efficacy outcomes of direct oral anticoagulants, low-molecular-weight heparin, and vitamin K antagonist in cancer patients with venous thromboembolism or non-valvular atrial fibrillation. METHODS: Retrospective chart review of adult cancer patients from 2012 to 2015 who received an antineoplastic agent and an anticoagulant. RESULTS: A total of 258 patients were reviewed: 80 patients in direct oral anticoagulant group, 95 patients in low-molecular-weight heparin group, and 83 patients in vitamin K antagonist group. Sixty-seven percent of patients were on an anticoagulant for acute or chronic venous thromboembolism. Major bleeding events were similar across the groups (15% direct oral anticoagulant vs 17% low-molecular-weight heparin vs 18% vitamin K antagonist). The most common type of major bleeding event was gastrointestinal bleeding. A total of five fatal bleeding events occurred. Venous thromboembolism recurrence rates were higher in both direct oral anticoagulant (18%) and low-molecular-weight heparin (12%) groups while lower in vitamin K antagonist group (10%) compared to previous studies. CONCLUSIONS: Cancer patients receiving direct oral anticoagulants, low-molecular-weight heparin, or vitamin K antagonist had similar rates of major bleeding events, with gastrointestinal bleeding being the most common event. Venous thromboembolism recurrence rates were higher in direct oral anticoagulant and low-molecular-weight heparin groups than prior studies. Randomized trials are warranted to establish clear safety and efficacy in this population.

Breast Cancer Risk Reduction, Version 2.2015.

Breast cancer is the most frequently diagnosed malignancy in women in the United States and is second only to lung cancer as a cause of cancer death. To assist women who are at increased risk of developing breast cancer and their physicians in the application of individualized strategies to reduce breast cancer risk, NCCN has developed these guidelines for breast cancer risk reduction.

Exploring the association between volition and participation in daily life activities with older adults living in the community.

OBJECTIVE: To explore the association between volition and participation in daily activities with older adults living in the community. DESIGN: Cross-sectional study. SETTING: Community-dwelling, residing in Victoria (Australia). PARTICIPANTS: A total of 244 adults, of 70 years and older, drawn from a convenience sample, living in their own homes. MAIN MEASURES: Individuals' participation in daily activities was obtained via phone interviews, from the completion of the Phone-FITT survey. Levels of volition (identified under three items; personal causation, values and interests) were collected using the Volition Scale. Analyses were completed through linear regression. RESULTS: The participants' mean age was 77.5 years (SD 5.7) with 60% being female. Higher levels of participation were associated with higher levels of volition in light housework (n = 225, p = 0.008), shopping (n = 239, p = 0.018), lifting weights to strengthen legs (n = 23, p = 0.031), walking for exercise (n = 163, p < 0.001) and gardening (n = 183, p = 0.001). CONCLUSIONS: Increased volition is associated with increased participation in physical activities with community-dwelling older adults.

'You're part of something bigger': interpersonal relationships and older Canadian men's body image.

OBJECTIVE: We examined older men's body image, with a focus on the role of interpersonal relationships in shaping their psychological adaptation to age-related body changes to appearance, function, and health. DESIGN: Qualitative narrative constructionist study. MAIN OUTCOME MEASURES: We conducted semi-structured interviews with 29 men aged 65-83. Data were analysed using thematic narrative analysis; we identified and interpreted patterns in and across the men's stories about their aging bodies. RESULTS: Narratives of purpose through meaningful engagement and belonging through connection permeated the men's accounts. Participants mitigated body-related changes and challenges through pleasurable physical, leisure, and community activities. They derived purpose from these activities as they kept them physically, cognitively, and socially engaged and thus relevant with advancing age, particularly post retirement. The men derived a sense of belonging through social connections. Relationships with family, friends, and community members shaped their capacity for meaningful engagement and associated psychological adjustment to age-related body changes. CONCLUSION: The findings point to the imperative need to consider how men negotiate their constantly changing, aging bodies within the context of interpersonal relationships, and highlight the role that later life belonging and purpose play in shaping how men experience their bodies as they grow older.

Factors Associated with Fatigued Driving among Australian Truck Drivers: A Cross-Sectional Study.

BACKGROUND: Fatigued driving is one of the leading factors contributing to road crashes in the trucking industry. The nature of trucking, prolonged working time, and irregular sleep patterns can negatively impact drivers' health and wellbeing. However, there is limited research in Australia investigating the impact of demographic, occupational, or lifestyle factors on fatigue among truck drivers. OBJECTIVE: This cross-sectional study examines the role of demographic, occupational, lifestyle, and other health risk factors associated with fatigue among Australian truck drivers. METHOD: This study was part of a larger study that used a short online survey with a follow-up telephone survey to capture in-depth information on a wide range of determinants related to truck drivers' physical and mental health outcomes. Fatigue was measured by three questions, including the frequency of fatigue, fatigue management training, and strategies used to combat fatigue. Multivariate regression analysis was used to determine the specific impact of demographics, occupational factors, lifestyle factors, and other health risk factors on fatigue. RESULTS: In total, 332 drivers completed both the online and telephone surveys; 97% were male, representing drivers from broad age groups and professional experience. The odds of being in the high-risk fatigue group were nearly three times higher in drivers who worked 40-60 h compared to those who worked < 40 h. Poor sleep increased the odds of high-risk fatigue by seventimes (95% CI: 2.26-21.67, p = 0.001). Drivers who reported experiencing loneliness also had double the odds of being at high risk of fatigued driving. CONCLUSIONS: The increased risk of fatigue in truck drivers is associated with prolonged working hours, poor sleep, and social aspects such as loneliness. Further interventions seeking to reduce driver fatigue should consider the impact of work schedules, the availability of quality sleeping spaces, and the level of social connections.

Carer-reported measures for a dementia registry: A systematic scoping review and a qualitative study.

OBJECTIVES: Informal carers play a critical role in supporting people with dementia. We conducted a scoping review and a qualitative study to inform the identification and development of carer-reported measures for a dementia clinical quality registry. METHODS: Phase 1-Scoping review: Searches to identify carer-reported health and well-being measures were conducted in three databases (MEDLINE, PsycINFO and Embase). Data were extracted to record how the measures were administered, the domains of quality-of-life addressed and whether they had been used in a registry context. Phase 2-Qualitative study: Four focus groups were conducted with carers to examine the acceptability of selected measures and to identify outcomes that were important but missing from these measures. RESULTS: Phase 1: Ninety-nine carer measures were identified with the top four being the Zarit Burden Interview (n = 39), the Short-Form12/36 (n = 14), the Brief Coping Orientation to Problems Experienced scale and the Sense of Coherence scale (both n = 9). Modes of administration included face-to-face (n = 50), postal (n = 11), telephone (n = 8) and online (n = 5). No measure had been used in a registry context. Phase 2: Carers preferred brief measures that included both outcome and experience questions, reflected changes in carers' circumstances and included open-ended questions. CONCLUSIONS: Carer-reported measures for a dementia clinical quality registry need to include both outcome and experience questions to capture carers' perceptions of the process and outcomes of care and services. Existing carer-reported measures have not been used in a dementia registry context and adaption and further research are required.

Modern Active Surveillance in Prostate Cancer: A Narrative Review.

The use of PSA screening has led to downstaging and downgrading of prostate cancer at diagnosis, increasing detection of indolent disease. Active surveillance aims to reduce over-treatment by delaying or avoiding radical treatment and its associated morbidity. However, there is not a consensus on the selection criteria and monitoring schedules that should be used. This article aims to summarize the evidence supporting the safety of active surveillance, the current selection criteria recommended and in use, the incidence of active surveillance, barriers existing to its uptake and future developments in patient selection.

The effect of weight loss interventions in truck drivers: Systematic review.

INTRODUCTION: Truck driving is the most common vocation among males internationally with a high proportion overweight/obese due to a combination of work and lifestyle factors leading to health complications. With limited studies in this area, this systematic review aimed to identify and describe interventions addressing weight reduction in truck drivers. METHODS: Five electronic databases were searched, January 2000 to June 2020 (CINAHL, Cochrane Library, Embase, Ovid MEDLINE, Scopus). Inclusion criteria: experimental primary studies, long-distance (≥500 kms) truck drivers, peer reviewed publications in English. Weight loss interventions included physical activity, diet, behavioral therapy, or health promotion/education programs. Exclusions: non-interventional studies, medications or surgical interventions. Two independent researchers completed screening, risk of bias (RoB) and data extraction with discrepancies managed by a third. Study descriptors, intervention details and outcomes were extracted. RESULTS: Seven studies (two RCTs, five non-RCTs,) from three countries were included. Six provided either counselling/coaching or motivational interviewing in combination with other components e.g. written resources, online training, provision of exercise equipment. Four studies demonstrated significant effects with a combined approach, however, three had small sample sizes (<29). The effect sizes for 5/7 studies were medium to large size (5/7 studies), indicating likely clinical significance. RoB assessment revealed some concerns (RCTs), and for non-RCTs; one moderate, two serious and two with critical concerns. Based on the small number of RCTs and the biases they contain, the overall level of evidence in this topic is weak. CONCLUSION: Interventions that include a combination of coaching and other resources may provide successful weight reduction for truck drivers and holds clinical significance in guiding the development of future interventions in this industry. However, additional trials across varied contexts with larger sample populations are needed.

Acquired Brain Injury in the Context of Family Violence: A Systematic Scoping Review of Incidence, Prevalence, and Contributing Factors.

Brain injury is often a precursor to, or result of, family violence. Yet there is little research identifying the connection of these two phenomena. The health cost (personal or societal) of brain injury within the family violence context is difficult to ascertain. Family violence can lead to lifelong psychological or physical scars and even death. A systematic review was conducted over three databases using Medical Subject Heading terms to investigate incidence, prevalence, and contributing factors of brain injury within a family violence context. Inclusion criteria were primary studies, any person who experienced traumatic brain injury in a familial context. Seven hundred and seven studies of varied designs were initially identified with 43 meeting inclusion criteria. Data were extracted and a deductive narrative synthesis was performed. The accuracy and generalizability of incidence and prevalence statistics was hindered by underreporting of family violence and the specificity of some of the population groups (e.g., female inmates). The factors contributing to brain injury within the family violence context had multifactorial causation and varied greatly across the populations studied. Five social determinants of health were identified: biological, behavioral, structural, social, and environmental. These factors included age and gender of parent/baby, crying as an antecedent of family violence, previous exposure to abuse as a child, hostile living environments, previous trauma, financial pressures, employment status, housing availability, and exposure to natural disasters. Future investigation into the nexus between brain injury and family violence is required; however, this is complicated due to global inconsistency of definitions, assessment tools, and research methods used.

Volunteer Programs Supporting People With Dementia/Delirium in Hospital: Systematic Review and Meta-Analysis.

BACKGROUND AND OBJECTIVES: Volunteer-delivered programs to assist people with dementia and/or delirium in-hospital can provide person-centered one-on-one support in addition to usual care. These programs could mitigate hospital resource demands; however, their effectiveness is unknown. This review evaluated literature of volunteer programs in acute hospital settings for people living with dementia and/or delirium. RESEARCH DESIGN AND METHODS: Four databases were searched. Studies that reported patient or program outcomes were included (i.e., delirium incidence, length of stay, number of falls, satisfaction). Risk of bias was completed. Meta-analysis was performed where 2 or more studies measured the same outcome. Narrative synthesis was performed on the qualitative results. RESULTS: Eleven studies were included in the review, with varied design, participant groups and outcomes measured. Risk of bias averaged 71%. Volunteer-delivered programs addressed delirium risk factors, for example, hydration/nutrition, mobility, use of sensory aids. Eight patients and 6 program outcomes were captured, but only 3 patient outcomes could be pooled. Meta-analyses demonstrated a reduction in delirium incidence (rate ratio = 0.65; 95% confidence interval [CI] 0.47, 0.90) but no reduction in length of stay (mean difference -1.09; 95% CI -0.58, 2.77) or number of falls (rate ratio = 0.67; 95% CI 0.19, 2.35). Narrative synthesis identified benefits to patients (e.g., less loneliness), volunteers (sense of meaning), and staff (timesaving, safety). DISCUSSION AND IMPLICATIONS: Volunteer-delivered programs for inpatients with dementia and/or delirium may provide benefits for patients, volunteers, and staff. However, studies conducted with more robust designs are required to determine overall effectiveness on program outcomes. Further high-quality research appropriate for this vulnerable population is required to identify volunteer program effectiveness.

Patient-Reported Outcome Measures to Inform Care of People With Dementia-A Systematic Scoping Review.

BACKGROUND AND OBJECTIVES: Patient-reported outcome measures (PROMs) captures the patient's perspective regarding quality of life, daily functioning, symptom severity, and overall health, and how these may be impacted by health care or other interventions. PROMs are used in clinical quality registries (CQRs) for a number of diseases to assess the patient's perspective of the impact of clinical care on quality-of-life. This scoping review aimed to identify dementia-specific PROMs, determine how the PROMs are being used, and whether they are used within dementia registries. RESEARCH DESIGN AND METHODS: Three electronic databases were searched using Medical Subject Heading terms for dementia, quality of life, and patient-reported outcomes. Data were extracted on the PROMs used and the methods and mode of administering the PROM. RESULTS: Seven dementia-specific PROMs were identified, however none were used in a dementia registry. All the PROMs were used at the patient level to identify patient needs and health service impacts. Three PROMs were also used at a system level to examine difference in care models. The majority of the PROMs were administered via a researcher or clinician and were predominantly completed by a proxy. DISCUSSION AND IMPLICATIONS: PROMs provide an opportunity for a patient with dementia to share experiences and perspectives of care. A number of dementia-specific PROMs exist, yet none are used in dementia registries and the majority of studies utilize PROMs via a proxy. The use of PROM for patients with dementia, particularly in the context of dementia registries, requires further exploration and consideration.