ORCID Profile
0000-0002-5514-5886
Current Organisations
Children's Hospital at Westmead
,
Macquarie University
,
Sax Institute
,
University of Sydney School of Public Health
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Publications
Changing attitudes towards management of men with locally advanced prostate cancer following radical prostatectomy: A follow-up survey of Australia-based urologists
Publisher: Wiley
Date: 27-06-2016
Abstract: This study examined whether there has been change among Australia-based urologists' knowledge, attitudes and beliefs relating to guideline-recommended adjuvant radiotherapy for men with adverse pathologic features following radical prostatectomy since a prior survey in 2012 and investigated associations between attitudes and treatment preferences. A nationwide survey of Australia-based urologist members of the Urological Society of Australia and New Zealand. Ninety-six respondents completed the 2015 survey (30% response rate) compared with 157 (45% response rate) in 2012. There was no significant change in awareness of national clinical practice guidelines for the management of prostate cancer. When considering adjuvant against salvage radiotherapy, urologists were significantly less favourable towards adjuvant radiotherapy in 2015 than in 2012 for two of three hypothetical clinical case scenarios with a high 10-year risk of biochemical relapse according to Memorial Sloan Kettering Cancer Center nomograms (P < 0.001 for both cases). In 2015, urologists were less positive overall towards the recommendation for post-operative adjuvant radiotherapy for men with locally advanced prostate cancer than in 2012 (P < 0.001), reflecting a significant change across a number of attitudes and beliefs. Of note, urologists felt other urologists would more likely be critical if they routinely referred the target patient group for radiotherapy in 2015 compared with 2012 (P = 0.007). In 2015 Australia-based urologists were less favourable towards adjuvant radiotherapy over watchful waiting for men with high-risk pathologic features post-prostatectomy than in 2012. We could find no new published research that precipitated this change in attitude.
A multidisciplinary team-oriented intervention to increase guideline recommended care for high-risk prostate cancer: A stepped-wedge cluster randomised implementation trial
Publisher: Springer Science and Business Media LLC
Date: 12-03-2018
Equity in national policies for Australians with kidney disease
Publisher: Elsevier BV
Date: 08-2021
Young adults' experiences of their parents caring for a relative with dementia
Publisher: Wiley
Date: 26-08-2015
DOI: 10.1111/GGI.12559
Abstract: The aim of the present study was to explore the experiences and perceptions young adults had of family members who are caring for a relative with dementia. An exploratory qualitative study with semi-structured interviews was carried out and data were collected from 24 young adults recruited through purposive s ling. The participants had to have a close relative who was caring for an elderly family member with dementia. A content analysis approach was used for the verbatim transcription. The findings showed that caring for a relative with dementia was perceived as a time-consuming, exhausting and long-term task. The participants experienced stress and strain, although they were not the primary caregivers. Despite their negative perceptions of the task, they were willing to take on the responsibility of becoming a primary caregiver in the future. However, they intended to seek assistance in meeting their caregiving roles and responsibilities. Seeing how their close relative cared for a dependent older adult led them to reflect on what they would become in the future. Interestingly, although the participants expected their future offspring to take care of them when they became old, they did not want to be a burden to their children. Young adults are the caregivers of tomorrow. Knowing their perspective on caregiving is important if health professionals are to help them evolve into a caregiving role. It has implications for realizing the goal of aging in place. Geriatr Gerontol Int 2016 16: 873-879.
Patients’ Perspectives, Factors, and Patterns of eHealth Use in Kidney Transplant Recipients
Publisher: Elsevier BV
Date: 04-2023
Clinician-led improvement in cancer care (CLICC) - testing a multifaceted implementation strategy to increase evidence-based prostate cancer care: Phased randomised controlled trial - study protocol
Publisher: Springer Science and Business Media LLC
Date: 29-05-2014
The new pariahs: discourse on the tobacco industry in the Sydney press, 1993-97
Publisher: Elsevier BV
Date: 06-1999
DOI: 10.1111/J.1467-842X.1999.TB01248.X
Abstract: To review the principal sub-texts contained in all press coverage and references to the tobacco industry in a major Sydney newspaper over five years. After excluding value-neutral financial page reports, thematic analysis of all value-laden references to the tobacco industry in the Sydney Morning Herald, January 1993 to December 1997. Some 155 articles containing 221 separate references to the tobacco industry were identified. Eight sub-texts (callous merchants of death conspiracy/cover-up blood money toxic pied pipers corporate leviathans beleaguered/legitimate industry index case of unethical or corrupt practice and bumbling fools) accounted for all 221 references. Eighty-nine per cent of references to the industry framed it negatively. Journalists or regular newspaper columnists authored 56% of the references. Only 5% of comments were attributed to tobacco company sources. In press reports, the tobacco industry is routinely framed as a corporate pariah by journalists, the public, government spokespeople and tobacco control advocates. Routine negative publicity about the tobacco industry is likely to significantly reduce its public credibility and political influence.
Progressive increase in thyroid dysfunction after subtotal thyroidectomy for Graves' disease
Publisher: Springer Science and Business Media LLC
Date: 2000
What are the reasons for clinical network success? A qualitative study
Publisher: Springer Science and Business Media LLC
Date: 06-2015
Strategies to increase shade in public playgrounds: A realist review
Publisher: The Sax Institute
Date: 12-2022
DOI: 10.57022/SSDY7898
Abstract: Australia has one of the highest skin cancer incidences globally. Quality shade, which is a well-designed and correctly positioned combination of natural and built shade, can reduce solar ultraviolet radiation exposure by up to 75%. Existing shade in playgrounds in NSW was benchmarked in 2020-2021 this demonstrated a clear need for improvements to be made. This realist review sought to find evidence of shade targets and other complex strategies to increase shade in playgrounds. Fifty-nine documents (31 peer reviewed and 28 grey literature) contributed data to address the evidence review questions. Twenty-five ex les of strategies, with a description of their implementation and/or reporting of outcomes, used to increase shade in playgrounds were located. Six types of strategies were identified: policies, guidelines and recommendations settings-based site audits and site plans city-level tree and shade site masterplan monetary incentives targets and other metrics and multi-component interventions. For the strategies themselves, the review found evidence of intermediate changes such as the adoption of the strategy, but a lack of evidence of strategies leading to increased shade in playgrounds. Five enablers, five barriers and one barrier/enabler to the implementation of strategies to increase shade in playground were found in the literature. Expert opinion from reviews suggests that shade provision for skin cancer prevention is best affected through integration with other policies.
Sociodemographic Drivers of Donor and Recipient Gender Disparities in Living Kidney Donation in Australia
Publisher: Elsevier BV
Date: 08-2023
Urologists’ referral and radiation oncologists’ treatment patterns regarding high‐risk prostate cancer patients receiving radiotherapy within 6 months after radical prostatectomy: A prospective cohort analysis
Publisher: Wiley
Date: 02-12-2020
Abstract: Previous studies have observed low rates of adjuvant radiotherapy after radical prostatectomy (RP) for high-risk prostate cancer patients. However, it is not clear the extent to which these low rates are driven by urologists' referral and radiation oncologists' treatment patterns. The Clinician-Led Improvement in Cancer Care (CLICC) implementation trial was conducted in nine public hospitals in New South Wales, Australia. Men who underwent RP for prostate cancer during 2013-2015 and had at least one high-risk pathological feature of extracapsular extension, seminal vesicle invasion and/or positive surgical margins were included in these analyses. Outcomes were as follows: (i) referral to a radiation oncologist within 4 months after RP ('referred') (ii) commencement of radiotherapy within 6 months after RP among those who consulted a radiation oncologist ('radiotherapy after consultation'). Three hundred and twenty-five (30%) of 1071 patients were 'referred', and 74 (61%) of 121 patients received 'radiotherapy after consultation'. Overall, the probability of receiving radiotherapy within 6 months after RP was 15%. The probability of being 'referred' increased according to higher 5-year risk of cancer-recurrence (P < 0.001). Only 30% of patients with high-risk features are referred to a radiation oncologist with the likelihood of referral being influenced by the perceived risk of cancer-recurrence as well as the urologist's institutional ersonal preference. When patients are seen by a radiation oncologist, 61% receive radiotherapy within 6 months after RP with the likelihood of receiving radiotherapy not being heavily influenced by increasing risk of recurrence. This suggests many suitable patients would receive radiotherapy if referred and seen by a radiation oncologist.
Australian Rural Caregivers’ Experiences in Supporting Patients With Kidney Failure to Access Dialysis and Kidney Transplantation: A Qualitative Study
Publisher: Elsevier BV
Date: 12-2022
DOI: 10.1053/J.AJKD.2022.05.015
Abstract: Caregivers of patients with chronic kidney disease from rural communities play a crucial role in access to dialysis and transplantation, but they face many challenges including geographical distance, financial hardship, and limited support. This study aimed to inform strategies to overcome these challenges by describing the experiences of caregivers of patients with kidney failure from rural Australian communities in accessing kidney replacement therapy. Qualitative study. 18 adult caregivers of Australian rural patients with kidney failure treated with dialysis or kidney transplantation. Semistructured interviews were conducted. Interview transcripts were thematically analyzed. The 18 participants were aged 20 to 78 years 13 (72%) were female, and 13 (72%) were the spouse artner of the patient. We identified 5 themes: devastating social isolation (difficult periods of separation, exclusion from peers, forced relocation) financial dependency and sacrifice (burgeoning out-of-pocket costs, disruption to work life, foregoing autonomy) ongoing psychological trauma (concern for neglect and stress on children, long-term emotional distress) overwhelmed by multifaceted roles and expectations (patient advocacy, uncertainty in navigating multiple health systems) and persistent burden of responsibility (loss of self-identity, ongoing travel requirements, scarcity of psychosocial support, unpreparedness for treatment regime). The study was conducted in a high-income, English-speaking country with universal health insurance, which may limit the transferability of the findings. Australian rural caregivers of people with kidney failure treated by maintenance dialysis or transplantation experience an exhausting physical, financial, and psychological burden. Strategies to address these profound challenges are needed. This interview-based study elicited the challenges faced by people and family members who care for patients from rural towns who are receiving dialysis or kidney transplantation. The barriers and difficulties reported included traveling long distances, needing to move to larger towns and leaving their homes, feeling concerned for the long-term effects on their children, physical exhaustion, and financial issues. Additional efforts are needed to identify the means by which caregivers and their families in rural towns can obtain support to care for those with kidney failure.
Applications of system dynamics modelling to support health policy
Publisher: The Sax Institute
Date: 2015
DOI: 10.17061/PHRP2531531
Abstract: The value of systems science modelling methods in the health sector is increasingly being recognised. Of particular promise is the potential of these methods to improve operational aspects of healthcare capacity and delivery, analyse policy options for health system reform and guide investments to address complex public health problems. Because it lends itself to a participatory approach, system dynamics modelling has been a particularly appealing method that aims to align stakeholder understanding of the underlying causes of a problem and achieve consensus for action. The aim of this review is to determine the effectiveness of system dynamics modelling for health policy, and explore the range and nature of its application. A systematic search was conducted to identify articles published up to April 2015 from the PubMed, Web of Knowledge, Embase, ScienceDirect and Google Scholar databases. The grey literature was also searched. Papers eligible for inclusion were those that described applications of system dynamics modelling to support health policy at any level of government. Six papers were identified, comprising eight case studies of the application of system dynamics modelling to support health policy. No analytic studies were found that examined the effectiveness of this type of modelling. Only three ex les engaged multidisciplinary stakeholders in collective model building. Stakeholder participation in model building reportedly facilitated development of a common 'mental map' of the health problem, resulting in consensus about optimal policy strategy and garnering support for collaborative action. The paucity of relevant papers indicates that, although the volume of descriptive literature advocating the value of system dynamics modelling is considerable, its practical application to inform health policy making is yet to be routinely applied and rigorously evaluated. Advances in software are allowing the participatory model building approach to be extended to more sophisticated multimethod modelling that provides policy makers with more powerful tools to support the design of targeted, effective and equitable policy responses for complex health problems. Building capacity and investing in communication to promote these modelling methods, as well as documenting and evaluating their applications, will be vital to supporting uptake by policy makers.
Health, Equity and Intellectual Disability
Publisher: Wiley
Date: 17-05-2005
The EXpert PANel Decision (EXPAND) method: a way to measure the impact of diverse quality improvement activities of clinical networks
Publisher: The Sax Institute
Date: 2018
DOI: 10.17061/PHRP2841829
Abstract: Objectives and importance of study: Evaluating impacts of quality improvement activities across erse clinical focus areas is challenging. However, evaluation is necessary to determine if the activities had an impact on quality of care and resulted in system-wide change. Clinical networks of health providers aim to provide a platform for accelerating quality improvement activities and adopting evidence based practices. However, most networks do not collect primary data that would enable evaluation of impact. We adapted an established expert panel approach to measure the impacts of efforts in 19 clinical networks to improve care and promote health system change, to determine whether these efforts achieved their purpose. A retrospective cross-sectional study of 19 clinical networks using multiple methods of data collection including the EXpert PANel Decision (EXPAND) method. Network impacts were identified through interviews with network managers (n = 19) and co-chairs (n = 32), and document review. The EXPAND method brought together five independent experts who provided initial in idual ratings of overall network impact. After attendance at an in-person moderated meeting where aggregate scores were discussed, the experts provided a final rating. Median scores of postmeeting ratings were the final measures of network impact. Among the 19 clinical networks, experts rated 47% (n = 9) as having a limited impact on improving quality of care, 37% (n = 7) as having a moderate impact and 16% (n = 3) as having a high impact. The experts rated 26% (n = 5) of clinical networks as having a limited impact on facilitating system-wide change, 37% (n = 7) as having a moderate impact and 37% (n = 7) as having a high impact. The EXPAND method enabled appraisal of erse clinical networks in the absence of primary data that could directly evaluate network impacts. The EXPAND method can be applied to assess the impact of quality improvement initiatives across erse clinical areas to inform healthcare planning, delivery and performance. Further research is needed to assess its reliability and validity.
Improving the quality of healthcare: a cross-sectional study of the features of successful clinical networks.
Publisher: The Sax Institute
Date: 2018
Abstract: Networks of clinical experts are being established internationally to help embed evidence based care in health systems. There is emerging evidence that these clinical networks can drive quality improvement programs, but the features that distinguish successful networks are largely unknown. We examined the factors that make clinical networks effective at improving quality of care and facilitating system-wide changes. We conducted a retrospective cross-sectional study of 19 state-wide clinical networks that reflected a range of medical and surgical specialty care and were in operation from 2006 to 2008 in New South Wales, Australia. We conducted qualitative interviews with network leaders to characterise potential impacts, and conducted internet surveys of network members to evaluate external support and the organisational and program characteristics of their respective networks. The main outcome measures were median ratings of in idual network impacts on quality of care and system-wide changes, determined through independent assessment of documented evidence by an expert panel. We interviewed 19 network managers and 32 network co-chairs 592 network members completed internet surveys. Three networks were rated as having had high impact on quality of care, and seven as having had high impact on system-wide change. Better-perceived strategic and operational network management was significantly associated with higher ratings of impact on quality of care (coefficient estimate 0.86 95% confidence interval [CI] 0.02, 1.69). Better-perceived leadership of the network manager (coefficient estimate 0.47 95% CI 0.10, 0.85) and strategic and operational network management (coefficient estimate 0.23 95% CI 0.06, 0.41) were associated with higher ratings of impact on system-wide change. This study represents the largest study of clinical networks undertaken to date. The results suggest that clinical networks that span the health system can improve quality of care and facilitate system-wide change. Network management and leadership, encompassing both strategic and operational elements at the organisational level, appear to be the primary influences on network success. These findings can guide future organisational and system-wide change programs and the development or strengthening of clinical networks to help implement evidence based care to improve service delivery and outcomes.
The impact of smoke-free workplaces on declining cigarette consumption in Australia and the United States.
Publisher: American Public Health Association
Date: 07-1999
Abstract: OBJECTIVES: This study estimates the contribution of smoke-free workplaces to the recent national declines in cigarette consumption in Australia and the United States. METHODS: Nineteen studies of the impact of smoke-free workplaces on workday cigarette consumption were reviewed. The number and cost of cigarettes forgone were calculated and extrapolated to a scenario in which all indoor work areas were smoke-free. RESULTS: Of the 19 studies, 18 reported declines in daily smoking rates, and 17 reported declines in smoking prevalence. Smoke-free workplaces are currently responsible for an annual reduction of some 602 million cigarettes, or 1.8% of all cigarettes that might otherwise be consumed, in Australia, and an annual reduction of 9.7 billion cigarettes (2%) in the United States. Approximately 22.3% of the 2.7 billion decrease in cigarette consumption in Australia between 1988 and 1995 can be attributed to smoke-free workplaces, as can 12.7% of the 76.5 billion decrease in the United States between 1988 and 1994. CONCLUSIONS: If workplaces were universally smoke-free, the number of cigarettes forgone annually would increase to 1.14 billion (3.4%) in Australia and 20.9 billion (4.1%) in the United States.
Social capital and its relevance to health and family policy
Publisher: Elsevier BV
Date: 08-1999
DOI: 10.1111/J.1467-842X.1999.TB01288.X
Abstract: It is important to consider the global context in which we operate and in which the association between society and health is to be explored. We are in a democratic world, with an economy that emphasises the market and a post-modern culture. The ancient elements of state, market and community are discernible in avaricious combinations and, if we are seeking a just social order, it is important that we apply appropriate analytical methods to social understanding. While social capital is an arresting term, its ambiguity limits its broad applicability and even makes it dangerous. Sir Richard Doll and his colleague Richard Peto once described epidemiological insight as a boundary-setting exercise, delimiting territory within which basic and clinical science can explore mechanisms. When it comes to matters of social and personal well-being, the same approach may serve us well. Social capital, defined differently by everyone who uses it, must be given some stability and be subject to good quality epidemiological research, not too dissimilar to that which has underpinned epidemiology's immense success in public health over the decades. Despite social capital's complexity, there are growing efforts to measure it and relate it to desirable social functions, but the ability of social capital to capture fully the subtle interplay of in iduals and society so essential for their health and happiness is questionable.
International Survey to Establish Prioritized Outcomes for Trials in People With Coronavirus Disease 2019
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 18-08-2020
DOI: 10.1097/CCM.0000000000004584
Abstract: There are over 4,000 trials conducted in people with coronavirus disease 2019. However, the variability of outcomes and the omission of patient-centered outcomes may diminish the impact of these trials on decision-making. The aim of this study was to generate a consensus-based, prioritized list of outcomes for coronavirus disease 2019 trials. In an online survey conducted in English, Chinese, Italian, Portuguese, and Spanish languages, adults with coronavirus disease 2019, their family members, health professionals, and the general public rated the importance of outcomes using a 9-point Likert scale (7–9, critical importance) and completed a Best-Worst Scale to estimate relative importance. Participant comments were analyzed thematically. International. Adults 18 years old and over with confirmed or suspected coronavirus disease 2019, their family members, members of the general public, and health professionals (including clinicians, policy makers, regulators, funders, and researchers). None. None. In total, 9,289 participants from 111 countries (776 people with coronavirus disease 2019 or family members, 4,882 health professionals, and 3,631 members of the public) completed the survey. The four outcomes of highest priority for all three groups were: mortality, respiratory failure, pneumonia, and organ failure. Lung function, lung scarring, sepsis, shortness of breath, and oxygen level in the blood were common to the top 10 outcomes across all three groups (mean 7.5, median ≥ 8, and 70% of respondents rated the outcome as critically important). Patients/family members rated fatigue, anxiety, chest pain, muscle pain, gastrointestinal problems, and cardiovascular disease higher than health professionals. Four themes underpinned prioritization: fear of life-threatening, debilitating, and permanent consequences addressing knowledge gaps enabling preparedness and planning and tolerable or infrequent outcomes. Life-threatening respiratory and other organ outcomes were consistently highly prioritized by all stakeholder groups. Patients/family members gave higher priority to many patient-reported outcomes compared with health professionals.
Knowledge, attitudes and beliefs towards management of men with locally advanced prostate cancer following radical prostatectomy: an Australian survey of urologists
Publisher: Wiley
Date: 04-2016
DOI: 10.1111/BJU.13037
Abstract: To investigate Australian urologists' knowledge, attitudes and beliefs, and the association of these with treatment preferences relating to guideline-recommended adjuvant radiotherapy for men with adverse pathologic features following radical prostatectomy. A nationwide mailed and web-based survey of Australian urologist members of the Urological Society of Australia and New Zealand (USANZ). 157 surveys were included in the analysis (45% response rate). Just over half of respondents (54%) were aware of national clinical practice guidelines for the management of prostate cancer. Urologists' attitudes and beliefs towards the specific recommendation for post-operative adjuvant radiotherapy for men with locally advanced prostate cancer were mixed. Just over half agreed the recommendation is based on a valid interpretation of the underpinning evidence (54.1%, 95% CI [46%, 62.2%]) but less than one third agreed adjuvant radiotherapy will lead to improved patient outcomes (30.2%, 95% CI [22.8%, 37.6%]). Treatment preferences were varied, demonstrating clinical equipoise. A positive attitude towards the clinical practice recommendation was significantly associated with treatment preference for adjuvant radiotherapy (rho = 0.520, P < 0.0001). There was stronger preference for adjuvant radiotherapy in more recently trained urologists (registrars) while preference for watchful waiting was greater in more experienced urologists (consultants) (b = 0.156, P = 0.034 95% CI [0.048, 1.24]). Urologists' attitudes towards clinical practice guidelines in general were positive. There remains clinical equipoise among Australian urologists in relation to adjuvant radiotherapy for men with adverse pathologic features following radical prostatectomy.
Core Outcomes Set for Trials in People With Coronavirus Disease 2019
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 17-08-2020
DOI: 10.1097/CCM.0000000000004585
Abstract: The outcomes reported in trials in coronavirus disease 2019 are extremely heterogeneous and of uncertain patient relevance, limiting their applicability for clinical decision-making. The aim of this workshop was to establish a core outcomes set for trials in people with suspected or confirmed coronavirus disease 2019. Four international online multistakeholder consensus workshops were convened to discuss proposed core outcomes for trials in people with suspected or confirmed coronavirus disease 2019, informed by a survey involving 9,289 respondents from 111 countries. The transcripts were analyzed thematically. The workshop recommendations were used to finalize the core outcomes set. International. Adults 18 years old and over with confirmed or suspected coronavirus disease 2019, their family members, members of the general public and health professionals (including clinicians, policy makers, regulators, funders, researchers). None. None. Six themes were identified. “Responding to the critical and acute health crisis” reflected the immediate focus on saving lives and preventing life-threatening complications that underpinned the high prioritization of mortality, respiratory failure, and multiple organ failure. “Capturing different settings of care” highlighted the need to minimize the burden on hospitals and to acknowledge outcomes in community settings. “Encompassing the full trajectory and severity of disease” was addressing longer term impacts and the full spectrum of illness (e.g. shortness of breath and recovery). “Distinguishing overlap, correlation and collinearity” meant recognizing that symptoms such as shortness of breath had distinct value and minimizing overlap (e.g. lung function and pneumonia were on the continuum toward respiratory failure). “Recognizing adverse events” refers to the potential harms of new and evolving interventions. “Being cognizant of family and psychosocial wellbeing” reflected the pervasive impacts of coronavirus disease 2019. Mortality, respiratory failure, multiple organ failure, shortness of breath, and recovery are critically important outcomes to be consistently reported in coronavirus disease 2019 trials.
A strategy for increasing news media coverage of tobacco and health in Australia
Publisher: Oxford University Press (OUP)
Date: 06-2001
Abstract: In many nations, government fiscal restraint is reducing the ability of public health authorities to mount mass-reach health information advertising c aigns. Strategies for increasing news coverage of health issues, and thereby contributing to policy advocacy, are well recognized, yet under-explored in health promotion research. To increase news coverage of smoking and health issues by issuing media releases about research judged as newsworthy and important in contributing to tobacco control policy debates. Research reports selected for their potential newsworthiness were promoted in news releases and their news 'hit rates' in New South Wales (Australia) metropolitan media over 5 weeks were compared with the background coverage of tobacco control issues over the same period. Fifty-eight of 283 (20.5%) news reports on tobacco in the study period were generated by the six media releases. News reportage of tobacco control and other public health issues can be increased significantly by the strategic use of news releases alerting journalists to research reports that embody recognizable news values. This is an inexpensive strategy with great potential to advance public health objectives.
Patient- And parent proxy-reported outcome measures for life participation in children with chronic kidney disease: A systematic review
Publisher: Oxford University Press (OUP)
Date: 02-08-2020
DOI: 10.1093/NDT/GFAA132
Abstract: The burden of chronic kidney disease (CKD) and its treatment may severely limit the ability of children with CKD to do daily tasks and participate in family, school, sporting and recreational activities. Life participation is critically important to affected children and their families however, the appropriateness and validity of available measures used to assess this outcome are uncertain. The aim of this study was to identify the characteristics, content and psychometric properties of existing measures for life participation used in children with CKD. We searched MEDLINE, Embase, PsychINFO, Cumulative Index to Nursing and Allied Health Literature and the Cochrane Kidney and Transplant register to August 2019 for all studies that used a measure to report life participation in children with CKD. For each measure, we extracted and analyzed the characteristics, dimensions of life participation and psychometric properties. From 128 studies, we identified 63 different measures used to assess life participation in children with CKD. Twenty-five (40%) of the measures were patient reported, 7 (11%) were parent proxy reported and 31 (49%) had both self and parent proxy reports available. Twenty-two were used in one study only. The Pediatric Quality of Life Inventory version 4.0 generic module was used most frequently in 62 (48%) studies. Seven (11%) were designed to assess ability to participate in life, with 56 (89%) designed to assess other constructs (e.g. quality of life) with a subscale or selected questions on life participation. Across all measures, the three most frequent activities specified were social activities with friends and/or family, leisure activities and self-care activities. Validation data in the pediatric CKD population were available for only 19 (30%) measures. Life participation is inconsistently measured in children with CKD and the measures used vary in their characteristics, content and validity. Validation data supporting these measures in this population are often incomplete and are sparse. A meaningful and validated measure for life participation in children with CKD is needed.
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No related grants have been discovered for Amanda Dominello.