Publications by authors named "Kirsten Howard"

245 Publications

Adjuvant immunotherapy recommendations for stage III melanoma: physician and nurse interviews.

BMC Cancer 2021 Sep 10;21(1):1014. Epub 2021 Sep 10.

NHMRC Clinical Trials Centre, The University of Sydney, Sydney, NSW, Australia.

Background: Adjuvant immunotherapy is revolutionising care for patients with resected stage III and IV melanoma. However, immunotherapy may be associated with toxicity, making treatment decisions complicated. This study aimed to identify factors physicians and nurses considered regarding adjuvant immunotherapy for melanoma.

Methods: In-depth interviews were conducted with physicians (medical oncologists, surgeons and dermatologists) and nurses managing patients with resected stage III melanoma at three Australian tertiary melanoma centres between July 2019 and March 2020. Factors considered regarding adjuvant immunotherapy were explored. Recruitment continued until data saturation and thematic analysis was undertaken.

Results: Twenty-five physicians and nurses, aged 28-68 years, 60% females, including eleven (44%) medical oncologists, eight (32%) surgeons, five (20%) nurses, and one (4%) dermatologist were interviewed. Over half the sample managed five or more new resected stage III patients per month who could be eligible for adjuvant immunotherapy. Three themes about adjuvant immunotherapy recommendations emerged: [1] clinical and patient factors, [2] treatment information provision, and [3] individual physician/nurse factors. Melanoma sub-stage and an individual patient's therapy risk/benefit profile were primary considerations. Secondary factors included uncertainty about adjuvant immunotherapy's effectiveness and their views about treatment burden patients might consider acceptable.

Conclusions: Patients' disease sub-stage and their treatment risk versus benefit drove the melanoma health care professionals' adjuvant immunotherapy endorsement. Findings clarify clinician preferences and values, aiding clinical communication with patients and facilitating clinical decision-making about management options for resected stage III melanoma.
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http://dx.doi.org/10.1186/s12885-021-08752-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8434723PMC
September 2021

Factors Associated With Advanced Colorectal Neoplasia in Patients With CKD.

Am J Kidney Dis 2021 Aug 27. Epub 2021 Aug 27.

College of Medicine and Public Health, Flinders University, Adelaide, SA, Australia.

Rationale And Objective: The risk of developing colorectal cancer in patients with chronic kidney disease (CKD) is twice that of the general population, but the factors associated with colorectal cancer are poorly understood. The aim of this study was to identify factors associated with advanced colorectal neoplasia in patients with CKD.

Study Design: Prospective cohort study.

Setting & Participants: Patients with CKD stages 3-5, including those treated with maintenance dialysis or transplantation, across eleven sites in Australia, New Zealand, Canada, and Spain were screened for colorectal neoplasia using a fecal immunochemical test (FIT) as part of the Detecting Bowel Cancer in CKD (DETECT) Study.

Exposure: Baseline characteristics for patients at the time of study enrollment were ascertained, including duration of CKD, comorbidities, and medications.

Outcome: Advanced colorectal neoplasia was identified through a 2-step verification process with colonoscopy following positive FIT and 2-year clinical follow-up for all patients.

Analytical Approach: Potential factors associated with advanced colorectal neoplasia were explored using multivariable logistic regression. Sensitivity analyses were performed using grouped LASSO logistic regression.

Results: Among 1706 patients who received FIT-based screening (791 with CKD stages 3-5 not receiving maintenance dialysis, 418 receiving dialysis, and 497 recipients of a functioning kidney transplant), 117 (6.9%) were detected to have advanced colorectal neoplasia (54 with CKD stages 3-5 not receiving dialysis, 34 receiving dialysis, and 29 recipients of a transplant), including nine colorectal cancers. Factors found to be associated with advanced colorectal neoplasia included older age (odds ratio (OR) 1.05 per year, 95% confidence interval (CI) 1.03-1.07, p<0.001), male sex (OR 2.27, 95% CI 1.45-3.54, p<0.001), azathioprine use (OR 2.99, 95% CI 1.40-6.37, p=0.005) and erythropoiesis-stimulating agent use (OR 1.92, 95% CI 1.22-3.03, p=0.005). Grouped LASSO logistic regression revealed similar associations between these factors and advanced colorectal neoplasia.

Limitations: Unmeasured confounding factors.

Conclusions: Older age, male sex, erythropoiesis-stimulating agents and azathioprine were found to be significantly associated with advanced colorectal neoplasia in patients with CKD.
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http://dx.doi.org/10.1053/j.ajkd.2021.07.011DOI Listing
August 2021

Using web conferencing to engage Aboriginal and Torres Strait Islander young people in research: a feasibility study.

BMC Med Res Methodol 2021 08 17;21(1):172. Epub 2021 Aug 17.

Charles Darwin University, Wellbeing and Preventable Chronic Diseases Division, Menzies School of Health Research, Casuarina, NT, 0811, Australia.

Background: While web conferencing technologies are being widely used in communication and collaboration, their uptake in conducting research field work has been relatively slow. The benefits that these technologies offer researchers for engaging with hard-to-reach populations are beginning to be recognised, however, the acceptability and feasibility of using web conferencing technology to engage Aboriginal and Torres Strait Islander young people in research is unknown.

Objective: This study aims to evaluate whether the use of web conferencing to engage Aboriginal and Torres Strait Islander young people in research is an acceptable and feasible alternative to conventional face-to-face methods.

Methods: Aboriginal and Torres Strait Islander young people aged between 18 and 24 years were recruited via emails, flyers and snowballing to participate in an Online Yarning Circle (OYC) about wellbeing conducted via web conferencing. Five young Aboriginal and Torres Strait Islander Australians were trained as peer facilitators and each conducted one or more OYCs with support from an experienced Aboriginal and Torres Strait Islander researcher. The OYCs were recorded and the researchers conducted post-OYC interviews with the facilitators. OYC recordings, facilitator interviews and researchers' reflections about the method were analysed to assess acceptability and feasibility for use with this population.

Results: 11 OYCs were conducted with 21 participants. The evaluation focused on (a) acceptability of the method for participants and facilitators and (b) feasibility of data collection method and procedures for use in research. Our evaluation revealed good acceptability and feasibility of the method, with only minor challenges experienced, which were predominantly logistical in nature and related to scheduling, obtaining documentation of consent, and technical issues. These challenges were offset by the greater control over the level of engagement that was comfortable for individual participants and the greater ease with which they felt they could withdraw from participating. This shift in the traditional researcher-participant power dynamic was recognised by both participants and peer facilitators and was regarded as a support for Aboriginal and Torres Strait Islander young people's participation in research.

Conclusions: The use of web conferencing to engage Aboriginal and Torres Strait Islander young people in research offers an acceptable and feasible alternative to face-to-face research methods. The benefits conferred by these technologies associated with yielding greater control and power to the research participant has broad relevance to research with marginalised populations.
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http://dx.doi.org/10.1186/s12874-021-01366-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8369329PMC
August 2021

The Fabric of Aboriginal and Torres Strait Islander Wellbeing: A Conceptual Model.

Int J Environ Res Public Health 2021 07 21;18(15). Epub 2021 Jul 21.

Menzies School of Health Research, Charles Darwin University, Darwin 0810, Australia.

Wellbeing is culturally bound and is shaped by many aspects of life, including experiences, beliefs and values. As such, in order to accurately measure wellbeing for a specific cultural group, it is necessary to understand the experiences, beliefs and values that influence the conception and experience of wellbeing of that group. This paper presents a conceptual model of wellbeing for Aboriginal and Torres Strait Islander people, which was developed from a large national qualitative study that explored the views of 359 Aboriginal and Torres Strait Islander adults. An Aboriginal- and Torres Strait Islander-led research team used an Indigenist research approach to iteratively develop this conceptual model, called the Fabric of Aboriginal and Torres Strait Islander Wellbeing model, which takes inspiration from Aboriginal and Torres Strait Islander weaving traditions whereby individual strands are twined to create fabrics that are both beautiful and strong. This reflects our findings that the parts of life that are most important to wellbeing for many Aboriginal and Torres Strait Islander people are interwoven with their families, communities and culture.
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http://dx.doi.org/10.3390/ijerph18157745DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8345714PMC
July 2021

Cost-effectiveness of a mobile phone text messaging program (KIDNEYTEXT) targeting dietary behaviours in people receiving haemodialysis.

J Hum Nutr Diet 2021 Jul 29. Epub 2021 Jul 29.

Westmead Clinical School, The University of Sydney, Sydney, NSW, Australia.

Background: There is little information available to inform the cost-effectiveness of eHealth interventions in improving patient health outcomes. A trial-based economic evaluation was undertaken aiming to inform the feasibility of conducting a mobile phone text messaging programme targeting dietary behaviours in people receiving haemodialysis.

Methods: A trial-based economic evaluation from a health system perspective of a 6-month pilot randomised controlled trial was undertaken. One hundred and thirty patients receiving haemodialysis from six dialysis units across Sydney, Australia, were enrolled into the KIDNEYTEXT study. Usual care (inperson dietary counselling) was compared with usual care plus three semi-personalised dietary mobile phone text messages per week over a 6-month period. The outcomes of this economic evaluation included: cost of intervention, cost-effectiveness and marginal effects on total costs.

Results: The cost of developing and maintaining the KIDNEYTEXT intervention was US $110 per participant. Total costs were US $1418 higher in the usual care arm compared to the intervention arm. The incremental benefits for quality-adjusted life adjusted years were 0.01 [95% confidence interval (CI) = -0.03 to 0.06] and dietary adherence (i.e., adherent to three or more dietary guidelines at 6 months) being 0.04 (95% CI = -0.15 to 0.24). The largest component of total costs was related to unplanned admissions to hospital.

Conclusions: Mobile phone text messages targeting dietary behaviours may be cost saving, at the same time as maintaining similar or improved dietary behaviours. A larger trial with a longer follow-up time is warranted.
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http://dx.doi.org/10.1111/jhn.12937DOI Listing
July 2021

Implementation of the programme to prevent falls in older people: a process evaluation protocol.

BMJ Open 2021 07 26;11(7):e048395. Epub 2021 Jul 26.

Falls, Balance and Injury Research Centre, Neuroscience Research Australia, Randwick, New South Wales, Australia

Introduction: One in three people aged 65 years and over fall each year. The health, economic and personal impact of falls will grow substantially in the coming years due to population ageing. Developing and implementing cost-effective strategies to prevent falls and mobility problems among older people is therefore an urgent public health challenge. is a low-cost, unsupervised, home-based balance exercise programme delivered through a computer or tablet. has a simple user-interface that incorporates physical and behavioural elements designed to promote compliance. A large randomised controlled trial in 503 community-dwelling older people has shown that is safe, has high adherence rates and is effective in improving balance and reducing falls. The current project targets a major need for older people and will address the final steps needed to scale this innovative technology for widespread use by older people across Australia and internationally.

Methods And Analysis: This project will endeavour to recruit 300 participants across three sites in Australia and 100 participants in the UK. The aim of the study is to evaluate the implementation of into the community and health service settings in Australia and the UK. The nested process evaluation will use both quantitative and qualitative methods to explore uptake and acceptability of the programme and associated resources. The primary outcome is participant adherence to the programme over 6 months.

Ethics And Dissemination: Ethical approval has been obtained from the South East Sydney Local Health District Human Research Ethics Committee (HREC reference 18/288) in Australia and the North West- Greater Manchester South Research Ethics Committee (IRAS ID: 268954) in the UK. Dissemination will be via publications, conferences, newsletter articles, social media, talks to clinicians and consumers and meetings with health departments/managers.

Trial Registration Number: ACTRN12619001329156.
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http://dx.doi.org/10.1136/bmjopen-2020-048395DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8314746PMC
July 2021

Population-based utility scores for HPV infection and oropharyngeal squamous cell carcinoma among Indigenous Australians.

BMC Public Health 2021 07 26;21(1):1455. Epub 2021 Jul 26.

Australian Research Centre for Population Oral Health, Adelaide Dental School, The University of Adelaide, Adelaide Health & Medical Sciences Building, Adelaide, 5005, Australia.

Background: Oropharyngeal squamous cell carcinoma (OPSCC) is associated with high mortality. Human papillomavirus (HPV) infection is a significant risk factor for OPSCC. Utilities are fundamental values representing the strength of individuals' preferences for specific health-related outcomes. Our study aim was to work in partnership with Indigenous communities in South Australia to develop, pilot test and estimate utility scores for health states related to HPV, HPV vaccination, precursor OPSCC and its treatment, and early stage OPSCC among Indigenous Australians.

Methods: Development and pilot testing of hypothetical HPV and OPSCC health states, specifically through the lens of being Indigenous Australian, was conducted with an Indigenous Reference Group. Six health states were decided upon, with utility scores calculated using a two-stage standard gamble approach among a large convenience sample of Indigenous Australians aged 18+ years residing in South Australia. The rank, percentage of perfect health and utility score of each health state was summarised using means, and medians at 12 months and lifetime duration. Potential differences by age, sex and residential location were assessed using the Wilcox Rank Sum test.

Results: Data from 1011 participants was obtained. The mean utility scores decreased with increasing severity of health states, ranging from 0.91-0.92 in 'screened, cytology normal, HPV vaccination' and 'screened, HPV positive, endoscopy normal', to less than 0.90 (ranging from 0.87-0.88) in lower grade conditions (oral warts and oral intraepithelial neoplasia) and less than 0.80 (ranging from 0.75-0.79) in 'early stage throat cancer'. Higher utility scores were observed for 'screened, cytology normal and HPV vaccination' among younger participants (18-40 years), for 'early stage invasive throat cancer' among females, and for 'oral intraepithelial neoplasia' and 'early stage invasive throat cancer' among metropolitan-dwelling participants.

Conclusion: Among a large sample of Indigenous Australians, utility for oral HPV infection and OPSCC decreased with severity of health states. Older participants, as well as males and those residing in non-metropolitan locations, had decreased utility for high-grade cytology and early invasive cancer states. Our findings are an important contribution to cost-utility and disease prevention strategies that seek to inform policies around reducing HPV infection and OPSCC among all Australians.
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http://dx.doi.org/10.1186/s12889-021-11496-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8314643PMC
July 2021

Population-based utility scores for HPV infection and cervical squamous cell carcinoma among Australian Indigenous women.

PLoS One 2021 22;16(7):e0254575. Epub 2021 Jul 22.

Adelaide Dental School, Australian Research Centre for Population Oral Health, The University of Adelaide, Adelaide, Australia.

Objective: Working in partnership with Indigenous communities in South Australia, we aimed to develop, pilot test and estimate utility scores for health states relating to cervical cancer screening, precancer, and invasive cervical cancer and precancer/cancer treatment among Indigenous women.

Methods: Development and pilot testing of hypothetical cervical cancer health states, specifically through the lens of being an Indigenous Australian woman, was done with an Indigenous Reference Group in conjunction with five female Indigenous community members. Six health states were developed. These included: (1) Screened: cytology normal; (2) human papillomaviruses (HPV) positive with cytology normal; (3) low grade cytology (LSIL);(4) high grade cytology (HSIL); (5) early stage cervical cancer and; (6) later stage cervical cancer. Utility scores were calculated using a two-stage standard gamble approach among a large cohort of Indigenous Australian women taking part in a broader study involving oral HPV infection. The mean and standard deviation (SD) of the rank, percentage of respondents with a utility = 1 (perfect health) and utility score of each health state was summarised. Mean (SD) and medians and inter-quartile range (IQR) over 12 months and lifetime duration were calculated. Potential differences by age and residential location were assessed using the Wilcox Sum Rank test.

Results: Data was obtained from 513 Indigenous women aged 19+ years. Mean utility scores were higher for the four non-cancer health states than for invasive cervical cancer states (p-values <0.05). Lower mean utility scores were observed for late stage cervical cancer, with 0.69 at 12 months and 0.70 for lifetime duration (Intra-class correlation coefficients = 0.425). Higher utility scores were observed for the four non-cancer health states among non-metropolitan participants (ranged from 0.93 to 0.98) compared with metropolitan participants (ranged from 0.86 to 0.93) (p-values<0.05).

Conclusion: Among a large cohort of Indigenous Australian women, the reduction in quality of life (which utilities reflect) was perceived to be greater with increasing severity of cervical cancer health states. There were differences observed by geographic location, with positive cervical screening and precursor cancer-related quality of life being much higher among non-metropolitan-dwelling participants. These utility values, from one of the largest such studies ever performed in any population will be uniquely able to inform modelled evaluations of the benefits and costs of cervical cancer prevention interventions in Indigenous women.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0254575PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8298063PMC
July 2021

What Matters 2 Adults (WM2Adults): Understanding the Foundations of Aboriginal and Torres Strait Islander Wellbeing.

Int J Environ Res Public Health 2021 06 8;18(12). Epub 2021 Jun 8.

Menzies School of Health Research, Charles Darwin University, Darwin 0810, Australia.

Aboriginal and Torres Strait Islander people experience a greater range of health and social disadvantages compared to other Australians. Wellbeing is a culturally-bound construct, and to date, a national evidence base around the components of wellbeing for Aboriginal and Torres Strait Islander people is lacking. Understanding and measurement of wellbeing for this population is critical in achieving health equity. This paper aims to identify and describe the foundations of wellbeing for Aboriginal and Torres Strait Islander adults. This national qualitative study was underpinned by an Indigenist research approach which privileges the voices of Aboriginal and Torres Strait Islander people. Aboriginal and Torres Strait Islander adults were purposively recruited from around Australia between September 2017 and September 2018 to participate in Yarning Circles, led by Aboriginal and Torres Strait Islander researchers. Yarning Circles were audio recorded, transcribed and analyzed. A Collaborative Yarning Methodology was used, which incorporated reflexive thematic analysis to identify and describe the foundations of wellbeing reported by participants. A total of 359 Aboriginal and Torres Strait Islander adults participated. Our analysis revealed five foundations of wellbeing: belonging and connection; holistic health; purpose and control; dignity and respect; and basic needs. These foundations were deeply interwoven by three interconnected aspects of Aboriginal and Torres Strait Islander life: family, community and culture. The findings of this study will substantially aid our efforts to develop a new wellbeing measure for Aboriginal and Torres Strait Islander adults. The iterative Indigenist methods used in this study provide a robust research methodology for conducting large-scale, nationally-relevant qualitative research with Aboriginal and Torres Strait Islander people. Policies and practices that are informed by our results have the potential to address outcomes that are meaningful for Aboriginal and Torres Strait Islander people.
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http://dx.doi.org/10.3390/ijerph18126193DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8226989PMC
June 2021

Do remote dialysis services really cost more? An economic analysis of hospital and dialysis modality costs associated with dialysis services in urban, rural and remote settings.

BMC Health Serv Res 2021 Jun 17;21(1):582. Epub 2021 Jun 17.

Menzies School of Health Research, Charles Darwin University, PO Box 41096, Casuarina, 0810, Darwin, Australia.

Background: Rates of end-stage kidney disease in Australia are highest in the Northern Territory (NT), with the burden of disease heaviest in remote areas. However, the high cost of delivering dialysis services in remote areas has resulted in centralisation, requiring many people to relocate for treatment. Patients argue that treatment closer to home improves health outcomes and reduces downstream healthcare use. Existing dialysis cost studies have not compared total health care costs associated with treatment in different locations.

Objective: To estimate and compare, from a payer perspective, the observed health service costs (all cause hospital admissions, emergency department presentations and maintenance dialysis) associated with different dialysis models in urban, rural and remote locations.

Methods: Using cost weights attributed to diagnostic codes in the NT Department of Health's hospital admission data set (2008-2014), we calculated the mean (SD) total annual health service costs by dialysis model for 995 dialysis patients. Generalized linear modeling with bootstrapping tested the marginal cost differences between different explanatory variables to estimate 'best casemix'/'worst casemix' cost scenarios.

Results: The mean annual patient hospital expenditure was highest for urban models at $97 928 (SD $21 261) and $43 440 (SD $5 048) and lowest for remote at $19 584 (SD $4 394). When combined with the observed maintenance dialysis costs, expenditure was the highest for urban models at $148 510 (SD $19 774). The incremental cost increase of dialysing in an urban area, compared with a rural area, for a relocated person from a remote area, was $5 648 more and increased further for those from remote and very remote areas to $10 785 and $15 118 respectively.

Conclusions: This study demonstrates that dialysis treatment in urban areas for relocated people has health and cost implications that maybe greater than the cost of remote service delivery. The study emphasises the importance of considering all health service costs and cost consequences of service delivery models.

Key Points For Decision Makers: Relocation for dialysis treatment has serious health and economic consequences. Relocated people have low dialysis attendance and high hospital costs in urban areas. While remote dialysis service models are more expensive than urban models, the comparative cost differences are significantly reduced when all health service costs are included. The delivery of equitable and accessible dialysis service models requires a holistic approach that incorporates the needs of the patient; hence dialysis cost studies must consider the full range of cost impacts beyond the dialysis treatments alone.
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http://dx.doi.org/10.1186/s12913-021-06612-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8212525PMC
June 2021

Identifying New Zealand Public Preferences for Pharmacist Prescribers in Primary Care: A Discrete Choice Experiment.

Patient 2021 Jun 10. Epub 2021 Jun 10.

School of Pharmacy, University of Otago, PO Box 56, Dunedin, Otago, 9054, New Zealand.

Background And Objective: Given increasing patient populations, general practitioner workforce constraints and the growing demand for health services in New Zealand (NZ), the development and provision of pharmacist prescribing services could be used to improve people's access to medicines. A discrete choice experiment (DCE) was utilised to determine NZ public preferences for pharmacist prescribing services in primary care in NZ.

Methods: A D-efficient DCE design generated 20 choice questions in four blocks of five questions with three labelled alternatives per choice question. The online DCE used a NZ general public online research panel administered by an external organisation (SurveyEngine). The DCE included six attributes with two attributes each with two levels (location of consultation and consultation type), three levels (type of service and operating hours) and four levels (waiting time and cost).

Results: Nine hundred and twenty-four respondents completed the survey with 4620 observations available for analyses. Respondents preferred pharmacist prescribing services with the following characteristics: optimisation of medicines and changes to only current medicine service types (relative to repeat prescribing); lower consultation costs, shorter waiting times, longer operating hours and consultation by appointment (relative to walk-in and wait clinic).

Conclusions: Prescribing policy could incorporate these public preferences to help develop accessible and effective primary care prescribing services utilising the skills of pharmacist prescribers to improve and reduce inequities in access to medicines in NZ. These results suggest the NZ public see pharmacists as part of the primary care prescribing team and are willing to utilise them if these services are implemented.
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http://dx.doi.org/10.1007/s40271-021-00529-9DOI Listing
June 2021

Wellbeing of Indigenous Peoples in Canada, Aotearoa (New Zealand) and the United States: A Systematic Review.

Int J Environ Res Public Health 2021 05 28;18(11). Epub 2021 May 28.

Wellbeing and Preventable Chronic Disease Division, Menzies School of Health Research, Charles Darwin University, Casuarina, NT 0810, Australia.

Despite the health improvements afforded to non-Indigenous peoples in Canada, Aotearoa (New Zealand) and the United States, the Indigenous peoples in these countries continue to endure disproportionately high rates of mortality and morbidity. Indigenous peoples' concepts and understanding of health and wellbeing are holistic; however, due to their diverse social, political, cultural, environmental and economic contexts within and across countries, wellbeing is not experienced uniformly across all Indigenous populations. We aim to identify aspects of wellbeing important to the Indigenous people in Canada, Aotearoa and the United States. We searched CINAHL, Embase, PsycINFO and PubMed databases for papers that included key Indigenous and wellbeing search terms from database inception to April 2020. Papers that included a focus on Indigenous adults residing in Canada, Aotearoa and the United States, and that included empirical qualitative data that described at least one aspect of wellbeing were eligible. Data were analysed using the stages of thematic development recommended by Thomas and Harden for thematic synthesis of qualitative research. Our search resulted in 2669 papers being screened for eligibility. Following full-text screening, 100 papers were deemed eligible for inclusion (Aotearoa (New Zealand) = 16, Canada = 43, United States = 41). Themes varied across countries; however, , , and were common aspects of wellbeing. Having this broader understanding of wellbeing across these cultures can inform decisions made about public health actions and resources.
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http://dx.doi.org/10.3390/ijerph18115832DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8198891PMC
May 2021

Health technology assessment for digital technologies that manage chronic disease: a systematic review.

Int J Technol Assess Health Care 2021 May 26;37(1):e66. Epub 2021 May 26.

School of Public Health, Faculty of Medicine and Health, University of Sydney, Camperdown, New South Wales, Australia.

Objective: A growing number of evaluation frameworks have emerged over recent years addressing the unique benefits and risk profiles of new classes of digital health technologies (DHTs). This systematic review aims to identify relevant frameworks and synthesize their recommendations into DHT-specific content to be considered when performing Health Technology Assessments (HTAs) for DHTs that manage chronic noncommunicable disease at home.

Methods: Searches were undertaken of Medline, Embase, Econlit, CINAHL, and The Cochrane Library (January 2015 to March 2020), and relevant gray literature (January 2015 to August 2020) using keywords related to HTA, evaluation frameworks, and DHTs. Included framework reference lists were searched from 2010 until 2015. The EUNetHTA HTA Core Model version 3.0 was selected as a scaffold for content evaluation.

Results: Forty-four frameworks were identified, mainly covering clinical effectiveness (n = 30) and safety (n = 23) issues. DHT-specific content recommended by framework authors fell within 28 of the 145 HTA Core Model issues. A further twenty-two DHT-specific issues not currently in the HTA Core Model were recommended.

Conclusions: Current HTA frameworks are unlikely to be sufficient for assessing DHTs. The development of DHT-specific content for HTA frameworks is hampered by DHTs having varied benefit and risk profiles. By focusing on DHTs that actively monitor/treat chronic noncommunicable diseases at home, we have extended DHT-specific content to all nine HTA Core Model domains. We plan to develop a supplementary evaluation framework for designing research studies, undertaking HTAs, and appraising the completeness of HTAs for DHTs.
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http://dx.doi.org/10.1017/S0266462321000362DOI Listing
May 2021

Quality of Life in Caregivers of Patients Randomized to Standard- Versus Extended-Hours Hemodialysis.

Kidney Int Rep 2021 Apr 1;6(4):1058-1065. Epub 2021 Feb 1.

Department of Nephrology, Sunshine Coast University Hospital, Birtinya, Australia.

Introduction: Caregivers are essential for the health, safety, and independence of many patients and incur financial and personal cost in this role, including increased burden and lower quality of life (QOL) compared to the general population. Extended-hours hemodialysis may be the preference of some patients, but little is known about its effects on caregivers.

Methods: Forty caregivers of participants of the ACTIVE Dialysis trial, who were randomized to 12 months extended (median 24 hours/wk) or standard (12 hours/wk) hemodialysis, were included. Utility-based QOL was measured by EuroQOL-5 Dimension-3 Level (EQ-5D-3L) and Short Form-6 Dimensions (SF-6D) and health-related QOL (HRQOL) was measured by the 36-Item Short Form Health Survey (SF-36) physical component summary (PCS) and mental component summary (MCS) and the Personal Wellbeing Index (PWI) at enrolment and then every 3 months until the end of the study.

Results: At baseline, utility-based QOL and HRQOL were similar in both groups. At follow-up, caregivers of people randomized to extended-hours dialysis experienced a greater decrease in utility-based QOL measured by EQ-5D-3L compared with caregivers of people randomized to standard hours (-0.18±0.30 vs. -0.02±0.16,  = 0.04). There were no differences between extended- and standard-hours groups in mean change in SF-6D (0.03±0.12 vs. -0.04±0.1,  = 0.8), PCS (-1.2±9.8 vs. -5.6±9.8,  = 0.2), MCS (-4.1±11.2 vs. -0.5±7.1,  = 0.4), and PWI (2.3±17.6 vs. 0.00±20.4,  = 0.9).

Conclusion: Poorer utility-based QOL, as measured by the EQ-5D-3L, was observed in caregivers of patients receiving extended-hours hemodialysis in this small study. Though the findings are exploratory, the possibility that mode of dialysis delivery negatively impacts on caregivers supports the prioritization of research on burden and impact of service delivery in this population.
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http://dx.doi.org/10.1016/j.ekir.2021.01.020DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8071646PMC
April 2021

Effectiveness of Wellbeing Intervention for Chronic Kidney Disease (WICKD): results of a randomised controlled trial.

BMC Nephrol 2021 Apr 19;22(1):136. Epub 2021 Apr 19.

Menzies School of Health Research, Charles Darwin University, Darwin, NT, 0811, Australia.

Background: End stage kidney disease (ESKD) is associated with many losses, subsequently impacting mental wellbeing. Few studies have investigated the efficacy of psychosocial interventions for people with ESKD and none exist for Indigenous people, a population in which the ESKD burden is especially high.

Methods: This three-arm, waitlist, single-blind randomised controlled trial examined efficacy of the Stay Strong App in improving psychological distress (Kessler distress scale; K10), depressive symptoms (adapted Patient Health Questionnaire; PHQ-9), quality of life (EuroQoL; EQ. 5D) and dialysis adherence among Indigenous Australians undergoing haemodialysis in central and northern Australia (Alice Springs and Darwin), with follow up over two 3-month periods. Effects of immediate AIMhi Stay Strong App treatment were compared with those from a contact control app (The Hep B Story) and treatment as usual (TAU). Control conditions received the Stay Strong intervention after 3 months.

Results: Primary analyses of the full sample (N = 156) showed statistically significant decreases in K10 and PHQ-9 scores at 3 months for the Hep B Story but not for the Stay Strong app or TAU. Restricting the sample to those with moderate to severe symptoms of distress or depression (K10 > =25 or PHQ-9 > =10) showed significant decreases in K10 and PHQ-9 scores for both Stay Strong and Hep B Story. No significant differences were observed for the EQ-5D or dialysis attendance.

Conclusions: Findings suggest that talking to people about their wellbeing and providing information relevant to kidney health using culturally adapted, locally relevant apps improve the wellbeing of people on dialysis. Further research is required to replicate these findings and identify active intervention components.

Trial Registration: ACTRN12617000249358 ; 17/02/2017.
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http://dx.doi.org/10.1186/s12882-021-02344-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8054368PMC
April 2021

Health Service Costs for a Predialysis Dietetic Clinic: A Retrospective Cost Analysis Study.

J Ren Nutr 2021 Apr 8. Epub 2021 Apr 8.

School of Medicine, University of Western Sydney, Sydney, New South Wales, Australia; South Western Sydney Local Health District, Liverpool, New South Wales, Australia; Department of Renal Medicine, Liverpool Hospital, Liverpool, New South Wales, Australia.

Objectives: Effect of dietetic consultation (DC) on clinical outcomes is an under-researched component of predialysis education. Predialysis DC has been associated with a 7.5-month delay in requiring dialysis commencement, having potential cost implications for health services. Limited studies have evaluated the possible impact of predialysis DC on health service costs. This study aimed to investigate the hospital health service costs associated for patients attending a predialysis dietetic clinic.

Methods: A cost analysis comparing hospital health service costs over 4 years in a cohort of predialysis patients with and without DC. Retrospective study data were used (n = 246) along with outpatient renal clinic visits, hospital admissions records to estimate total hospital service costs. A generalized linear model evaluated associations between total cost and the marginal effects of DC and other variables on total costs.

Results: Mean total cost for patients (outpatient visits, admissions, and dialysis) was AUD$178,913 (95% confidence interval = $158,735-$199,090) or $185/day (95% confidence interval = $12-$161). The DC group total costs/day were lower than the no-DC group with a mean difference of $51/day ($155 vs. $206; P = .03). Patients in the DC group had less admissions compared to the no-DC group (6.32 vs. 8.06; P = .02). The highest marginal costs estimated for the entire cohort were lower estimated glomerular filtration rate at admission ($123,511, P = .001), inpatient admissions ($189,333, P < .001), commencing dialysis ($581,812, P < .001), having diabetes ($94,590, P = .014), and cerebrovascular disease ($177,080, P = .01). DC advice did not influence total costs.

Conclusions: Patients who received DC had lower total health services costs/day compared to those who did not receive DC. Marginal cost analysis indicates the cost difference to be attributed to less time on dialysis and fewer hospital admissions in this retrospective observational cohort. An assessment of dietetic staffing in predialysis renal services is warranted.
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http://dx.doi.org/10.1053/j.jrn.2021.02.006DOI Listing
April 2021

Should I Have Adjuvant Immunotherapy? An Interview Study Among Adults with Resected Stage 3 Melanoma and Their Partners.

Patient 2021 Sep 24;14(5):635-647. Epub 2021 Mar 24.

NHMRC Clinical Trials Centre, The University of Sydney, 92-94 Parramatta Rd, Camperdown, NSW, 2050, Australia.

Background: Adjuvant immunotherapy is a new treatment paradigm for adults with resected stage 3 melanoma. However, therapy can lead to long-term adverse health impacts, making immunotherapy decisions difficult. This study aimed to explore patients and their partners' views when considering whether to commence adjuvant immunotherapy.

Methods: Focus groups and in-depth interviews were conducted among adults with resected stage 3 melanoma and their partners between August 2019 and April 2020. Factors important to adjuvant immunotherapy decision making were explored. Recruitment continued until data saturation, with thematic analysis performed.

Results: Thirty-six participants were recruited across two cohorts, including 24 patients (mean age 65 years, 71% male), and 12 partners (mean age 69 years, 75% female). Twenty-two patients (92%) received adjuvant immunotherapy, two (8%) declined. Five patients (21%) ceased treatment early because of toxicity. Five themes about adjuvant immunotherapy were common to all participants: (1) life and death; (2) perceived risks and benefits; (3) seeking information; (4) healthcare team relationship; and (5) immunotherapy treatment considerations. Prolonging life was the primary consideration, with secondary concerns about treatment burden, timing, costs and efficacy.

Conclusions: This information can be used by clinicians to support melanoma treatment decision making.
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http://dx.doi.org/10.1007/s40271-021-00507-1DOI Listing
September 2021

Outcomes reported in evaluations of programs designed to improve health in Indigenous people.

Health Serv Res 2021 Mar 22. Epub 2021 Mar 22.

University of Sydney, Sydney, New South Wales, Australia.

Objective: To assess the outcomes reported and measured in evaluations of complex health interventions in Indigenous communities.

Data Sources: We searched all publications indexed in MEDLINE, PreMEDLINE, EMBASE, PsycINFO, EconLit, and CINAHL until January 2020 and reference lists from included papers were hand-searched for additional articles.

Study Design: Systematic review.

Data Collection/extraction Methods: We included all primary studies, published in peer-reviewed journals, where the main objective was to evaluate a complex health intervention developed specifically for an Indigenous community residing in a high-income country. Only studies published in English were included. Quantitative and qualitative data were extracted and summarized.

Principal Findings: Of the 3523 publications retrieved, 62 evaluation studies were included from Australia, the United States, Canada, and New Zealand. Most studies involved less than 100 participants and were mainly adults. We identified outcomes across 13 domains: clinical, behavioral, process-related, economic, quality of life, knowledge/awareness, social, empowerment, access, environmental, attitude, trust, and community. Evaluations using quantitative methods primarily measured outcomes from the clinical and behavioral domains, while the outcomes reported in the qualitative studies were mostly from the process-related and empowerment domains.

Conclusion: The outcomes from qualitative evaluations, which better reflect the impact of the intervention on participant health, remain different from the outcomes routinely measured in quantitative evaluations. Measuring the outcomes from qualitative evaluations alongside outcomes from quantitative evaluations could result in more relevant evaluations to inform decision making in Indigenous health.
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http://dx.doi.org/10.1111/1475-6773.13653DOI Listing
March 2021

Stakeholder perspectives on the implementation and impact of Indigenous health interventions: A systematic review of qualitative studies.

Health Expect 2021 Jun 17;24(3):731-743. Epub 2021 Mar 17.

Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.

Background: Evaluations of health interventions for Indigenous peoples rarely report outcomes that reflect participant and community perspectives of their experiences. Inclusion of such data may provide a fuller picture of the impact of health programmes and improve the usefulness of evaluation assessments.

Aim: To describe stakeholder perspectives and experiences of the implementation and impact of Indigenous health programmes.

Methods: We conducted a systematic review of qualitative studies evaluating complex health interventions designed for Indigenous communities in high-income countries. We searched 6 electronic databases (through to January 2020): MEDLINE, PreMEDLINE, Embase, PsycINFO, EconLit and CINAHL and hand-searched reference lists of relevant articles.

Results: From 28 studies involving 677 stakeholders (mostly clinical staff and participants), six main themes were identified: enabling engagement, regaining control of health, improving social health and belonging, preserving community and culture, cultivating hope for a better life, and threats to long-term programme viability.

Conclusion: The prominence of social, emotional and spiritual well-being as important aspects of the health journey for participants in this review highlights the need to reframe evaluations of health programmes implemented in Indigenous communities away from assessments that focus on commonly used biomedical measures. Evaluators, in consultation with the community, should consistently assess the capacity of health professionals to meet community needs and expectations throughout the life of the programme. Evaluations that include qualitative data on participant and community-level outcomes can improve decision-makers' understanding of the impact that health programmes have on communities.

Patient Or Public Contribution: This paper is a review of evaluation studies and did not involve patients or the public.
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http://dx.doi.org/10.1111/hex.13230DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8235882PMC
June 2021

Effectiveness of a multifaceted intervention to improve emergency department care of low back pain: a stepped-wedge, cluster-randomised trial.

BMJ Qual Saf 2021 Oct 10;30(10):825-835. Epub 2021 Mar 10.

Institute for Musculoskeletal Health, The University of Sydney and Sydney Local Health District, Sydney, New South Wales, Australia.

Background: Overuse of lumbar imaging is common in the emergency department (ED). Few trials have examined interventions to address this. We evaluated the effectiveness of a multifaceted intervention to implement guideline recommendations for low back pain in the emergency department.

Methods: We conducted a stepped-wedge, cluster-randomised trial in four EDs in New South Wales, Australia. After a 13-month control phase of usual care, the EDs received a multifaceted intervention to support guideline-endorsed care in a random order, based on a computer-generated random sequence, every 4 weeks over a 4-month period. All sites were followed up for at least 3 months. The primary outcome was the proportion of low back pain presentations receiving lumbar imaging. Secondary healthcare utilisation outcomes included prescriptions of opioid and non-opioid pain medicines, inpatient admissions, length of ED stay, specialist referrals and re-presentations. Clinician beliefs and knowledge about low back pain care were measured before and after the intervention. Patient-reported pain, disability, quality of life and satisfaction were measured at 1, 2 and 4 weeks post ED presentation.

Results: A total of 269 ED clinicians and 4625 episodes of care for low back pain (4491 patients) were included. The data did not provide clear evidence that the intervention reduced lumbar imaging (OR 0.77; 95% CI 0.47 to 1.26; p=0.29). It did reduce opioid use (OR 0.57; 95% CI 0.38 to 0.85; p=0.006) and improved clinicians' beliefs (mean difference (MD), 2.85; 95% CI 1.85 to 3.85; p<0.001; on a scale from 9 to 45) and knowledge about low back pain care (MD, 0.48; 95% CI 0.13 to 0.83; p<0.01; on a scale from 0 to 11). There was no difference in pain scores at 1-week follow-up (MD, 0.04; 95% CI -1.00 to 1.08; p=0.94; on a scale from 0 to 10). A similar trend was observed for all other patient-reported outcomes and time points. This study found no effect on the other secondary healthcare utilisation outcomes.

Conclusion: It is uncertain if a multifaceted intervention to implement guideline recommendations for low back pain care decreased lumbar imaging in the ED; however, it did reduce opioid prescriptions without adversely affecting patient outcomes. ACTRN12617001160325.
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http://dx.doi.org/10.1136/bmjqs-2020-012337DOI Listing
October 2021

Surgical Plating vs Closed Reduction for Fractures in the Distal Radius in Older Patients: A Randomized Clinical Trial.

JAMA Surg 2021 Mar;156(3):229-237

Gosford and Wyong Hospitals, Gosford, Australia.

Importance: The burden of injury and costs of wrist fractures are substantial. Surgical treatment became popular without strong supporting evidence.

Objective: To assess whether current surgical treatment for displaced distal radius fractures provided better patient-reported wrist pain and function than nonsurgical treatment in patients 60 years and older.

Design, Setting, And Participants: In this multicenter randomized clinical trial and parallel observational study, 300 eligible patients were screened from 19 centers in Australia and New Zealand from December 1, 2016, until December 31, 2018. A total of 166 participants were randomized to surgical or nonsurgical treatment and followed up at 3 and 12 months by blinded assessors. Those 134 individuals who declined randomization were included in a parallel observational cohort with the same treatment options and follow-up. The primary analysis was intention to treat; sensitivity analyses included as-treated and per-protocol analyses.

Intervention: Surgical treatment was open reduction and internal fixation using a volar-locking plate (VLP). Nonsurgical treatment was closed reduction and cast immobilization (CR).

Main Outcomes And Measures: The primary outcome was the Patient-Rated Wrist Evaluation score at 12 months. Secondary outcomes were Disabilities of Arm, Shoulder, and Hand questionnaire score, health-related quality of life, pain, major complications, patient-reported treatment success, bother with appearance, and therapy use.

Results: In the 300 study participants (mean [SD] age, 71.2 [7.5] years; 269 [90%] female; 166 [81 VLP and 85 CR] in the randomized clinical trial sample and 134 [32 VLP and 102 CR] in the observational sample), no clinically important between-group difference in 12-month Patient-Rated Wrist Evaluation scores (mean [SD] score of 19.8 [21.1] for VLP and 21.5 [24.3] for CR; mean difference, 1.7 points; 95% CI -5.4 to 8.8) was observed. No clinically important differences were found in quality of life, wrist pain, or bother at 3 and 12 months. No significant difference was found in total complications between groups (12 of 84 [14%] for the CR group vs 6 of 80 [8%] for the VLP group; risk ratio [RR], 0.53; 95% CI, 0.21-1.33). Patient-reported treatment success favored the VLP group at 12 months (very successful or successful: 70 [89%] vs 57 [70%]; RR, 1.26; 95% CI, 1.07-1.48; P = .005). There was greater use of postoperative physical therapy in the VLP group (56 [72%] vs 44 [54%]; RR, 1.32; 95% CI, 1.04-1.69; P = 0.02).

Conclusions And Relevance: This randomized clinical trial found no between-group differences in improvement in wrist pain or function at 12 months from VLP fixation over CR for displaced distal radius fractures in older people.

Trial Registration: http://anzctr.org.au identifier: ACTRN12616000969460.
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http://dx.doi.org/10.1001/jamasurg.2020.5672DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7807386PMC
March 2021

A Text Messaging Intervention for Dietary Behaviors for People Receiving Maintenance Hemodialysis: A Feasibility Study of KIDNEYTEXT.

Am J Kidney Dis 2021 07 7;78(1):85-95.e1. Epub 2021 Jan 7.

Westmead Clinical School, The University of Sydney, Sydney, NSW, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia; Department of Renal Medicine, Westmead Hospital, Sydney, NSW, Australia.

Rationale & Objective: An important component of hemodialysis management involves delivery of complex dietary recommendations. The aim of this study was to determine the feasibility of a mobile phone text-message intervention to improve dietary behavior in people undergoing hemodialysis.

Study Design: Six-month randomized feasibility study.

Setting & Participants: Patients receiving maintenance hemodialysis across 2 health districts in Sydney, Australia.

Interventions: Participants randomized to the intervention received 3 text messages per week in addition to standard dietary care for 6 months. The usual care group received standard dietary care.

Outcomes: The primary outcomes were feasibility measured using recruitment and retention rates, acceptability of the intervention, and adherence to dietary recommendations. Secondary exploratory outcomes included information on certain clinical parameters related to dietary management of patients receiving maintenance hemodialysis.

Results: 130 people were recruited; 48% of eligible patients (130 of 272) consented to participate, and 88% (115 of 130) completed the study. Semistructured interviews evaluating acceptability identified 5 themes: clear and comprehensive, engaging with consistent and relevant content, maintaining attention with timely reminders, sustaining interest through ongoing care, and generic messages inadequate to prompt dietary change. There was no difference in adherence to dietary recommendations across treatment groups (odds ratio, 1.21 [95% CI, 0.55-2.72]; P = 0.6). Secondary exploratory analyses suggested reductions in dietary intake of single nutrients (potassium, phosphorus, sodium, protein), interdialytic weight gain, and phosphate binder use among intervention participants compared with participants assigned to standard care.

Limitations: Our feasibility study was of short duration. Adherence was based on self-reported data. Generalizability to populations receiving maintenance hemodialysis outside of an urban, Australian setting is unknown.

Conclusions: A simple mobile phone text-messaging intervention was feasible and acceptable to patients. Further investigation of the impact on patient-reported and clinical outcomes is warranted.

Funding: Funding for the study was provided by a Sydney Medical School Foundation Grant and the Centre for Transplant and Renal Research at Westmead Hospital.

Trial Registration: Registered at Australian New Zealand Clinical Trials Registry with study number ACTRN12617001084370.
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http://dx.doi.org/10.1053/j.ajkd.2020.11.015DOI Listing
July 2021

People with Parkinson's disease are more willing to do additional exercise if the exercise program has specific attributes: a discrete choice experiment.

J Physiother 2021 Jan 24;67(1):49-55. Epub 2020 Dec 24.

School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, Australia.

Question: What specific attributes of exercise programs influence the preferences of people with Parkinson's disease for additional exercise compared with their current practice? What trade-offs are participants willing to make between exercise program attributes?

Design: Discrete choice experiment.

Participants: Five hundred and forty people with Parkinson's disease.

Intervention: Participants decided whether they would adopt a hypothetical program in addition to their current exercise routine.

Outcome Measures: Exercise program attributes included: type, number of sessions/week, location, travel time/session, delivery mode, supervisor's expertise, extent of supervision, benefits for physical and psychological function and out-of-pocket cost/session.

Results: Participants preferred additional exercise when programs: provided physical (OR 1.85, 95% CI 1.61 to 2.13) or psychological (OR 1.45, 95% CI 1.26 to 1.67) benefit, involved less travel time (ORs 1.50 to 2.02) and were supervised by qualified professionals with Parkinson's disease expertise (ORs 1.51 to 1.91). Participants were most willing to add multimodal exercise to their exercise routine (ORs 2.01 to 2.19). Participants were less likely to prefer higher cost programs (OR 0.65, 95% CI 0.60 to 0.71, per AU$10 cost increase) or group sessions compared to individual sessions (OR 0.72, 95% CI 0.54 to 0.96). Men preferred adding strengthening exercises (OR 2.00, 95% CI 1.23 to 3.26) and women had a preference against adding aerobic exercise (OR 0.33, 95% CI 0.15 to 0.73). Participants not currently exercising were more likely to prefer adding exercise compared with those already exercising 300 minutes weekly (OR 1.74, 95% CI 1.15 to 2.63).

Conclusion: People with Parkinson's disease were more willing to participate in exercise programs that cost less, involve less travel, provide physical or psychological benefits and are supervised by qualified professionals. To enable more people with Parkinson's disease to exercise, health services should provide programs addressing these factors and account for sex differences.
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http://dx.doi.org/10.1016/j.jphys.2020.12.007DOI Listing
January 2021

Health-Related Quality of Life in People Across the Spectrum of CKD.

Kidney Int Rep 2020 Dec 3;5(12):2264-2274. Epub 2020 Oct 3.

College of Medicine and Public Health, Flinders University, Adelaide, Australia.

Introduction: People with chronic kidney disease (CKD) experience reduced quality of life (QoL) because of the high symptom and treatment burden. Limited data exist on the factors associated with overall and domain-specific QoL across all CKD stages.

Methods: Using data from a prospective, multinational study (Australia, New Zealand, Canada, and Spain) in 1696 participants with CKD, we measured overall and domain-specific QoL (pain, self-care, activity, mobility, anxiety/depression) using the EuroQoL, 5 dimension, 3 level. Multivariable linear regression and logistic modeling were used to determine factors associated with overall and domain-specific QoL.

Results: QoL for patients with CKD stages 3 to 5 (n = 787; mean, 0.81; SD, 0.20) was higher than in patients on dialysis (n = 415; mean, 0.76; SD, 0.24) but lower than in kidney transplant recipients (n = 494; mean, 0.84; SD, 0.21). Factors associated with reduced overall QoL (β [95% confidence intervals]) included being on dialysis (compared with CKD stages 3-5: -0.06 [-0.08 to -0.03]), female sex (-0.03 [-0.05 to -0.006]), lower educational attainment (- 0.04 [-0.06 to -0.02), lacking a partner (-0.04 [-0.06 to -0.02]), having diabetes (-0.05 [-0.07 to -0.02]), history of stroke (-0.09 [-0.13 to -0.05]), cardiovascular disease (-0.06 [-0.08 to -0.03]), and cancer (-0.03 [-0.06 to -0.009]). Pain (43%) and anxiety/depression (30%) were the most commonly affected domains, with dialysis patients reporting decrements in all 5 domains. Predictors for domain-specific QoL included being on dialysis, presence of comorbidities, lower education, female sex, and lack of a partner.

Conclusions: Being on dialysis, women with CKD, those with multiple comorbidities, lack of a partner, and lower educational attainment were associated with lower QoL across all stages of CKD.
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http://dx.doi.org/10.1016/j.ekir.2020.09.028DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7710842PMC
December 2020

What Matters 2 Adults: a study protocol to develop a new preference-based wellbeing measure with Aboriginal and Torres Strait Islander adults (WM2Adults).

BMC Public Health 2020 Nov 17;20(1):1739. Epub 2020 Nov 17.

Menzies School of Health Research, Charles Darwin University, Darwin, Australia.

Background: Understandings of health and wellbeing are culturally bound. Many Aboriginal and Torres Strait Islander people perceive wellbeing and quality of life (QOL) differently from the Western biomedical models of health underpinning existing QOL instruments. Any instrument to measure the wellbeing of Aboriginal and Torres Strait Islander people should be culturally appropriate and safe, include relevant dimensions, and be informed by their own values and preferences. Existing QOL instruments do not meet these standards. This study will generate a new preference-based wellbeing measure, WM2Adults, for Aboriginal and Torres Strait Islander adults, underpinned by their values and preferences.

Methods: A mixed methods approach will be used; we will employ decolonising methodologies, privilege Aboriginal and Torres Strait Islander voices and perspectives, and adopt a strengths-based approach rather than a deficit lens. Yarning Circles will be conducted with Aboriginal and Torres Strait Islander people across Australia. A candidate item pool will be developed from these data, on which psychometric analysis and validity testing will be undertaken to develop a descriptive system. Following finalisation of the descriptive system, wellbeing states will be valued using a quantitative preference-based approach (best-worst scaling) with a diverse sample of Aboriginal and Torres Strait Islander adults (n = 1000). A multinomial (conditional) logit framework will be used to analyse responses and generate a scoring algorithm for the new preference-based WM2Adults measure.

Discussion: The new wellbeing measure will have wide applicability in assessing the effectiveness and cost-effectiveness of new programs and services for Aboriginal and Torres Strait Islander people. Results will be disseminated through journals, conferences and policy forums, and will be shared with Aboriginal and Torres Strait Islander communities, organisations and research participants.
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http://dx.doi.org/10.1186/s12889-020-09821-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7672853PMC
November 2020

People considering exercise to prevent low back pain recurrence prefer exercise programs that differ from programs known to be effective: a discrete choice experiment.

J Physiother 2020 10;66(4):249-255

Institute for Musculoskeletal Health, Sydney Local Health District, Sydney, Australia; School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, Australia. Electronic address: https://twitter.com/CGMMaher.

Question: Do program and participant characteristics influence people's willingness to undertake exercise programs to prevent recurrence of low back pain?

Design: Discrete choice experiment.

Participants: Six hundred and forty-seven people with a recent history of low back pain.

Data Collection: Recruitment and participation occurred online. Participants were randomised to a block of 10 choice tasks, where the characteristics of the exercise program varied systematically. The characteristics that were presented for each exercise program were mode of exercise delivery, mode of supervision, setting, duration, weekly frequency, travel time, risk of recurrence, and costs. For each choice task, participants chose between no program or an exercise program with the characteristics as presented.

Data Analysis: Choices were analysed using mixed logit models. Latent class models examined preference heterogeneity and identified participant-level characteristics predictive of preferences.

Results: There appeared to be an underlying preference for exercise compared with no exercise, all else being equal. Preferences for programs were significantly influenced by the characteristics of the programs. Participants were less likely to choose exercise when programs were of a longer duration (OR 0.92, 95% CI 0.89 to 0.96 per extra month), but more likely to prefer programs offering greater reduction in the risk of recurrence of low back pain (OR 3.91, 95% CI 3.20 to 4.79 per 10% reduction in risk of recurrence). Preferences for engaging in exercise programs to prevent recurrent of low back pain were influenced by the characteristics of the programs themselves. However, there was mismatch between the preferred characteristics of exercise programs and the characteristics of known effective programs.

Conclusion: People who have had low back pain should be advised explicitly about which exercise programs reduce recurrence. Understanding low back pain patients' preferences can help inform the implementation of existing prevention programs and guide the design of new prevention programs.
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http://dx.doi.org/10.1016/j.jphys.2020.09.011DOI Listing
October 2020

Physical activity coaching for adults with mobility limitations: protocol for the ComeBACK pragmatic hybrid effectiveness-implementation type 1 randomised controlled trial.

BMJ Open 2020 11 3;10(11):e034696. Epub 2020 Nov 3.

Institute for Musculoskeletal Health, University of Sydney/ Sydney Local Health District, Sydney, New South Wales, Australia

Introduction: Mobility limitation is common and often results from neurological and musculoskeletal health conditions, ageing and/or physical inactivity. In consultation with consumers, clinicians and policymakers, we have developed two affordable and scalable intervention packages designed to enhance physical activity for adults with self-reported mobility limitations. Both are based on behaviour change theories and involve tailored advice from physiotherapists.

Methods And Analysis: This pragmatic hybrid effectiveness-implementation type 1 randomised control trial (n=600) will be undertaken among adults with self-reported mobility limitations. It aims to estimate the effects on physical activity of: (1) an enhanced 6-month intervention package (one face-to-face physiotherapy assessment, tailored physical activity plan, physical activity phone coaching from a physiotherapist, informational/motivational resources and activity monitors) compared with a less intensive 6-month intervention package (single session of tailored phone advice from a physiotherapist, tailored physical activity plan, unidirectional text messages, informational/motivational resources); (2) the enhanced intervention package compared with no intervention (6-month waiting list control group); and (3) the less intensive intervention package compared with no intervention (waiting list control group). The primary outcome will be average steps per day, measured with the over a 1-week period, 6 months after randomisation. Secondary outcomes include other physical activity measures, measures of health and functioning, individualised mobility goal attainment, mental well-being, quality of life, rate of falls, health utilisation and intervention evaluation. The hybrid effectiveness-implementation design (type 1) will be used to enable the collection of secondary implementation outcomes at the same time as the primary effectiveness outcome. An economic analysis will estimate the cost-effectiveness and cost-utility of the interventions compared with no intervention and to each other.

Ethics And Dissemination: Ethical approval has been obtained by Sydney Local Health District, Royal Prince Alfred Zone. Dissemination will be via publications, conferences, newsletters, talks and meetings with health managers.

Trial Registration Number: ACTRN12618001983291.
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http://dx.doi.org/10.1136/bmjopen-2019-034696DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7640503PMC
November 2020

Respondent Understanding in Discrete Choice Experiments: A Scoping Review.

Patient 2021 01 3;14(1):17-53. Epub 2020 Nov 3.

School of Population and Public Health, University of British Columbia, Vancouver, BC, Canada.

Introduction: Despite the recognised importance of participant understanding for valid and reliable discrete choice experiment (DCE) results, there has been limited assessment of whether, and how, people understand DCEs, and how 'understanding' is conceptualised in DCEs applied to a health context.

Objectives: Our aim was to identify how participant understanding is conceptualised in the DCE literature in a health context. Our research questions addressed how participant understanding is defined, measured, and used.

Methods: Searches were conducted (June 2019) in the MEDLINE, EMBASE, PsychINFO and Econlit databases, as well as hand searching. Search terms were based on previous DCE systematic reviews, with additional understanding keywords used in a proximity-based search strategy. Eligible studies were peer-reviewed journal articles in the field of health, related to DCE or best-worst scaling type 3 (BWS3) studies, and reporting some consideration or assessment of participant understanding. A descriptive analytical approach was used to chart relevant data from each study, including publication year, country, clinical area, subject group, sample size, study design, numbers of attributes, levels and choice sets, definition of understanding, how understanding was tested, results of the understanding tests, and how the information about understanding was used. Each study was categorised based on how understanding was conceptualised and used within the study.

Results: Of 306 potentially eligible articles identified, 31 were excluded based on titles and abstracts, and 200 were excluded on full-text review, resulting in 75 included studies. Three categories of study were identified: applied DCEs (n = 52), pretesting studies (n = 7) and studies of understanding (n = 16). Typically, understanding was defined in relation to either the choice context, such as attribute terminology, or the concept of choosing. Very few studies considered respondents' engagement as a component of understanding. Understanding was measured primarily through qualitative pretesting, rationality or validity tests included in the survey, and participant self-report, however reporting and use of the results of these methods was inconsistent.

Conclusions: Those conducting or using health DCEs should carefully select, justify, and report the measurement and potential impact of participant understanding in their specific choice context. There remains scope for research into the different components of participant understanding, particularly related to engagement, the impact of participant understanding on DCE validity and reliability, the best measures of understanding, and methods to maximise participant understanding.
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http://dx.doi.org/10.1007/s40271-020-00467-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7794102PMC
January 2021

Discrete Choice Experiments to Elicit Patient Preferences for Decision Making in Transplantation.

Transplantation 2021 05;105(5):960-967

Sydney School of Public Health, Faculty of Medicine and Health, The University of Sydney, Sydney, NSW, Australia.

Providing care for transplant recipients is challenging given the need to maintain optimal graft function and survival while managing the debilitating side effects and complications associated with immunosuppression including infection, cancer, new-onset diabetes mellitus, and cardiovascular disease. Given the complexity of treatment options and the uncertainty about long-term benefits and harms of treatment, understanding patient preferences and values are key to ensuring that clinical decisions take into consideration patient priorities to support shared decision making and self-management. Choice experiments are increasingly used to quantify patient and community preferences, including in the field of transplantation. Discrete choice experiments (DCEs) are a well-established, validated methodology used to elicit preferences for decision making in health and other settings. In transplantation, for example, DCEs have been used to elicit patient preferences for outcomes following kidney transplantation, to identify community preferences factors for organ allocation and in establishing core outcomes. This article provides an overview of the concepts and methods used in the design of DCEs and how patients' preferences can be applied in shared decision making in transplantation.
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http://dx.doi.org/10.1097/TP.0000000000003500DOI Listing
May 2021

Patients' and caregivers' expectations and experiences of remote monitoring for peritoneal dialysis: A qualitative interview study.

Perit Dial Int 2020 11 21;40(6):540-547. Epub 2020 Oct 21.

Department of Medicine, 2495University of Otago Christchurch, Christchurch, New Zealand.

Background: Peritoneal dialysis (PD) can offer more flexibility and independence compared with hemodialysis, yet uptake of PD remains low. Barriers to PD include the fear of dialyzing without medical assistance and uncertainty about recognizing and managing complications. There is increasing use of remote monitoring in automated peritoneal dialysis (APD), but little is known about its acceptability by patients and caregivers. We aimed to describe patients' and caregivers' expectations and experiences of remote monitoring for APD.

Methods: Qualitative study design, using semi-structured face-to-face interviews of patients who either receiving PD or were considered eligible for PD, and their caregivers. Transcripts were analyzed using thematic analysis.

Results: Of the 34 participants, 27 were patients and the remainder caregivers. Four themes (with subthemes) were identified reducing patient burden (seeking reassurance and shared responsibility, convenience and accuracy); strengthening partnerships in care (empowering knowledge and understanding, increased accountability to dialysis team); improving access to treatment (saving time and money, providing timely care and avoiding hospital); and preserving quality patient-provider interactions (enhancing face-to-face contact, clarifying expectations of access and use of data).

Conclusions: Remote monitoring may increase patient knowledge about their kidney disease and its treatment, encourage accountability to the clinical team, enhance partnerships with clinicians, and improve access to treatment and timely care. It is also important to ensure that remote monitoring does not replace face-to-face clinical contact with clinicians.
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http://dx.doi.org/10.1177/0896860820927528DOI Listing
November 2020
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