Patient navigation across the cancer care continuum: An overview of systematic reviews and emerging literature.

Patient navigation is a strategy for overcoming barriers to reduce disparities and to improve access and outcomes. The aim of this umbrella review was to identify, critically appraise, synthesize, and present the best available evidence to inform policy and planning regarding patient navigation across the cancer continuum. Systematic reviews examining navigation in cancer care were identified in the Cochrane Central Register of Controlled Trials (CENTRAL), PubMed, Embase, Cumulative Index of Nursing and Allied Health (CINAHL), Epistemonikos, and Prospective Register of Systematic Reviews (PROSPERO) databases and in the gray literature from January 1, 2012, to April 19, 2022. Data were screened, extracted, and appraised independently by two authors. The JBI Critical Appraisal Checklist for Systematic Review and Research Syntheses was used for quality appraisal. Emerging literature up to May 25, 2022, was also explored to capture primary research published beyond the coverage of included systematic reviews. Of the 2062 unique records identified, 61 systematic reviews were included. Fifty-four reviews were quantitative or mixed-methods reviews, reporting on the effectiveness of cancer patient navigation, including 12 reviews reporting costs or cost-effectiveness outcomes. Seven qualitative reviews explored navigation needs, barriers, and experiences. In addition, 53 primary studies published since 2021 were included. Patient navigation is effective in improving participation in cancer screening and reducing the time from screening to diagnosis and from diagnosis to treatment initiation. Emerging evidence suggests that patient navigation improves quality of life and patient satisfaction with care in the survivorship phase and reduces hospital readmission in the active treatment and survivorship care phases. Palliative care data were extremely limited. Economic evaluations from the United States suggest the potential cost-effectiveness of navigation in screening programs.

Further Evidence of Feasibility, Validity, and Reliability of Quality of Life-Aged Care Consumers: Evidence From Home-Based Care Settings.

OBJECTIVES: The Quality of Life-Aged Care Consumers (QOL-ACC) is an aged-care-specific preference-based instrument currently being rolled out in residential care across Australia as part of the aged care Quality Indicator program. This study aimed to provide a comprehensive assessment of the feasibility, reliability, and construct validity of the QOL-ACC in a large national sample of older adults receiving aged care services at home. METHODS: Older adults receiving in-home aged care services completed a survey including the QOL-ACC, Quality of Care Experience-ACC, adult social care outcome tool, EQ-5D-5L, and 2 global single item measures of health and quality of life. Feasibility was assessed by missing responses (≤5%) and ceiling/floor effects (≤15%). Construct validity was assessed by exploring the relationship between the QOL-ACC and other instruments (convergent validity) and its ability to discriminate varying levels of self-rated health and quality of life (known-group validity). RESULTS: A total of 802 respondents (mean age, 74.5 ± 6.3 years; 56.0% females) completed the survey. The QOL-ACC had no missing responses, no floor effects, and very low ceiling effect (3.5%) and demonstrated moderate correlation with adult social care outcome tool (r = 0.59, P < .001), EQ-5D-5L (r = 0.65, P < .001), EQ-VAS (r = 0.53, P < .001), and a lower correlation with the QCE-ACC (r = 0.41, P < .001). Respondents with poor self-rated health and quality of life had significantly lower preference-weighted scores on the QOL-ACC. CONCLUSIONS: The QOL-ACC demonstrated adequate feasibility, reliability, and construct validity in a large population of older people accessing government-subsidized aged care services at home. Further studies will explore the responsiveness of the QOL-ACC to aged-care-specific interventions both in home and residential aged care settings.

Exploring older people's understanding of the QOL-ACC, a new preference-based quality-of-life measure, for quality assessment and economic evaluation in aged care: the impact of cognitive impairment and dementia.

BACKGROUND: Quality-of-life is an essential outcome for quality assessment and economic evaluation in health and social care. The-Quality-of-Life - Aged Care Consumers (QOL-ACC) is a new preference-based quality-of-life measure, psychometrically validated with older people in aged care. More evidence is needed to inform the self-report reliability of the QOL-ACC in older people with varying levels of cognitive impairment and dementia. METHODS: A think-aloud protocol was developed and applied with older residents. The Mini Mental State Examination (MMSE) was applied to assign participants to no cognitive impairment (NCI - MMSE score ≥ 27) and cognitive impairment (MMCI - MMSE score < 27) subgroups. Three independent raters utilised a Tourangeau survey response model-based framework to identify response issues. Data were compared across cognition subgroups and synthesized using a 'traffic light' grading to classify frequency and type of response issues. Gradings were utilised to assess self-report reliability according to different levels of cognitive impairment. RESULTS: Qualitative data from 44 participants (NCI = 20, MMCI = 24) were included for analysis. Response issues were more evident in the cognitive impairment subgroup than the no cognitive impairment subgroup. All participants who received a 'red' grade had an MMSE score of < 20 and 66% of 'amber' grades occurred in the cognitive impairment subgroup. CONCLUSIONS: The QOL-ACC is able to be completed reliably by older residents with an MMSE score > 17. Future research is needed to assess the generalisability of these findings to other preference-based quality of life instruments and for older people in other care settings including health systems.

Reliability of the quality of life-aged care consumers (QOL-ACC) and EQ-5D-5L among older people using aged care services at home.

PURPOSE: The Quality of Life-Aged Care Consumers (QOL-ACC), a valid preference-based instrument, has been rolled out in Australia as part of the National Quality Indicator (QI) program since April 2023 to monitor and benchmark the quality of life of aged care recipients. As the QOL-ACC is being used to collect quality of life data longitudinally as one of the key aged care QI indicators, it is imperative to establish the reliability of the QOL-ACC in aged care settings. Therefore, we aimed to assess the reliability of the QOL-ACC and compare its performance with the EQ-5D-5L. METHODS: Home care recipients completed a survey including the QOL-ACC, EQ-5D-5L and two global items for health and quality of life at baseline (T1) and 2 weeks later (T2). Using T1 and T2 data, the Gwet's AC2 and intra-class correlation coefficient (ICC) were estimated for the dimension levels and overall scores agreements respectively. The standard error of measurement (SEM) and the smallest detectable change (SDC) were also calculated. Sensitivity analyses were conducted for respondents who did not change their response to global item of quality of life and health between T1 and T2. RESULTS: Of the 83 respondents who completed T1 and T2 surveys, 78 respondents (mean ± SD age, 73.6 ± 5.3 years; 56.4% females) reported either no or one level change in their health and/or quality of life between T1 and T2. Gwet's AC2 ranged from 0.46 to 0.63 for the QOL-ACC dimensions which were comparable to the EQ-5D-5L dimensions (Gwet's AC2 ranged from 0.52 to 0.77). The ICC for the QOL-ACC (0.85; 95% CI, 0.77-0.90) was comparable to the EQ-5D-5L (0.83; 95% CI, 0.74-0.88). The SEM for the QOL-ACC (0.08) was slightly smaller than for the EQ-5D-5L (0.11). The SDC for the QOL-ACC and the EQ-5D-5L for individual subjects were 0.22 and 0.30 respectively. Sensitivity analyses stratified by quality of life and health status confirmed the base case results. CONCLUSIONS: The QOL-ACC demonstrated a good test-retest reliability similar to the EQ-5D-5L, supporting its repeated use in aged care settings. Further studies will provide evidence of responsiveness of the QOL-ACC to aged care-specific interventions in aged care settings.

Health-related quality of life and subjective well-being among children aged 9-12 years in Shandong Province, China.

PURPOSE: To investigate the health-related quality of life (HRQoL) and subjective well-being (SWB) of children aged 9-12 years in eastern China, and examine concordance within child self-reported and parent proxy-assessed. METHODS: Data was collected from 9 to 12 years old children (including their parents) in Shandong Province in 2018. Participants self-completed a hard-copy questionnaire including Child Health Utility 9D (CHU9D), Pediatric Quality of Life Inventory (PedsQL)™ 4.0 Short Form 15 Generic Core Scales (hereafter the PedsQL™), Student's Life Satisfaction Scale (SLSS), as well as information on socio-demographic characteristics and self-report health status. Spearman's correlation coefficients and the difference between sub-groups were conducted to assess and compare the agreement on HRQoL and SWB instruments. Exploratory factor analysis (EFA) was used to ascertain the number of unique underlying latent factors that were associated with the items covered by the two generic HRQoL and the SWB instruments. The concordance of child self-reported and parent proxy-assessed was analyzed using weighted kappa coefficient and Bland-Altman plots. RESULTS: A total of 810 children and 810 parents were invited to participate in the survey. A valid sample of 799 (98.6%) children and 643 (79.4%) parents completed the questionnaire. The child self-reported mean scores were CHU9D = 0.87, PedsQL™ = 83.47, and SLSS = 30.90, respectively. The parent proxy-assessed mean scores were PedsQL™ = 68.61 and SLSS = 31.23, respectively. The child self-reported PedsQL™ was moderately correlated with the CHU9D (r = 0.52). There was a weak correlation between CHU9D and SLSS (r = 0.27). The EFA result found 3 factors whilst seven SLSS items grouped into a standalone factor (factor 3), and the nine dimensions of CHU9D shared two common factors with the PedsQL™ (factor 1 and factor 2). A low level of concordance was observed across all comparisons and in all domains (weighted kappa < 0.20) between parents and their children. Furthermore, a high level of discordance was observed between child self-reported and father proxy-assessed. CONCLUSIONS: CHU9D and PedsQL™ instruments have a higher agreement in measuring the HRQoL in children. CHU9D/PedsQL™ and SLSS instruments showed a low agreement and EFA result suggested that measuring SWB in children potentially may provide further information, which might be overlooked by using HRQoL instruments exclusively. Concordance of child self-reported and parent proxy-assessed was poor. Overall, mother-child concordance was higher than father-child concordance.

Assessing Outcomes for Cost-Utility Analysis in Children and Adolescents With Mental Health Problems: Are Multiattribute Utility Instruments Fit for Purpose?

OBJECTIVES: The objective of this study was to compare the concurrent and construct validity, as well as the sensitivity of 5 multiattribute utility instruments (MAUIs), including the Assessment of Quality of Life-6D (AQoL-6D), EQ-5D-Y, Health Utilities Index (HUI)-2 and HUI-3, and the Child Health Utility 9D, 1 generic pediatric quality of life instrument, with 3 routinely collected outcome measures in Australian mental health services (Strengths and Difficulties Questionnaire, Clinical Global Assessment Scale [CGAS] and the Health of the Nation Outcome Scale for Children and Adolescents) in children and adolescents diagnosed of internalizing (eg, anxiety/depression), externalizing (eg, attention deficit hyperactivity disorder/conduct disorders), and trauma/stress related mental disorders. METHODS: A cross-sectional survey of measures, including demographic and basic treatment information, in children/adolescents recruited via 5 child and youth mental health services in Queensland and Victoria, Australia. Measures were either proxy or self-report completed, the CGAS and the Health of the Nation Outcome Scale for Children and Adolescents were clinician completed. RESULTS: The sample included 426 participants and had a mean age of 13.7 years (range 7-18 years). Utilities (as calculated from MAUIs) were generally lower in older adolescents and those with internalizing disorders. All MAUIs and self-reported clinical measures significantly correlated with each other (absolute correlation range 0.40-0.90), with the AQoL-6D showing generally higher levels of correlations. Correlations between the MAUIs and clinician/proxy-reported measures were weak, regardless of diagnosis (absolute correlation range 0.09-0.47). Generally, EQ-5D-Y, HUI-2, and AQoL-6D were more sensitive than Child Health Utility 9D and HUI-3 when distinguishing between different severities according to clinician-assessed CGAS (effect size range 0.17-0.84). CONCLUSIONS: The study showed that the commonly used MAUIs had good concurrent and construct validity compared with routinely used self-complete measures but poor validity when compared with clinician/proxy-completed measures. These findings generally held across different diagnoses.

How do older adults receiving aged care services understand and respond to the EQ-5D-5L? A think-aloud study in residential care.

PURPOSE: The EQ-5D-5L is a preference-based instrument for measuring and valuing health-related quality of life (HRQoL). The EQ-5D-5L has been used extensively in economic evaluation, including in aged care. However, older adults' understanding of the EQ-5D-5L has not been comprehensively investigated to date. This research aimed to assess older adults' understanding of the EQ-5D-5L using a think-aloud protocol with two cognition groups: no cognitive impairment and mild/moderate cognitive impairment. METHODS: Participants' cognition was assessed using the Standardised Mini-Mental State Examination (SMMSE). Face-to face interviews were conducted with concurrent and retrospective think-aloud encouraged through verbal probing. Audio recordings were transcribed, and qualitative analysis, informed by the Tourangeau four-stage Response Model (comprehension, retrieval, decision process, response process) was conducted in NVivo. RESULTS: In total, 46 older adults (age 65 +) were recruited from 10 residential care facilities across South Australia (n = 25 no cognitive impairment, n = 21 mild/moderate cognitive impairment). Comprehension, retrieval, judgement and response mapping issues were common across all cognition levels and EQ-5D-5L dimensions. The two dimensions resulting in the most response issues were usual activities and personal care. CONCLUSION: Older adults may bring a different understanding to the EQ-5D-5L descriptive system than that expected given testing with general population samples. Dimension descriptors that are more relevant to this population may facilitate responses that better align with the underlying EQ-5D-5L concept model.

Feasibility of self-reported health related quality of life assessment with older people in residential care: insights from the application of eye tracking technology.

PURPOSE: Increasingly there are calls to routinely assess the health-related quality of life (HRQoL) of older people receiving aged care services, however the high prevalence of dementia and cognitive impairment remains a challenge to implementation. Eye-tracking technology facilitates detailed assessment of engagement and comprehension of visual stimuli, and may be useful in flagging individuals and populations who cannot reliably self-complete HRQoL instruments. The aim of this study was to apply eye-tracking technology to provide insights into self-reporting of HRQoL among older people in residential care with and without cognitive impairment. METHODS: Residents (n = 41), recruited based on one of three cognition subgroups (no, mild, or moderate cognitive impairment), completed the EQ-5D-5L on a computer with eye tracking technology embedded. Number and length of fixations (i.e., eye gaze in seconds) for key components of the EQ-5D-5L descriptive system were calculated. RESULTS: For all dimensions, participants with no cognitive impairment fixated for longer on the Area of Interest (AOI) for the response option they finally chose, relative to those with mild or moderate cognitive impairment. Participants with cognitive impairment followed similar fixation patterns to those without. There was some evidence that participants with cognitive impairment took longer to complete and spent relatively less time attending to the relevant AOIs, but these differences did not reach statistical significance generally. CONCLUSIONS: This exploratory study applying eye tracking technology provides novel insights and evidence of the feasibility of self-reported HRQoL assessments in older people in aged care settings where cognitive impairment and dementia are highly prevalent.

A scoping review of the use of visual tools and adapted easy-read approaches in Quality-of-Life instruments for adults.

PURPOSE: Self-Reporting using traditional text-based Quality-of-Life (QoL) instruments can be difficult for people living with sensory impairments, communication challenges or changes to their cognitive capacity. Adapted communication techniques, such as Easy-Read techniques, or use of pictures could remove barriers to participation for a wide range of people. This review aimed to identify published studies reporting adapted communication approaches for measuring QoL, the methodology used in their development and validation among adult populations. METHODS: A scoping review of the literature using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews checklist was undertaken. RESULTS: The initial search strategy identified 13,275 articles for screening, with 264 articles identified for full text review. Of these 243 articles were excluded resulting in 21 studies for inclusion. The majority focused on the development of an instrument (12 studies) or a combination of development with some aspect of validation or psychometric testing (7 studies). Nineteen different instruments were identified by the review, thirteen were developed from previously developed generic or condition-specific quality of life instruments, predominantly aphasia (7 studies) and disability (4 studies). Most modified instruments included adaptations to both the original questions, as well as the response categories. CONCLUSIONS: Studies identified in this scoping review demonstrate that several methods have been successfully applied e.g. with people living with aphasia post-stroke and people living with a disability, which potentially could be adapted for application with more diverse populations. A cohesive and interdisciplinary approach to the development and validation of communication accessible versions of QOL instruments, is needed to support widespread application, thereby reducing reliance on proxy assessors and promoting self-assessment of QOL across multiple consumer groups and sectors.

The Influence of Substance Use on Traumatic Brain Injury Recovery and Rehabilitation Outcomes: The Outcome-ABI Study.

OBJECTIVE: This study characterized substance use (alcohol, illicit drugs, amphetamines) in patients with traumatic brain injury (TBI) receiving rehabilitation to determine potential benefit of rehabilitation and whether substance use influenced outcomes in moderate-severe TBI. DESIGN: Prospective, longitudinal study of adults with moderate or severe TBI receiving inpatient rehabilitation. SETTING: Specialist-staffed acquired brain injury rehabilitation center in Melbourne, Australia. PARTICIPANTS: A total of 153 consecutive inpatients with TBI admitted between January 2016 and December 2017 (24 months). INTERVENTIONS: All inpatients with TBI (n=153) received specialist-provided brain injury rehabilitation in accordance with evidence-based guideline care at one 42-bed rehabilitation center. MAIN OUTCOME MEASURES: Data were collected at time of TBI, upon rehabilitation admission, and discharge and 12 months' post-TBI. Recovery was measured by posttraumatic amnesia posttraumatic amnesia length-days and change in Glasgow Coma Scale (admission-discharge). Functional independence was measured on the FIM, Functional Assessment Measure, and Mayo Portland Adaptability Index. Quality of life (QOL) was measured on the EuroQOL-5D-5L and Quality of Life After Brain Injury (QOLIBRI) instruments. RESULTS: Inpatients with history of illicit drug use (n=54) reported lower QOL and adjustment at 12 months' post-TBI compared with those with no history (QOLIBRI social relationships: ratio of means=0.808, P=.028; Mayo Portland Adaptability Index adjustment: incidence rate ratio, 1.273; P=.032). Amphetamine use at time of injury (n=10) was associated with quicker recovery (posttraumatic amnesia length-days: incidence rate ratio, 0.173; P<.01); however, lower QOL at 12 months post-TBI was noted in those with a history of amphetamine use (n=34) compared with those without (QOLIBRI bothered feelings: ratio of means, 0.489, P=.036). CONCLUSIONS: All participants made improvements with rehabilitation post-TBI; however, a history of substance use was associated with lower reported 12-month QOL. These findings add insight to the associations between substance use and acute recovery, potentially suggestive of a short-term recovery-promoting effect of amphetamines but highlighting the importance of rehabilitation to address long-term sequalae.

Study protocol for ELders AT Ease (ELATE): a cluster randomised controlled trial of cognitive behaviour therapy to reduce depressive symptoms in aged care residents.

BACKGROUND: This protocol describes a study of the effectiveness of cognitive behaviour therapy (CBT) for reducing depressive symptoms in older adults living in residential aged care (RAC) facilities in Australia. Depressive symptoms are highly prevalent in this population, yet the benefits of CBT for reducing such symptoms in RAC facilities have not been widely investigated. Elders at Ease (ELATE) is a 16-session CBT intervention designed for implementation in RAC facilities. The intervention includes cognitive, behavioural and reminiscence strategies and is delivered by mental health trainees (MHTs) in collaboration with RAC facility staff and residents' family. METHODS AND ANALYSIS: ELATE will be evaluated using a cluster randomised trial comparing outcomes for residents who participate in the intervention with those living in usual care control facilities. The participants are RAC residents aged 65 years or above, with depressive symptoms (Patient Health Questionnaire-2 ≥ 3) and normal cognition or mild cognitive impairment (Standardised Mini Mental Status Examination ≥ 21). They are assessed at four time points: baseline prior to randomisation (T1), mid-treatment (T2; 2.5 months post randomisation), post-treatment (T3; 5 months post-randomisation) and 3-month follow-up (T4; 8 months post randomisation). The primary outcome is change in depressive symptoms between T1 and T3. Secondary outcomes are depressive symptoms at T4, anxiety, suicide ideation, sleep problems, quality of life, staff and family knowledge of late-life depression, stress levels and efficacy in caring for residents, and MHT levels of geropsychology competencies. Residents receiving the intervention are hypothesised to report a greater decrease in depressive symptoms between T1 and T3 compared to residents receiving usual care. The primary analysis is a regression, clustered over site to account for correlated readings, and independent variables are condition and depressive symptoms at T1. A cost-utility analysis is also undertaken. DISCUSSION: ELATE is a comprehensive CBT intervention for reducing depressive symptoms in RAC residents. It is designed to be implemented in collaboration with facility staff and residents' families, individually tailored to residents with normal cognition to mild cognitive impairment and delivered by trainee therapists. ELATE offers a model that may be widely applicable across the RAC sector. TRIAL REGISTRATION: Trial registered with the Australian and New Zealand Clinical Trial Registry (ANZCTR) Number ACTRN12619001037190, prospectively registered on 22 July 2019.

Exploring the role of a facilitator in supporting family carers when embedding the iSupport for Dementia programme in care services: A qualitative study.

AIMS: To explore stakeholders' perceptions of a facilitator's role in supporting carers when embedding iSupport for Dementia psychoeducation program, in care services. METHODS: A qualitative descriptive study design was applied. Data were collected from workshops and interviews with carers of people living with dementia (PLWD)and with health and social care professionals from two tertiary hospitals and two community aged care organisations across three Australian states between October 2021 and March 2022. A thematic analysis was used to analyse data. The COREQ guideline was followed to report our findings. RESULTS: A total of 30 family carers and 45 health and social care professionals participated in the study. Three main themes and seven subthemes were identified from the data. We described the main themes as (1) the facilitator's role at the time of dementia diagnosis, (2) the facilitator's role throughout the everyday dementia care journey and (3) the facilitator's role during transition moments. CONCLUSIONS: Caring for family members with dementia is demanding and stressful for carers. Embedding a facilitator-enabled iSupport for Dementia program in hospital and community aged care settings has the potential to mitigate sources of stress associated with care recipient factors, carer factors and care service factors, and improve the health and well-being of carers and those for whom they care. RELEVANCE TO CLINICAL PRACTICE: Our findings will inform the establishment of iSupport facilitators appointed by dementia care providers in hospital and community care settings and help determine their roles and responsibilities in delivering the iSupport program. Our findings relate to nurse-led and coordinated dementia care in hospital and community aged care settings. PATIENT OR PUBLIC CONTRIBUTION: This study was co-designed with stakeholders from two aged care organisations and two tertiary hospitals. The study participants were staff employed by these organisations and carers of PLWD who were service users.

What Constitutes Preferred Long-Term Care Provided in Residential Aged Care Facilities? An Empirical Comparison of the Preferences of the General Population, Residents, and Family Members.

OBJECTIVES: Relatively few studies to date have examined the preferences of members of the general population as potential future consumers of long-term aged care services. This study aimed to use discrete choice experiment methodology to compare the preferences of 3 groups: the general population, residents, and family members of people living in long-term aged care. METHODS: A total of 6 salient attributes describing the physical and psychosocial care in long-term residential aged care were drawn from qualitative research with people with a lived experience of aged care and were used to develop the discrete choice experiment questionnaire. The 6 attributes included: the level of time care staff spent with residents, homeliness of shared spaces, the homeliness of their own rooms, access to outside and gardens, frequency of meaningful activities, and flexibility with care routines. The questionnaire was administered to 1243 respondents including consumers (residents [n = 126], family member carers [n = 416]), and members of the general population (n = 701). RESULTS: For both the general population and resident samples, having their own room feeling "home-like" exhibited the largest impact upon overall preferences. For the family member sample, care staff being able to spend enough time exhibited the largest impact. Tests of poolability indicated that the resident and general population samples estimates could be pooled. The null hypothesis of equal parameters between the groups was rejected for the family members, indicating significant differences in preferences relative to the resident and the general population samples. CONCLUSIONS: This study illustrates that preferences for residential aged care delivery may vary depending upon perspective and experience.

A Systematic Review of International Guidance for Self-Report and Proxy Completion of Child-Specific Utility Instruments.

OBJECTIVES: This study aimed to identify and summarize published guidance and recommendations for child self- and proxy assessment of existing child-specific instruments of health-related quality of life (HRQoL) that are accompanied by utilities. METHODS: A total of 9 databases plus websites of (1) health technology assessment and health economics outcomes research organizations and (2) instrument developers were systematically searched. Studies were included if they reported guidance for child self- and proxy assessment for child populations (0-18 years old). Three reviewers independently screened titles, abstracts, and full-text reviews against the inclusion criteria. Key features of the guidance identified were summarized. RESULTS: A total of 19 studies met the inclusion criteria. In general, journal articles provided little guidance on child self- and proxy assessment, with the majority focused on instrument development and psychometric performance more broadly. Instrument developers' websites provided more guidance for child self- and proxy reports with specific guidance found for the EQ-5D-Y and the Pediatric Quality of Life Inventory. This guidance included the minimum age for self-report and mode of administration; recommended proxy types, age range of child for whom proxy report can be completed, and target population; and recall period. Websites of leading organizations provided general guidance on HRQoL evaluation in children but lacked specific guidance about self- and proxy completion. CONCLUSIONS: EQ-5D-Y and Pediatric Quality of Life Inventory developers' websites provided the most comprehensive guidance for self-report and proxy report of their respective instruments. More evidence is required for developing best practice guidance on why, when, and how to use self- and proxy reports in assessing HRQoL in child populations.

Long-term effect of additional rehabilitation following botulinum toxin-A on upper limb activity in chronic stroke: the InTENSE randomised trial.

BACKGROUND: It is common for people with persistent spasticity due to a stroke to receive an injection of botulinum toxin-A in the upper limb, however post-injection intervention varies. AIM: To determine the long-term effect of additional upper limb rehabilitation following botulinum toxin-A in chronic stroke. METHOD: An analysis of long-term outcomes from national, multicenter, Phase III randomised trial with concealed allocation, blinded measurement and intention-to-treat analysis was carried out. Participants were 140 stroke survivors who were scheduled to receive botulinum toxin-A in any muscle(s) that cross the wrist because of moderate to severe spasticity after a stroke greater than 3 months ago, who had completed formal rehabilitation and had no significant cognitive impairment. Experimental group received botulinum toxin-A plus 3 months of evidence-based movement training while the control group received botulinum toxin-A plus a handout of exercises. Primary outcomes were goal attainment (Goal Attainment Scale) and upper limb activity (Box and Block Test) at 12 months (ie, 9 months beyond the intervention). Secondary outcomes were spasticity, range of motion, strength, pain, burden of care, and health-related quality of life. RESULTS: By 12 months, the experimental group scored the same as the control group on the Goal Attainment Scale (MD 0 T-score, 95% CI -5 to 5) and on the Box and Block Test (MD 0.01 blocks/s, 95% CI -0.01 to 0.03). There were no differences between groups on any secondary outcome. CONCLUSION: Additional intensive upper limb rehabilitation following botulinum toxin-A in chronic stroke survivors with a disabled upper limb is not more effective in the long-term. TRIAL REGISTRATION: ACTRN12615000616572 (12/06/2015).

Cost-utility analysis of breast reduction surgery for women with symptomatic breast hypertrophy.

OBJECTIVE: To assess the cost-effectiveness of breast reduction surgery for women with symptomatic breast hypertrophy in Australia. DESIGN: Cost-utility analysis of data from a prospective cohort study. SETTING, PARTICIPANTS: Adult women with symptomatic breast hypertrophy assessed for bilateral breast reduction at the Flinders Medical Centre, a public tertiary hospital in Adelaide, April 2007 - February 2018. The control group included women with breast hypertrophy who had not undergone surgery. MAIN OUTCOME MEASURES: Health care costs (for the surgical admission and other related hospital costs within 12 months of surgery) and SF-6D utility scores (measure of health-related quality of life) were used to calculate incremental costs per quality-adjusted life-year (QALY) gained over 12 months, extrapolated to a 10-year time horizon. RESULTS: Of 251 women who underwent breast reduction, 209 completed the baseline and at least one post-operation assessment (83%; intervention group); 124 of 350 invited women waiting for breast reduction surgery completed the baseline and 12-month assessments (35%; control group). In the intervention group, the mean SF-6D utility score increased from 0.313 (SD, 0.263) at baseline to 0.626 (SD, 0.277) at 12 months; in the control group, it declined from 0.296 (SD, 0.267) to 0.270 (SD, 0.257). The mean QALY gain was consequently greater for the intervention group (adjusted difference, 1.519; 95% CI, 1.362-1.675). The mean hospital cost per patient was $11 857 (SD, $4322), and the incremental cost-effectiveness ratio (ICER) for the intervention was $7808 per QALY gained. The probability of breast reduction surgery being cost-effective was 100% at a willingness-to-pay threshold of $50 000 per QALY and 88% at $28 033 per QALY. CONCLUSIONS: Breast reduction surgery for women with symptomatic breast hypertrophy is cost-effective and should be available to women through the Australian public healthcare system.

Self-reported quality of life following stroke: a systematic review of instruments with a focus on their psychometric properties.

PURPOSE: To evaluate the psychometric properties of common health-related quality-of-life instruments used post stroke and provide recommendations for research and clinical use with this diagnostic group. METHODS: A systematic review of the psychometric properties of the five most commonly used quality-of-life measurement tools (EQ-5D, SF-36, SF-6D, AQoL, SS-QOL) was conducted. Electronic searches were performed in MEDLINE, CINAHL, and EMBASE on November 27th 2019. Two authors screened papers against the inclusion criteria and where consensus was not reached, a third author was consulted. Included papers were appraised using the COnsensus-based Standards for the selection of health status Measurement INstruments (COSMIN) checklist and findings synthesized to make recommendations. RESULTS: A total of n = 50,908 papers were screened and n = 45 papers reporting on 40 separate evaluations of psychometric properties met inclusion criteria (EQ-5D = 19, SF-36 = 16, SF-6D = 4, AQoL = 2, SS-QOL = 4). Studies reported varied psychometric quality of instruments, and results show that psychometric properties of quality-of-life instruments for the stroke population have not been well established. The strongest evidence was identified for the use of the EQ-5D as a quality-of-life assessment for adult stroke survivors. CONCLUSIONS: This systematic evaluation of the psychometric properties of self-reported quality-of-life instruments used with adults after stroke suggests that validity across tools should not be assumed. Clinicians and researchers alike may use findings to help identify the most valid and reliable measurement instrument for understanding the impact of stroke on patient-reported quality of life.

Creating 'Partnership in iSupport program' to optimise family carers' impact on dementia care: a randomised controlled trial protocol.

BACKGROUND: The majority of people with dementia are cared for by their family members. However, family carers are often unprepared for their caring roles, receiving less education and support compared with professional carers. The consequences are their reduced mental and physical health and wellbeing, and that of care recipients. This study protocol introduces the 'Partnership in iSupport program' that includes five interventional components: managing transitions, managing dementia progression, psychoeducation, carer support group and feedback on services. This health services research is built on family carer and dementia care service provider partnerships. The aims of the study are to evaluate the effectiveness, cost-effectiveness and family carers' experiences in the program. METHODS: A multicentre randomised controlled trial will be conducted with family carers of people living with dementia from two tertiary hospitals and two community aged care providers across three Australian states. The estimated sample size is 185 family carers. They will be randomly assigned to either the intervention group or the usual care group. Outcomes are measurable improvements in quality of life for carers and people with dementia, caregiving self-efficacy, social support, dementia related symptoms, and health service use for carers and their care recipients. Data will be collected at three time points: baseline, 6 months and 12 months post-initiation of the intervention. DISCUSSION: This is the first large randomised controlled trial of a complex intervention on health and social care services with carers of people living with dementia in real-world practice across hospital and community aged care settings in three Australian states to ascertain the effectiveness, cost-effectiveness and carers' experiences of the innovative program. We expect that this study will address gaps in supporting dementia carers in health and social care systems while generating new knowledge of the mechanisms of change in the systems. Findings will strengthen proactive health management for both people living with dementia and their carers by embedding, scaling up and sustaining the 'Partnership in iSupport program' in the health and social care systems. TRIAL REGISTRATION: The Australian New Zealand Clinical Trials Registry (ANZCTR). ACTRN12622000199718 . Registered February 4th, 2022.

Towards a unifying caring life-course theory for better self-care and caring solutions: A discussion paper.

AIM: To present the first iteration of the caring life-course theory. BACKGROUND: Despite requiring care from birth to death, a person's universal or fundamental care needs and the subsequent care provision, either by self or others, has yet to be presented within a life-course perspective. Accurately describing the care people require across their lifespan enables us to identify who, what type, how and where this care should be provided. This novel perspective can help to legitimise a person's care needs and the support they require from wider care systems and contexts. DESIGN: Discussion paper outlines theory development. We adopted an inductive approach to theory development, drawing upon existing literature and the team's diverse experiences. Our theoretical insights were refined through a series of collaborative meetings to define the theory's constructs, until theoretical saturation was reached. DISCUSSION: Fourteen constructs are identified as essential to the theory. We propose it is possible, using these constructs, to generate caring life-course trajectories and predict divergences in these trajectories. The novel contribution of the theory is the interplay between understanding a person's care needs and provision within the context of their lifespan and personal histories, termed their care biography, and understanding a person's care needs and provision at specific points in time within a given care network and socio-political context. IMPACT FOR NURSING: The caring life-course theory can provide a roadmap to inform nursing and other care industry sectors, providing opportunities to integrate and deliver care from the perspective of the person and their care history, trajectories and networks, with those of professional care teams. It can help to shape health, social and economic policy and involve individuals, families and communities in more constructive ways of talking about the importance of care for improved quality of life and healthy societies.

A nurse-led multicentre randomized controlled trial on effectiveness and cost-effectiveness of Chinese iSupport for dementia program: A study protocol.

AIMS: To describe a nurse-led multicentre randomized controlled trial protocol developed to evaluate the effectiveness and cost-effectiveness of a Chinese iSupport for Dementia program in Australia and Greater China including mainland China, Taiwan, Hong Kong and Macau. DESIGN: A multicentre randomized controlled trial following the SPIRIT checklist. METHODS: Participants in the study will be recruited from Australia and Greater China and will be randomly assigned to the intervention group or the usual care group. Interventions will include self-learning of the iSupport program, virtual peer support and nurse program facilitator support for 6 months. Primary outcome measures will be the 12-Item Short-Form Health Survey. Secondary outcome measures will include: Revised Scale for Caregiving Self-efficacy; Quality of Social Support Scale; Revised Memory and Behaviour Problem Checklist; the Quality of Life in Alzheimer's Disease-Proxy; usages of care services; and cost-effectiveness of the intervention. Outcomes will be measured at baseline, 6 months and 9 months from the baseline. Caregivers' experiences of the peer support will be explored. This project was funded by the National Foundation for Australia-China Relations, Australian Government (Project ID: NFACR216). The total amount is $440,000 Australian dollars (or £ 236,231). DISCUSSION: Approximately, 20% of people living with dementia in the world live in Australia and Greater China. Older Chinese are usually cared for by family caregivers at home due to the influence of Confucianism. However, free and online psychoeducation programs for this large cohort of caregivers are not available or accessible. The World Health Organization iSupport for Dementia is an evidence-based online psychoeducation program for caregivers. Implementing a culturally adapted Chinese iSupport program will address this gap in supporting caregivers. IMPACT: This study will provide research evidence on effectiveness and cost-effectiveness of an online psychoeducation program for caregivers. Findings will inform policy and practice development.