What is the economic and social return on investment for telephone cancer information and support services in Australia? An evaluative social return on investment study protocol.

INTRODUCTION: Over 50% of people affected by cancer report unmet support needs. To address unmet information and psychological needs, non-government organisations such as Cancer Councils (Australia) have developed state-based telephone cancer information and support services. Due to competing demands, evidence of the value of these services is needed to ensure that future investment makes the best use of scarce resources. This research aims to determine the costs and broader economic and social value of a telephone support service, to inform future funding and service provision. METHODS AND ANALYSIS: A codesigned, evaluative social return on investment analysis (SROI) will be conducted to estimate and compare the costs and monetised benefits of Cancer Council Victoria's (CCV) telephone support line, 13 11 20, over 1-year and 3-year benefit periods. Nine studies will empirically estimate the parameters to inform the SROI and calculate the ratio (economic and social value to value invested): step 1 mapping outcomes (in-depth analysis of CCV's 13 11 20 recorded call data; focus groups and interviews); step 2 providing evidence of outcomes (comparative survey of people affected by cancer who do and do not call CCV's 13 11 20; general public survey); step 3 valuing the outcomes (financial proxies, value games); step 4 establishing the impact (Delphi); step 5 calculating the net benefit and step 6 service improvement (discrete choice experiment (DCE), 'what if' analysis). Qualitative (focus groups, interviews) and quantitative studies (natural language processing, cross-sectional studies, Delphi) and economic techniques (willingness-to-pay, financial proxies, value games, DCE) will be applied. ETHICS AND DISSEMINATION: Ethics approval for each of the studies will be sought independently as the project progresses. So far, ethics approval has been granted for the first two studies. As each study analysis is completed, results will be disseminated through presentation, conferences, publications and reports to the partner organisations.

Exploring important service characteristics of telephone cancer information and support services for callers: protocol for a systematic review of qualitative research.

INTRODUCTION: As cancer incidence continues to rise, challenges remain in how to communicate accurate, timely information to people with cancer, their families and healthcare professionals. One option is to provide support and comprehensive, tailored information via a telephone cancer information and support service (CISS). This systematic review aims to summarise the service characteristics of telephone CISS and identify what aspects of services are important from callers' perspectives. METHODS AND ANALYSIS: A comprehensive literature search will be conducted for articles published from database inception to 30 March 2023 (OVID MEDLINE, EMBASE, CINAHL, PsycINFO and SocINDEX). Published, peer-reviewed, articles reporting qualitative research on the service characteristics of telephone CISS important to callers in any language will be included. One researcher will complete the searches, two researchers will independently screen results for eligible studies and a third researcher will resolve any disagreement. A narrative and thematic synthesis of studies will be provided. Study characteristics will be independently extracted by one researcher and checked by a second. Included studies' methodological quality will be evaluated independently by two researchers using the 2022 Critical Appraisal Skills Programme Qualitative Studies Checklist. Grading of Recommendations Assessment, Development and Evaluation-Confidence in the Evidence from Reviews of Qualitative research tool will assess the confidence of the review findings. ETHICS AND DISSEMINATION: Ethics approval is not required for this research as it is a planned systematic review of published literature. Findings will be presented at leading cancer, health economic and supportive care conferences, published in a peer-reviewed journal, and disseminated via websites and social media. PROSPERO REGISTRATION NUMBER: CRD42023413897.

Protocol for a systematic review of reviews on training primary care providers in dermoscopy to detect skin cancers.

INTRODUCTION: Globally, incidence, prevalence and mortality rates of skin cancers are escalating. Earlier detection by well-trained primary care providers in techniques such as dermoscopy could reduce unnecessary referrals and improve longer term outcomes. A review of reviews is planned to compare and contrast the conduct, quality, findings and conclusions of multiple systematic and scoping reviews addressing the effectiveness of training primary care providers in dermoscopy, which will provide a critique and synthesis of the current body of review evidence. METHODS AND ANALYSIS: Four databases (Cochrane, CINAHL, EMBASE and MEDLINE Complete) will be comprehensively searched from database inception to identify published, peer-reviewed English-language articles describing scoping and systematic reviews of the effectiveness of training primary care providers in the use of dermoscopy to detect skin cancers. Two researchers will independently conduct the searches and screen the results for potentially eligible studies using 'Research Screener' (a semi-automated machine learning tool). Backwards and forwards citation tracing will be conducted to supplement the search. A narrative summary of included reviews will be conducted. Study characteristics, for example, population; type of educational programme, including content, delivery method, duration and assessment; and outcomes for dermoscopy will be extracted into a standardised table. Data extraction will be checked by the second reviewer. Methodological quality will be evaluated by two reviewers independently using the Critical Appraisal Tool for Health Promotion and Prevention Reviews. Results of the assessments will be considered by the two reviewers and any discrepancies will be resolved by team consensus. ETHICS AND DISSEMINATION: Ethics approval is not required to conduct the planned systematic review of peer-reviewed, published articles because the research does not involve human participants. Findings will be published in a peer-reviewed journal, presented at leading public health, cancer and primary care conferences, and disseminated via website postings and social media channels. PROSPERO REGISTRATION NUMBER: CRD42023396276.

How well do the adult social care outcomes toolkit for carers, carer experience scale and care-related quality of life capture aspects of quality of life important to informal carers in Australia?

PURPOSE: Identify aspects of quality of life (QoL) important to Australian informal carers and explore how well the Adult Social Care Outcomes Toolkit for Carers, Care-related Quality of Life instrument and Carer Experience Scale capture these aspects in the Australian context. METHODS: Online questionnaires were completed by Australian informal carers. Socio-demographics, open-ended questions: positive/negative aspects of caring and QoL aspects missing from the instruments, and ranking of the instrument domains was used to explore the content of the instruments. Instruments were scored using preference-weighted value sets (reported in another paper). Content analysis was used to analyse the open-ended responses. Chi-squared test looked at differences in domain importance. Descriptive analyses summarised all other information. RESULTS: Eight themes were identified: Behaviour-mood of the care recipient, Caring responsibilities, Finances, Health, Own life, Perception of carers, Relationship with care recipient and Support. Many aspects of carer QoL mentioned as missing in the instruments appeared covered by the domains, of which all were reported as important. The highest ranked domain was relationship with the care recipient. The influence of the care recipient specific support, behaviour/mood and health on carer QoL appear absent in all instruments. CONCLUSION: The content of the three instruments appears relevant in an Australian setting. The influence of care recipient's health and well-being on carer QoL should be considered, along with spillover effects. A content and/or face validity analysis is required to confirm differences in item interpretation in Australian informal carers.

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.

Providing informal care to a person living with dementia: the experiences of informal carers in Australia.

Most people with dementia live at home and rely on family and friends who provide unpaid care and support. Informal carers of people with dementia are often described as 'invisible second patients', reflecting the higher-than-normal rates of depression, stress and physical illness. To inform service delivery and the development of evidence-based interventions targeting informal carers of people with dementia, it is important to understand their experiences. The aim of this study was to examine the experiences of caregivers in providing informal care to a person living with dementia and to examine how providing this care impacts their own quality of life. Semi-structured interviews were conducted with 16 informal carers in Australia. Recordings of the interviews were transcribed verbatim and analysed using an inductive approach (thematic analysis) which revealed strong narratives from informal carers regarding (1) available support, (2) the health impacts of caring, (3) new roles and responsibilities, and (4) the motivations around caring. The findings of this study reinforce that a comprehensive approach is needed in supporting informal carers in their caring role, ensuring sustainability of the aged care system and quality of life for people living with dementia.

Understanding the Quality of Life Impacts of Providing Informal Care to People with Dementia: A Systematic Review of Qualitative Studies.

BACKGROUND: There is currently a lack of a comprehensive review identifying the broad scope of factors that impact quality of life (QoL) of informal carers of people with dementia in order to validate existing measures and inform the provision of support services for carers of people with dementia that impact QoL domains important to them. OBJECTIVE: To explore and identify QoL impacts on informal carers from providing care to people with dementia. METHODS: A systematic review was conducted across four databases: EMBASE, CINAHL, PsychINFO, and Medline. Eligible studies consisted of published, peer-reviewed, qualitative studies focusing on lived experiences of informal carers of people with dementia. Non-English studies and quantitative studies were excluded. Screening of included studies was conducted independently by three reviewers. A "best-fit" framework synthesis was used to combine the qualitative data, applying deductive and inductive analysis techniques. Quality assessment was conducted using the Critical Appraisal Skills Programme. RESULTS: Of the 4,251 articles identified, 59 articles were included. Five main themes pertaining to QoL aspects were identified that included coping (emotion-coping and problem-coping), relationship with the person with dementia (sense of loss and change in relationship), support (formal support and informal support), interference with life (control over caring situation, and freedom and independence), and health (physical health, emotional and mental health, and social health). CONCLUSION: This study identified domains of QoL that are impacted by providing informal care to people living with dementia, offering a conceptual framework for instrument validation and development as well as guidance for service provision.

Valuation of Informal Care Provided to People Living With Dementia: A Systematic Literature Review.

OBJECTIVES: This study aimed to identify the methods used to determine the value of informal care provided to people living with dementia and to estimate the average hourly unit cost by valuation method. METHODS: A literature search in MEDLINE Complete, CINAHL, PsycINFO, EconLit, EMBASE and NHS Economic Evaluation Database was undertaken. Following the screening of title, abstract, and full text, characteristics of eligible studies were extracted systematically and analyzed descriptively. The corresponding hourly cost estimates were converted into 2018 US dollars based on purchasing power parities for gross domestic product. RESULTS: A total number of 111 articles were included in this review from 3106 post-deduplication records. Three main valuation methodologies were identified: the replacement cost method (n = 50), the opportunity cost approach (n = 36), and the stated preference method based on willingness to pay (n = 3), with 16 studies using multiple methods and 6 studies not specifying the valuation method. The amount of informal care increased as the condition of dementia progressed, which was reflected in the cost of informal care. The average hourly unit cost used to value informal care was US $16.78 (SD = US $12.11). Although the unit cost was approximately US $15 per hour when using the opportunity cost method and US $14 when using the stated preference method, the highest unit cost was obtained when using the replacement cost method (US $18.37, SD = US $13.12). CONCLUSIONS: Although costs of informal care should be considered when undertaking an economic evaluation or estimating the overall costs of dementia from a policy and priority-setting perspective, further research into applying consistent approaches to valuation is warranted.

Cost-effectiveness evidence of mental health prevention and promotion interventions: A systematic review of economic evaluations.

BACKGROUND: The prevention of mental disorders and promotion of mental health and well-being are growing fields. Whether mental health promotion and prevention interventions provide value for money in children, adolescents, adults, and older adults is unclear. The aim of the current study is to update 2 existing reviews of cost-effectiveness studies in this field in order to determine whether such interventions are cost-effective. METHODS AND FINDINGS: Electronic databases (including MEDLINE, PsycINFO, CINAHL, and EconLit through EBSCO and Embase) were searched for published cost-effectiveness studies of prevention of mental disorders and promotion of mental health and well-being from 2008 to 2020. The quality of studies was assessed using the Quality of Health Economic Studies Instrument (QHES). The protocol was registered with PROSPERO (# CRD42019127778). The primary outcomes were incremental cost-effectiveness ratio (ICER) or return on investment (ROI) ratio across all studies. A total of 65 studies met the inclusion criteria of a full economic evaluation, of which, 23 targeted children and adolescents, 35 targeted adults, while the remaining targeted older adults. A large number of studies focused on prevention of depression and/or anxiety disorders, followed by promotion of mental health and well-being and other mental disorders. Although there was high heterogeneity in terms of the design among included economic evaluations, most studies consistently found that interventions for mental health prevention and promotion were cost-effective or cost saving. The review found that targeted prevention was likely to be cost-effective compared to universal prevention. Screening plus psychological interventions (e.g., cognitive behavioural therapy [CBT]) at school were the most cost-effective interventions for prevention of mental disorders in children and adolescents, while parenting interventions and workplace interventions had good evidence in mental health promotion. There is inconclusive evidence for preventive interventions for mental disorders or mental health promotion in older adults. While studies were of general high quality, there was limited evidence available from low- and middle-income countries. The review was limited to studies where mental health was the primary outcome and may have missed general health promoting strategies that could also prevent mental disorder or promote mental health. Some ROI studies might not be included given that these studies are commonly published in grey literature rather than in the academic literature. CONCLUSIONS: Our review found a significant growth of economic evaluations in prevention of mental disorders or promotion of mental health and well-being over the last 10 years. Although several interventions for mental health prevention and promotion provide good value for money, the varied quality as well as methodologies used in economic evaluations limit the generalisability of conclusions about cost-effectiveness. However, the finding that the majority of studies especially in children, adolescents, and adults demonstrated good value for money is promising. Research on cost-effectiveness in low-middle income settings is required. TRIAL REGISTRATION: PROSPERO registration number: CRD42019127778.

Head-to-Head Comparison of the Psychometric Properties of 3 Carer-Related Preference-Based Instruments.

OBJECTIVES: To compare the psychometric properties of the Adult Social Care Outcomes Toolkit for carers (ASCOT-Carer), the Carer Experience Scale (CES), and the Care-related Quality of Life (CarerQol) to inform the choice of instrument in future studies. METHODS: Data were derived from a 2018 online survey of informal carers in Australia. Reliability was assessed via internal consistency (Cronbach alpha, α) and test-retest reliability (intraclass correlation coefficient, ICC) for respondents who self-reported no change in their quality of life as a carer over 2 weeks. Convergent validity was evaluated via predetermined hypotheses about associations (Spearman's rank correlation) with existing, validated measures. Discriminative validity was assessed based on the ability of the carer-related scores to distinguish between different informal care situations (Mann-Whitney U, Kruskal-Wallis one-way analysis of variance). RESULTS: Data from 500 carers were analyzed. The ASCOT-Carer demonstrated a higher degree of internal consistency, possibly due to a unidimensional structure, and test-retest reliability than the CarerQol and CES (α = 0.87, 0.65, 0.59; ICC, 0.87, 0.67, 0.81, respectively). All 3 instruments exhibited convergent validity and detected statistically significant associations between carer-related scores and different informal care situations, except for the CarerQol-7D and sole carer status. CONCLUSIONS: The ASCOT-Carer, CarerQol, and CES performed reasonably well psychometrically; the ASCOT-Carer exhibited the best psychometric properties overall in this sample of Australian informal carers. Findings should be used in conjunction with consideration of research goals, carer population, targeted carer-related constructs, and prevailing perspectives on the economic evaluation to inform choice of instrument in future studies.

Measuring Carer Outcomes in an Economic Evaluation: A Content Comparison of the Adult Social Care Outcomes Toolkit for Carers, Carer Experience Scale, and Care-Related Quality of Life Using Exploratory Factor Analysis.

Background. To incorporate the spillover effects experienced by carers providing informal care in health policy decisions, new carer-related preference-based measures have been developed for use in economic evaluation, which include the Adult Social Care Outcomes Toolkit for Carers (ASCOT-Carer), Carer Experience Scale (CES), and Care-Related Quality of Life (CarerQoL). The aim of this study was to investigate the extent to which these 3 instruments measure complementary or overlapping constructs. Methods. Data were derived from an online survey undertaken with carers residing in Australia. An exploratory factor analysis was conducted to ascertain the underlying latent constructs of the 3 measures. Results. Data from 351 informal carers yielded a 5-factor model describing general quality of life outside caring, problems due to caring, fulfilment from caring, social support with caring, and relationship with the care recipient. Most of the ASCOT-Carer and the CarerQol items loaded onto the first and second factors, respectively. The greatest overlap was observed between CarerQol and CES items loading onto the other 3 shared common factors. Limitations. Online data collection resulted in inconsistent responses, which had to be removed to yield logical data. A convenience sampling approach may have compromised the generalizability of study findings. Conclusion. Although some overlap was observed, the 3 carer-related preference-based measures seem to tap into different constructs of carer-related quality of life and caring experiences and cannot be used interchangeably.

A qualitative exploration of the content and face validity of preference-based measures within the context of dementia.

BACKGROUND: Assessing the cost-effectiveness of interventions for people with dementia, based on cost per quality-adjusted life years (QALYs) gained, requires that the measures used to derive QALYs are preference-based whilst also being valid, feasible to use, comprehensible and acceptable for people with dementia. The aim of this study was to assess the content and face validity of six preference-based measures (PBMs) within the context of dementia. METHODS: Qualitative focus groups and interviews were conducted with community-dwelling individuals with mild dementia and carers of people with dementia. After exploring participants' understanding of 'quality of life' (QoL), six PBMs were assessed for content and face validity: two measures assessing health-related QoL (EQ-5D-5L and AQoL-8D); two covering broader aspects of capability wellbeing and social care-related QoL (ICECAP-O and ASCOT); and two dementia-specific QoL measures (DEMQOL-U and AD-5D). A random mix of one health-related QoL measure, one wellbeing measure, and one dementia-specific measure was explored in each session. All sessions were audiotaped and transcribed verbatim. Data were analysed thematically. RESULTS: Nine individuals with mild dementia and 17 carers of people with dementia participated across 4 focus groups and 10 interviews. Participants perceived 9 broad QoL domains as relevant to them: Activity, Autonomy, Cognition, Communication, Coping, Emotions, End-of-Life, Physical Functioning, and Relationships. These domains had limited overlap with the content of the six PBMs. Assessment of face validity was summarized into eight themes: (1) ambiguous questions, (2) double -barrelled questions, (3) difficult/abstract questions, (4) judgemental/confronting questions, (5) lack of relevance and comprehensiveness, (6) response options, (7) layout/format and (8) proxy-response. There was no clear preference for one of the six measures explored; participants identified advantages and disadvantages across all measures. Although particularly designed for individuals with dementia, dementia-specific QoL measures were not always favoured over non-specific measures. CONCLUSION: Given the shortcomings of PBMs identified in this study, further empirical comparative analyses are necessary to guide the selection of PBMs for future dementia research.

The economic costs of loneliness: a review of cost-of-illness and economic evaluation studies.

PURPOSE: Loneliness and social isolation can occur at all stages of the life course and are recognized as a global health priority. The aim of this study was to review existing literature on the economic costs associated with loneliness and social isolation as well as evidence on the cost-effectiveness of interventions to prevent or address loneliness and social isolation. METHODS: A bibliographic database search was undertaken in Medline, PsycINFO, CINAHL, and Embase, supplemented by a grey literature search and a reference list search. Papers were included that were published in English language in peer-reviewed literature in the past 10 years, reporting costs of loneliness and/or social isolation or economic evaluations of interventions whose primary purpose is to reduce loneliness and/or social isolation, including return on investment (ROI) or social return on investment (SROI) studies. RESULTS: In total, 12 papers were included in this review, consisting of four cost-of-illness studies, seven economic evaluations and five ROI or SROI studies. Most studies were conducted in the UK and focused on older adults. Due to the inconsistent use of the terms loneliness and social isolation, as well as their measurement, the true economic burden can only be estimated to a certain extent and the comparability across economic evaluations and ROI studies is limited. CONCLUSIONS: The paucity of evidence that is available primarily evaluating the economic costs of loneliness indicates that more research is needed to assess the economic burden and identify cost-effective interventions to prevent or address loneliness and social isolation.

Correction to: The economic costs of loneliness: a review of cost­of­illness and economic evaluation studies.

The article, "The economic costs of loneliness: a review of cost_of_illness and economic evaluation studies", written by Cathrine Mihalopoulos was originally published electronically on the publisher's internet portal (currently SpringerLink) on 22 May 2019 with open access.'

A systematic review of utility values in children with cerebral palsy.

PURPOSE: Project aims include the following: (i) to identify reported utility values associated with CP in children aged ≤ 18 years; (ii) to explore utility value elicitation techniques in published studies; and (iii) to examine performance of the measures and/or elicitation approaches. METHODS: Peer-reviewed studies published prior to March 2017 were identified from six electronic databases. Construct validity, convergent validity, responsiveness, and reliability of instruments were assessed. RESULTS: Five studies met the inclusion criteria. Utility values of hypothetical general CP states obtained from a general population of parents ranged from 0.55 to 0.88 using time trade off (TTO) and 0.60-0.87 using standard gamble (SG) techniques. Utility values reported by clinicians of three hypothetical spastic quadriplegic CP states, using the Health Utility Index Mark 2 (HUI-2), ranged from 0.40 to 0.13. Other sources of utilities identified were based on both proxy and child ratings using Health Utility Index Mark 3 (HUI-3) (values ranged from - 0.013 to 0.84 depending on the valuation source) and the Assessment of Quality of Life 4 Dimension instrument, with values ranging from 0.01 to 0.58. Construct validity of the HUI-3 varied from moderate to strong, whereas mixed results were found for convergent validity. Responsiveness and reliability were not reported. CONCLUSION: There was substantial variation in reported utilities. Indirect techniques (i.e. via multi-attribute utility instruments) were more frequently used than direct techniques (e.g. TTO, SG). Further research is required to improve the robustness of utility valuation of health-related quality of life in children with CP for use in economic evaluation.