The RETRIEVE Checklist for Studies Reporting the Elicitation of Stated Preferences for Child Health-Related Quality of Life.

BACKGROUND: Recent systematic reviews show varying methods for eliciting, modelling, and reporting preference-based values for child health-related quality-of-life (HRQoL) outcomes, thus producing value sets with different characteristics. Reporting in many of the reviewed studies was found to be incomplete and inconsistent, making them difficult to assess. Checklists can help to improve standards of reporting; however, existing checklists do not address methodological issues for valuing child HRQoL. Existing checklists also focus on reporting methods and processes used in developing HRQoL values, with less focus on reporting of the values' key characteristics and properties. We aimed to develop a checklist for studies generating values for child HRQoL, including for disease-specific states and value sets for generic child HRQoL instruments. DEVELOPMENT: A conceptual model provided a structure for grouping items into five modules. Potential items were sourced from an adult HRQoL checklist review, with additional items specific to children developed using recent reviews. Checklist items were reduced by eliminating duplication and overlap, then refined for relevance and clarity via an iterative process. Long and short checklist versions were produced for different user needs. The resulting long RETRIEVE contains 83 items, with modules for reporting methods (A-D) and characteristics of values (E), for researchers planning and reporting child health valuation studies. The short RETRIEVE contains 14 items for decision makers or researchers choosing value sets. CONCLUSION: Applying the RETRIEVE checklists to relevant studies suggests feasibility. RETRIEVE has the potential to improve completeness in the reporting of preference-based values for child HRQOL outcomes and to improve assessment of preference-based value sets.

Longitudinal associations between socioeconomic position and overall health of children with chronic kidney disease and their carers.

BACKGROUND: Disadvantaged socioeconomic position (SEP) is an important predictor of poor health in children with chronic kidney disease (CKD). The time course over which SEP influences the health of children with CKD and their carers is unknown. METHODS: This prospective longitudinal study included 377 children, aged 6-18 years with CKD (stages I-V, dialysis, and transplant), and their primary carers. Mixed effects ordinal regression was performed to assess the association between SEP and carer-rated child health and carer self-rated health over a 4-year follow-up. RESULTS: Adjusted for CKD stage, higher family household income (adjusted odds ratio (OR) (95% CI) 3.3, 1.8-6.0), employed status of primary carers (1.7, 0.9-3.0), higher carer-perceived financial status (2.6, 1.4-4.8), and carer home ownership (2.2, 1.2-4.0) were associated with better carer-rated child health. Household income also had a differential effect on the carer's self-rated health over time (p = 0.005). The predicted probabilities for carers' overall health being 'very good' among lower income groups at 0, 2, and 4 years were 0.43 (0.28-0.60), 0.34 (0.20-0.51), and 0.25 (0.12-0.44), respectively, and 0.81 (0.69-0.88), 0.84 (0.74-0.91), and 0.88 (0.76-0.94) for carers within the higher income group. CONCLUSIONS: Carers and their children with CKD in higher SEP report better overall child and carer health compared with those in lower SEP. Carers of children with CKD in low-income households had poorer self-rated health compared with carers in higher-income households at baseline, and this worsened over time. These cumulative effects may contribute to health inequities between higher and lower SEP groups over time. Graphical abstract A higher resolution version of the Graphical abstract is available as Supplementary information.

Systematic Review of the Relative Social Value of Child and Adult Health.

OBJECTIVES: We aimed to synthesise knowledge on the relative social value of child and adult health. METHODS: Quantitative and qualitative studies that evaluated the willingness of the public to prioritise treatments for children over adults were included. A search to September 2023 was undertaken. Completeness of reporting was assessed using a checklist derived from Johnston et al. Findings were tabulated by study type (matching/person trade-off, discrete choice experiment, willingness to pay, opinion survey or qualitative). Evidence in favour of children was considered in total, by length or quality of life, methodology and respondent characteristics. RESULTS: Eighty-eight studies were included; willingness to pay (n = 9), matching/person trade-off (n = 12), discrete choice experiments (n = 29), opinion surveys (n = 22) and qualitative (n = 16), with one study simultaneously included as an opinion survey. From 88 studies, 81 results could be ascertained. Across all studies irrespective of method or other characteristics, 42 findings supported prioritising children, while 12 provided evidence favouring adults in preference to children. The remainder supported equal prioritisation or found diverse or unclear views. Of those studies considering prioritisation within the under 18 years of age group, nine findings favoured older children over younger children (including for life saving interventions), six favoured younger children and five found diverse views. CONCLUSIONS: The balance of evidence suggests the general public favours prioritising children over adults, but this view was not found across all studies. There are research gaps in understanding the public's views on the value of health gains to very young children and the motivation behind the public's views on the value of child relative to adult health gains. CLINICAL TRIAL REGISTRATION: The review is registered at PROSPERO number: CRD42021244593. There were two amendments to the protocol: (1) some additional search terms were added to the search strategy prior to screening to ensure coverage and (2) a more formal quality assessment was added to the process at the data extraction stage. This assessment had not been identified at the protocol writing stage.

Psychometric Evaluation of the PedsQL GCS and CHU9D in Australian Children and Adolescents with Common Chronic Health Conditions.

BACKGROUND: Generic instruments such as the Pediatric Quality of Life Inventory™ v4.0 Generic Core Scales (PedsQL GCS) and Child Health Utility 9D (CHU9D) are widely used to assess health-related quality of life (HRQOL) of the general childhood population, but there is a paucity of information about their psychometric properties in children with specific health conditions. This study assessed psychometric properties, including acceptability, reliability, validity, and responsiveness, of the PedsQL GCS and the CHU9D in children and adolescents with a range of common chronic health problems. METHODS: We used data from the Longitudinal Study of Australian Children (LSAC), for children aged 10-17 years with at least one of the following six parent-reported health conditions: asthma, anxiety/depression, attention deficit hyperactivity disorder (ADHD), autism/Asperger's, epilepsy, and type 1 diabetes mellitus. The LSAC used parent proxy-reported PedsQL GCS and child self-reported CHU9D assessments. The performance of each instrument (PedsQL GCS and CHU9D) for each psychometric property (acceptability, reliability, validity, and responsiveness) was assessed against established criteria. RESULTS: The study sample included 7201 children and adolescents (mean age = 14 years; range 10.1-17.9 years; 49% female) with 15,568 longitudinal observations available for analyses. Across the six health conditions, acceptability of the PedsQL GCS was high, while acceptability for the CHU9D was mixed. Both the PedsQL GCS and CHU9D showed strong internal consistency (Cronbach's alpha range: PedsQL GCS = 0.70-0.95, CHU9D = 0.76-0.84; item-total correlations range: PedsQL GCS = 0.35-0.84, CHU9D = 0.32-0.70). However, convergent validity for both the PedsQL GCS and CHU9D was generally weak (Spearman's correlations ≤ 0.3). Known group validity was strong for the PedsQL GCS (HRQOL differences were detected for children with and without asthma, anxiety/depression, ADHD, autism/Asperger's, and epilepsy). CHU9D was only able to discriminate between children with and without anxiety/depression, ADHD, and autism/Asperger's. The responsiveness of both the PedsQL GCS and CHU9D was variable across the six conditions, and most of the estimated effect sizes were relatively small (< 0.5). CONCLUSION: This study expands the evidence base of psychometric performance of the PedsQL GCS and CHU9D and can aid in appropriate HRQOL instrument selection for the required context by researchers and clinicians.

Preferences for deprescribing antihypertensive medications amongst clinicians, carers and people living with dementia: a discrete choice experiment.

BACKGROUND: Optimal management of hypertension in people with dementia may involve deprescribing antihypertensives. Understanding differing treatment priorities is important to enable patient-centred care. This study explored preferences for antihypertensive deprescribing amongst people living with dementia, carers and clinicians. METHODS: Discrete choice experiments (DCEs) are a stated preference survey method, underpinned by economic theory. A DCE was conducted, and respondents completed 12 labelled choice-questions, each presenting a status quo (continuing antihypertensives) and antihypertensive deprescribing option. The questions included six attributes, including pill burden, and event risks for stroke, myocardial infarction, increased blood pressure, cognitive decline, falls. RESULTS: Overall, 112 respondents (33 carers, 19 people living with dementia, and 60 clinicians) completed the survey. For people with dementia, lower pill burden increased preferences for deprescribing (odds ratio (OR) 1.95, 95% confidence interval (95% CI) 1.08-3.52). Increased stroke risk (for each additional person out of 100 having a stroke) decreased the likelihood of deprescribing for geriatricians (OR 0.71, 95% CI 0.55-0.92) and non-geriatrician clinicians (OR 0.62, 95% CI 0.45-0.86), and carers (OR 0.71, 95% CI 0.58-0.88). Increased myocardial infarction risk decreased preferences for deprescribing for non-geriatricians (OR 0.81, 95% CI 0.69-0.95) and carers (OR 0.84, 95% CI 0.73-0.98). Avoiding cognitive decline increased preferences for deprescribing for geriatricians (OR 1.17, 95% CI 1.03-1.33) and carers (OR 1.27, 95% CI 1.09-1.48). Avoiding falls increased preferences for deprescribing for clinicians (geriatricians (OR 1.20, 95% CI 1.11-1.29); non-geriatricians (OR 1.16, 95% CI 1.07-1.25)). Other attributes did not significantly influence respondent preferences. CONCLUSIONS: Antihypertensive deprescribing preferences differ amongst people with dementia, carers and clinicians. The study emphasises the importance of shared decision-making within the deprescribing process.

Systematic Review of the Psychometric Performance of Generic Childhood Multi-attribute Utility Instruments.

BACKGROUND: Childhood multi-attribute utility instruments (MAUIs) can be used to measure health utilities in children (aged ≤ 18 years) for economic evaluation. Systematic review methods can generate a psychometric evidence base that informs their selection for application. Previous reviews focused on limited sets of MAUIs and psychometric properties, and only on evidence from studies that directly aimed to conduct psychometric assessments. OBJECTIVE: This study aimed to conduct a systematic review of psychometric evidence for generic childhood MAUIs and to meet three objectives: (1) create a comprehensive catalogue of evaluated psychometric evidence; (2) identify psychometric evidence gaps; and (3) summarise the psychometric assessment methods and performance by property. METHODS: A review protocol was registered with the Prospective Register of Systematic Reviews (PROSPERO; CRD42021295959); reporting followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 guideline. The searches covered seven academic databases, and included studies that provided psychometric evidence for one or more of the following generic childhood MAUIs designed to be accompanied by a preference-based value set (any language version): 16D, 17D, AHUM, AQoL-6D, CH-6D, CHSCS-PS, CHU9D, EQ-5D-Y-3L, EQ-5D-Y-5L, HUI2, HUI3, IQI, QWB, and TANDI; used data derived from general and/or clinical childhood populations and from children and/or proxy respondents; and were published in English. The review included 'direct studies' that aimed to assess psychometric properties and 'indirect studies' that generated psychometric evidence without this explicit aim. Eighteen properties were evaluated using a four-part criteria rating developed from established standards in the literature. Data syntheses identified psychometric evidence gaps and summarised the psychometric assessment methods/results by property. RESULTS: Overall, 372 studies were included, generating a catalogue of 2153 criteria rating outputs across 14 instruments covering all properties except predictive validity. The number of outputs varied markedly by instrument and property, ranging from 1 for IQI to 623 for HUI3, and from zero for predictive validity to 500 for known-group validity. The more recently developed instruments targeting preschool children (CHSCS-PS, IQI, TANDI) have greater evidence gaps (lack of any evidence) than longer established instruments such as EQ-5D-Y, HUI2/3, and CHU9D. The gaps were prominent for reliability (test-retest, inter-proxy-rater, inter-modal, internal consistency) and proxy-child agreement. The inclusion of indirect studies (n = 209 studies; n = 900 outputs) increased the number of properties with at least one output of acceptable performance. Common methodological issues in psychometric assessment were identified, e.g., lack of reference measures to help interpret associations and changes. No instrument consistently outperformed others across all properties. CONCLUSION: This review provides comprehensive evidence on the psychometric performance of generic childhood MAUIs. It assists analysts involved in cost-effectiveness-based evaluation to select instruments based on the application-specific minimum standards of scientific rigour. The identified evidence gaps and methodological issues also motivate and inform future psychometric studies and their methods, particularly those assessing reliability, proxy-child agreement, and MAUIs targeting preschool children.

Reliability, acceptability, validity and responsiveness of the CHU9D and PedsQL in the measurement of quality of life in children and adolescents with overweight and obesity.

BACKGROUND: The Paediatric Quality of life Inventory (PedsQLTM) Generic Core Scales and the Child Health Utilities 9 Dimensions (CHU9D) are two paediatric health-related quality of life (HRQoL) measures commonly used in overweight and obesity research. However, no studies have comprehensively established the psychometric properties of these instruments in the context of paediatric overweight and obesity. The aim of this study was to assess the reliability, acceptability, validity and responsiveness of the PedsQL and the CHU9D in the measurement of HRQoL among children and adolescents living with overweight and obesity. SUBJECTS/METHODS: Subjects were 6544 child participants of the Longitudinal Study of Australian Children, with up to 3 repeated measures of PedsQL and CHU9D and aged between 10 and 17 years. Weight and height were measured objectively by trained operators, and weight status determined using World Health Organisation growth standards. We examined reliability, acceptability, known group and convergent validity and responsiveness, using recognised methods. RESULTS: Both PedsQL and CHU9D demonstrated good internal consistency reliability, and high acceptability. Neither instrument showed strong convergent validity, but PedsQL appears to be superior to the CHU9D in known groups validity and responsiveness. Compared with healthy weight, mean (95%CI) differences in PedsQL scores for children with obesity were: boys -5.6 (-6.2, -4.4); girls -6.7 (-8.1, -5.4) and differences in CHU9D utility were: boys -0.02 (-0.034, -0.006); girls -0.035 (-0.054, -0.015). Differences in scores for overweight compared with healthy weight were: PedsQL boys -2.2 (-3.0, -1.4) and girls -1.3 (-2.0, -0.6) and CHU9D boys: no significant difference; girls -0.014 (-0.026, -0.003). CONCLUSION: PedsQL and CHU9D overall demonstrated good psychometric properties, supporting their use in measuring HRQoL in paediatric overweight and obesity. CHU9D had poorer responsiveness and did not discriminate between overweight and healthy weight in boys, which may limit its use in economic evaluation.

Longitudinal assessment of the health-related quality of life of children and adolescents with chronic kidney disease.

In this multi-center longitudinal cohort study conducted in Australia and New Zealand, we assessed the trajectories of health-related quality of life (HRQoL) in children with chronic kidney disease (CKD) over time. A total of 377 children (aged 6-18 years) with CKD stages 1-5 (pre-dialysis), dialysis, or transplant, were followed biennially for four years. Multi Attribute Utility (MAU) scores of HRQoL were measured at baseline and at two and four years using the McMaster Health Utilities Index Mark 3 tool, a generic multi-attribute, preference-based system. A multivariable linear mixed model was used to assess the trajectories of HRQoL over time in 199 children with CKD stage 1-5, 43 children receiving dialysis and 135 kidney transplant recipients. An interaction between CKD stage at baseline and follow-up time indicated that the slopes of the HRQoL scores differed between children by CKD stage at inception. Over half of the cohort on dialysis at baseline had received a kidney transplant by the end of year four and the MAU scores of these children increased by a meaningful amount averaging 0.05 (95% confidence interval 0.01 to 0.09) per year in comparison to those who were transplant recipients at baseline. The mean difference between baseline and year two MAU scores was 0.09 (95% confidence interval -0.05, 0.23), (Cohen's d effect size 0.31). Thus, improvement in HRQoL over time of children on dialysis at baseline was likely to have been driven by their transition from dialysis to transplantation. Additionally, children with CKD stage 1-5 and transplant recipients at baseline had no changes in their disease stage or treatment modality and experienced stable HRQoL over time.

Preference Elicitation Techniques Used in Valuing Children's Health-Related Quality-of-Life: A Systematic Review.

BACKGROUND AND OBJECTIVES: Valuing children's health states for use in economic evaluations is globally relevant and is of particular relevance in jurisdictions where a cost-utility analysis is the preferred form of analysis for decision making. Despite this, the challenges with valuing child health mean that there are many remaining questions for debate about the approach to elicitation of values. The aim of this paper was to identify and describe the methods used to value children's health states and the specific issues that arise in the use of these methods. METHODS: We conducted a systematic search of electronic databases to identify studies published in English since 1990 that used preference elicitation methods to value child and adolescent (under 18 years of age) health states. Eligibility criteria comprised valuation studies concerning both child-specific patient-reported outcome measures and child health states defined in other ways, and methodological studies of valuation approaches that may or may not have yielded a value set algorithm. RESULTS: A total of 77 eligible studies were identified from which data on country setting, aims, condition (general population or clinically specific), sample size, age of respondents, the perspective that participants were asked to adopt, source of values (respondents who completed the preference elicitation tasks) and methods questions asked were extracted. Extracted data were classified and evaluated using narrative synthesis methods. The studies were classified into three groups: (1) studies comparing elicitation methods (n = 30); (2) studies comparing perspectives (n = 23); and (3) studies where no comparisons were presented (n = 26); selected studies could fall into more than one group. Overall, the studies varied considerably both in methods used and in reporting. The preference elicitation tasks included time trade-off, standard gamble, visual analogue scaling, rating/ranking, discrete choice experiments, best-worst scaling and willingness to pay elicited through a contingent valuation. Perspectives included adults' considering the health states from their own perspective, adults taking the perspective of a child (own, other, hypothetical) and a child/adolescent taking their own or the perspective of another child. There was some evidence that children gave lower values for comparable health states than did adults that adopted their own perspective or adult/parents that adopted the perspective of children. CONCLUSIONS: Differences in reporting limited the conclusions that can be formed about which methods are most suitable for eliciting preferences for children's health and the influence of differing perspectives and values. Difficulties encountered in drawing conclusions from the data (such as lack of consensus and poor reporting making it difficult for users to choose and interpret available values) suggest that reporting guidelines are required to improve the consistency and quality of reporting of studies that value children's health using preference-based techniques.

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

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.

Examining non-medical prescribing trends in New Zealand: 2016-2020.

BACKGROUND: Population growth and general practitioner workforce constraints are creating increasing demand for health services in New Zealand (NZ) and internationally. Non-medical prescribing (NMP) is one strategy that has been introduced to help manage this. Little is known about the NMP practice trends in NZ. The aim of this study was to provide a current overview of the scale, scope, and trends of NMP practice in NZ. METHODS: All claims for community dispensed medicines prescribed by a non-medical prescriber were extracted from the NZ Pharmaceutical Collection for the period 2016-2020. Patient demographics were retrieved from the Primary Health Organisation enrolment collection. These national databases contain prescription information for all subsidised community pharmacy medicines dispensed and healthcare enrolment data for 96% of New Zealanders. RESULTS: The proportion of prescriptions written by all NMP providers and patients receiving NMP prescriptions increased each year from 1.8% (2016) to 3.6% (2019) and 8.4% (2016) to 14.4% (2019) respectively. From 2016 to 2019, the proportion of NMP patients who had at least one NMP prescription increased from 26% to 39% for nurse prescribers, from 1% to 9% for pharmacist prescribers, from 2% to 3% for dietitian prescribers, and decreased from 47% to 22% for dentists, and from 20% to 12% for midwives. The most commonly prescribed medicines were antibiotics (amoxicillin, amoxicillin with clavulanic acid, and metronidazole), and analgesics (paracetamol, and codeine phosphate). While some NMP providers were prescribing for patients with greater health needs, all NMP providers could be better utilised to reach more of these patients. CONCLUSIONS: This study highlights that although the NMP service has been implemented in NZ, it has yet to become mainstream healthcare practice. This work provides a baseline to evaluate the NMP service moving forward and enable policy development. Improved implementation and integration of primary care NMP services can ensure continued access to prescribing services and medicines for our communities.

Identifying Community Pharmacist Preferences For Prescribing Services in Primary Care in New Zealand: A Discrete Choice Experiment.

OBJECTIVE: Given increasing patient populations, general practitioner (GP) workforce constraints and increasing demand for health services in New Zealand (NZ), the development and provision of pharmacist prescribing services may need to increase to improve people's access to medicines. A discrete choice experiment (DCE) was utilised to determine community pharmacist preferences for prescribing services in primary care in NZ, and to understand how these factors could improve the provision of pharmacist prescribing services. METHODS: A D-efficient design generated 30 labelled choice questions in three blocks of ten, and three alternatives per choice question. The online DCE was emailed to practising community pharmacists in NZ. The DCE included two attributes with five levels (prescribing model, educational requirements) and three attributes with three levels (location, professional fee, change in income). A mixed multinomial logit model was used to estimate preferences. RESULTS: A total of 264 respondents completed the survey with 2640 observations for analyses. This DCE found pharmacists preferred pharmacy services with the following characteristics: ability to prescribe using minor ailments and independent prescribing models relative to the pharmacist-only medicines prescribing model; prescribing education by accredited learning modules relative to PGDipClinPharm + PGCertPharmPres; remuneration via a professional fee; and pharmacist prescribing services located in community pharmacies rather than in GP practices. CONCLUSIONS: Prescribing policy could incorporate these pharmacist preferences to help develop accessible and effective pharmacist prescribing services that not only improve access to medicines, but also address inequity of access to medicines in NZ. These DCE results are encouraging as they signal that the community pharmacists also see themselves and their pharmacies as part of the prescribing team in primary care in NZ.

Non-medical prescribing in New Zealand: an overview of prescribing rights, service delivery models and training.

AIM: In this paper, we aim to provide an updated source of information for nonmedical prescribing (NMP) in New Zealand (NZ). METHODS: A variety of NZ sources were used to collect data: legislation, policy documents and information from professional and regulatory organizations, and education providers. RESULTS: In NZ, the legal categories for prescribers include authorized, designated, and delegated prescribers. Authorized prescribers include dentists, midwives, nurse practitioners, and optometrist prescribers. Designated prescribers include pharmacist prescribers, registered nurse prescribers, and dietitian prescribers. There are no delegated prescribers in NZ at this time. There is variation in the regulation, educational programmes and prescribing competencies used by the different prescribing health professionals involved in NMP in NZ. CONCLUSION: This update collates relevant information relating to NMP in NZ into one consolidated document and provides policy makers with a current overview of prescribing rights, service delivery models, training requirements, and prescribing competencies used for NMP in NZ. As NMP in NZ continues to expand and evolve, this paper will form a baseline for future NMP research in NZ. NZ needs to develop overarching NMP policy to enable consistency in the various aspects of NMP, thereby delivering a safe and sustainable NMP service in NZ.