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PURPOSE: This study explores how important well-becoming factors appear to be to children during childhood. We define well-becoming as the indicators which predict children and young people's future wellbeing and opportunities. The priority for this work was to explore whether well-becoming might be an important factor to include in outcome measures for children and young people. The inclusion of well-becoming indicators could ensure that opportunities to invest in promoting wellbeing in children's futures are not missed. METHODS: In-depth, qualitative interviews (N = 70) were undertaken with children and young people aged 6-15 years and their parents. Analysis used constant comparison and framework methods to investigate whether well-becoming factors were considered important by informants to children and young people's current wellbeing. RESULTS: The findings of the interviews suggested that children and young people and their parents are concerned with future well-becoming now, as factors such as future achievement, financial security, health, independence, identity, and relationships were identified as key to future quality of life. Informants suggested that they considered it important during childhood to aspire towards positive outcomes in children and young people's futures. CONCLUSION: The study findings, taken alongside relevant literature, have generated evidence to support the notion that future well-becoming is important to current wellbeing. We have drawn on our own work in capability wellbeing measure development to demonstrate how we have incorporated a well-becoming attribute into our measures. The inclusion of well-becoming indicators in measures could aid investment in interventions which more directly improve well-becoming outcomes for children and young people.
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Pais , Qualidade de Vida , Criança , Humanos , Adolescente , Qualidade de Vida/psicologia , Avaliação de Resultados em Cuidados de SaúdeRESUMO
BACKGROUND: For outcome measures to be useful in health and care decision-making, they need to have certain psychometric properties. The ICECAP-Supportive Care Measure (ICECAP-SCM), a seven attribute measure (1. Choice, 2. Love and affection, 3. Physical suffering, 4. Emotional suffering, 5. Dignity, 6. Being supported, 7. Preparation) developed for use in economic evaluation of end-of-life interventions, has face validity and is feasible to use. This study aimed to assess the construct validity and responsiveness of the ICECAP-SCM in hospice inpatient and outpatient settings. METHODS: A secondary analysis of data collated from two studies, one focusing on palliative care day services and the other on constipation management, undertaken in the same national hospice organisation across three UK hospices, was conducted. Other quality of life and wellbeing outcome measures used were the EQ-5D-5L, McGill Quality of Life Questionnaire - Expanded (MQOL-E), Patient Health Questionnaire-2 (PHQ-2) and Palliative Outcomes Scale Symptom list (POS-S). The construct validity of the ICECAP-SCM was assessed, following hypotheses generation, by calculating correlations between: (i) its domains and the domains of other outcome measures, (ii) its summary score and the other measures' domains, (iii) its summary score and the summary scores of the other measures. The responsiveness of the ICECAP-SCM was assessed using anchor-based methods to understand change over time. Statistical analysis consisted of Spearman and Pearson correlations for construct validity and paired t-tests for the responsiveness analysis. RESULTS: Sixty-eight participants were included in the baseline analysis. Five strong correlations were found with ICECAP-SCM attributes and items on the other measures: four with the Emotional suffering attribute (Anxiety/depression on EQ-5D-5L, Psychological and Burden on MQOL-E and Feeling down, depressed or hopeless on PHQ-2), and one with Physical suffering (Weakness or lack of energy on POS-S). ICECAP-SCM attributes and scores were most strongly associated with the MQOL-E measure (0.73 correlation coefficient between summary scores). The responsiveness analysis (n = 36) showed the ICECAP-SCM score was responsive to change when anchored to changes on the MQOL-E over time (p < 0.05). CONCLUSIONS: This study provides initial evidence of construct validity and responsiveness of the ICECAP-SCM in hospice settings and suggests its potential for use in end-of-life care research.
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Hospitais para Doentes Terminais , Qualidade de Vida , Humanos , Dor , Cuidados Paliativos , Psicometria , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
Methods for measuring outcomes suitable for economic evaluations of health and care interventions have primarily focused on adults. The validity of such methods for children and young people is questionable in areas including the outcome domains measured and how they are measured and valued, with most existing measures narrowly focusing on health. Novel methods for assessing benefits beyond health by focusing on a person's capability have also concentrated on adults to date. This paper aims to set out the rationale for capability measures in children and young people. It argues for the need to expand the evaluative space beyond health functioning towards broader capabilities, with children and young people playing an integral role in capability measure development. Drawing from existing literature, specific challenges related to the identification, measurement, and valuation of capabilities in children and young people are also discussed. Finally, the practical implications for conducting economic evaluation when measuring and valuing capabilities at different stages across the life-course are illustrated. We develop an alternative framework based on conceiving capabilities as evolving across the life-course. This framework may also be helpful in thinking about how to model health outcomes across the life-course.
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Avaliação de Resultados em Cuidados de Saúde , Qualidade de Vida , Adolescente , Criança , Análise Custo-Benefício , HumanosRESUMO
PURPOSE: Capability wellbeing measures, such as the ICECAP measures, have been proposed for use in economic evaluations to capture broader outcomes of health and care interventions. The ICECAP measures have been developed to reflect capabilities at different stages of life. Some patient groups include patients of different ages and at different stages of life, so it is not always apparent which ICECAP measure is most relevant. This study explores the impact of age and life stage on completion, where both ICECAP-A and ICECAP-O were completed by the same patient. METHODS: A think-aloud study, and an associated semi-structured interview were conducted with people receiving kidney care as a renal outpatient, kidney transplant outpatient, or through receiving facility-based haemodialysis. Qualitative analysis focused on (1) differences in responses across measures by individuals, where attributes had conceptual overlap, (2) key factors in self-reported capability levels, and (3) measure preference. RESULTS: Thirty participants were included in the study, with a mix of older and younger adults. Attributes with similar wording across measures produced similar responses compared to attributes where wording differed. Age and health were key factors for self-reported capability levels. ICECAP-A was slightly preferred overall, including by older adults. CONCLUSION: This study suggests use of ICECAP-A in patients with certain chronic health conditions that include a mix of adults across the life course. This study highlights the importance of considering the stage of life when using capability measures and in economic evaluations of health and care interventions more generally.
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Rim , Qualidade de Vida , Idoso , Análise Custo-Benefício , Humanos , Qualidade de Vida/psicologia , Autorrelato , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Palliative Care Day Services (PCDS) offer supportive care to people with advanced, progressive illness who may be approaching the end of life. Despite the growth of PCDS in recent years, evidence of their costs and effects is scarce. It is important to establish the value of such services so that health and care decision-makers can make evidence-based resource allocation decisions. This study examines and estimates the costs and effects of PCDS with different service configurations in three centres across the UK in England, Scotland and Northern Ireland. METHODS: People who had been referred to PCDS were recruited between June 2017 and September 2018. A pragmatic before-and-after descriptive cohort study design analysed data on costs and outcomes. Data on costs were collected on health and care use in the 4 weeks preceding PCDS attendance using adapted versions of the Client Service Receipt Inventory (CSRI). Outcomes, cost per attendee/day and volunteer contribution to PCDS were also estimated. Outcomes included quality of life (MQOL-E), health status (EQ-5D-5L) and capability wellbeing (ICECAP-SCM). RESULTS: Thirty-eight attendees were recruited and provided data at baseline and 4 weeks (centre 1: n = 8; centre 2: n = 8, centre 3: n = 22). The cost per attendee/day ranged from £121-£190 (excluding volunteer contribution) to £172-£264 (including volunteer contribution) across the three sites. Volunteering constituted between 28 and 38% of the total cost of PCDS provision. There was no significant mean change at 4 week follow-up from baseline for health and care costs (centre 1: £570, centre 2: -£1127, centre 3: £65), or outcomes: MQOL-E (centre 1: - 0.48, centre 2: 0.01, centre 3: 0.24); EQ-5D-5L (centre 1: 0.05, centre 2: 0.03, centre 3: - 0.03) and ICECAP-SCM (centre 1:0.00, centre 2: - 0.01, centre 3: 0.03). Centre costs variation is almost double per attendee when attendance rates are held constant in scenario analysis. CONCLUSIONS: This study highlights the contribution made by volunteers to PCDS provision. There is insufficient evidence on whether outcomes improved, or costs were reduced, in the three different service configurations for PCDS. We suggest how future research may overcome some of the challenges we encountered, to better address questions of cost-effectiveness in PCDS.
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Hospital Dia/normas , Custos de Cuidados de Saúde/estatística & dados numéricos , Cuidados Paliativos/economia , Cuidados Paliativos/normas , Adulto , Estudos de Coortes , Análise Custo-Benefício , Hospital Dia/métodos , Hospital Dia/estatística & dados numéricos , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/estatística & dados numéricos , Reino UnidoRESUMO
BACKGROUND: Effectiveness and cost-effectiveness are increasingly important considerations in determining which mental health services are funded. Questions have been raised concerning the validity of generic health status instruments used in economic evaluation for assessing mental health problems such as depression; measuring capability wellbeing offers a possible alternative. The aim of this study is to assess the validity of the ICECAP-A capability instrument for individuals with depression. METHODS: Hypotheses were developed using concept mapping. Validity tests and multivariable regression analysis were applied to data from a cross-sectional dataset to assess the performance of ICECAP-A in individuals who reported having a primary condition of depression. The ICECAP-A was collected alongside instruments used to measure: 1. depression using the depression scale of the Depression, Anxiety and Stress Scale (DASS-D of DASS-21); 2. mental health using the Kessler Psychological Distress Scale (K10); 3. generic health status using a common measure collected for use in economic evaluations, the five level version of EQ-5D (EQ-5D-5L). RESULTS: Hypothesised associations between the ICECAP-A (items and index scores) and depression constructs were fully supported in statistical tests. In the multivariable analysis, instruments designed specifically to measure depression and mental health explained a greater proportion of the variation in ICECAP-A than the EQ-5D-5L. CONCLUSION: The ICECAP-A instrument appears to be suitable for assessing outcome in adults with depression for resource allocation purposes. Further research is required on its responsiveness and use in economic evaluation. Using a capability perspective when assessing cost-effectiveness could potentially re-orientate resource provision across physical and mental health care services.
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Depressão/diagnóstico , Escalas de Graduação Psiquiátrica/estatística & dados numéricos , Adulto , Estudos Transversais , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Análise de RegressãoRESUMO
Qualitative concept elicitation can develop meaningful patient-reported outcome measures for children and young people; however, the methods used for concept elicitation are often underreported for this population. This paper provides in-depth insight into the methods used for concept elicitation with children and young people, with a focus on key stages of concept elicitation that are challenging or unique to doing this research with children. Drawing on our experiences of developing wellbeing measures for children and young people aged 6-15 years, we detail the processes followed in our qualitative concept elicitation work, covering issues related to sampling and recruitment, encouraging informed assent and freedom over children and young people's involvement in concept elicitation, and the use of creative and participatory methods to develop measure items. We provide reflections on the approaches taken to navigate challenging aspects of concept elicitation with children and young people. Our reflections suggest that using existing links and online recruitment methods can help to navigate organisational gatekeepers, and using appropriate processes to develop study information and obtain informed assent can ensure that research is inclusive and that children have the freedom to decide whether to be involved. Our adaptation of a creative and participatory activity to generate concepts for measure items suggests that such approaches can be engaging and may help to give children greater control over their participation. In detailing our methods, we hope to have developed a useful resource for other researchers, while highlighting the value of transparent reporting in this area.
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Pesquisa Qualitativa , Humanos , Adolescente , Criança , Medidas de Resultados Relatados pelo Paciente , Masculino , FemininoRESUMO
OBJECTIVES: To estimate capability wellbeing lost from the general adult populations in the UK, Australia and the Netherlands in the first year of the COVID-19 pandemic and the associated social restrictions, including lockdowns. DESIGN: Cross-sectional with recalled timepoints. SETTING: Online panels in the UK, Australia and the Netherlands conducted in February 2021 (data collected 26 January-2 March 2021). PARTICIPANTS: Representative general adult (≥ 18 years old) population samples in the UK (n = 1,017), Australia (n = 1,011) and the Netherlands (n = 1,017) MAIN OUTCOME MEASURE: Participants completed the ICECAP-A capability wellbeing measure in February 2021, and for two recalled timepoints during the initial lockdowns in April 2020 and in February 2020 (prior to COVID-19 restrictions in all three countries). ICECAP-A scores on a 0-1 no capability-full capability scale were calculated for each timepoint. Societal willingness to pay estimates for a year of full capability (YFC) was used to place a monetary value associated with change in capability per person and per country. Paired t tests were used to compare changes in ICECAP-A and YFC from pre- to post-COVID-19-related restrictions in each country. RESULTS: Mean (standard deviation) loss of capability wellbeing during the initial lockdown was 0.100 (0.17) in the UK, 0.074 (0.17) in Australia and 0.049 (0.12) in the Netherlands. In February 2021, losses compared to pre-lockdown were 0.043 (0.14) in the UK, 0.022 (0.13) in Australia and 0.006 (0.11) in the Netherlands. In monetary terms, these losses were equivalent to £14.8 billion, AUD$8.6 billion and 2.1 billion lost per month in April 2020 and £6.4 billion, A$2.6 billion and 260 million per month in February 2021 for the UK, Australia and the Netherlands, respectively. CONCLUSIONS: There were substantial losses in capability wellbeing in the first year of the COVID-19 pandemic. Future research is required to understand the specific impact of particular COVID-19 restrictions on people's capabilities.
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COVID-19 , Humanos , Adulto , Adolescente , COVID-19/epidemiologia , Estudos Transversais , Países Baixos/epidemiologia , Pandemias , Controle de Doenças Transmissíveis , Austrália/epidemiologia , Reino Unido/epidemiologiaRESUMO
BACKGROUND: Qualitative research is recommended in concept elicitation for patient-reported outcome measures to ensure item content validity, and those developing measures are encouraged to report qualitative methods in detail. However, in measure development for children and young people, direct research can be challenging due to problems with engagement and communication. OBJECTIVES: The aim of this systematic review was to (i) explore the qualitative and adapted data collection techniques that research teams have used with children and young people to generate items in existing measures and (ii) assess the quality of qualitative reporting. METHODS: Three electronic databases were searched with forward citation and reference list searching of key papers. Papers included in the review were empirical studies documenting qualitative concept elicitation with children and young people. Data on qualitative methods were extracted, and all studies were checked against a qualitative reporting checklist. RESULTS: A total of 37 studies were included. The quality of reporting of qualitative approaches for item generation was low, with information missing on sampling, data analysis and the research team, all of which are key to facilitating judgements around measure content validity. Few papers reported adapting methods to be more suitable for children and young people, potentially missing opportunities to more meaningfully engage children in concept elicitation work. CONCLUSIONS: Research teams should ensure that they are documenting detailed and transparent processes for concept elicitation. Guidelines are currently lacking in the development and reporting of item generation for children, with this being an important area for future research.
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Medidas de Resultados Relatados pelo Paciente , Adolescente , Criança , Feminino , Humanos , Masculino , Pesquisa QualitativaRESUMO
OBJECTIVES: To determine the response process validity, feasibility of completion, acceptability and preferences for three patient-reported outcome measures that could be used in economic evaluation-the EQ-5D-5L, ICECAP-A and ICECAP-O-in people requiring kidney care. DESIGN: Participants were asked to 'think-aloud' while completing the EQ-5D-5L, ICECAP-A and ICECAP-O, followed by a semistructured interview. Five raters identified errors or struggles in completing the measures from the think-aloud component of the transcripts. Patient preferences for measures were extracted from the semistructured interview. SETTING: Eligible patients were identified through a large UK secondary care renal centre. PARTICIPANTS: In total, 30 participants were included in the study, consisting of patients attending renal outpatients for chronic kidney disease (n=18), with a functioning kidney transplant (n=6) and receiving haemodialysis (n=6). RESULTS: Participants had few errors and struggles in completing the EQ-5D-5L (11% error rate, 3% struggle rate), ICECAP-A (2% error rate, 2% struggle rate) and ICECAP-O (4% error rate, 3% struggle rate). The main errors with the EQ-5D-5L were judgements that did not comply with the 'your health today' instruction. Comprehension errors were most prominent on ICECAP-O. Judgement errors were the only errors reported on ICECAP-A. Although the EQ-5D-5L had slightly more errors and struggles, it was the measure most preferred, with participants able to make a clearer link with EQ-5D-5L and their health condition. CONCLUSIONS: The EQ-5D-5L, ICECAP-A and ICECAP-O are feasible for people requiring kidney care to complete and can be included in studies conducting economic evaluations of kidney care interventions. Further research is required to assess how health (eg, EQ-5D) and capability (eg, ICECAP) measures can be included in an economic evaluation simultaneously, as well as what ICECAP measure(s) to include when patient groups straddle the age ranges for ICECAP-A (18 years and older) and ICECAP-O (65 years and older).
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Nefropatias , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Adolescente , Feminino , Humanos , Rim , Masculino , Pacientes Ambulatoriais , Psicometria , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
Open Access This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0International License.
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BACKGROUND: There is a debate in the health economics literature concerning the most appropriate way of applying Amartya Sen's capability approach in economic evaluation studies. Some suggest that quality-adjusted life years (QALYs) alone are adequate while others argue that this approach is too narrow and that direct measures of capability wellbeing provide a more extensive application of Sen's paradigm. OBJECTIVE: This paper empirically explores whether QALYs provide a good proxy for individual capabilities. METHODS: Data is taken from a multinational cross-sectional survey of individuals with seven health conditions (asthma, arthritis, cancer, depression, diabetes, hearing loss, heart disease) and a healthy population. Each individual completed the ICECAP-A measure of capability wellbeing for adults and six health utility instruments that are used to generate QALYs, including EQ-5D and SF-6D. Primary analysis examines how well health utility instruments can explain variation in the ICECAP-A using ordinary least squares regression. RESULTS: The findings show that all seven health conditions have a negative association on overall capability as measured by the ICECAP-A index. Inclusion of health utility instruments into separate regressions improves the predictive power of capability but on average, explains less than half of the variation in capability wellbeing. Individuals with arthritis appear to be less inhibited in terms of capability losses when accounting for health utility, yet those who have depression record significant reductions in capability relative to the healthy population even after accounting for the most commonly used health utility instruments. CONCLUSION: The study therefore casts doubt on the ability of QALYs to act as a reliable proxy measure of individuals' capability.
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Nível de Saúde , Anos de Vida Ajustados por Qualidade de Vida , Inquéritos e Questionários , Adolescente , Adulto , Idoso , Estudos Transversais , Feminino , Humanos , Análise dos Mínimos Quadrados , Masculino , Pessoa de Meia-Idade , Qualidade de Vida , Adulto JovemRESUMO
The primary aims of this review are to document capability applications in the health field and to explore the objectives and decision-rules of studies measuring capability more broadly. Relevant studies are identified using a literature search strategy known as "comprehensive pearl growing". All studies with a primary focus on health are assessed individually, whilst a summary narrative analysis of the full review examines the objectives of capability studies. Four distinct groups in the health field are identified in the review: (1) physical activity and diet; (2) patient empowerment; (3) multidimensional poverty and (4) assessments of health and social care interventions. Different approaches to applying mixed methods, selecting capability dimensions and weighting capabilities are found across studies. There is a noticeable non-reliance on health status as a sole indicator of capability in health. In terms of objectives of studies measuring capability, although there is a lack of consistency, an objective related to sufficiency of capabilities appeared most often in the studies found in this review. Even though one of the appeals of the capability perspective is its underspecified nature, this review highlights the challenge of finding a coherent alternative to more established approaches of evaluation.
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Amartya Sen's capability approach has been discussed widely in the health economics discipline. Although measures have been developed to assess capability in economic evaluation, there has been much less attention paid to the decision rules that might be applied alongside. Here, new methods, drawing on the multidimensional poverty and health economics literature, are developed for conducting economic evaluation within the capability approach and focusing on an objective of achieving "sufficient capability". This objective more closely reflects the concern with equity that pervades the capability approach and the method has the advantage of retaining the longitudinal aspect of estimating outcome that is associated with quality-adjusted life years (QALYs), whilst also drawing on notions of shortfall associated with assessments of poverty. Economic evaluation from this perspective is illustrated in an osteoarthritis patient group undergoing joint replacement, with capability wellbeing assessed using ICECAP-O. Recommendations for taking the sufficient capability approach forward are provided.
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Análise Custo-Benefício/métodos , Pobreza/estatística & dados numéricos , Qualidade de Vida , HumanosRESUMO
BACKGROUND: Evaluations of the impact of interventions for resource allocation purposes commonly focus on health status. There is, however, also concern about broader impacts on wellbeing and, increasingly, on a person's capability. This study aims to compare the impact on health status and capability of seven major health conditions, and highlight differences in treatment priorities when outcomes are measured by capability as opposed to health status. METHODS: The study was a cross-sectional four country survey (n = 6650) of eight population groups: seven disease groups with: arthritis, asthma, cancer, depression, diabetes, hearing loss, and heart disease and one health population 'comparator' group. Two simple self-complete questionnaires were used to measure health status (EQ-5D-5L) and capability (ICECAP-A). Individuals were classified by illness severity using condition-specific questionnaires. Effect sizes were used to estimate: (i) the difference in health status and capability for those with conditions, relative to a healthy population; and (ii) the impact of the severity of the condition on health status and capability within each disease group. FINDINGS: 5248 individuals were included in the analysis. Individuals with depression have the greatest mean reduction in both health (effect size, 1.26) and capability (1.22) compared to the healthy population. The effect sizes for capability for depression are much greater than for all other conditions, which is not the case for health. For example, the arthritis group effect size for health (1.24) is also high and similar to that of depression, whereas for the same arthritis group, the effect size for capability is much lower than that for depression (0.55). In terms of severity within disease groups, individuals categorised as 'mild' have similar capability levels to the healthy population (effect sizes <0.2, excluding depression) but lower health status than the healthy population (≥0.4). CONCLUSION: Significant differences exist in the relative effect sizes across diseases when measured by health status and capability. In terms of treating morbidity, a shift in focus from health gain to capability gain would increase funding priorities for patients with depression specifically and severe illnesses more generally.