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1.
Qual Life Res ; 32(12): 3507-3520, 2023 Dec.
Article in English | MEDLINE | ID: mdl-37530960

ABSTRACT

PURPOSE: Despite international policies to support the health and wellbeing of informal (family) caregivers, there is no consensus on how to evaluate the effectiveness of carer support. We aimed to develop and validate a new quality-of-life measure for carers (LTCQ-Carer) and to assess its potential for use within a clinical pathway. METHODS: Psychometric properties of LTCQ-Carer were tested through cognitive interviews (qualitative phase) and a pilot survey (quantitative phase). Participants were family caregivers of people recently diagnosed with mild cognitive impairment (MCI) or dementia, recruited through one of 14 memory clinics in south-east England. They self-completed the new measure and comparative existing measures (EQ-5D, ASCOT-Carer). Ongoing feedback from memory clinic staff on potential use of LTCQ-Carer was collected. RESULTS: Interview participants (n = 10) found all draft items of LTCQ-Carer relevant and prompted inclusion of a new item on 'time to yourself'. Responses from survey participants (n = 107) indicated acceptability (low missing data), high internal reliability (Cronbach's α = 0.95), and a general construct (single factor loadings 0.43-0.86 for all items). Observation of predicted associations with EQ-5D and ASCOT-Carer supported construct validity. Responsiveness requires further testing as evidence was inconclusive. Clinical staff feedback on potential use was positive. CONCLUSION: LTCQ-Carer is a valid new measure for assessing family caregivers' quality of life across broad health and social care domains, expanding the range of high-quality tools for evaluating carer support. When used concurrently with patient assessment, it could highlight carer needs and prompt appropriate family support at the earliest point in the clinical pathway.


Subject(s)
Caregivers , Quality of Life , Humans , Quality of Life/psychology , Caregivers/psychology , Reproducibility of Results , England , Surveys and Questionnaires
2.
J R Anthropol Inst ; 29(4): 820-839, 2023 Dec.
Article in English | MEDLINE | ID: mdl-38504823

ABSTRACT

With the reflexive turn in the social sciences, emotional engagement is an inevitable and crucial part of data-gathering and analysis. However, there is a glaring gap in methodological discussions to this end. Presenting ethnographic research into end of life with people living at home in England with heart failure, we argue for a methodological blend of engagement and detachment that shifts throughout the research process, and that sensory experience is a core part of engagement. We offer ethnographic examples which present and explore some alternatives to emotional engagement and objective detachment: (1) moving with participants to facilitate engagement during fieldwork through shared sensory experience; (2) detachment as a different way of relating when exiting the field and drawing participant relationships to a close; and (3) ethnographic closeness as the interplay of engagement and detachment in participant debriefing and data analysis. Based on well-established anthropological concepts, and taking both engagement and detachment as embodied and relational, we develop a notion of ethnographic closeness in which detachment is a necessary part. Our detailed methodological discussion thus offers theoretically grounded possibilities and alternatives for approaching and managing the core tension of 'how close is too close?' in ethnographic practice. Further contributions supporting researchers in navigating ethnographic research are needed.


Proximité ethnographique : réflexions méthodologiques sur l'interaction entre engagement et détachement dans la recherche ethnographique en immersionRésuméComposante inévitable et essentielle de la collecte et de l'analyse des données depuis le tournant réflexif pris par les sciences sociales, l'engagement émotionnel est pourtant remarquablement absent des discussions méthodologiques. En présentant leurs recherches ethnographiques sur la fin de vie à domicile de personnes insuffisantes cardiaques en Angleterre, les autrices plaident en faveur d'une méthodologie combinant engagement et détachement, dont l'équilibre est amené à changer au long du processus de recherche, et avancent que l'expérience sensorielle est une composante centrale de l'engagement. Plusieurs exemples ethnographiques décrivent et explorent quelques possibilités autres que l'engagement émotionnel et le détachement objectif : (1) bouger avec les sujets de l'enquête ethnographique, afin de faciliter l'engagement par une expérience sensorielle partagée, (2) utiliser le détachement comme un mode relationnel différent au moment de quitter le terrain et de mettre fin à la relation d'enquête (3) pratiquer une proximité ethnographique combinant engagement et détachement dans l'analyse des données et la restitution. Sur la base de concepts anthropologiques bien établis, en considérant aussi bien l'engagement que le détachement comme incarnés et relationnels, les autrices élaborent une notion de la proximité ethnographique dont le détachement est un élément nécessaire. La discussion méthodologique détaillée offre donc d'autres possibilités, fondées sur la théorie, pour approcher et gérer la tension à la limite entre « près ¼ et « trop près ¼, centrale dans la pratique ethnographique. D'autres contributions sont nécessaires pour aider les chercheurs à trouver leur chemin dans la recherche ethnographique.

3.
Syst Rev ; 11(1): 187, 2022 09 02.
Article in English | MEDLINE | ID: mdl-36056441

ABSTRACT

BACKGROUND: Current guidelines for healthcare of community-dwelling older people advocate screening for frailty to predict adverse health outcomes, but there is no consensus on the optimum instrument to use in such settings. The objective of this systematic review of population studies was to compare the ability of the frailty index (FI) and frailty phenotype (FP) instruments to predict all-cause mortality in older people. METHODS: Studies published before 27 July 2022 were identified using Ovid MEDLINE, Embase, Scopus, Web of Science and CINAHL databases. The eligibility criteria were population-based prospective studies of community-dwelling older adults (aged 65 years or older) and evaluation of both the FI and FP for prediction of all-cause mortality. The Scottish Intercollegiate Guidelines Network's Methodology checklist was used to assess study quality. The areas under the receiver operator characteristic curves (AUC) were compared, and the proportions of included studies that achieved acceptable discriminatory power (AUC>0.7) were calculated for each frailty instrument. The results were stratified by the use of continuous or categorical formats of each instrument. The review was reported in accordance with the PRISMA and SWiM guidelines. RESULTS: Among 8 studies (range: 909 to 7713 participants), both FI and FP had comparable predictive power for all-cause mortality. The AUC values ranged from 0.66 to 0.84 for FI continuous, 0.60 to 0.80 for FI categorical, 0.63 to 0.80 for FP continuous and 0.57 to 0.79 for FP categorical. The proportion of studies achieving acceptable discriminatory power were 75%, 50%, 63%, and 50%, respectively. The predictive ability of each frailty instrument was unaltered by the number of included items. CONCLUSIONS: Despite differences in their content, both the FI and FP instruments had modest but comparable ability to predict all-cause mortality. The use of continuous rather than categorical formats in either instrument enhanced their ability to predict all-cause mortality.


Subject(s)
Frailty , Aged , Frail Elderly , Frailty/diagnosis , Frailty/epidemiology , Geriatric Assessment/methods , Humans , Phenotype , Prospective Studies
4.
Soc Sci Med ; 292: 114557, 2022 01.
Article in English | MEDLINE | ID: mdl-34837829

ABSTRACT

BACKGROUND: The importance of physical activity in early childhood for establishing long-term health is well understood, yet with the exception of recent WHO guidelines, public health initiatives rarely focus on children below school age. Moreover, little is known about how domestic spaces and day-to-day caring activities influence preschool-age children's physical activity. To examine this, we explore caregivers' perceptions of young children's activities within and outside the home, and we consider how lived experiences of caregiving align (or not) with current physical activity policy. METHODS: Semi-structured interviews with 49 parents and grandparents from 16 families were conducted in Oregon, USA; each family had a child aged 3-5 years. Questions focused on caregivers' perceptions of and involvement with children's body weights, activities, and food practices. The interviews were analysed using thematic analysis. Our analysis drew on a materialities framework, attending to relationships between children, caregivers, spaces in and around the home, and everyday activities. RESULTS: Four themes were developed: appropriateness of outside versus inside spaces for physical activity; making accommodations for physical activity in the home; active spaces of care, referring to relationships among space, activity type, and caregiver attention; and mundane movement, or the low-intensity movement of everyday life. Together, the results highlight that children's day-to-day activities cut across a spectrum of movement, mediated by available spaces and caregiving affordances. CONCLUSIONS: Attending to the full spectrum of children's movements highlights how children's activities interlink with family routines, available indoor and outdoor spaces, and the intended uses of these spaces. These interplays between space, care, and physical activity enacted at the household level should inform an integrated, systems-level public health approach to increasing health and well-being for preschool-age children. Suggestions for improvement include coordinating policy development across multiple fields (e.g., housing design, urban planning) that structure the activities of children and their caregivers across 'home' and 'outside' spaces.


Subject(s)
Grandparents , Child , Child, Preschool , Exercise , Family , Humans , Parents , Policy
5.
Qual Life Res ; 30(6): 1641-1652, 2021 Jun.
Article in English | MEDLINE | ID: mdl-33575918

ABSTRACT

PURPOSE: The aim of this study was to validate the Long-Term Conditions Questionnaire (LTCQ) among patients using memory clinic services in England. LTCQ is a short self-administered measure of 'living well with long-term conditions' that has not been previously tested in patients with cognitive impairment. METHODS: The mixed-methods study included cognitive interviews to test the comprehensibility and content validity of LTCQ from the patient's perspective, followed by a pilot survey to test the measure's internal consistency, construct validity, structural validity, and responsiveness. Participants were recruited through memory clinics following a diagnosis of mild cognitive impairment or dementia. RESULTS: Interview respondents (n = 12) all found LTCQ's content relevant, with only minor formatting modifications required. Among survey respondents (n = 105), most patients (86%) were able to self-report answers to LTCQ. High multimorbidity among the sample was associated with reduced LTCQ and EQ-5D scores. Internal consistency of LTCQ was high (Cronbach's α = 0.93), no floor or ceiling effects were observed, and missing data levels were low. Factor analysis results further supported LTCQ's structural validity, and predicted positive correlation with EQ-5D indicated construct validity. Score changes observed in a four-month follow-up survey (n = 61) are suggestive of LTCQ's responsiveness. CONCLUSION: LTCQ is a valid means of assessing health-related quality of life for people living with cognitive impairment (including dementia) in the early period of support following diagnosis. Owing to high levels of multimorbidity in this patient population, LTCQ offers an advantage over dementia-specific measures in capturing the cumulative impact of all LTCs experienced by the patient.


Subject(s)
Cognitive Dysfunction/psychology , Dementia/psychology , Health Status , Psychometrics/methods , Quality of Life/psychology , England , Humans , Male , Memory/physiology , Middle Aged , Multimorbidity , Pilot Projects , Reproducibility of Results , Self Report , Surveys and Questionnaires , United Kingdom
6.
Qual Life Res ; 30(11): 3015-3033, 2021 Nov.
Article in English | MEDLINE | ID: mdl-32651805

ABSTRACT

PURPOSE: Patient-reported outcome and experience measures (PROMs/PREMs) are well established in research for many health conditions, but barriers persist for implementing them in routine care. Implementation science (IS) offers a potential way forward, but its application has been limited for PROMs/PREMs. METHODS: We compare similarities and differences for widely used IS frameworks and their applicability for implementing PROMs/PREMs through case studies. Three case studies implemented PROMs: (1) pain clinics in Canada; (2) oncology clinics in Australia; and (3) pediatric/adult clinics for chronic conditions in the Netherlands. The fourth case study is planning PREMs implementation in Canadian primary care clinics. We compare case studies on barriers, enablers, implementation strategies, and evaluation. RESULTS: Case studies used IS frameworks to systematize barriers, to develop implementation strategies for clinics, and to evaluate implementation effectiveness. Across case studies, consistent PROM/PREM implementation barriers were technology, uncertainty about how or why to use PROMs/PREMs, and competing demands from established clinical workflows. Enabling factors in clinics were context specific. Implementation support strategies changed during pre-implementation, implementation, and post-implementation stages. Evaluation approaches were inconsistent across case studies, and thus, we present example evaluation metrics specific to PROMs/PREMs. CONCLUSION: Multilevel IS frameworks are necessary for PROM/PREM implementation given the complexity. In cross-study comparisons, barriers to PROM/PREM implementation were consistent across patient populations and care settings, but enablers were context specific, suggesting the need for tailored implementation strategies based on clinic resources. Theoretically guided studies are needed to clarify how, why, and in what circumstances IS principles lead to successful PROM/PREM integration and sustainability.


Subject(s)
Implementation Science , Patient Reported Outcome Measures , Australia , Canada , Humans , Quality of Life/psychology
7.
Soc Sci Med ; 271: 112066, 2021 02.
Article in English | MEDLINE | ID: mdl-30563774

ABSTRACT

Over the past 40 years a global discourse on population obesity has emerged, with moral outrage surrounding the rise in childhood obesity during this time. Women are portrayed as predominantly to blame for the intergenerational transmission of obesity, due to gender norms emphasising maternal responsibility during early-life events. Through a structured review of recent studies exploring epigenetic and social mechanisms of obesity risk transmission, we argue that the role of the father in influencing the obesity risk of children during early life is underappreciated. Paternal actions, embedded within a structural network of the social determinants of health, operate both pre-conception to induce epigenetic changes to the spermatozoa and during the gestational period to influence developmental programming. Paternal contributions influenced by social structures including poor diet and stress influence the subsequent metabolic functioning of the child. An examination of epigenetic pathways, operating at the nexus of genomics and human behaviour, sheds new light on shared parental responsibility for the intergenerational origins of obesity. These emergent findings call into question the effectiveness of early-life obesity interventions that focus exclusively on the mother. More broadly, an examination of the epigenetics of obesity reveals a two-way dynamic between social processes and genomic health information. On the one hand, epigenetic pathways could be an explanatory link between the social determinants of health and physiological outcomes such as obesity. Conversely, a critical appraisal of how this emerging epigenetics knowledge is debated and employed can highlight the very processes that reinforce existing gender disparities in the social determinants of health framework. Ultimately this critical appraisal could lead to a reconfiguration of research and health services agendas, towards more equitable responsibilities across genders for preventing obesity.


Subject(s)
Fathers , Pediatric Obesity , Child , Epigenesis, Genetic , Epigenomics , Female , Humans , Male , Pediatric Obesity/genetics , Social Determinants of Health
8.
Health Qual Life Outcomes ; 18(1): 375, 2020 Nov 30.
Article in English | MEDLINE | ID: mdl-33256754

ABSTRACT

BACKGROUND: The aim of the current study was to evaluate the structural validity of the 20-item long-term conditions questionnaire (LTCQ) and to explore a potential short-form version of the scale using Rasch analysis. METHODS: Data were collected through postal surveys (February 2016-January 2017) from a sample of 1,211 participants diagnosed with at least one long-term condition (LTC). Identified participants were invited through either local authorities for a social care cohort (n = 294) or primary care practices for a health care cohort (n = 917). Participants were mailed a survey, including the LTCQ, demographic questions, a comorbidities measure, and other validated outcome measures. Respondents were invited to complete a follow-up survey including the LTCQ for assessment of reproducibility. RESULTS: The main assumptions of the Rasch model from the LTCQ were fulfilled, although infit and outfit indices indicated some items showed misfit. Misfitted items, items that did not have a preceding set or showed some local dependence were removed one at a time, with the remaining candidate items to form an 8-item short version, the LTCQ-8. The Rasch model for the LTCQ-8 explained 64% variance and had a reliability estimate greater than 0.80. Several items in the LTCQ showed uniform differential item function (DIF) in relation to the number of reported LTCs, age, cohort and type of LTCs, but fewer items exhibited DIF in the LTCQ-8. Spearman's rho correlations between the LTCQ and the LTCQ-8 were strong across the total sample and various subgroups. Correlations between the LTCQ-8 and all reference measures were moderate to strong, and comparable to correlations found between the LTCQ and these measures. CONCLUSIONS: The LTCQ measures a unidimensional construct, and it is therefore acceptable to use a summed total score. The LTCQ-8 also met the assumption of unidimensionality and had comparable construct validity with the LTCQ. Additional validation is required in an independent sample.


Subject(s)
Outcome Assessment, Health Care , Primary Health Care/standards , Quality of Life , Social Support , Adult , Aged , Aged, 80 and over , Chronic Disease/psychology , Cohort Studies , Female , Humans , Male , Middle Aged , Patient Reported Outcome Measures , Psychometrics/instrumentation , Reproducibility of Results , Young Adult
9.
Health Qual Life Outcomes ; 18(1): 279, 2020 Aug 14.
Article in English | MEDLINE | ID: mdl-32795317

ABSTRACT

PURPOSE: The aim of this work was to develop a mapping algorithm for estimating EuroQoL 5 Dimension (EQ-5D) utilities from responses to the Long-Term Conditions Questionnaire (LTCQ), thus increasing LTCQ's potential as a comprehensive outcome measure for evaluating integrated care initiatives. METHODS: We combined data from three studies to give a total sample of 1334 responses. In each of the three datasets, we randomly selected 75% of the sample and combined the selected random samples to generate the estimation dataset, which consisted of 1001 patients. The unselected 25% observations from each dataset were combined to generate an internal validation dataset of 333 patients. We used direct mapping models by regressing responses to the LTCQ-8 directly onto EQ-5D-5L and EQ-5D-3L utilities as well as response (or indirect) mapping to predict the response level that patients selected for each of the five EQ-5D-5L domains. Several models were proposed and compared on mean squared error and mean absolute error. RESULTS: A two-part model with OLS was the best performing based on the mean squared error (0.038) and mean absolute error (0.147) when estimating the EQ-5D-5L utilities. A multinomial response mapping model using LTCQ-8 responses was used to predict EQ-5D-5L responses levels. CONCLUSIONS: This study provides a mapping algorithm for estimating EQ-5D utilities from LTCQ responses. The results from this study can help broaden the applicability of the LTCQ by producing utility values for use in economic analyses.


Subject(s)
Quality of Life , Surveys and Questionnaires/standards , Adult , Chronic Disease/psychology , Chronic Disease/therapy , Datasets as Topic , Female , Humans , Male , Middle Aged
10.
Health Qual Life Outcomes ; 17(1): 37, 2019 Feb 14.
Article in English | MEDLINE | ID: mdl-30764833

ABSTRACT

BACKGROUND: Multi-morbidity in chronic long-term conditions is a major concern for health services. Self-management in concert with clinical care forms part of the effective management of multi-morbidity. Self-efficacy is a mechanism through which self-management can be achieved. Quality of life is adversely impacted by multi-morbidity but could be improved by effective self-management. This study examines the relationship between self-efficacy and quality of life in primary care patients with multi-morbidity. METHODS: A cross-sectional survey was conducted with primary care patients in England. Potential participants were mailed a questionnaire containing quality of life measures (the EQ-5D-5L and the Long-Term Conditions Questionnaire (LTCQ)), the Disease Burden Impact Scale (DBIS) and the Self-efficacy for Managing Chronic Disease Scale. Descriptive statistics, analysis of variance and linear regression analyses were conducted to examine the relationship between quality of life (dependent variable), self-efficacy, and demographic and disease-related variables. RESULTS: The 848 participants living with multi-morbidity reported a mean of 6.46 (SD 3.49) chronic long-term conditions, with the mean number of physical conditions 5.99 (SD 3.34) and mental health conditions 0.47 (SD 0.66). The mean scores were 15.45 (SD 12.00) for disease burden, 0.69 (SD 0.28) for the EQ-5D-5L, 65.44 (SD 23.66) for the EQ-VAS, and 69.31 (SD 21.77) for the LTCQ. The mean self-efficacy score was 6.69 (SD 2.53). The regression models were all significant at p < 0.001 (adjusted R2 > 0.70). Significant factors in all models were self-efficacy, disease burden and being permanently sick or disabled. Other factors varied between models, with the most notable being the presence of a mental health condition in the LTCQ model. CONCLUSIONS: Multi-morbid primary care patients with lower self-efficacy and higher disease burden have lower quality of life. Awareness of self-efficacy levels among patients with multi-morbidity may help health professionals identify patients who are in need of enhanced self-management support. Providing self-management support for chronic disease has been hailed as a hallmark of good care. Higher self-efficacy may lead to enhanced quality of life in multi-morbidity.


Subject(s)
Multimorbidity , Quality of Life/psychology , Self Efficacy , Self-Management/psychology , Adult , Aged , Aged, 80 and over , Chronic Disease/epidemiology , Chronic Disease/psychology , Cost of Illness , Cross-Sectional Studies , England/epidemiology , Female , Humans , Male , Mental Disorders/epidemiology , Mental Disorders/psychology , Middle Aged , Primary Health Care/statistics & numerical data , Surveys and Questionnaires , Young Adult
11.
Patient Relat Outcome Meas ; 9: 103-113, 2018.
Article in English | MEDLINE | ID: mdl-29497339

ABSTRACT

PURPOSE: The aim of this study was to assess the quality of life, number of diseases and burden of morbidity of multimorbid primary care users and whether a simple disease count or a multimorbidity burden score is more predictive of quality of life. PATIENTS AND METHODS: Primary care patients with at least 1 of 11 specified chronic conditions were invited to participate in a postal survey. Participants completed the Disease Burden Impact Scale (DBIS) questionnaire, the five dimension-five level Euro-Qol (EQ-5D-5L) and standard demographics questions. The DBIS asks participants to self-report chronic conditions and to rate the impact of each condition. Descriptive statistics and analysis of variance were used to determine quality of life, count of diseases and burden of morbidity. Multiple linear regression analyses determined whether disease count or the DBIS, adjusted for demographics, was more predictive of the EQ-5D-5L scores. RESULTS: Thirty-one percent (n=917) responded, from which 69 were excluded as they reported no or only one condition, leaving 848 (92%) in the analysis. Slightly more women (50.9%) participated; the mean age was 67.0 (SD 13.9) and the mean number of conditions was 6.5 (SD 3.49). The mean scores were: DBIS 15.5 (SD 12.00; score range 0-140, with higher scores indicating higher multimorbidity burden), EQ-5D-5L score 0.69 (SD 0.28; score range -0.28 [a state worse than death] to 1 [best possible health state]) and EQ-5D Visual Analog Scale (EQ-VAS) 65.44 (SD 23.66; score range 0-100 with higher scores meaning better health). The model using the DBIS score was more predictive of the EQ-5D-5L score and EQ-VAS than the model using the disease count (R2adj=0.53 using DBIS and R2adj=0.42 using disease count for EQ-5D-5L score, and R2adj=0.44 using DBIS versus R2adj=0.34 using disease count for EQ-VAS). All models were statistically significant (p<0.001). CONCLUSION: The DBIS is a useful measure for assessing multimorbidity from the perspective of primary care users in particular, as it is more predictive of health outcomes than a simple count of conditions.

12.
Sociol Health Illn ; 40(1): 130-145, 2018 01.
Article in English | MEDLINE | ID: mdl-29023822

ABSTRACT

Coping with chronic illness encapsulates both practical and emotional aspects of living life in relation to one's long-term health condition(s). Dominant health psychology approaches for understanding coping, which underpin a more recent policy discourse on 'self-management', focus sharply on the person affected by illness and potentially mask the influence of overarching social structure. In this paper we draw on qualitative interviews with 48 people living with long-term conditions (LTCs), in order to highlight the role that structural configurations such as healthcare systems may play in either helping or hindering people's efforts to cope with chronic illness. We argue that coping is a social process in which health and related services, situated within their wider political-economic contexts, play an active role in shaping people's attempts to live well with LTCs. More specifically, health systems are sites of social and cultural capital exchange that can differentially mobilise coping resources through access, continuity of care, and coordination across services. Whilst it is essential to recognise the personal agency of people living with chronic illness, it is also vital to acknowledge the underlying inequalities that affect the ways in which services can support such resourcefulness.


Subject(s)
Adaptation, Psychological , Chronic Disease , Health Services/statistics & numerical data , Socioeconomic Factors , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Qualitative Research , Self Care , Social Support
13.
BMJ Open ; 7(11): e019235, 2017 Nov 03.
Article in English | MEDLINE | ID: mdl-29101153

ABSTRACT

OBJECTIVE: The aim of this study was to validate a new generic patient-reported outcome measure, the Long-Term Conditions Questionnaire (LTCQ), among a diverse sample of health and social care users in England. DESIGN: Cross-sectional validation survey. Data were collected through postal surveys (February 2016-January 2017). The sample included a healthcare cohort of patients recruited through primary care practices, and a social care cohort recruited through local government bodies that provide social care services. PARTICIPANTS: 1211 participants (24% confirmed social care recipients) took part in the study. Healthcare participants were recruited on the basis of having one of 11 specified long-term conditions (LTCs), and social care participants were recruited on the basis of receiving social care support for at least one LTC. The sample exhibited high multimorbidity, with 93% reporting two or more LTCs and 43% reporting a mental health condition. OUTCOME MEASURES: The LTCQ's construct validity was tested with reference to the EQ-5D (5-level version), the Self-Efficacy for Managing Chronic Disease scale, an Activities of Daily Living scale and the Bayliss burden of morbidity scale. RESULTS: Low levels of missing data for each item indicate acceptability of the LTCQ across the sample. The LTCQ exhibits high internal consistency (Cronbach's α=0.95) across the scale's 20 items and excellent test-retest reliability (intraclass correlation coefficient=0.94, 95% CI 0.93 to 0.95). Associations between the LTCQ and all reference measures were moderate to strong and in the expected directions, indicating convergent construct validity. CONCLUSIONS: This study provides evidence for the reliability and validity of the LTCQ, which has potential for use in both health and social care settings. The LTCQ could meet a need for holistic outcome measurement that goes beyond symptoms and physical function, complementing existing measures to capture fully what it means to live well with LTCs.


Subject(s)
Chronic Disease/psychology , Patient Reported Outcome Measures , Self-Management , Social Work , Surveys and Questionnaires , Adolescent , Adult , Aged , Aged, 80 and over , Chronic Disease/therapy , Cross-Sectional Studies , England , Female , Humans , Male , Middle Aged , Primary Health Care/organization & administration , Psychometrics , Quality of Life , Reproducibility of Results , Social Support , Young Adult
14.
Patient Relat Outcome Meas ; 7: 183-193, 2016.
Article in English | MEDLINE | ID: mdl-27895523

ABSTRACT

PURPOSE: It is a key UK government priority to assess and improve outcomes in people with long-term conditions (LTCs). We are developing a new patient-reported outcome measure, the Long-Term Conditions Questionnaire (LTCQ), for use among people with single or multiple LTCs. This study aimed to refine candidate LTCQ items that had previously been informed through literature reviews, interviews with professional stakeholders, and interviews with people with LTCs. MATERIALS AND METHODS: Cognitive interviews (n=32) with people living with LTCs and consultations with professional stakeholders (n=13) and public representatives (n=5) were conducted to assess the suitability of 23 candidate items. Items were tested for content and comprehensibility and underwent a translatability assessment. RESULTS: Four rounds of revisions took place, due to amendments to item structure, improvements to item clarity, item duplication, and recommendations for future translations. Twenty items were confirmed as relevant to living with LTCs and understandable to patients and professionals. CONCLUSION: This study supports the content validity of the LTCQ items among people with LTCs and professional stakeholders. The final items are suitable to enter the next stage of psychometric refinement.

15.
Patient Relat Outcome Meas ; 7: 109-25, 2016.
Article in English | MEDLINE | ID: mdl-27621678

ABSTRACT

PURPOSE: To identify the main issues of importance when living with long-term conditions to refine a conceptual framework for informing the item development of a patient-reported outcome measure for long-term conditions. MATERIALS AND METHODS: Semi-structured qualitative interviews (n=48) were conducted with people living with at least one long-term condition. Participants were recruited through primary care. The interviews were transcribed verbatim and analyzed by thematic analysis. The analysis served to refine the conceptual framework, based on reviews of the literature and stakeholder consultations, for developing candidate items for a new measure for long-term conditions. RESULTS: Three main organizing concepts were identified: impact of long-term conditions, experience of services and support, and self-care. The findings helped to refine a conceptual framework, leading to the development of 23 items that represent issues of importance in long-term conditions. The 23 candidate items formed the first draft of the measure, currently named the Long-Term Conditions Questionnaire. CONCLUSION: The aim of this study was to refine the conceptual framework and develop items for a patient-reported outcome measure for long-term conditions, including single and multiple morbidities and physical and mental health conditions. Qualitative interviews identified the key themes for assessing outcomes in long-term conditions, and these underpinned the development of the initial draft of the measure. These initial items will undergo cognitive testing to refine the items prior to further validation in a survey.

16.
J Epidemiol Community Health ; 67(12): 1032-7, 2013 Dec 01.
Article in English | MEDLINE | ID: mdl-24052512

ABSTRACT

BACKGROUND: As most obese adults were not overweight as children, the prediction of adult obesity from childhood body size alone is limited. We constructed a two-way, multifactor risk assessment framework for predicting adult obesity during childhood using the Foresight Obesity System Map and tested it against longitudinal data from the 1958 National Child Development Study. METHODS: The framework divided study participants according to two categories of risk: 'conditioning factors' (past/fixed events and conditions) and 'intervention factors' (present and modifiable). At the age of 11 years, conditioning factors were 'low/high birth weight' and 'absence of breastfeeding', and intervention factors were 'low childhood activity level' and 'having at least one obese parent'. From a composite score of all four variables, study participants were assigned to one of the four risk groups: low risk, past 'conditioning' risk only, present 'intervention' risk only and high combined risk. ORs and relative risks for the development of future overweight/obesity at ages 23, 33 and 42 years were calculated for each risk group. RESULTS: Those identified in the highest risk category at the age of 11 were around twice as likely to become overweight (body mass index (BMI)≥25 kg/m(2)) by the age of 23 years, and obese (BMI≥30 kg/m(2)) by ages 33 and 42 years, in comparison to their low-risk peers (total sample, N=11 752). Increased prevalence of future obesity was also observed for high-risk children who were not already overweight at the age of 11 (filtered sample, N=9549). CONCLUSIONS: This framework identifies a greater proportion of the population that is at risk for future obesity than does childhood weight assessment alone.


Subject(s)
Body Mass Index , Obesity/diagnosis , Obesity/etiology , Risk Assessment/methods , Adult , Breast Feeding , Child, Preschool , Cohort Studies , Female , Humans , Infant , Male , Obesity/epidemiology , Odds Ratio , Predictive Value of Tests , Prevalence , Risk Factors , United Kingdom/epidemiology
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