Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review.
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SUBMITTER: Biagioli V
PROVIDER: S-EPMC8995847 | biostudies-literature | 2022
REPOSITORIES: biostudies-literature
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Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review.
Biagioli Valentina V Spitaletta Giuseppina G Kania Valeria V Mascolo Rachele R Gawronski Orsola O Liburdi Annachiara A Manzi Giulia G Salata Michele M Vellone Ercole E Tiozzo Emanuela E Dall'Oglio Immacolata I
Frontiers in pediatrics 20220328
Children and young adults (CYAs) with chronic conditions need to engage in self-care to improve their quality of life. This study aimed to retrieve the literature on instruments to assess self-care in CYAs living with chronic conditions and evaluate the psychometric proprieties of the instruments retrieved. A systematic literature review was conducted on six databases to identify peer-reviewed papers that described or used an evaluation instrument of self-care in CYAs with chronic conditions. Tw ...[more]
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Project description:Given the high prevalence of chronic conditions and multimorbidity in older adults, there is a need to better conceptualize and measure self-care and self-management to promote a person-centered approach. This scoping review aimed to identify and map instruments measuring self-care and self-management of chronic conditions by older adults. We searched six electronic databases, charted data from the studies and tools and reported the results in accordance with the PRISMA-ScR guidelines. A total of 107 articles (103 studies) containing 40 tools were included in the review. There was substantial variation in the tools in terms of their aims and scope, structure, theoretical foundations, how they were developed, and the settings in which they have been used. The quantity of tools demonstrates the importance of assessing self-care and self-management. Consideration of the purpose, scope, and theoretical foundation should guide decisions about tools suitable for use in research and clinical practice.
| S-EPMC10262344 | biostudies-literature
Project description:The purpose of this study is to test the efficacy of a peer support coaching intervention to improve activated chronic illness self-management versus an attention control group in 225 adolescents and young adults with childhood onset chronic conditions.
| 2304661 | ecrin-mdr-crc
Project description:Policy Points: Investigations on systematic methodologies for measuring integrated care should coincide with the growing interest in this field of research. A systematic review of instruments provides insights into integrated care measurement, including setting the research agenda for validating available instruments and informing the decision to develop new ones. This study is the first systematic review of instruments measuring integrated care with an evidence synthesis of the measurement properties. We found 209 index instruments measuring different constructs related to integrated care; the strength of evidence on the adequacy of the majority of their measurement properties remained largely unassessed.ContextIntegrated care is an important strategy for increasing health system performance. Despite its growing significance, detailed evidence on the measurement properties of integrated care instruments remains vague and limited. Our systematic review aims to provide evidence on the state of the art in measuring integrated care.MethodsOur comprehensive systematic review framework builds on the Rainbow Model for Integrated Care (RMIC). We searched MEDLINE/PubMed for published articles on the measurement properties of instruments measuring integrated care and identified eligible articles using a standard set of selection criteria. We assessed the methodological quality of every validation study reported using the COSMIN checklist and extracted data on study and instrument characteristics. We also evaluated the measurement properties of each examined instrument per validation study and provided a best evidence synthesis on the adequacy of measurement properties of the index instruments.FindingsFrom the 300 eligible articles, we assessed the methodological quality of 379 validation studies from which we identified 209 index instruments measuring integrated care constructs. The majority of studies reported on instruments measuring constructs related to care integration (33%) and patient-centered care (49%); fewer studies measured care continuity/comprehensive care (15%) and care coordination/case management (3%). We mapped 84% of the measured constructs to the clinical integration domain of the RMIC, with fewer constructs related to the domains of professional (3.7%), organizational (3.4%), and functional (0.5%) integration. Only 8% of the instruments were mapped to a combination of domains; none were mapped exclusively to the system or normative integration domains. The majority of instruments were administered to either patients (60%) or health care providers (20%). Of the measurement properties, responsiveness (4%), measurement error (7%), and criterion (12%) and cross-cultural validity (14%) were less commonly reported. We found <50% of the validation studies to be of good or excellent quality for any of the measurement properties. Only a minority of index instruments showed strong evidence of positive findings for internal consistency (15%), content validity (19%), and structural validity (7%); with moderate evidence of positive findings for internal consistency (14%) and construct validity (14%).ConclusionsOur results suggest that the quality of measurement properties of instruments measuring integrated care is in need of improvement with the less-studied constructs and domains to become part of newly developed instruments.
| S-EPMC5192798 | biostudies-literature
Project description:IntroductionWith demographic changes, prioritizing effective care for geriatric patients to maintain functionality, independence, and quality of life is crucial. Well-developed self-management or self-care abilities, which can be maintained and improved through interventions, are of the utmost importance. To implement these interventions tailored and effectively, a thorough assessment of the individual's self-management and self-care abilities is required.ObjectiveThis scoping review aimed to identify self-management and self-care instruments suitable for geriatric patients, their underlying theories and definitions of self-management and self-care, and their similarities and differences in item content.MethodsA systematic search of the PubMed and CINAHL databases was conducted to identify retrievable full-text articles published in English in the medical and nursing fields since the 1970s, which were validated on a sample with an average age of at least 70 years, used generic rather than disease-specific items, and addressed the broad range of self-management and self-care abilities.ResultsOf the 20 included articles, six instruments were identified that were based on different theories and offered varying definitions of self-management or self-care. Despite these differences, all emphasize empowered individuals taking an active role in their care. Most address actual behavior and abilities referring to lifestyle factors and (anticipated) adjustment behavior. However, crucial aspects, such as psychological factors, (instrumental) activities of daily living, and social environment are not fully addressed in these instruments, nor are the types of execution to which the items refer, such as wants, feelings, confidence, or attitudes.ConclusionTo fully understand how geriatric patients implement daily self-management or self-care, a combination of instruments covering the important factors of self-management and self-care and addressing multiple types of item execution, such as behaviors, abilities, wants, or attitudes, is recommended. This review provides the first comprehensive overview of self-management and self-care instruments suitable for geriatric patients.
| S-EPMC10773718 | biostudies-literature
Project description:The study aimed to test and compare the reliability and validity, including sensitivity and specificity of the two self-care-related instruments, the Self-care Ability Scale for the Elderly (SASE), and the Appraisal of Self-care Agency Scale-Revised (ASAS-R), among older adults in the Chinese context.A cross-sectional design was used to conduct this study. The sample consisted of 1152 older adults. Data were collected by a questionnaire including the Chinese version of SASE (SASE-CHI), the Chinese version of ASAS-R (ASAS-R-CHI) and the Exercise of Self-Care Agency scale (ESCA). Homogeneity and stability, content, construct and concurrent validity, and sensitivity and specificity were assessed.The Cronbach's alpha (α) of SASE-CHI was 0.89, the item-to-total correlations ranged from r = 0.15 to r = 0.81, and the test-retest correlation coefficient (intra-class correlation coefficient, ICC) was 0.99 (95% CI, 0.99-1.00; P<0.001). The Cronbach's α of ASAS-R-CHI was 0.78, the item-to-total correlations ranged from r = 0.20 to r = 0.65, and the test-retest ICC was 0.95 (95% CI, 0.92-0.96; P<0.001). The content validity index (CVI) of SASE-CHI and ASAS-R-CHI was 0.96 and 0.97, respectively. The findings of exploratory and confirmatory factor analyses (EFA and CFA) confirmed a good construct validity of SASE-CHI and ASAS-R-CHI. The Pearson's rank correlation coefficients, as a measure of concurrent validity, between total score of SASE-CHI and ESCA and ASAS-R-CHI and ESCA were assessed to 0.65 (P<0.001) and 0.62 (P<0.001), respectively. Regarding ESCA as the criterion, the area under the receiver operator characteristic (ROC) curve for the cut-point of SASE-CHI and ASAS-R-CHI were 0.93 (95% CI, 0.91-0.94) and 0.83 (95% CI, 0.80-0.86), respectively.There is no significant difference between the two instruments. Each has its own characteristics, but SASE-CHI is more suitable for older adults. The key point is that the users can choose the most appropriate scale according to the specific situation.
| S-EPMC5549914 | biostudies-other
Project description:BackgroundIndividuals with Down syndrome are predisposed to a number of chronic health conditions, but the relationship between these conditions and cognitive ability is not clear. The primary objective of this systematic review is to assess this relationship by evaluating studies that measure cognitive performance in the context of Down syndrome-associated chronic health conditions.MethodsA systematic review was conducted in accordance with the Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines. Studies included in this review (1) included children, adolescent, and young adult participants with Down syndrome and one or more co-occurring health conditions; (2) were quantitative; and (3) reported outcomes related to both chronic health conditions and cognitive performance. A set of predetermined chronic health conditions that are common in Down syndrome (e.g. sleep disorders, congenital heart disease, thyroid disease, seizure disorders, and pulmonary hypertension) were selected based on prevalence rates in Down syndrome.ResultsFifteen studies met inclusion criteria. The majority these of studies assessed cognitive performance in association with sleep disorders (47%) and congenital heart disease (47%). Fewer studies reported on the effect of thyroid disease (7%) and seizure disorders (7%) on cognitive ability. None of the studies reported cognitive outcomes related to pulmonary hypertension. Of the chronic health conditions evaluated, associations between sleep disorders and cognitive dysfunction were most common among individuals with Down syndrome.ConclusionsIndividuals with Down syndrome exhibit deficits in cognitive ability, particularly related to attention, executive function and verbal processing. These deficits may be further exacerbated by the presence of chronic health conditions, particularly sleep disorders. Individuals with Down syndrome and co-occurring sleep disorders may benefit from early interventions to mitigate their risk for adverse cognitive outcomes.
| S-EPMC7485757 | biostudies-literature
Project description:BackgroundHealth impairments can result in disability and changed work productivity imposing considerable costs for the employee, employer and society as a whole. A large number of instruments exist to measure health-related productivity changes; however their methodological quality remains unclear. This systematic review critically appraised the measurement properties in generic self-reported instruments that measure health-related productivity changes to recommend appropriate instruments for use in occupational and economic health practice.MethodsPubMed, PsycINFO, Econlit and Embase were systematically searched for studies whereof: (i) instruments measured health-related productivity changes; (ii) the aim was to evaluate instrument measurement properties; (iii) instruments were generic; (iv) ratings were self-reported; (v) full-texts were available. Next, methodological quality appraisal was based on COSMIN elements: (i) internal consistency; (ii) reliability; (iii) measurement error; (iv) content validity; (v) structural validity; (vi) hypotheses testing; (vii) cross-cultural validity; (viii) criterion validity; and (ix) responsiveness. Recommendations are based on evidence syntheses.ResultsThis review included 25 articles assessing the reliability, validity and responsiveness of 15 different generic self-reported instruments measuring health-related productivity changes. Most studies evaluated criterion validity, none evaluated cross-cultural validity and information on measurement error is lacking. The Work Limitation Questionnaire (WLQ) was most frequently evaluated with moderate respectively strong positive evidence for content and structural validity and negative evidence for reliability, hypothesis testing and responsiveness. Less frequently evaluated, the Stanford Presenteeism Scale (SPS) showed strong positive evidence for internal consistency and structural validity, and moderate positive evidence for hypotheses testing and criterion validity. The Productivity and Disease Questionnaire (PRODISQ) yielded strong positive evidence for content validity, evidence for other properties is lacking. The other instruments resulted in mostly fair-to-poor quality ratings with limited evidence.ConclusionsDecisions based on the content of the instrument, usage purpose, target country and population, and available evidence are recommended. Until high-quality studies are in place to accurately assess the measurement properties of the currently available instruments, the WLQ and, in a Dutch context, the PRODISQ are cautiously preferred based on its strong positive evidence for content validity. Based on its strong positive evidence for internal consistency and structural validity, the SPS is cautiously recommended.
| S-EPMC3942271 | biostudies-literature
Project description:ObjectiveTo provide an assessment of the quality of the most frequently used self-reported, generic patient-reported outcome measures (PROMs) that measure health-related quality of life (HRQoL) in children against the good research practices recommended by ISPOR task force for the pediatric population.MethodLiterature search was conducted on OvidSP database to identify the generic pediatric PROMs used in published clinical studies. The quality of PROMs used in more than ten clinical studies were descriptively evaluated against the ISPOR task force's good research practices.ResultsSix PROMs were evaluated, namely Pediatric Quality-of-Life inventory 4.0 (PedsQL), Child Health Questionnaire (CHQ), KIDSCREEN, KINDL, DISABKIDS and Child Health and Illness Profile (CHIP). All PROMs, except KIDSCREEN, had versions for different age ranges. Domains of physical, social, emotional health and school activities were common across all the instruments, while domains of family activities, parent relations, independence, and self-esteem were not present in all. Children's input was sought during the development process of PROMs. Likert scales were used in all the instruments, supplemented with faces (smileys) in instruments for children under 8 years. KIDSCREEN and DISABKIDS were developed in a European collaboration project considering the cross-cultural impact during development.ConclusionThe comparison of the instruments highlights differences in the versions for different pediatric age groups. None of the PROMs fulfill all the good research practices recommended by the ISPOR task force. Further research is needed to define which age-appropriate domains are important for older children and adolescents.
| S-EPMC8332594 | biostudies-literature
Project description:BackgroundTo improve outcomes in children and young adults (CYAs) with chronic conditions, it is important to promote self-care through education and support.Aims(1) to retrieve the literature describing theories or conceptual models of self-care in CYAs with chronic conditions and (2) to develop a comprehensive framework.MethodsA systematic literature search was conducted on nine databases, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. All peer-reviewed papers describing a theory or a conceptual model of self-care in CYAs (0-24 years) with chronic conditions were included.ResultsOf 2674 records, 17 met the inclusion criteria. Six papers included a theory or a model of self-care, self-management, or a similar concept. Six papers developed or revised pre-existing models or theories, while five papers did not directly focus on a specific model or a theory. Patients were CYAs, mainly with type 1 diabetes mellitus and asthma. Some relevant findings about self-care in CYAs with neurocognitive impairment and in those living with cancer may have been missed.ConclusionsBy aggregating the key elements of the 13 self-care conceptual models identified in the review, we developed a new overarching model emphasizing the shift of self-care agency from family to patients as main actors of their self-management process. The model describes influencing factors, self-care behaviors, and outcomes; the more patients engaged in self-care behaviors, the more the outcomes were favorable.
| S-EPMC8037526 | biostudies-literature
Project description:BackgroundQuality of life (QoL) outcomes are used to monitor quality of care for older adults accessing aged care services, yet it remains unclear which QoL instruments best meet older adults', providers' and policymakers' needs. This review aimed to (1) identify QoL instruments used in aged care and describe them in terms of QoL domains measured and logistical details; (2) summarise in which aged care settings the instruments have been used and (3) discuss factors to consider in deciding on the suitability of QoL instruments for use in aged care services.DesignSystematic review.Data sourcesMEDLINE, EMBASE, PsycINFO, Cochrane Library and CINAHL from inception to 2021.Eligibility criteriaInstruments were included if they were designed for adults (>18 years), available in English, been applied in a peer-reviewed research study examining QoL outcomes in adults >65 years accessing aged care (including home/social care, residential/long-term care) and had reported psychometrics.Data extraction and synthesisTwo researchers independently reviewed the measures and extracted the data. Data synthesis was performed via narrative review of eligible instruments.Results292 articles reporting on 29 QoL instruments were included. Eight domains of QoL were addressed: physical health, mental health, emotional state, social connection, environment, autonomy and overall QoL. The period between 1990 and 2000 produced the greatest number of newly developed instruments. The EuroQoL-5 Dimensions (EQ-5D) and Short Form-series were used across multiple aged care contexts including home and residential care. More recent instruments (eg, ICEpop CAPability measure for Older people (ICECAP-O) and Adult Social Care Outcomes Toolkit (ASCOT)) tend to capture emotional sentiment towards personal circumstances and higher order care needs, in comparison with more established instruments (eg, EQ-5D) which are largely focused on health status.ConclusionsA comprehensive list of QoL instruments and their characteristics is provided to inform instrument choice for use in research or for care quality assurance in aged care settings, depending on needs and interests of users.
| S-EPMC8603300 | biostudies-literature