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Value in Health : the Journal of the... Oct 2022This study aimed to identify and summarize published guidance and recommendations for child self- and proxy assessment of existing child-specific instruments of... (Review)
Review
OBJECTIVES
This study aimed to identify and summarize published guidance and recommendations for child self- and proxy assessment of existing child-specific instruments of health-related quality of life (HRQoL) that are accompanied by utilities.
METHODS
A total of 9 databases plus websites of (1) health technology assessment and health economics outcomes research organizations and (2) instrument developers were systematically searched. Studies were included if they reported guidance for child self- and proxy assessment for child populations (0-18 years old). Three reviewers independently screened titles, abstracts, and full-text reviews against the inclusion criteria. Key features of the guidance identified were summarized.
RESULTS
A total of 19 studies met the inclusion criteria. In general, journal articles provided little guidance on child self- and proxy assessment, with the majority focused on instrument development and psychometric performance more broadly. Instrument developers' websites provided more guidance for child self- and proxy reports with specific guidance found for the EQ-5D-Y and the Pediatric Quality of Life Inventory. This guidance included the minimum age for self-report and mode of administration; recommended proxy types, age range of child for whom proxy report can be completed, and target population; and recall period. Websites of leading organizations provided general guidance on HRQoL evaluation in children but lacked specific guidance about self- and proxy completion.
CONCLUSIONS
EQ-5D-Y and Pediatric Quality of Life Inventory developers' websites provided the most comprehensive guidance for self-report and proxy report of their respective instruments. More evidence is required for developing best practice guidance on why, when, and how to use self- and proxy reports in assessing HRQoL in child populations.
Topics: Adolescent; Child; Child, Preschool; Humans; Infant; Infant, Newborn; Parents; Proxy; Psychometrics; Quality of Life; Self Report; Surveys and Questionnaires
PubMed: 35667950
DOI: 10.1016/j.jval.2022.04.1723 -
Journal of Applied Research in... Sep 2022Views can be collected from individuals (self-report) or others on their behalf (proxy-report). (Review)
Review
BACKGROUND
Views can be collected from individuals (self-report) or others on their behalf (proxy-report).
OBJECTIVE
We aimed to review the literature on methods and statistical approaches used to evaluate observer versus self-report responses from individuals with intellectual disability or Down syndrome.
METHODS
A series of key questions related to statistical approaches and data collection methods were formulated a priori to inform the search strategy and review process. These addressed the topics of self-report in individuals with intellectual disability, including Down syndrome. Using the National Library of Medicine database, PubMed, detailed literature searches were performed. The quality of available evidence was then evaluated, the existing literature was summarised, and knowledge gaps and research needs were identified.
RESULTS
Fifty relevant original articles were identified which addressed at least one key question. Study details, including: research design, internal validity, external validity, and relevant results are presented. Review of studies of individuals with intellectual disability which used a variety of statistical approaches showed mixed agreement between self-report and proxy-report.
CONCLUSION
Few studies identified to-date have used self-report from individuals with Down syndrome, but lessons from the existing intellectual disability literature can guide researchers to incorporate self-report from individuals with Down syndrome in the future.
Topics: Down Syndrome; Humans; Intellectual Disability; Proxy; Self Report
PubMed: 35676858
DOI: 10.1111/jar.13013 -
Journal of the American Geriatrics... Aug 2021Quantitative studies have documented persistent regional, facility, and racial differences in the intensity of care provided to nursing home (NH) residents with advanced...
BACKGROUND/OBJECTIVES
Quantitative studies have documented persistent regional, facility, and racial differences in the intensity of care provided to nursing home (NH) residents with advanced dementia including, greater intensity in the Southeastern United States, among black residents, and wide variation among NHs in the same hospital referral region (HRR). The reasons for these differences are poorly understood, and the appropriate way to study them is poorly described.
DESIGN
Assessment of Disparities and Variation for Alzheimer's disease Nursing home Care at End of life (ADVANCE) is a large qualitative study to elucidate factors related to NH organizational culture and proxy perspectives contributing to differences in the intensity of advanced dementia care. Using nationwide 2016-2017 Minimum DataSet information, four HRRs were identified in which the relative intensity of advanced dementia care was high (N = 2 HRRs) and low (N = 2 HRRs) based on hospital transfer and tube-feeding rates among residents with this condition. Within those HRRs, we identified facilities providing high (N = 2 NHs) and low (N = 2 NHs) intensity care relative to all NHs in that HRR (N = 16 total facilities; 4 facilities/HRR).
RESULTS/CONCLUSIONS
To date, the research team conducted 275 h of observation in 13 NHs and interviewed 158 NH providers from varied disciplines to assess physical environment, care processes, decision-making processes, and values. We interviewed 44 proxies (black, N = 19; white, N = 25) about their perceptions of advance care planning, decision-making, values, communication, support, trust, literacy, beliefs about death, and spirituality. This report describes ADVANCE study design and the facilitators and challenges of its implementation, providing a template for the successful application of large qualitative studies focused on quality care in NHs.
Topics: Advance Care Planning; Aged; Alzheimer Disease; Databases, Factual; Decision Making; Female; Homes for the Aged; Humans; Male; Nursing Homes; Organizational Culture; Proxy; Qualitative Research
PubMed: 33971029
DOI: 10.1111/jgs.17217 -
Canadian Journal of Surgery. Journal... Apr 2016
Topics: Canada; Caregivers; Decision Making; Fatigue; Humans; Proxy; Terminal Care
PubMed: 27007086
DOI: 10.1503/cjs.002616 -
Canadian Journal on Aging = La Revue... Mar 2018Older adults who have reduced decision-making capacity and no family or friends to compensate for these deficiencies are known as unbefriended and require a public... (Review)
Review
Older adults who have reduced decision-making capacity and no family or friends to compensate for these deficiencies are known as unbefriended and require a public guardian. The purpose of this study was to review the peer-reviewed and grey literature to determine the scope of available research on unbefriended older adults in Canada and the United States. We found limited research examining unbefriended older adults. No Canadian studies or reports were located. Unbefriended older adults were childless or had fewer children, were more cognitively impaired, and were older than older adults who were not unbefriended. These findings demonstrate a stark scarcity of studies on unbefriended older adults. Research is urgently needed using standardized data collection of guardianship status in order to enable studies of the prevalence of public guardianship in Canada.
Topics: Aged; Canada; Cross-Sectional Studies; Decision Making; Humans; Legal Guardians; Qualitative Research; Third-Party Consent; United States; Vulnerable Populations
PubMed: 29338799
DOI: 10.1017/S0714980817000563 -
Proceedings of the National Academy of... Feb 2022Children's noncognitive or socioemotional skills (e.g., persistence and self-control) are typically measured using surveys in which either children rate their own skills...
Children's noncognitive or socioemotional skills (e.g., persistence and self-control) are typically measured using surveys in which either children rate their own skills or adults rate the skills of children. For many purposes-including program evaluation and monitoring school systems-ratings are often collected from multiple perspectives about a single child (e.g., from both the child and an adult). Collecting data from multiple perspectives is costly, and there is limited evidence on the benefits of this approach. Using a longitudinal survey, this study compares children's noncognitive skills as reported by themselves, their guardians, and their teachers. Although reports from all three types of respondents are correlated with each other, teacher reports have the highest internal consistency and are the most predictive of children's later cognitive outcomes and behavior in school. The teacher reports add predictive power beyond baseline measures of Intelligence Quotient (IQ) for most outcomes in schools. Measures collected from children and guardians add minimal predictive power beyond the teacher reports.
Topics: Child; Child Development; Cognition; Humans; Intelligence; Legal Guardians; Longitudinal Studies; Program Evaluation; Reproducibility of Results; School Teachers; Schools; Self-Control
PubMed: 35131849
DOI: 10.1073/pnas.2113992119 -
International Journal of Medical... Jul 2024Approaches to implementing online record access (ORA) via patient portals for minors and guardians vary internationally, as more countries continue to develop... (Comparative Study)
Comparative Study Observational Study
BACKGROUND
Approaches to implementing online record access (ORA) via patient portals for minors and guardians vary internationally, as more countries continue to develop patient-accessible electronic health records (PAEHR) systems. Evidence of ORA usage and country-specific practices to allow or block minors' and guardians' access to minors' records during adolescence (i.e. access control practices) may provide a broader understanding of possible approaches and their implications for minors' confidentiality and guardian support.
AIM
To describe and compare minors' and guardian proxy users' PAEHR usage in Sweden and Finland. Furthermore, to investigate the use of country-specific access control practices.
METHODS
A retrospective, observational case study was conducted. Data were collected from PAEHR administration services in Sweden and Finland and proportional use was calculated based on population statistics. Descriptive statistics were used to analyze the results.
RESULTS
In both Sweden and Finland, the proportion of adolescents accessing their PAEHR increased from younger to older age-groups reaching the proportion of 59.9 % in Sweden and 84.8 % in Finland in the age-group of 17-year-olds. The PAEHR access gap during early adolescence in Sweden may explain the lower proportion of users among those who enter adulthood. Around half of guardians in Finland accessed their minor children's records in 2022 (46.1 %), while Swedish guardian use was the highest in 2022 for newborn children (41.8 %), and decreased thereafter. Few, mainly guardians, applied for extended access in Sweden. In Finland, where a case-by-case approach to access control relies on healthcare professionals' (HCPs) consideration of a minor's maturity, 95.8 % of minors chose to disclose prescription information to their guardians.
CONCLUSION
While age-based access control practices can hamper ORA for minors and guardians, case-by-case approach requires HCP resources and careful guidance to ensure equality between patients. Guardians primarily access minors' records during early childhood and adolescents show willingness to share their PAEHR with parents.
Topics: Humans; Finland; Sweden; Retrospective Studies; Adolescent; Minors; Patient Portals; Male; Female; Confidentiality; Child; Electronic Health Records; Patient Access to Records; Legal Guardians
PubMed: 38692233
DOI: 10.1016/j.ijmedinf.2024.105465 -
Health and Quality of Life Outcomes Aug 2014A number of articles addressing various aspects of health-related quality of life (HRQoL) were published in the Health and Quality of Life Outcomes (HQLO) journal in... (Review)
Review
BACKGROUND
A number of articles addressing various aspects of health-related quality of life (HRQoL) were published in the Health and Quality of Life Outcomes (HQLO) journal in 2012 and 2013. This review provides a summary of studies describing recent methodological advances and innovations in HRQoL felt to be of relevance to clinicians and researchers.
METHODS
Scoping review of original research articles, reviews and short reports published in the HQLO journal in 2012 and 2013. Publications describing methodological advances and innovations in HRQoL were reviewed in detail, summarized and grouped into thematic categories.
RESULTS
358 titles and abstracts were screened initially, and 16 were considered relevant and incorporated in this review. Two studies discussed development and interpretation of HRQoL outcomes; two described pediatric HRQoL measurement; four involved incorporation of HRQoL in economic evaluations; and eight described methodological issues and innovations in HRQoL measures.
CONCLUSIONS
Several studies describing important advancements and innovations in HRQoL, such as the development of the PROMIS pediatric proxy-item bank and guidelines for constructing patient-reported outcome (PRO) instruments, were published in the HQLO journal in 2012 and 2013. Proposed future directions for the majority of these studies include extension and further validation of the research across a diverse range of health conditions.
Topics: Adult; Aged; Aged, 80 and over; Child; Cohort Studies; Female; Humans; Male; Middle Aged; Pediatrics; Prospective Studies; Proxy; Psychometrics; Quality of Life; Self Report
PubMed: 25169205
DOI: 10.1186/s12955-014-0110-7 -
Psychiatria Polska Jun 2021Within the scope of mental health protection, numerous practical problems arise concerning the issue of providing health services to a minor. Admission of a minor to a... (Review)
Review
Within the scope of mental health protection, numerous practical problems arise concerning the issue of providing health services to a minor. Admission of a minor to a psychiatric hospital is associated in practice with numerous doubts. This part of the article describes the conditions of admission to hospital with the consent of the patient. It distinguishes and accurately describes situations where a minor is under or over 16 years of age. In addition, it explains situations where there is a contradiction of declarations of will by legal guardians in relation to admission, their inability to perform legal acts, or a contradiction of the statements of the minor and guardian. It also addresses the aspect of receiving written consent during the COVID-19 epidemic.
Topics: Adolescent; COVID-19; Commitment of Mentally Ill; Hospitals, Psychiatric; Humans; Informed Consent; Legal Guardians; Mental Disorders; Minors; Patient Admission; Poland
PubMed: 34460883
DOI: 10.12740/PP/127885 -
Psychiatria Polska Jun 2021The prevalence of mental disorders among minors is steadily increasing in our country as well as in Europe. Contact of a minor with a psychiatric health service, and... (Review)
Review
The prevalence of mental disorders among minors is steadily increasing in our country as well as in Europe. Contact of a minor with a psychiatric health service, and especially the admission of such a person to a psychiatric hospital as a matter of urgency, however, raises a lot of legal and medical controversy. Urgent admission allows the consent of both the minor and his legal guardian to be bypassed. The article deals with legal issues related to the direct threat to life of minors for psychiatric reasons, and also presents the conditions that must occur for admission without consent not to be subject to legal tort.
Topics: Hospitalization; Hospitals, Psychiatric; Humans; Informed Consent; Legal Guardians; Poland
PubMed: 34460884
DOI: 10.12740/PP/127886