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1.
BMC Med Ethics ; 23(1): 75, 2022 07 18.
Artigo em Inglês | MEDLINE | ID: mdl-35850682

RESUMO

People who are unable to make decisions about participating in research rely on proxies to make a decision based on their wishes and preferences. However, patients rarely discuss their preferences about research and proxies find it challenging to determine what their wishes would be. While the process of informed consent has traditionally been the focus of research to improve consent decisions, the more conceptually complex area of what constitutes 'good' proxy decision-making for research has remained unexplored. Interventions are needed to improve and support proxy decision-making for research but are hampered by a lack of understanding about what constitutes decision quality in this context. A global increase in conditions associated with cognitive impairment such as dementia has led to an urgent need for more research into these conditions. The COVID-19 pandemic and subsequent necessity to conduct research with large numbers of critically ill patients has made this need even more pressing. Much of the empirical research centres on the desire to improve decision accuracy, despite growing evidence that authenticity is more reflective of the aim of proxy decisions and concerns about the methodological flaws in authenticity-focused studies. Such studies also fail to take account of the impact of decision-making on proxies, or the considerable body of research on improving the quality of healthcare decisions. This paper reports a concept synthesis of the literature that was conducted to develop the first conceptualisation of 'good' proxy decisions about research participation. Elements of decision quality were identified across three stages of decision-making: proxy preparedness for decision-making which includes knowledge and understanding, and values clarification and preference elicitation; the role of uncertainty, decisional conflict, satisfaction and regret in the decision-making process; and preference linked outcomes and their effect. This conceptualisation provides an essential first step towards the future development of interventions to enhance the quality of proxy decision-making and ensure proxy decisions represent patients' values and preferences.


Assuntos
COVID-19 , Pandemias , Diretivas Antecipadas , Tomada de Decisões , Humanos , Consentimento Livre e Esclarecido/psicologia , Procurador/psicologia
2.
PLoS One ; 17(7): e0271268, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35830451

RESUMO

Machine learning is widely used for personalisation, that is, to tune systems with the aim of adapting their behaviour to the responses of humans. This tuning relies on quantified features that capture the human actions, and also on objective functions-that is, proxies - that are intended to represent desirable outcomes. However, a learning system's representation of the world can be incomplete or insufficiently rich, for example if users' decisions are based on properties of which the system is unaware. Moreover, the incompleteness of proxies can be argued to be an intrinsic property of computational systems, as they are based on literal representations of human actions rather than on the human actions themselves; this problem is distinct from the usual aspects of bias that are examined in machine learning literature. We use mathematical analysis and simulations of a reinforcement-learning case study to demonstrate that incompleteness of representation can, first, lead to learning that is no better than random; and second, means that the learning system can be inherently unaware that it is failing. This result has implications for the limits and applications of machine learning systems in human domains.


Assuntos
Aprendizado de Máquina , Procurador , Diretivas Antecipadas , Humanos , Reforço Psicológico
5.
J Speech Lang Hear Res ; 65(6): 2343-2363, 2022 06 08.
Artigo em Inglês | MEDLINE | ID: mdl-35623338

RESUMO

PURPOSE: Growing evidence suggests that fatigue associated with listening difficulties is particularly problematic for children with hearing loss (CHL). However, sensitive, reliable, and valid measures of listening-related fatigue do not exist. To address this gap, this article describes the development, psychometric evaluation, and preliminary validation of a suite of scales designed to assess listening-related fatigue in CHL: the pediatric versions of the Vanderbilt Fatigue Scale (VFS-Peds). METHOD: Test development employed best practices, including operationalizing the construct of listening-related fatigue from the perspective of target respondents (i.e., children, their parents, and teachers). Test items were developed based on input from these groups. Dimensionality was evaluated using exploratory factor analyses (EFAs). Item response theory (IRT) and differential item functioning (DIF) analyses were used to identify high-quality items, which were further evaluated and refined to create the final versions of the VFS-Peds. RESULTS: The VFS-Peds is appropriate for use with children aged 6-17 years and consists of child self-report (VFS-C), parent proxy-report (VFS-P), and teacher proxy-report (VFS-T) scales. EFA of child self-report and teacher proxy data suggested that listening-related fatigue was unidimensional in nature. In contrast, parent data suggested a multidimensional construct, composed of mental (cognitive, social, and emotional) and physical domains. IRT analyses suggested that items were of good quality, with high information and good discriminability. DIF analyses revealed the scales provided a comparable measure of fatigue regardless of the child's gender, age, or hearing status. Test information was acceptable over a wide range of fatigue severities and all scales yielded acceptable reliability and validity. CONCLUSIONS: This article describes the development, psychometric evaluation, and validation of the VFS-Peds. Results suggest that the VFS-Peds provide a sensitive, reliable, and valid measure of listening-related fatigue in children that may be appropriate for clinical use. Such scales could be used to identify those children most affected by listening-related fatigue, and given their apparent sensitivity, the scales may also be useful for examining the effectiveness of potential interventions targeting listening-related fatigue in children. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.19836154.


Assuntos
Percepção Auditiva , Perda Auditiva , Fadiga Mental , Inquéritos e Questionários , Adolescente , Percepção Auditiva/fisiologia , Criança , Perda Auditiva/fisiopatologia , Humanos , Fadiga Mental/diagnóstico , Pais , Procurador , Psicometria , Reprodutibilidade dos Testes , Professores Escolares
6.
Soc Sci Med ; 305: 115046, 2022 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-35636050

RESUMO

PURPOSE: Quality of life is an important person-centred outcome in health and aged care settings. Due to an increasing prevalence of cognitive decline and dementia in ageing populations, a proportion of older people receiving health and aged care services may not be able to reliably assess their own quality of life, highlighting the need for proxy assessment. This systematic review sought to investigate the level of agreement between self and proxy-report of older people's quality of life using established preference-based instruments of quality of life suitable for economic evaluation. METHODS: A systematic review was conducted following PRISMA guidelines. Eight databases were searched: Web of Science, Scopus, Medline, Econlit, PsychINFO, CINAHL, Ageline and Cochrane Library. Information was extracted on the instruments, population samples (including any cognitive thresholds applied), mean scores, type of proxy, and measures of inter-rater agreement. RESULTS: A total of 50 studies using eight different preference-based quality of life instruments were identified. Most studies were cross-sectional (72%) with a wide variety of cognitive assessments and thresholds applied to define older participants with cognitive impairment. The most common proxies were family members, mostly spouses. The level of agreement between self and proxy-report was generally poor - irrespective of the instrument applied or type of proxy - with proxy-report generally indicating lower levels of quality of life than self-report. There was some evidence of stronger agreement on more observable quality of life domains e.g., physical health and mobility, relative to less observable domains e.g. emotional well-being. Few studies tracked self and/or proxy-report of quality of life longitudinally. CONCLUSIONS: More research is needed to develop evidence to inform guidance on self-report versus proxy-report of quality of life for older people receiving health and aged care services. Until then, the collection of both self and proxy reports as complementary measures is indicated.


Assuntos
Disfunção Cognitiva , Qualidade de Vida , Idoso , Disfunção Cognitiva/epidemiologia , Análise Custo-Benefício , Humanos , Procurador/psicologia , Qualidade de Vida/psicologia , Autorrelato
7.
J Pediatr Hematol Oncol Nurs ; 39(3): 155-167, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35467438

RESUMO

Introduction: Children with cancer experience distress and decreased quality of life (QOL). Creative arts therapy (CAT) is a therapeutic modality which may improve QOL. This study examined the relationship between CAT and QOL in children and adolescents with cancer. Secondary aims explored relationships between CAT and emotional reactions, resilience, and posture (to investigate future potential as an objective biomarker of QOL). Methods: Children aged 3-18 years undergoing cancer treatments and a parent proxy completed the PedsQL3.0 Cancer Module, Faces Scale for emotional reactions, Resilience Scale in adolescents (>12 years), and an inclinometer to measure thoracic kyphosis before and after CAT. CAT exposure (number of sessions) was recorded. Results: Ninety-eight children with cancer (mean age 7.8 years, range 3-17) and parent proxy were enrolled. Of the 83 participants included in the final analysis, 18 received no CAT, 32 received low dose, and 33 received high dose CAT. A significant improvement in QOL was seen with high dose CAT in (slope change, p = .015), but the overall time by group interaction was not significant. Slope change response patterns suggested that CAT led to improved posture as compared to no CAT (time by group interaction, p = .044). Discussion: CAT may be an effective intervention to improve QOL in this population. Because initial evidence suggests that posture also improves with CAT, further investigation of posture as a potential objective biomarker of QOL is supported. Further study with a randomized controlled trial is warranted.


Assuntos
Arteterapia , Neoplasias , Adolescente , Humanos , Neoplasias/terapia , Pais/psicologia , Procurador , Qualidade de Vida/psicologia
8.
JAMA Netw Open ; 5(3): e221855, 2022 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-35348712

RESUMO

Importance: The variability in individual symptom and adverse event reporting between pediatric patient-reports and proxy-reports is widely reported. However, the question of whether symptom profiles based on reports from children with cancer and their caregivers are similar or disparate have not yet been studied. Objective: To compare proxy symptom reports with patient self-reports to assess alignment. Design, Setting, and Participants: A multicenter cohort study was conducted from October 2016 to December 2018 from data collected at 9 pediatric cancer centers. Participants were a convenience sample of family caregivers or proxies of children aged 7 to 18 years who had received disease-directed oncology treatment in the form of chemotherapy for at least 1 month. Data were analyzed identifying clusters of individuals (ie, latent profiles) based on various responses (ie, indicators) in August 2021. Exposures: The children of proxy participants received upfront chemotherapy. Children and proxies completed Patient-Reported Outcomes Measurement Information System (PROMIS) surveys at 2 time points: within 72 hours preceding treatment initiation and following the course of chemotherapy. Main Outcomes and Measures: The latent profile analysis methods were applied to caregiver-proxy reports of PROMIS Pediatric symptom and function measures (anxiety, depressive symptoms, pain interference, fatigue, psychological stress, and physical function-mobility). The instrument categorized respondents as high symptom suffering, medium symptom suffering, and low symptom suffering (hereafter, high, medium, and low symptom groups, respectively). Results: Of 580 approached proxies, 431 (368 [85.00%] were female) identified as legal guardians of children aged 7 to 18 years with a first cancer diagnosis (mean [SD] age, 13.03 [3.40] years; 235 [54.65%] were male). Proxy reports of children's experiences based on the 5 proxy PROMIS measures comprised 3 distinct symptom profiles. The most common proxy assessments of children's experiences were the moderate symptom groups (45.7% [197 of 431]) and the low symptom groups profiles (40.1% [173 of 431]). A high symptom groups profile emerged which represented 14.2% (61 of 431) of proxy assessments. The number of profiles and observed distribution of profile membership was similar between child and proxy reports. Proxy reports of individual symptoms generally recorded higher scores than child reports; however, no significant difference was observed between proxies and child profile model results for the PROMIS measures. Conclusions and Relevance: Results of this cohort study suggest that, at the level of symptom severity profile, proxy caregiver reports may approximate the children's reports and may serve as a guide to care when the child is not able to self-report.


Assuntos
Neoplasias , Procurador , Adolescente , Cuidadores/psicologia , Criança , Estudos de Coortes , Feminino , Humanos , Masculino , Neoplasias/tratamento farmacológico , Medidas de Resultados Relatados pelo Paciente , Inquéritos e Questionários
9.
Dementia (London) ; 21(4): 1200-1218, 2022 May.
Artigo em Inglês | MEDLINE | ID: mdl-35232292

RESUMO

BACKGROUND: Because use of a study partner (proxy decision-maker) to give informed consent on behalf of someone living with Alzheimer's disease or related dementias (ADRD) is common in nearly all clinical research, people living with ADRD who lack a study partner are regularly excluded from participation. Social research presents different opportunities and risks than clinical research. We argue that guidelines developed for the latter may be unduly restrictive for social research and, further, that the automatic exclusion of people living with ADRD presents separate ethical challenges by failing to support extant decision-making capacity and by contributing to underrepresentation in research. PURPOSE: The study objective was to identify key components related to including cognitively vulnerable participants who lack a study partner in social research. RESEARCH DESIGN/STUDY SAMPLE: We conducted an adaptive qualitative evidence synthesis (QES) and subsequent content analysis on 49 articles addressing capacity and research consent for potentially cognitively compromised individuals, to include people living with ADRD, who lack a study partner. RESULTS: We identified four major topic areas: defining competency, capacity, and consent; aspects of informed consent; strategies to assess comprehension of risks associated with social research; and risks versus benefits. CONCLUSIONS: Based on findings, we suggest new and ethically appropriate ways to determine capacity to consent to social research, make consent processes accessible to a population experiencing cognitive challenges, and consider the risks of excluding a growing population from research that could benefit millions.


Assuntos
Doença de Alzheimer , Demência , Tomada de Decisões , Humanos , Consentimento Livre e Esclarecido , Procurador
10.
Age Ageing ; 51(3)2022 03 01.
Artigo em Inglês | MEDLINE | ID: mdl-35231095

RESUMO

OBJECTIVE: following the #BanBPSD campaign there has been critical interest in common terminology used for 'changes in behaviour' associated with dementia. However, commentaries and emerging studies have not fully considered family carer perspectives. This study explores the views of family carers on terminology and language for this paradigm. METHOD: a mixed methods online survey was conducted with family carers. Language preferences were scoped and examined with supporting open-ended questions that explored the reasons for choices. RESULTS: about 229 family carers completed the survey. Terms such as Challenging Behaviour, Behaviour that Challenges and Behavioural and Psychological Symptoms of dementia were mostly disliked. The most preferred term was a new concept called 'Behavioural and Emotional Expressions of Need' that few people had previously heard of. Overall, carers preferred positively construed, easily understood, person-centred terms that attributed changes in behaviour to unmet need, which also acknowledged the carer's role in management. CONCLUSIONS: given that carers are often the agents of change for this paradigm-where they may also be called on to act as proxy decision makers, it is important that professionals take time to explore their understandings and give due consideration to the language used when offering tailored interventions. These findings suggest that frequently used terms for changes in behaviour associated with dementia, such as Challenging Behaviour, BtC and BPSD, should be avoided.


Assuntos
Cuidadores , Demência , Cuidadores/psicologia , Demência/complicações , Demência/diagnóstico , Demência/terapia , Humanos , Idioma , Procurador , Inquéritos e Questionários
11.
BMJ Open ; 12(2): e048232, 2022 Feb 24.
Artigo em Inglês | MEDLINE | ID: mdl-35210333

RESUMO

OBJECTIVE: This prospective study used the EQ-5D utility and Visual Analogue Scale (VAS) scores to analyse the potential usefulness of proxy responses in quality of life assessments of Japanese patients with terminal lung cancer sufficiently healthy to communicate and reply by themselves. We did not investigate the potential usefulness of using proxy responses for patients who could not respond by themselves. DESIGN: A prospective observational study. SETTING: Single centre. PARTICIPANTS: The EQ-5D and VAS responses were gathered from 30 in-hospital patients with lung cancer for a total of three observation points. At nearly the same time, two nurses responded by providing proxy responses. PRIMARY AND SECONDARY OUTCOME MEASURES: EQ-5D and VAS responses. RESULTS: There were no significant differences between the patients' and nurses' responses for EQ-5D utility and VAS scores. For the five dimensions of the EQ-5D, significant differences were found between the patients' and nurses' responses for usual activities (patients' response 1.64±0.07, nurses' response 1.41±0.05, p=0.03) and anxiety/depression (patients' response: 1.40±0.05, nurses' response: 1.19±0.03, p=0.02). There was a significant weak positive correlation between patients' and nurses' responses regarding changes in responses from the first to the third observation point (Spearman's rank correlation coefficient ρ=0.228; p<0.01). CONCLUSION: The results suggest that proxy responses are useful because there were no significant differences between the patients' and nurses' responses for EQ-5D utility and VAS scores at the three observation points. These findings should, however, be verified in future large-scale trials.


Assuntos
Neoplasias Pulmonares , Qualidade de Vida , Humanos , Estudos Prospectivos , Procurador , Inquéritos e Questionários
12.
Handb Clin Neurol ; 185: 275-282, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35078605

RESUMO

From the onset of the first signs of stroke, patients are faced with a chain of events that requires quick decision-making to ensure that lifesaving care is administered. Considering that acute stroke is often associated with altered mental status and changes in cognitive-linguistic abilities, ethical dilemmas may arise when patients are unable to provide input in their own care and must rely on surrogate decision-makers to act on their behalf. Although the most critical, lifesaving decisions are made acutely, for the patients who go on to have residual chronic cognitive-linguistic deficits, loss of language, and/or impaired cognition may mean that a healthcare power of attorney or other proxy is needed to assist with medical decision-making. This chapter discusses ethical concerns surrounding the care of stroke survivors, with a focus on how poststroke cognitive-linguistic deficits can complicate this topic; clinical recommendations are provided.


Assuntos
Afasia , Transtornos Cognitivos , Afasia/etiologia , Afasia/terapia , Tomada de Decisão Clínica , Tomada de Decisões , Humanos , Procurador
13.
Neurocrit Care ; 36(2): 621-629, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-34611811

RESUMO

BACKGROUND: In some acute care trials, immediate informed consent is not possible, but deferred consent is often considered problematic. We investigated the opinions of patients, proxies, and physicians about deferred consent in an acute stroke trial to gain insight into its acceptability and effects. METHODS: Paper-based surveys were sent to patients who were randomly assigned in the Ultra-early Tranexamic Acid After Subarachnoid Hemorrhage (ULTRA) trial between 2015 and 2018 in two tertiary referral centers and to physicians of centers who agreed or declined to participate. The primary outcome measure was the proportion of respondents who agreed with deferral of consent in the ULTRA trial. Secondary outcomes included respondents' preferred consent procedure for the ULTRA trial, the effect of deferred consent on trust in physicians and scientific research, and the willingness to participate in future research. RESULTS: Eighty-nine of 135 (66%) patients or proxies and 20 of 30 (67%) physicians completed the survey. Of these, 82 of 89 (92%) patients or proxies and 14 of 20 (70%) physicians agreed with deferral of consent in the ULTRA trial. When asked for their preferred consent procedure for the ULTRA trial, 31 of 89 (35%) patients or proxies indicated deferred consent, 15 of 89 (17%) preferred immediate informed consent, and 32 of 89 (36%) had no preference. None of the patients' or proxies' trust in physicians or scientific research had decreased because of the deferred consent procedure. Willingness to participate in future studies remained the same or increased in 84 of 89 (94%) patients or proxies. CONCLUSIONS: A large majority of the surveyed patients and proxies and a somewhat smaller majority of the surveyed physicians agreed with deferred consent in the ULTRA trial. Deferred consent may enable acute care trials in an acceptable manner without decreasing trust in medicine. Future research should investigate factors facilitating the responsible use of deferred consent, such as in-depth interviews, to study the minority of participants who agreed with deferred consent but still preferred immediate informed consent.


Assuntos
Médicos , Acidente Vascular Cerebral , Estudos Transversais , Humanos , Consentimento Livre e Esclarecido , Procurador , Acidente Vascular Cerebral/terapia
14.
J Pediatr Psychol ; 47(4): 412-419, 2022 Apr 08.
Artigo em Inglês | MEDLINE | ID: mdl-34875076

RESUMO

OBJECTIVE: To examine psychosocial correlates, specifically pain intensity, pain interference, and quality of life (QOL), in patients with pediatric intracranial hypertension. We hypothesized that parents and children who report higher levels of pain intensity and interference would be associated with lower QOL. METHODS: Eighty-three patients and their families seen in the pediatric intracranial hypertension clinic of a large pediatric hospital completed self-report and parent proxy measures on QOL, mood, and other psychosocial correlates. Bivariate correlations were conducted between parent proxy and self-reports and regression analyses between pain and psychosocial correlate variables were examined. RESULTS: Parent proxy and child reports were highly correlated. Body mass index (BMI) was a significant predictor of parent proxy report of pain intensity with higher BMI associated with higher parent proxy ratings of pain intensity. Parents reported significantly higher levels of pain interference for their children compared to child report. Parent ratings of child depression symptoms, BMI, and age were significant predictors of pain interference. Higher BMI and depression symptoms and younger age were associated with more pain interference. Overall QOL was similar to other headache populations but lower than other chronic illness and healthy populations. CONCLUSIONS: Pediatric intracranial hypertension is associated with decreased QOL. Body mass index was a significant predictor of pain intensity and interference and should be monitored closely in clinic. Clinical care should include psychosocial screening to identify patients who would benefit from interventions to reduce the impact of this condition.


Assuntos
Hipertensão Intracraniana , Qualidade de Vida , Criança , Humanos , Dor , Pais/psicologia , Procurador
15.
Qual Life Res ; 31(2): 317-327, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34254262

RESUMO

AIMS: Proxy reports are often used when patients are unable to self-report. It is unclear how proxy measures are currently in use in adult health care and research settings. We aimed to describe how proxy reports are used in these settings, including the use of measures developed specifically for proxy reporting in adult health populations. METHODS: We systematically searched Medline, PsycINFO, PsycTESTS, CINAHL and EMBASE from database inception to February 2018. Search terms included a combination of terms for quality of life and health outcomes, proxy-reporters, and health condition terms. The data extracted included clinical context, the name of the proxy measure(s) used and other descriptive data. We determined whether the measures were developed specifically for proxy use or were existing measures adapted for proxy use. RESULTS: The database search identified 17,677 possible articles, from which 14,098 abstracts were reviewed. Of these, 11,763 were excluded and 2335 articles were reviewed in full, with 880 included for data extraction. The most common clinical settings were dementia (30%), geriatrics (15%) and cancer (13%). A majority of articles (51%) were paired studies with proxy and patient responses for the same person on the same measure. Most paired studies (77%) were concordance studies comparing patient and proxy responses on these measures. DISCUSSION: Most published research using proxies has focused on proxy-patient concordance. Relatively few measures used in research with proxies were specifically developed for proxy use. Future work is needed to examine the performance of measures specifically developed for proxies. SYSTEMATIC REVIEW REGISTRATION: PROSPERO No. CRD42018103179.


Assuntos
Procurador , Qualidade de Vida , Adulto , Humanos , Qualidade de Vida/psicologia
16.
Qual Life Res ; 31(2): 343-374, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34224073

RESUMO

PURPOSE: Health utility (HU) is a useful metric for evaluating cost and utility of cancer therapies or prioritizing healthcare resources. We conducted a meta-analysis to compare HUs in association with clinical parameters and identify missing cancer-related themes from the extant HU measures for pediatric cancer patients and survivors. METHODS: Studies published in the PubMed, Embase, Web of Science, and Cochrane Library were identified. Meta-analyses were performed to estimate weighted means of HUs assessed by self- and proxy-responses. Mixed-effects meta-regressions were applied to compare HUs between cancer patients/survivors and general populations. Missing themes in the extant measures were identified based on established patient-reported outcomes frameworks. RESULTS: Of 123 selected studies included pediatric cancer populations, 44% used the Health Utilities Index version 2 (HUI2), and 48% used version 3 (HUI3). Compared to general populations, cancer patients undergoing therapies for acute lymphoblastic leukemia (ALL) had 0.129 (95% CI - 0.183 to - 0.075) and brain tumor had 0.257 (95% CI - 0.354 to - 0.160) lower HUs per proxy-reported HUI3, whereas survivors of ALL had 0.028 (95% CI - 0.062 to 0.007) and brain tumor had 0.188 (95% CI - 0.237 to - 0.140) lower HUs per proxy-reported HUI3. Compared to general populations, cancer patients treated with multimodality therapy and survivors off therapy 2-5 years had significantly poorer HUs (p's < 0.05). Missing cancer-specific contents from the HU measures were identified. CONCLUSION: Pediatric cancer patients and survivors had poorer HUs than general populations. It is important to select appropriate HUs for economic evaluations, and offer interventions to minimize HU deficits for particular cancer populations.


Assuntos
Leucemia-Linfoma Linfoblástico de Células Precursoras , Qualidade de Vida , Criança , Análise Custo-Benefício , Humanos , Leucemia-Linfoma Linfoblástico de Células Precursoras/terapia , Procurador , Qualidade de Vida/psicologia , Sobreviventes
18.
Eur J Pediatr ; 181(2): 549-560, 2022 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-34424400

RESUMO

Administration of pediatric Health Related Quality of Life (HRQoL) inventories frequently assesses both the child and parent perspectives in young children with type 1 diabetes mellitus (T1DM), but parent-proxy and child self-reports may differ, and little is known on these discrepancies. The aim is to evaluate HRQoL estimated by young children with T1DM and by their mothers, potential discrepancies in the children-maternal estimates and the factors influencing these discrepancies. Thirty-five 4-to-6-year-old children (19 boys) with T1DM admitted to the Pediatric Endocrinology Department were approached with the self-report KINDL questionnaire for children aged 4-6 years (Kiddy-KINDL for children). Their mothers were approached with the parental version (Kiddy-KINDL for parents). Both versions enable measuring child HRQoL in physical, emotional wellbeing, self-esteem, family, friends, everyday functioning, and the disease dimensions, as well as KINDL total on a 0-100 scale. Statistically significant differences were found between children's and maternal estimates on the KINDL total and "Disease" scales, in that the maternal proxy-reports produced lower values. A statistically significant difference between self- and proxy-reports was found for the KINDL "Emotional wellbeing" scale values, and the maternal proxy-reports yielded higher estimates compared with children's self-reports. These associations remained significant after adjustment for major potential confounders. Maternal education, maternal marital status, insulin regimen, and achievement of glycemic control modified the effect of child-maternal discrepancies.Conclusion: Attempts should be made to improve parental understanding of child problems related to his/her disease with due account to individual family social and demographic characteristics. What is Known: • HRQoL in children with T1DM has been advocated as an important complementary outcome to clinical and laboratory markers. • Self-and parental proxy-reports on HRQoL may differ, but little is known on these discrepancies and on the factors influencing them in young children with T1DM. What is New: • Mothers tend to underestimate general and disease-related components of HRQoL but likely to overestimate psychological wellbeing of their ill young children with T1DM. • Maternal education, marital status, insulin regimen, and achievement of glycemic control modify estimations of HRQoL and child-maternal discrepancies.


Assuntos
Diabetes Mellitus Tipo 1 , Qualidade de Vida , Criança , Pré-Escolar , Feminino , Humanos , Masculino , Mães , Pais , Procurador , Inquéritos e Questionários
19.
Gerontologist ; 62(2): e112-e122, 2022 Feb 09.
Artigo em Inglês | MEDLINE | ID: mdl-32866239

RESUMO

BACKGROUND AND OBJECTIVES: Human research ethics statements support the equitable inclusion of diverse groups. Yet older people are underrepresented in clinical research, especially those with impaired decision-making capacity. The aim of this study was to identify the perspectives and experiences of older persons and their caregivers of research participation with impaired decision-making capacity. RESEARCH DESIGN AND METHODS: Scoping review of the literature and online sources in January-February 2019 (updated June 2020) according to Joanna Briggs Institute methodology and PRISMA Extension for Scoping Reviews. English-language peer-reviewed research articles and Australian online narratives were included. Data were tabulated and narratively synthesized. RESULTS: From 4,171 database records and 93 online resources, 22 articles (2000-2019, 82% United States, 16 first authors) and one YouTube webinar (2018) were initially included; updated searches yielded an additional article (2020) and YouTube webinar (2020). Studies were heterogeneous in terminology, methods, and foci, with hypothetical scenarios, quantitative analyses, and examination of proxy consent predominating. Participants (N = 7,331) were older persons (71%), caregivers of older persons with dementia/cognitive impairment (23%), and older persons with dementia/cognitive impairment (6%). Synthesis identified 2 themes: willingness to participate and decision-making approaches. DISCUSSION AND IMPLICATIONS: Research participation by older persons with dementia may be optimized through reducing risks and burdens and increasing benefits for participants, greater consumer input into study development, and shared and supported decision-making. Older persons' and caregivers' perspectives and experiences of research participation with impaired decision-making capacity require investigation in a greater range of countries and conditions other than dementia, and dissemination through more varied media.


Assuntos
Cuidadores , Demência , Diretivas Antecipadas , Idoso , Idoso de 80 Anos ou mais , Austrália , Cuidadores/psicologia , Tomada de Decisões , Demência/psicologia , Humanos , Procurador
20.
Support Care Cancer ; 30(1): 543-553, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34338855

RESUMO

PURPOSE: This cross-sectional study evaluated congruence in pain assessment among Black cancer patients taking opioids for pain and their family caregivers and the effects of patient-reported depressive symptoms and cognitive complaints on the congruence. METHODS: Patient-reported pain scores (current, average, and worst pain severity and pain interference) and caregiver proxy scores were independently assessed (Brief Pain Inventory). Patient-reported depressive symptoms (Patient Health Questionnaire-8) and cognitive complaints (Cognitive Difficulties Scale) were also assessed. Paired t-test, intraclass correlation coefficient (ICC), and Bland-Altman (BA) plots were used to evaluate group and dyad level congruence in pain assessment. The influence of patient depressive symptoms and cognitive complaints on congruence was examined using bivariate analyses and BA plots. RESULTS: Among 50 dyads, 62% of patients and 56% of caregivers were female. Patients were older than caregivers (57 vs. 50 years, p = .008). Neither statistically significant (t-test) nor clinically relevant mean differences in pain severity and interference were found at a group level. At the dyad level, congruence was poor in pain now (ICC = 0.343) and average pain severity (ICC = 0.435), but moderate in worst pain severity (ICC = 0.694) and pain interference (ICC = 0.603). Results indicated better congruence in pain severity between patients with depressive symptoms and their caregivers, compared to patients without depressive symptoms. Patient CDS scores had no significant correlations with score differences between patients and caregivers in any pain variables. CONCLUSION: Congruence varied depending on how the analysis was done. More information is needed to understand pain assessment between patients and caregivers.


Assuntos
Cuidadores , Neoplasias , Estudos Transversais , Feminino , Humanos , Neoplasias/complicações , Percepção da Dor , Procurador
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