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1.
Aging Ment Health ; : 1-8, 2024 Jun 28.
Artigo em Inglês | MEDLINE | ID: mdl-38940472

RESUMO

OBJECTIVES: People with dementia (PwD) and their care partners (CP) may have difficulties in emotion regulation, and individual differences in emotion regulation may be related to PwD's neuropsychiatric symptoms. This study explores whether there is self-awareness of PwD's difficulties in emotion regulation and whether CP's emotion regulation relates to the PwD's neuropsychiatric symptoms, potentially revealing bias or interpersonal effects. METHOD: We used data from the Wish Outcome Obstacle Plan Study with a sample of 45 PwD and their spousal CP (n = 90 individuals). Multivariate linear regression models were used to investigate the associations between the CP-reported neuropsychiatric symptoms in PwD and self-reports of emotion regulation in both dyad members, net of sociodemographic and health factors. Separate analyses were conducted for each neuropsychiatric subsyndrome and each domain of difficulties in emotion regulation. RESULTS: Increasing severity of neuropsychiatric symptoms was associated with higher difficulties in emotion regulation in PwD (ß = 1.23, p < 0.05), but not with CP's difficulties in emotion regulation. When CP reported more severe neuropsychiatric symptoms in PwD, PwD reported that they had difficulties in accepting emotions, controlling impulses, goal-directed behaviors, and accessing emotion regulation strategies, but not in emotion awareness and clarification. Proxy-reports of hyperactivity and psychosis subsyndromes are significantly related to PwD's self-reported difficulties in emotion regulation. CONCLUSION: PwD reported difficulties in emotion regulation at the early stage of dementia. Proxy-reported neuropsychiatric symptoms may capture PwD's emotion regulation capability and not be biased by CP's difficulties in emotion regulation.

2.
Artigo em Inglês | MEDLINE | ID: mdl-38613676

RESUMO

This study aimed to investigate agreement and discrepancies between parent proxy- and adolescent self-reports on assessments of adolescents' health-related quality of life (HRQoL), and the role that individual factors may play in parent-adolescent agreement, in a sample of adolescents with Tourette syndrome (TS) compared to a control group of healthy adolescents. Adolescents aged 12-18 years diagnosed with TS were recruited with their parents from primary and secondary referral centres. Adolescent healthy controls were matched for gender and age. Adolescents and each of their parents completed a set of questionnaires including a HRQoL evaluation of adolescent, the 'Vécu et Santé Perçue de l'Adolescent'. Mother-adolescent, father-adolescent and mother-father agreements on adolescents' HRQoL scores were investigated at individual and group level, both in TS and control groups. Data were available for 75 adolescents, 75 mothers and 63 fathers, in the TS group. Agreement between mother, father proxy-reports and TS adolescents self-reports of HRQoL varied from poor to good, without significant difference with the control group. In TS group, mothers and fathers underestimated adolescents' HRQoL in 'Psychological well-being' subscale and mothers underestimated it in 'Physical 'well-being' subscale, while controls overestimated adolescents' HRQoL in these subscales. Larger mother-adolescent discrepancies for 'Psychological well-being' and 'Physical well-being' subscales were associated with internalizing symptoms. Regarding future studies, comprehensive evaluation of the various dimensions of adolescents' HRQoL with TS requires the integration of the perspectives of both adolescents, mothers and fathers. Clinicians should take into account this point to provide comprehensive care and services.

3.
Am J Epidemiol ; 191(12): 2075-2083, 2022 11 19.
Artigo em Inglês | MEDLINE | ID: mdl-35872590

RESUMO

Follow-up of US cohort members for incident cancer is time-consuming, is costly, and often results in underascertainment when the traditional methods of self-reporting and/or medical record validation are used. We conducted one of the first large-scale investigations to assess the feasibility, methods, and benefits of linking participants in the US Radiologic Technologists (USRT) Study (n = 146,022) with the majority of US state or regional cancer registries. Follow-up of this cohort has relied primarily on questionnaires (mailed approximately every 10 years) and linkage with the National Death Index. We compared the level of agreement and completeness of questionnaire/death-certificate-based information with that of registry-based (43 registries) incident cancer follow-up in the USRT cohort. Using registry-identified first primary cancers from 1999-2012 as the gold standard, the overall sensitivity was 46.5% for self-reports only and 63.0% for both self-reports and death certificates. Among the 37.0% false-negative reports, 27.8% were due to dropout, while 9.2% were due to misreporting. The USRT cancer reporting patterns differed by cancer type. Our study indicates that linkage to state cancer registries would greatly improve completeness and accuracy of cancer follow-up in comparison with questionnaire self-reporting. These findings support ongoing development of a national US virtual pooled registry with which to streamline cohort linkages.


Assuntos
Atestado de Óbito , Neoplasias , Humanos , Estudos de Coortes , Autorrelato , Incidência , Neoplasias/epidemiologia , Sistema de Registros
4.
Ann Behav Med ; 56(12): 1201-1217, 2022 11 18.
Artigo em Inglês | MEDLINE | ID: mdl-34570875

RESUMO

BACKGROUND: Medication nonadherence of patients with chronic conditions is a complex phenomenon contributing to increased economic burden and decreased quality of life. Intervention development relies on accurately assessing adherence but no "gold standard" method currently exists. PURPOSE: The present scoping review aimed to: (a) review and describe current methods of assessing medication adherence (MA) in patients with chronic conditions with the highest nonadherence rates (asthma, cancer, diabetes, epilepsy, HIV/AIDS, hypertension), (b) outline and compare the evidence on the quality indicators between assessment methods (e.g., sensitivity), and (c) provide evidence-based recommendations. METHODS: PubMed, PsycINFO and Scopus databases were screened, resulting in 62,592 studies of which 71 met criteria and were included. RESULTS: Twenty-seven self-report and 10 nonself-report measures were identified. The Medication Adherence Report Scale (MARS-5) was found to be the most accurate self-report, whereas electronic monitoring devices such as Medication Event Monitoring System (MEMS) corresponded to the most accurate nonself-report. Higher MA rates were reported when assessed using self-reports compared to nonself-reports, except from pill counts. CONCLUSIONS: Professionals are advised to use a combination of self-report (like MARS-5) and nonself-report measures (like MEMS) as these were found to be the most accurate and reliable measures. This is the first review examining self and nonself-report methods for MA, across chronic conditions with the highest nonadherence rates and provides evidence-based recommendations. It highlights that MA assessment methods are understudied in certain conditions, like epilepsy. Before selecting a MA measure, professionals are advised to inspect its quality indicators. Feasibility of measures should be explored in future studies as there is presently a lack of evidence.


Assuntos
Epilepsia , Qualidade de Vida , Humanos , Adesão à Medicação , Autorrelato , Doença Crônica
5.
J Int Neuropsychol Soc ; 28(7): 687-699, 2022 08.
Artigo em Inglês | MEDLINE | ID: mdl-34376268

RESUMO

OBJECTIVE: Retrospective self-report is typically used for diagnosing previous pediatric traumatic brain injury (TBI). A new semi-structured interview instrument (New Mexico Assessment of Pediatric TBI; NewMAP TBI) investigated test-retest reliability for TBI characteristics in both the TBI that qualified for study inclusion and for lifetime history of TBI. METHOD: One-hundred and eight-four mTBI (aged 8-18), 156 matched healthy controls (HC), and their parents completed the NewMAP TBI within 11 days (subacute; SA) and 4 months (early chronic; EC) of injury, with a subset returning at 1 year (late chronic; LC). RESULTS: The test-retest reliability of common TBI characteristics [loss of consciousness (LOC), post-traumatic amnesia (PTA), retrograde amnesia, confusion/disorientation] and post-concussion symptoms (PCS) were examined across study visits. Aside from PTA, binary reporting (present/absent) for all TBI characteristics exhibited acceptable (≥0.60) test-retest reliability for both Qualifying and Remote TBIs across all three visits. In contrast, reliability for continuous data (exact duration) was generally unacceptable, with LOC and PCS meeting acceptable criteria at only half of the assessments. Transforming continuous self-report ratings into discrete categories based on injury severity resulted in acceptable reliability. Reliability was not strongly affected by the parent completing the NewMAP TBI. CONCLUSIONS: Categorical reporting of TBI characteristics in children and adolescents can aid clinicians in retrospectively obtaining reliable estimates of TBI severity up to a year post-injury. However, test-retest reliability is strongly impacted by the initial data distribution, selected statistical methods, and potentially by patient difficulty in distinguishing among conceptually similar medical concepts (i.e., PTA vs. confusion).


Assuntos
Lesões Encefálicas Traumáticas , Síndrome Pós-Concussão , Adolescente , Amnésia Retrógrada , Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas Traumáticas/diagnóstico , Criança , Confusão , Humanos , Reprodutibilidade dos Testes , Estudos Retrospectivos
6.
Contact Dermatitis ; 87(6): 528-534, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-35808939

RESUMO

BACKGROUND: The accuracy of self-reported hand eczema (HE) is currently unclear, and it is unknown how well self-reported signs and symptoms of skin lesions that indicate HE correlate with self-reported HE. OBJECTIVES: To correlate self-reported signs and symptoms of skin lesions on the hands with self-reported HE, to assess the sensitivity and specificity, and to suggest a definition for HE. METHOD: Seven hundred ninety-five (47.8%) of 1663 invited healthcare workers completed a digital questionnaire, and were asked to report if they experienced HE or any of the following skin signs/symptoms in past 11 months: scaling, erythema, fissures, vesicles, dryness, itch, stinging. RESULTS: HE during the past 11 months was reported by 11.9%. Of these, 91.4% reported at least one skin sign versus 32.3% of those without self-reported HE. The highest sensitivity and specificity were found for erythema (77.4% and 78.2%, respectively) and itch (78.5% and 78.6%, respectively), both separately and combined. The combination of ≥2 signs (erythema, scaling, fissures and vesicles) and itch, reached a sensitivity of 52.7% and specificity of 93.9%. CONCLUSION: The marked difference between self-reported HE and signs/symptoms highlights the importance of differentiating between data based on self-reported HE and signs/symptoms. As a first step towards diagnostic HE criteria, ≥2 signs combined with itch could be considered, but clinical studies are needed to verify the precision.


Assuntos
Dermatite Alérgica de Contato , Eczema , Dermatoses da Mão , Humanos , Autorrelato , Dermatite Alérgica de Contato/diagnóstico , Dermatite Alérgica de Contato/etiologia , Eczema/diagnóstico , Prurido , Pele , Dermatoses da Mão/diagnóstico
7.
Laterality ; 27(3): 273-307, 2022 May.
Artigo em Inglês | MEDLINE | ID: mdl-34758712

RESUMO

ABSTRACTBecause self-report hand preference measures are limited to investigating cognitive aspects of manual laterality, valid, easy-to-administer and economic behavioural methods are needed for capturing the motoric component of handedness. Therefore, this study introduces the Handedness Index Practical Task (HI20) and tests it in a sample of 206 students (Mage = 23.79 years, SDage = 3.01 years), half of whom were self-specified left-handers. After confirming good reliabilities at the subscale and total scale levels, k-means cluster analysis allowed an empirically based partitioning of test subjects into left- (n = 72), mixed- (n = 23) and right-handers (n = 111). To validate this categorization and the HI20 index, data were compared with the Edinburgh Handedness Inventory (EHI), EHI-short, HI22 and hand grip strength. The congruency between the HI20 clusters and alternative categorizations ranged from 95.6% to 84.0%, while the clusters explained large portions of variance in grip strength differences. The HI20 sub- and total scores showed strong correlations with other measures of lateral preference. Altogether, the freely available HI20 emerges as a reliable and valid alternative for behavioural handedness assessment, whose power lies in explaining differential hand use patterns and enabling fine-grained examinations of handedness.


Assuntos
Lateralidade Funcional , Força da Mão , Adulto , Pré-Escolar , Mãos , Humanos , Autorrelato , Extremidade Superior , Adulto Jovem
8.
Hum Factors ; 64(8): 1331-1350, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-33861174

RESUMO

OBJECTIVE: The goal of this study was to examine the relation between users' reported risk concerns and their choice behaviors in a mobile application (app) selection task. BACKGROUND: Human users are typically regarded as the weakest link in cybersecurity and privacy protection; however, it is possible to leverage the users' predilections to increase security. There have been mixed results on the relation between users' self-reported privacy concerns and their behaviors. METHOD: In three experiments, the timing of self-reported risk concerns was either a few weeks before the app-selection task (pre-screen), immediately before it (pre-task), or immediately after it (post-task). We also varied the availability and placement of clear definitions and quizzes to ensure users' understanding of the risk categories. RESULTS: The post-task report significantly predicted the app-selection behaviors, consistent with prior findings. The pre-screen report was largely inconsistent with the reports implemented around the time of the task, indicating that participants' risk concerns may not be stable over time and across contexts. Moreover, the pre-task report strongly predicted the app-selection behaviors only when elaborated definitions and quizzes were placed before the pre-task question, indicating the importance of clear understanding of the risk categories. CONCLUSION: Self-reported risk concerns may be unstable over time and across contexts. When explained with clear definitions, self-reported risk concerns obtained immediately before or after the app-selection task significantly predicted app-selection behaviors. APPLICATION: We discuss implications for including personalized risk concerns during app selection that enable comparison of alternative mobile apps.


Assuntos
Aplicativos Móveis , Humanos , Segurança Computacional , Comportamento de Escolha
9.
Br J Clin Psychol ; 60(2): 252-269, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33393098

RESUMO

OBJECTIVES: This study examined the effect of whether participants were on or off their medications and the effect of questionnaire wording on self-reported symptoms in young adults with ADHD. Additionally, this research evaluated the relationships between these self-reported symptoms and objective performance on measures of working memory. DESIGN: This experimental study utilized a mixed factorial design with one between-subjects factor (whether participants were unmedicated or medicated at the time they completed their assessment) and one within-subjects factor (whether participants reported their on-medication or off-medication symptoms when describing their ADHD subjective symptomatology). METHODS: Forty-five young adults with ADHD (ages 18-23) completed a brief neuropsychological evaluation and several self-report questionnaires. RESULTS: Although being medicated or unmedicated while completing the questionnaires did not directly affect self-reported symptoms or their accuracy, questionnaire wording exerted a statistically significant effect on subjective symptomatology; participants described themselves as substantially more symptomatic at times when they are off than at times when they are on their medications. More importantly, their general self-perceptions (symptoms when medication state was not specified) of their Inattention/Memory Problems and their Hyperactivity/Restlessness aligned with their descriptions of their off-medication symptoms, whereas their general self-perceptions of their Impulsivity/Emotional Lability and Problems with Self-Concept related to both their self-reported off-medication and on-medication symptoms. CONCLUSIONS: These results highlight the necessity of specifying medication state when asking patients to report their current symptomatology. Failing to do so risks an over-reporting of symptoms from patients who are typically on medications as they may describe the extent of their unmedicated, rather than medicated, symptomatology. PRACTITIONER POINTS: Being medicated or unmedicated while completing questionnaires about subjective symptomatology did not directly affect self-reported symptoms of young adults with ADHD or the accuracy of these self-reports. When medication state was not specified on a questionnaire, young adults with ADHD reported symptoms similar to those they experience when they are not medicated. These results highlight the importance of specifying medication state when asking young adults with ADHD to report their current symptomatology. Failing to do so risks an over-reporting of symptoms from patients who are typically on medications. These findings open the door for further research with larger and more diverse and representative samples of adults with ADHD to evaluate the accuracy of their subjective symptomatology relative to their objective abilities. Future studies should also examine whether gender affects subjective symptoms, their accuracy, or the influence of question wording and medications on self-reported symptomatology of adults with ADHD, as the current study was unable to address this important issue.


Assuntos
Transtorno do Deficit de Atenção com Hiperatividade/tratamento farmacológico , Transtorno do Deficit de Atenção com Hiperatividade/psicologia , Testes Neuropsicológicos/normas , Adolescente , Adulto , Feminino , Humanos , Masculino , Autorrelato , Inquéritos e Questionários , Adulto Jovem
10.
Sociol Methods Res ; 50(2): 866-900, 2021 May.
Artigo em Inglês | MEDLINE | ID: mdl-39006983

RESUMO

Questions on voluntary association memberships have been used extensively in social scientific research for decades. Researchers generally assume that these respondent self-reports are accurate, but their measurement has never been assessed. Respondent characteristics are known to influence the accuracy of other self-report variables such as self-reported health, voting, or test scores. In this article, we investigate whether measurement error occurs in self-reports of voluntary association memberships. We use the 2004 General Social Survey (GSS) questions on voluntary associations, which include a novel resource: the actual organization names listed by respondents. We find that this widely used voluntary association classification scheme contains significant amounts of measurement error overall, especially within certain categories. Using a multilevel logistic regression, we predict accuracy of response nested within respondents and interviewers. We find that certain respondent characteristics, including some used in research on voluntary associations, influence respondent accuracy. Inaccurate and/or incorrect measurement will affect the statistics and conclusions drawn from the data on voluntary associations.

11.
Scand J Caring Sci ; 35(2): 600-607, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33128475

RESUMO

BACKGROUND: Transgender persons face barriers to health care including discrimination and lack of awareness by professionals. This study aimed to describe transgender persons' experiences of encounters with healthcare staff. METHODS: Participants were recruited through postings in social media and on websites targeting people identifying as transgender. Through an online form, 21 people identifying as transgender provided written self-reports. These were analysed using a method for inductive qualitative content analysis. The study was conducted in Sweden in 2018. RESULTS: The results describe transgender persons' experiences and perceptions of encounters with healthcare staff in one theme: treat me with respect, and three main categories: accept me for who I am; treat me according to my needs; and meet me with competence. CONCLUSIONS: Healthcare professionals can contribute in restoring and upholding transgender people's trust in health care by accepting their identity and focusing on their healthcare needs while also being informed about transgender people's needs and realities. A key point in this is recognising transgender person's vulnerability to violations of dignity in relation to health care.


Assuntos
Pessoas Transgênero , Atenção à Saúde , Humanos , Respeito , Suécia , Confiança
12.
J Neurosci Res ; 98(7): 1268-1282, 2020 07.
Artigo em Inglês | MEDLINE | ID: mdl-30723972

RESUMO

Maternal perinatal depression (PND), a common mental disorder with a prevalence of over 10%, is associated with long-term health risks for both mothers and offspring. This study aimed at describing characteristics related to background and lifestyle, pregnancy, delivery, and postpartum of different PND trajectories defined according to the onset of depressive symptoms. Participants were drawn from a large population-based cohort study in Uppsala, Sweden (n = 2,466). Five trajectory groups of depressive symptom onset were created using the Edinburgh Postnatal Depression Scale ≥13 (pregnancy) or ≥12 points (postpartum): (a) healthy (60.6%), (b) pregnancy depression (8.5%), (c) early postpartum onset (10.9%), (d) late postpartum onset (5.4%), and (e) chronic depression (14.6%). In multinomial logistic regressions, the associations between trajectories and the included characteristics were tested using the healthy trajectory as reference. Background characteristics (younger age, lower education, unemployment) were primarily associated with pregnancy depression and chronic depression. Characteristics associated with all PND trajectories were smoking prior to pregnancy, migraine, premenstrual mood symptoms, intimate partner violence, interpersonal trauma, negative delivery expectations, pregnancy nausea, and symphysiolysis. Nulliparity, instrumental delivery, or a negative delivery experience was associated with early postpartum onset. Postpartum factors (e.g., infantile colic, lack of sleep, low partner support, and bonding difficulties) were associated with early and late postpartum onset together with chronic depression. The findings suggest that different PND trajectories have divergent characteristics, which could be used to create individualized treatment options. To find the most predictive characteristics for different PND trajectories, studies with even larger and more diverse samples are warranted.


Assuntos
Depressão Pós-Parto/psicologia , Depressão/psicologia , Transtorno Depressivo/psicologia , Complicações na Gravidez/psicologia , Adulto , Fatores Etários , Escolaridade , Emprego , Feminino , Humanos , Mães , Gravidez , Fatores de Risco , Estresse Psicológico/psicologia , Adulto Jovem
13.
Psychooncology ; 29(6): 1051-1059, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32154959

RESUMO

OBJECTIVE: To investigate the relationships between self-reported and objectively measured cognitive function prior to systemic therapy and subsequent well-being outcomes over 24 months in older breast cancer survivors. METHODS: Data were from 397 women aged 60 to 98 diagnosed with non-metastatic breast cancer in the Thinking and Living with Cancer Study recruited from 2010-2016. Cognitive function was measured at baseline (following surgery, prior to systemic therapy) using neuropsychological assessments of attention, processing speed, and executive function (APE), learning and memory (LM), and the self-reported FACT-Cog scale. Well-being was measured using the FACT-G functional, physical, social, and emotional well-being domain scales at baseline and 12 and 24 months later, scaled from 0 (low) to 100 (high). Linear mixed-effects models assessed the relationships between each of baseline APE, LM, and FACT-Cog quartiles with well-being scores over 24 months, adjusted for confounding variables. RESULTS: At baseline, older survivors in the lowest APE, LM, and FACT-Cog score quartiles experienced poorer global well-being than those in the highest quartiles. At 24 months, older survivors tended to improve in well-being, and there were no differences according to baseline APE or LM scores. At 24 months, mean global well-being was 80.3 (95% CI: 76.2-84.3) among those in the lowest vs 86.6 (95% CI: 83.1-90.1) in the highest FACT-cog quartile, a clinically meaningful difference of 6.3 points (95% CI: 1.5-11.1). CONCLUSIONS: Among older breast cancer survivors, self-reported, but not objective cognitive impairments, were associated with lower global well-being over the first 2 years of survivorship.


Assuntos
Neoplasias da Mama/psicologia , Sobreviventes de Câncer/psicologia , Cognição , Autorrelato , Idoso , Idoso de 80 Anos ou mais , Disfunção Cognitiva/psicologia , Feminino , Humanos , Saúde Mental , Testes Neuropsicológicos , Pensamento
14.
BMC Health Serv Res ; 20(1): 858, 2020 Sep 11.
Artigo em Inglês | MEDLINE | ID: mdl-32917193

RESUMO

BACKGROUND: Benchmarking outcomes across settings commonly requires risk-adjustment for co-morbidities that must be derived from extant sources that were designed for other purposes. A question arises as to the extent to which differing available sources for health data will be concordant when inferring the type and severity of co-morbidities, how close are these to the "truth". We studied the level of concordance for same-patient comorbidity data extracted from administrative data (coded from International Classification of Diseases, Australian modification,10th edition [ICD-10 AM]), from the medical chart audit, and data self-reported by men with prostate cancer who had undergone a radical prostatectomy. METHODS: We included six hospitals (5 public and 1 private) contributing to the Prostate Cancer Outcomes Registry-Victoria (PCOR-Vic) in the study. Eligible patients from the PCOR-Vic underwent a radical prostatectomy between January 2017 and April 2018.Health Information Manager's in each hospital, provided each patient's associated administrative ICD-10 AM comorbidity codes. Medical charts were reviewed to extract comorbidity data. The self-reported comorbidity questionnaire (SCQ) was distributed through PCOR-Vic to eligible men. RESULTS: The percentage agreement between the administrative data, medical charts and self-reports ranged from 92 to 99% in the 122 patients from the 217 eligible participants who responded to the questionnaire. The presence of comorbidities showed a poor level of agreement between data sources. CONCLUSION: Relying on a single data source to generate comorbidity indices for risk-modelling purposes may fail to capture the reality of a patient's disease profile. There does not appear to be a 'gold-standard' data source for the collection of data on comorbidities.


Assuntos
Comorbidade , Classificação Internacional de Doenças , Prontuários Médicos/estatística & dados numéricos , Neoplasias da Próstata/epidemiologia , Idoso , Austrália/epidemiologia , Estudos de Coortes , Humanos , Masculino , Auditoria Médica , Pessoa de Meia-Idade , Prostatectomia , Estudos Retrospectivos , Autorrelato/estatística & dados numéricos
15.
BMC Palliat Care ; 19(1): 50, 2020 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-32299420

RESUMO

BACKGROUND: Children show long-term psychological distress if family communication and illness-related information are poor during and after a parent's illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care. METHODS: This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6-19 years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation. RESULTS: The children reported that FTI increased their knowledge about their parents' illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8-12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family. CONCLUSIONS: Children who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience. TRIAL REGISTRATION: ClinicalTrials.gov, Identifier NCT03119545, retrospectively registered 18 April 2017.


Assuntos
Família/psicologia , Cuidados Paliativos/psicologia , Pais , Relações Profissional-Paciente , Adaptação Psicológica , Adolescente , Criança , Feminino , Humanos , Entrevistas como Assunto/métodos , Masculino , Cuidados Paliativos/métodos , Projetos Piloto , Apoio Social , Inquéritos e Questionários , Suécia , Adulto Jovem
16.
BMC Med Inform Decis Mak ; 20(1): 212, 2020 09 07.
Artigo em Inglês | MEDLINE | ID: mdl-32894123

RESUMO

BACKGROUND: The onset of silent diseases such as type 2 diabetes is often registered through self-report in large prospective cohorts. Self-reported outcomes are cost-effective; however, they are subject to error. Diagnosis of silent events may also occur through the use of imperfect laboratory-based diagnostic tests. In this paper, we describe an approach for variable selection in high dimensional datasets for settings in which the outcome is observed with error. METHODS: We adapt the spike and slab Bayesian Variable Selection approach in the context of error-prone, self-reported outcomes. The performance of the proposed approach is studied through simulation studies. An illustrative application is included using data from the Women's Health Initiative SNP Health Association Resource, which includes extensive genotypic (>900,000 SNPs) and phenotypic data on 9,873 African American and Hispanic American women. RESULTS: Simulation studies show improved sensitivity of our proposed method when compared to a naive approach that ignores error in the self-reported outcomes. Application of the proposed method resulted in discovery of several single nucleotide polymorphisms (SNPs) that are associated with risk of type 2 diabetes in a dataset of 9,873 African American and Hispanic participants in the Women's Health Initiative. There was little overlap among the top ranking SNPs associated with type 2 diabetes risk between the racial groups, adding support to previous observations in the literature of disease associated genetic loci that are often not generalizable across race/ethnicity populations. The adapted Bayesian variable selection algorithm is implemented in R. The source code for the simulations are available in the Supplement. CONCLUSIONS: Variable selection accuracy is reduced when the outcome is ascertained by error-prone self-reports. For this setting, our proposed algorithm has improved variable selection performance when compared to approaches that neglect to account for the error-prone nature of self-reports.


Assuntos
Diabetes Mellitus Tipo 2 , Medidas de Resultados Relatados pelo Paciente , Teorema de Bayes , Diabetes Mellitus Tipo 2/diagnóstico , Diabetes Mellitus Tipo 2/epidemiologia , Diabetes Mellitus Tipo 2/genética , Feminino , Humanos , Polimorfismo de Nucleotídeo Único , Estudos Prospectivos , Autorrelato
17.
Crim Behav Ment Health ; 30(4): 172-182, 2020 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-32510787

RESUMO

Criminal career duration has not been well investigated. There are very few longitudinal data sets that last long enough and enough subjects to investigate criminal career duration, and especially the characteristics and risk profiles of especially life course persistent offenders. The aim of the study was to describe the predictability of criminal career duration based on both official records and self-reports of offending, and to put the results in the context of the Moffitt theory of "adolescent limited" and "life course persistent" offenders. The Pittsburgh Youth Study (n = 1517) is a seminal longitudinal study based on a community sample of high-risk boys from the city of Pittsburgh. Data was used from the oldest sample of boys in the PYS (N = 506). The participants were first assessed on average at age 12, and data was used up until age 36 for self-reported offending, and age 40 for police charges. The analyses were conducted on moderate and serious violence and moderate and serious theft. Career duration was based on self-reports and official charges in combination. The results show the extent to which commonly accepted and well validated risk factors predict criminal career duration with a special focus on individuals showing high rate/persistent offending in adolescence. Results show more pathways of delinquent development than have previously been described by Moffitt, (Psychological Review, 1993, 100(4), 674-701). Results also show that there is limited predictability of delinquency and offending over time. In addition, results show that only a small number of risk factors distinguish high and low rate adolescent offenders who become continuous offenders. Examples are peer factors. Implications for policy making and intervention science are discussed.


Assuntos
Criminosos/psicologia , Delinquência Juvenil/psicologia , Violência/psicologia , Adolescente , Adulto , Criança , Direito Penal , Criminosos/estatística & dados numéricos , Feminino , Humanos , Estudos Longitudinais , Masculino , Grupo Associado , Fatores de Risco , Autorrelato , Violência/estatística & dados numéricos
18.
Hist Psychiatry ; 31(4): 495-510, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32538161

RESUMO

The literature of the past has included self-reports by the mentally ill since before Roy Porter reminded us that their views and experiences constitute an important document for historians of psychiatry. The value of these self-reports can be enhanced if their potential biases and informational power are duly determined. This Classic Text concerns a self-report of a form of periodic madness written by an eighteenth-century Danish vicar. It shows how the same document can be presented in a more or less neutral fashion by a medical historian (Maar) or used as 'evidence' for some 'ontological' view of madness by a clinician (Rasmussen).

19.
AIDS Behav ; 23(2): 504-512, 2019 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-30218318

RESUMO

This analysis compares self-reports of product use with objective measures of non-adherence-quarterly plasma dapivirine levels and monthly residual dapivirine (DPV) levels in used rings-in MTN-020/ASPIRE, a phase 3 trial of a monthly DPV vaginal ring among women aged 18-45 years in Malawi, South Africa, Uganda and Zimbabwe. For participants on active product (N = 1211) we assessed self-reported monthly non-adherence, as measured by (1) whether the ring was ever out, and out for ≥ 12 h in the previous month and, (2) by a self-rating scale assessing ability to keep the vaginal ring inserted, and compared the self-reports to two biomarkers of non-use separately and as a composite measure. For this analysis, a plasma DPV value ≤ 95 pg/ml and residual ring ≥ 23.5 mg were used to classify non-adherence (i.e. the ring never being in the vagina the previous month). Compared to self-reports, non-adherence was found to be substantially higher for the composite measure as well as its two components, an indication that ring removal was likely underreported in the trial. The discrepancy between the self-report measure of ring outage and the composite indicator was greater for those aged 18-21 than for those older, evidence that younger women are more likely to underreport non-adherence. Despite underreporting of non-adherence, self-reports of the ring never being out were significant in predicting the composite objective measure. Furthermore, the association between the self-rating scale and the objective measure was in the expected direction and significant, although 11% of those 18-21 and 7% of those 22+ who rated their ability to keep the ring inserted as good, very good or excellent in the 4 weeks prior to exit were considered non-adherent according to the objective measure. This analysis indicates that while self-reports are significantly associated with objective measures of adherence in the ASPIRE trial, they were inflated-more so by those younger-and therefore may have limited utility identifying those who have challenges using products as directed. ClinicalTrials.gov number NCT01617096.


Assuntos
Fármacos Anti-HIV/administração & dosagem , Dispositivos Anticoncepcionais Femininos , Infecções por HIV/prevenção & controle , Cooperação do Paciente/estatística & dados numéricos , Pirimidinas/administração & dosagem , Autorrelato , Administração Intravaginal , Adulto , Feminino , Humanos , Malaui , África do Sul , Uganda , Adulto Jovem , Zimbábue
20.
AIDS Care ; 31(7): 836-839, 2019 07.
Artigo em Inglês | MEDLINE | ID: mdl-30554522

RESUMO

Assessment of an individual's functional status, as measured by activities of daily living (ADL), is an essential element in the diagnosis of HIV-associated neurocognitive disorders (HAND) but individuals with cognitive impairment may not accurately report ADL. We assessed agreement between self- and caregiver-reported ADL in HIV-positive persons. Antiretroviral therapy (ART)-naïve HIV-positive persons (n = 321) and HIV-negative controls (n = 134) in Rakai, Uganda, completed neurocognitive tests and an ADL questionnaire. Co-resident relatives ("caregivers") were independently administered the ADL questionnaire to determine their perception of the participant's ADL. The relationship between neurocognitive impairment and participant-caregiver agreement was assessed using kappa statistics. Regression was used to estimate adjusted prevalence ratios (AdjPR) of participant-caregiver agreement on disability scores. Relative to HIV-negative adults, HIV-positive participants scoring at least 1 standard deviation (SD) below the norm on 2 or more neurocognitive tests were classified as having mild neurocognitive impairment and those scoring at least 2 SD below the norm on 2 or more neurocognitive tests were classified as having moderate-to-severe. Mean age was 36 years (SD 8.9), and 53% of participants were male. The rate of ADL agreement between participants and caregivers was 77% for HIV-positive and 87% for HIV-negative participants (AdjPR = 0.89, 95% CI 0.81-0.97, p = .01). Among HIV-positive participants, 41% had moderate neurocognitive impairment, 15% had severe neurocognitive impairment, and 44% were normal. For moderate neurocognitive impairment, the rate of ADL agreement was 69% and for severe neurocognitive impairment, it was 66%. Compared to non-impaired HIV-positive participants (86% ADL agreement), ADL agreement was lower with moderate impairment (AdjPR = 0.89, 95%CI 0.81-0.98, p = .023) and severe impairment (AdjPR = 0.77, 95%CI 0.63-0.95, p = .014). Gender, education and CD4 count were not associated with ADL agreement. HIV-positive persons with neurocognitive impairment have lower agreement with caregivers' reports of ADL than HIV-positive persons without cognitive impairment.


Assuntos
Atividades Cotidianas , Cuidadores/psicologia , Disfunção Cognitiva/psicologia , Infecções por HIV/psicologia , Soronegatividade para HIV , Autorrelato , Adulto , Idoso , Estudos de Casos e Controles , Cognição , Disfunção Cognitiva/etiologia , Feminino , Infecções por HIV/complicações , Infecções por HIV/etnologia , Humanos , Masculino , Pessoa de Meia-Idade , Testes Neuropsicológicos , Uganda/epidemiologia
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