57 research outputs found
Could we use parent report as a valid proxy of child report on anxiety, depression, and distress? : a systematic investigation of fatherâmotherâchild triads in children successfully treated for leukemia
Background
Systematic assessment of emotional distress is recommended in after care. Yet, it is unclear if parent report may be used as a proxy of child report. The aim of this study was to assess agreements and differences and explore possible moderators of disagreement between child and parent ratings.
Methods
Sixtyâtwo young survivors treated for acute lymphoblastic leukemia (9â18 years) and both parents responded to the Beck Youth Inventory (anxiety and depression) and the distress rating scale on the child's status. Parents completed the Brief Symptom Inventoryâ18 on their own psychological status. Systematic analyses of agreement and differences were performed.
Results
Motherâchild and fatherâchild agreements were fair on anxiety, depression, and distress (median intraclass correlation coefficient = 0.37). Differences between parents and children were medium sized (median d = 0.55) with parents giving higher scores than their children on anxiety, depression, and distress. Mothers reported distress more frequently than fathers (39 vs. 17%) when children reported none. The child being female and lower parental income were associated with lower agreement in fathers when rating child distress. Higher levels of parental psychological symptoms were consistently associated with lower agreement.
Conclusions
Parentâchild differences when rating adolescent survivorsâ difficulties may be more important than previously thought. Parent report probably cannot be considered as a valid proxy of older child report on such internalized domains as anxiety, depression, or distress in the afterâcare clinic. Parentsâ report is also likely to be influenced by their own mood, a factor that should be corrected for when using their report
A 2âyear dyadic longitudinal study of mothers' and fathers' marital adjustment when caring for a child with cancer
Objective
Studies examining interrelationships within parental couples confronted with pediatric cancer are scarce. This study explored dyadic longitudinal associations between both partners' family functioning and mood at diagnosis, and marital adjustment 2 years later.
Method
Parents of children (nâ=â47 couples) with acute lymphoblastic leukemia (ALL) completed the Family WellâBeing Assessment and Profile of Mood StatesâBipolar Form at diagnosis, and the LockeâWallace Marital Adjustment Test 2 years post diagnosis. Multilevel linear models using the actorâpartner interdependence model (APIM) and controlling for baseline marital adjustment were conducted to evaluate within subject and dyadic longitudinal effects.
Results
For mothers, better marital adjustment 2 years post diagnosis was associated with perception of greater family support and less role conflict and role overload at diagnosis. For fathers, better marital adjustment 2 years postâdiagnosis was associated with perception of less role conflict, greater role ambiguity, and being more tired at diagnosis, as well as their partner's perception of less role conflict at diagnosis.
Conclusions
These findings highlight the importance of considering both partners' perspectives in understanding marital adjustment across treatment phases in parents of children with ALL. Early interventions for couples should be tailored to meet each partner's needs in order to foster resilience within the couple
Getting ready for transition to adult care : tool validation and multi-informant strategy using the Transition Readiness Assessment Questionnaire in pediatrics
Background
Transitioning from pediatric to adult healthcare can be challenging and lead to severe consequences if done suboptimally. The Transition Readiness Assessment Questionnaire (TRAQ) was developed to assess adolescent and young adult (AYA) patients' transition readiness. In this study, we aimed to (1) document the psychometric properties of the French-language version of the TRAQ (TRAQ-FR), (2) assess agreements and discrepancies between AYA patients' and their primary caregivers' TRAQ-FR scores, and (3) identify transition readiness contributors.
Methods
French-speaking AYA patients (nâ=â175) and primary caregivers (nâ=â168) were recruited from five clinics in a tertiary Canadian hospital and asked to complete the TRAQ-FR, the Pediatric Quality of Life Inventoryâą 4.0 (PedsQLâą 4.0), and a sociodemographic questionnaire. The validity of the TRAQ-FR was assessed using confirmatory factor analyses (CFA). Agreements and discrepancies were evaluated using intraclass correlation coefficients and paired-sample t tests. Contributors of transition readiness were identified using regression analyses.
Results
The five-factor model of the TRAQ was supported, with the TRAQ-FR global scale showing good internal consistency for both AYA patients' and primary caregivers' scores (αâ=â.85â.87). AYA patients and primary caregivers showed good absolute agreement on the TRAQ-FR global scale with AYA patients scoring higher than primary caregivers (ICCâ=â.80; dâ=â.25). AYA patients' age and sex were found to be contributors of transition readiness.
Conclusions
The TRAQ-FR was found to have good psychometric properties when completed by both AYA patients and primary caregivers. Additional research is needed to explore the predictive validity and clinical use of the TRAQ-FR
Screening for distress in pediatric cancer survivors : a systematic comparison of one-step and two-step strategies to minimize detection errors
Background:Childhood cancer survivors should be routinelyscreened for psychological distress. However, existing screeningtools promoted by cancer care institutions, such as the DistressThermometer (DT) generate high rates of errors. The aim of thisstudy is to help refining strategies of screening psychologicaldistress in this population by exploring two-step methods com-bining the DT on step #1 with one question on step #2.Procedure:Data from 255 survivors of childhood acutelymphoblastic leukemia aged 13â40years were analyzed (38%13â18 years, 62% 19ĂŸyears, 53% females). We used the DTon step #1 and the individual emotion items from thePediatric Quality of Life Questionnaire (PedsQL) on step #2, todetect distress, depression and anxiety as measured by stand-ard instruments. We compared sensitivity, specificity, negativeand positive predictive values, Youden index, and clinical util-ity indices, in newly developed two-step strategies.Results:The best two-step strategies to screen anxious-depressive distress were DT 2 on step #1, with the item ofSadness on step #2, and DT 2 combined with the item ofConcerns. Two-step strategies outperformed the DT alone onthe correct identification of distressed survivors. However,two-step strategies did not outperform the DT used alone onthe correct detection of no distressed survivors. Results weresimilar when predicting depression or anxiety alone.Conclusion:Completing the DT with one single question onemotions from the PedsQL may minimize the number of par-ticipants falsely identified as distressed, which could be par-ticularly pertinent in resource-limited clinics
Psychological risk in long-term survivors of childhood acute lymphoblastic leukemia and its association with functional health status : A PETALE cohort study
Background: Recent research has suggested that long-term pediatric cancer survivors were at risk of important physical and psychological morbidities. To date, we do not know to what extent functional health status contributes to psychological risk and which domains are most important. The aim of this study was to systematically explore which functional domain could explain anxiety, depression, and distress symptoms.
Procedure: We used data available for 105 adolescents and 182 adults successfully treated for childhood acute lymphoblastic leukemia at two Canadian sites part of the PETALE cohort. Participants were â„5 years postdiagnosis, aged 22 ± 6 years, 52% female, and 49% acute lymphoblastic leukemia high-risk status. The contribution of health functional status (15D/16D questionnaires) to self-reported anxiety, depression, and distress (Beck scales and distress thermometer) was evaluated using adjusted logistic regression models.
Results: Prevalence rates found for mild-severe anxiety, depression, and distress were 14%, 21%, and 30% among adolescents and 27%, 20%, and 19% among adults. Frequent health domains associated with psychological risk were sleeping and breathing in adolescents, and vitality/fatigue, discomfort/symptoms, mental function, and sleeping in adults. Mental function was systematically associated with psychological risk across age groups (median OR = 10.00, 95% CI 3.01-33.71). Exploratory mediation bootstrapping analyses suggested that the effect on psychological risk of overall health status and mental function problems was partly explained by social/work/school functioning.
Conclusion: The results identified important functional health domains that could be targeted for interventions preventing psychological risk: vitality/fatigue, discomfort/symptoms, sleeping, and mental function issues. Health domains probably affect mood partly by limiting social/work/school functioning
Contributing factors of unmet needs among young adult survivors of childhood acute lymphoblastic leukemia with comorbidities
Purpose: This study aimed to: (1) describe the domains and levels of unmet needs of young adult survivors of childhood acute lymphoblastic leukemia (cALL) with comorbidities, and (2) to explore the factors associated with higher levels of unmet needs. Unmet need was considered as supportive care needs not met.
Methods: The most vulnerable cALL survivors from the PETALE study cohort completed the Short-Form Survivor Unmet Needs Survey, the Brief Pain Inventory and the 15D instrument of health-related quality of life. Demographic and clinical information, including comorbidities, were obtained from medical records or self-reporting. The participants' needs and contributing factors to their needs were evaluated using nonparametric tests.
Results: Of the 72 participants, 9 (13%) reported moderate/high levels of overall unmet needs. âWorry about earning moneyâ (56%) and âDealing with feeling tiredâ (51%) were the most frequent unmet needs (all levels combined). The factors associated significantly with any domain of unmet needs were: having a comorbidity, reporting altered functional health status, high ALL risk status, pain, age (<26 years), and having previously received psychological support.
Conclusion: A minority of young adult survivors of cALL with comorbidities interviewed reported moderate/high levels of unmet needs. However, financial concerns and emotional health and relationship are the two domains of greatest need. Survivors with altered health condition are most at risk of experiencing moderate/high levels of unmet needs. If confirmed in larger samples, interventions should target modifiable contributors of unmet needs such as physical health and comfort, fatigue, and emotional health
Inconsistencies between measures of cognitive dysfunction in childhood acute lymphoblastic leukemia survivors : description and understanding
Objectives
The frequency of cognitive difficulties in childhood cancer survivors varies according to the measurement strategy. The goal of this research is to (a) describe agreements and differences between measures of working memory and attention (b) identify contributors of these differences, such as emotional distress, affects, and fatigue.
Methods
We used data available for 138 adults successfully treated for childhood acute lymphoblastic leukemia (ALL) (PETALE cohort). Working memory and attention were assessed using subtests from the WAISâIV and selfâreported questionnaires (BRIEFâSR and CAARSâS:L). Potential contributors included emotional distress, anxiety, depression (BSIâ18), affects (PANAS), and fatigue (PedsQLâMFS). We explored measurement agreements and differences using diagnostic indices and multivariate regression models.
Results
The frequencies of working memory and attention deficits were higher when using cognitive tests (15%â21%) than with selfâreports (10%â11%). Selfâreported questionnaires showed high specificity (median 0.87) and low sensitivity (median 0.10), suggesting they did not reliably identify positive cases on cognitive tests. We identified negative affectivity as a possible contributor to inconsistencies between selfâreport and test results.
Conclusions
When measuring working memory and attention in childhood ALL survivors, cognitive test results and selfâreports should not be considered equivalent. At best, selfâreport may be used for screening (high specificity), but not to assess prevalence in large samples. Selfâreported difficulties are also probably influenced by the negative mood in this population
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