Dataset Information

Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review.

ABSTRACT: OBJECTIVE:Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality self-report instruments to be used in pediatric oncology research studies. This study's objective was to conduct a systematic literature review of existing English language instruments used to measure self-reported symptoms in children and adolescents undergoing cancer treatment. METHODS:A comprehensive literature search was conducted in MEDLINE/PubMed, EMBASE, CINAHL, and PsycINFO to identify relevant articles published through November 10, 2016. Using pre-specified inclusion/exclusion criteria, six trained reviewers carefully screened abstracts and full-text articles for eligibility. RESULTS:There were 7738 non-duplicate articles identified in the literature search. Forty articles met our eligibility criteria, and within these articles, there were 38 self-report English symptom instruments. Most studies evaluated only cross-sectional psychometric properties, such as reliability or validity. Ten studies assessed an instrument's responsiveness or ability to detect changes in symptoms over time. Eight instruments met our criteria for use in future longitudinal pediatric oncology studies. CONCLUSIONS:This systematic review aids pediatric oncology researchers in identifying and selecting appropriate symptom measures with strong psychometric evidence for their studies. Enhancing the child's voice in pediatric oncology research studies allows us to better understand the impact of cancer and its treatment on the lives of children.

SUBMITTER: Pinheiro LC

PROVIDER: S-EPMC5823735 | biostudies-literature | 2018 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review.

Pinheiro Laura C LC McFatrich Molly M Lucas Nicole N Walker Jennifer S JS Withycombe Janice S JS Hinds Pamela S PS Sung Lillian L Tomlinson Deborah D Freyer David R DR Mack Jennifer W JW Baker Justin N JN Reeve Bryce B BB

Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation 20170906 2

<h4>Objective</h4>Previous work in pediatric oncology has found that clinicians and parents tend to under-report the frequency and severity of treatment-related symptoms compared to child self-report. As such, there is a need to identify high-quality self-report instruments to be used in pediatric oncology research studies. This study's objective was to conduct a systematic literature review of existing English language instruments used to measure self-reported symptoms in children and adolescen ...[more]

PMID: 28879501

Similar Datasets

Project description:The crisis in child and adolescent mental health and wellbeing has prompted the development of school and community-based interventions to tackle negative emotions towards the self. Providing an evidence-base for such interventions is therefore a priority for policy makers and practitioners. This paper presents the first systematic review of self-referential and self-report measures of negative emotions for use with non-clinical child/adolescent populations, and evaluation of their psychometric properties. A systematic search of electronic databases and grey literature was conducted. Peer reviewed articles that introduced a new measure or included psychometric evaluation of a negative self-referential emotion for children and/or adolescents were identified. Study characteristics were extracted, and psychometric properties rated using internationally recognised quality criteria. Initially, 98 measures designed for evaluating children and adolescents' negative self-referential emotions were found. Measures were primarily excluded if they were intended for clinical diagnosis or did not focus on self-referential emotions. The remaining eight measures (Brief Shame and Guilt Questionnaire; Self-Consciousness Scale-Children; Shame and Guilt Scale for Adolescents; Test of Self-Conscious Affect- Adolescents; The Child-Adolescent Perfectionism Scale [CAPS]; Child and Adolescent Dysfunctional Attitudes Scale Revised; Children Automatic Thoughts Scale [CATS]; Negative Affect Self-Statement Questionnaire) were organised into domains consisting of self-conscious emotions, self-oriented perfectionism and negative self-cognitions. Psychometric quality ratings identified the CAPS (Flett et al. in J Psychoeduc Assess 34:634-652, 2016) and the CATS (Schniering and Rapee in Behav Res Ther 40:1091-1109, 2002) as having the strongest psychometric qualities. However, all reviewed measures lacked full evaluation of essential psychometric properties. Our review revealed a paucity of self-referential emotional measures suitable for assessing adverse negative self-referential emotions in general child and adolescent populations. Measures suitable for use in non-clinical samples were identified, but these require further evaluation and/or new scale developments are needed. The psychometric findings and methodological issues identified will guide researchers and practitioners to make evidence-based decisions in order to select optimal measures.

Project description:BackgroundTo the authors' knowledge, AREN0321 is the first prospective clinical study of pediatric and adolescent renal cell carcinoma (RCC). Goals of the study included establishing epidemiological, treatment, and outcome data and confirming that patients with completely resected pediatric RCC, including lymph node-positive disease (N1), have a favorable prognosis without adjuvant therapy.MethodsFrom 2006 to 2012, patients aged <30 years with centrally reviewed pathology of RCC were enrolled prospectively.ResultsA total of 68 patients were enrolled (39 of whom were male; median age of 13 years [range, 0.17-22.1 years]). Stage was classified according to the American Joint Committee on Cancer TNM stage seventh edition as stage I in 26 patients, stage II in 7 patients, stage III in 26 patients, and stage IV in 8 patients, and was not available in 1 patient. Sixty patients underwent resection of all known sites of disease, including 2 patients with stage IV disease. Surgery included radical nephrectomy (53 patients [81.5%]), partial nephrectomy (12 patients [18.5%]), and unknown (3 patients [4.4%]). Histology was TFE-associated RCC (translocation-type RCC; tRCC) in 40 patients, RCC not otherwise specified and/or other in 13 patients, papillary RCC in 9 patients, and renal medullary carcinoma (RMC) in 6 patients. Lymph node status was N0 in 21 patients, N1 in 21 patients (tRCC in 15 patients, RMC in 3 patients, papillary RCC in 2 patients, and not otherwise specified and/or other in 1 patient), and Nx in 26 patients. The 4-year event-free survival and overall survival rates were 80.2% (95% CI, 69.6%-90.9%) and 84.8% (95% CI, 75.2%-94.5%), respectively, overall and 87.5% (95% CI, 68.3%-100%) and 87.1% (95% CI, 67.6%-100%), respectively, for the 16 patients with N1M0 disease. Among patients presenting with metastases, 2 of 8 patients (2 of 5 patients with RMC) were alive (1 with disease) at the time of last follow-up, including 1 patient who was lost to follow-up (succinate dehydrogenase deficiency). The predominant RCC subtypes associated with mortality were tRCC and RMC.ConclusionsFavorable short-term outcomes can be achieved without adjuvant therapy in children and adolescents with completely resected RCC, independent of lymph node status. A prospective study of patients with tRCC and RMC with M1 or recurrent disease is needed to optimize treatment.

Project description:BackgroundThe lack of culturally adapted and validated instruments for child mental health and psychosocial support in low and middle-income countries is a barrier to assessing prevalence of mental health problems, evaluating interventions, and determining program cost-effectiveness. Alternative procedures are needed to validate instruments in these settings.MethodsSix criteria are proposed to evaluate cross-cultural validity of child mental health instruments: (i) purpose of instrument, (ii) construct measured, (iii) contents of construct, (iv) local idioms employed, (v) structure of response sets, and (vi) comparison with other measurable phenomena. These criteria are applied to transcultural translation and alternative validation for the Depression Self-Rating Scale (DSRS) and Child PTSD Symptom Scale (CPSS) in Nepal, which recently suffered a decade of war including conscription of child soldiers and widespread displacement of youth. Transcultural translation was conducted with Nepali mental health professionals and six focus groups with children (n=64) aged 11-15 years old. Because of the lack of child mental health professionals in Nepal, a psychosocial counselor performed an alternative validation procedure using psychosocial functioning as a criterion for intervention. The validation sample was 162 children (11-14 years old). The Kiddie-Schedule for Affective Disorders and Schizophrenia (K-SADS) and Global Assessment of Psychosocial Disability (GAPD) were used to derive indication for treatment as the external criterion.ResultsThe instruments displayed moderate to good psychometric properties: DSRS (area under the curve (AUC)=0.82, sensitivity=0.71, specificity=0.81, cutoff score ? 14); CPSS (AUC=0.77, sensitivity=0.68, specificity=0.73, cutoff score ? 20). The DSRS items with significant discriminant validity were "having energy to complete daily activities" (DSRS.7), "feeling that life is not worth living" (DSRS.10), and "feeling lonely" (DSRS.15). The CPSS items with significant discriminant validity were nightmares (CPSS.2), flashbacks (CPSS.3), traumatic amnesia (CPSS.8), feelings of a foreshortened future (CPSS.12), and easily irritated at small matters (CPSS.14).ConclusionsTranscultural translation and alternative validation feasibly can be performed in low clinical resource settings through task-shifting the validation process to trained mental health paraprofessionals using structured interviews. This process is helpful to evaluate cost-effectiveness of psychosocial interventions.

Project description:BACKGROUND:With an increased political interest in school-based mental health education, the dominant understanding and measurement of mental health literacy (MHL) in adolescent research should be critically appraised. This systematic literature review aimed to investigate the conceptualisation and measurement of MHL in adolescent research and the extent of methodological homogeneity in the field for meta-analyses. METHODS:Databases (PsycINFO, EMBASE, MEDLINE, ASSIA and ERIC) and grey literature were searched (1997-2017). Included articles used the term 'mental health literacy' and presented self-report data for at least one MHL domain with an adolescent sample (10-19?years). Definitions, methodological and contextual data were extracted and synthesised. RESULTS:Ninety-one articles were identified. There was evidence of conceptual confusion, methodological inconsistency and a lack of measures developed and psychometrically tested with adolescents. The most commonly assessed domains were mental illness stigma and help-seeking beliefs; however, frequency of assessment varied by definition usage and study design. Recognition and knowledge of mental illnesses were assessed more frequently than help-seeking knowledge. A mental-ill health approach continues to dominate the field, with few articles assessing knowledge of mental health promotion. CONCLUSIONS:MHL research with adolescent samples is increasing. Results suggest that a better understanding of what MHL means for this population is needed in order to develop reliable, valid and feasible adolescent measures, and explore mechanisms for change in improving adolescent mental health. We recommend a move away from 'mental disorder literacy' and towards critical 'mental health literacy'. Future MHL research should apply integrated, culturally sensitive models of health literacy that account for life stage and acknowledge the interaction between individuals' ability and social and contextual demands.

Dataset Information

Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review.

Publications

Child and adolescent self-report symptom measurement in pediatric oncology research: a systematic literature review.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets