Does what we measure matter? Quality-of-life defined by adolescents with brain injury.

OBJECTIVES: To determine if domains included in popular measurement systems (e.g. the Peds QL™) reflect the adolescent survivor of a brain injury's sense of QoL and explore this relationship in reference to an emerging model of wellbeing in the adolescent with TBI. METHODS: Mixed methods; adolescent QoL assessed using the PedsQL™ self-report and a semi-structured interview created by the lead author. Adolescent self-report was compared to adolescent narratives. RESULTS: Ten adolescents participated. Adolescent PedsQL™ total was within normal limits. Adolescents reported that changes identified by the PedsQL were not important and did not impact on their sense of QoL. The importance on social components of QoL-as opposed to cognitive-provide additional support of the emerging model of wellbeing in adolescents with TBI. CONCLUSIONS: The PedsQL can identify changes post-TBI, but fails to consider whether these changes are relevant to the adolescent. Alternate methods of exploring QoL-which emphasize the interaction of social networks and friendships, should be considered to avoid an oblique view of QoL outcomes after TBI.

Type 1 diabetes among adolescents: reduced diabetes self-care caused by social fear and fear of hypoglycemia.

PURPOSE: The aim of this study was to examine the association between social anxiety and adherence to diabetes self-care and quality of life and to determine the effects of fear of hypoglycemia on these associations in adolescents with type 1 diabetes. It is hypothesized that (1) social anxiety will be negatively associated with adherence and quality of life and (2) that fear of hypoglycemia will mediate this relationship. It is also hypothesized that (3) girls will have higher social anxiety than boys. METHODS: Adolescents with type 1 diabetes were recruited during clinic visits at 2 international centers. Participants answered a survey containing questionnaires on social anxiety, behavioral adherence to the diabetes self-care regimen, quality of life, fear of hypoglycemia, and last hemoglobin A1C results. RESULTS: Seventy-six adolescents (33 boys, 43 girls), mean age 15.9 (1.44) years, participated. Social anxiety levels are not statistically different between genders. In boys, social anxiety is associated with worse diet and insulin injection adherence; no associations are found in girls. Social anxiety is positively correlated with poor quality of life in both genders. Fear of hypoglycemia mediates the relationship between social anxiety and insulin adherence in boys. CONCLUSIONS: Findings suggest that social anxiety, which is common in general populations of adolescents, may interfere with behavioral adherence and quality of life among adolescents with type 1 diabetes. Screening and treatment of social anxiety may result in better adherence and increased quality of life.

Parent Attributions About Child Symptoms Related to Cancer Therapy.

PURPOSE: Symptom assessment is an emergent area of research in pediatric cancer. Our team previously reported on the development of a questionnaire to be completed by parents to determine symptom prevalence and bother. This exploratory study examined parental nonprobed, free-text comments about their child's treatment-related symptoms reported on the questionnaire. METHOD: Participants were parents of children aged 4 to 18 years who had been diagnosed with cancer at least 2 months prior to enrolment and had received intravenous chemotherapy within the past month at 1 of 5 pediatric cancer centers. The questionnaire consisted of 69 or 71 items (based on child's age) addressing physical and psychological sequelae. Each symptom query was accompanied by a blank space in which parents could comment on their response. Comments were analyzed guided by content analysis methodology. RESULTS: Five major themes emerged: parental attributions for the symptoms experienced in their child; coping patterns and communication styles within the family; evidence of anticipatory, procedural, and other anxieties; interruption of daily life; and changes in the child's physical appearance. CONCLUSIONS: These exploratory findings provide context to parental perception of their child's treatment-related symptoms and may contribute to a better understanding of parental perception of child and the family coping and communicating style. These findings may assist in the development of psychoeducational interventions aimed at promoting open communication styles within the family and reducing child and parent burden during treatment procedures.

The contribution of visual processing to academic achievement in adolescents born extremely preterm or extremely low birth weight.

Children born extremely preterm (EP, <28 weeks) and/or extremely low birth weight (ELBW, <1000 g) have more academic deficiencies than their term-born peers, which may be due to problems with visual processing. The aim of this study is to determine (1) if visual processing is related to poor academic outcomes in EP/ELBW adolescents, and (2) how much of the variance in academic achievement in EP/ELBW adolescents is explained by visual processing ability after controlling for perinatal risk factors and other known contributors to academic performance, particularly attention and working memory. A geographically determined cohort of 228 surviving EP/ELBW adolescents (mean age 17 years) was studied. The relationships between measures of visual processing (visual acuity, binocular stereopsis, eye convergence, and visual perception) and academic achievement were explored within the EP/ELBW group. Analyses were repeated controlling for perinatal and social risk, and measures of attention and working memory. It was found that visual acuity, convergence and visual perception are related to scores for academic achievement on univariable regression analyses. After controlling for potential confounds (perinatal and social risk, working memory and attention), visual acuity, convergence and visual perception remained associated with reading and math computation, but only convergence and visual perception are related to spelling. The additional variance explained by visual processing is up to 6.6% for reading, 2.7% for spelling, and 2.2% for math computation. None of the visual processing variables or visual motor integration are associated with handwriting on multivariable analysis. Working memory is generally a stronger predictor of reading, spelling, and math computation than visual processing. It was concluded that visual processing difficulties are significantly related to academic outcomes in EP/ELBW adolescents; therefore, specific attention should be paid to academic remediation strategies incorporating the management of working memory and visual processing in EP/ELBW children.

Healthcare Providers' Perceptions of the Utility of Psychosocial Screening Tools in Childhood Cancer: A Pilot Study.

PURPOSE/OBJECTIVES: To examine the perceptions of healthcare providers (HCPs) regarding the utility of two psychosocial screening tools designed for pediatric oncology, the Psychosocial Assessment Tool-Revised (PATrev) and the Psychosocial Care Checklist (PCCL). DESIGN: Repeated measures comparative study. SETTING: Four pediatric health centers in Ontario, Canada. SAMPLE: 15 oncologists, 14 nurses, and 8 social workers. METHODS: Using a visual analog scale (VAS), participants were asked to rate how useful they found (a) the psychosocial summary derived from the parent-completed PATrev, used to assess family psychosocial risk, and (b) the HCP-completed PCCL, used to identify family psychosocial needs. Measures were completed soon after diagnosis and six months later. Mann-Whitney U tests were used for analyses. MAIN RESEARCH VARIABLE: VAS scores. FINDINGS: Pediatric oncology HCPs differ in their acceptance of the psychosocial screening tools tested. The highest utility ratings for both instruments were from nurses, and the lowest utility ratings were from social workers; moderate ratings were obtained from oncologists. CONCLUSIONS: Psychosocial screening tools can identify the psychosocial needs of children with cancer and their families throughout the cancer trajectory. Consequently, these tools could foster communication among colleagues (medical and nonmedical) who are caring for children with cancer about the psychosocial needs of this population and the allocation of resources to address those needs. IMPLICATIONS FOR NURSING: Nurses seem to value these tools more than other HCPs, which may have positive implications for their clinical practice.

"In my before life": relationships, coping and post-traumatic growth in adolescent survivors of a traumatic brain injury.

OBJECTIVE: Explore the individual, adolescent phenomeno-logy of quality of life after traumatic brain injury. SUBJECTS/PATIENTS: Adolescent survivors of traumatic brain injury. METHODS: Qualitative interviews with 10 adolescents, mean age at assessment 17.09 years (SD 1.81). Mean time since injury 4.62 years (SD 2.89). Data were analysed using a primarily interpretative phenomenological analysis approach. RESULTS: Two major findings: (1) perceived quality of life was not automatically impacted by a traumatic brain injury, but when it was, the directionality of impact (positive, negative) varied depending on the life-domain; (2) changes in ability post-traumatic brain injury were attributed to the injury (more often cognitive and physical changes) or to a sense of normal maturation processes (72% and 28%, respectively). Attribution processing permeated themes of personal and social discrepancies, which also yielded themes of: altered family and relationships, roles, responsibilities, independence, coping and post-traumatic growth. All participants reported a happy life at the time of interview. CONCLUSION: The adolescents' appraisal of their identity from pre- to post-injury life was related to their current sense of well-being. Most notably was the sense of balance; participants addressed the negative and positive consequences of brain injury to qualify their sense of wellbeing.

Depression and health related quality of life in adolescent survivors of a traumatic brain injury: a pilot study.

UNLABELLED: Traumatic brain injury is (TBI) a leading cause of morbidity and mortality in youth. Adult survivors of a severe pediatric TBI are vulnerable to global impairments, including greater employment difficulties, poor quality of life (HRQoL) and increased risk of mental health problems. When estimating the health related quality of life in adolescents, the presence of anxiety and depression and the quality of social relationships are important considerations, because adolescents are entrenched in social development during this phase of maturation. The influence of anxiety, depression and loneliness on health related quality of life in adolescent survivors of TBI has not been documented. This pilot study aimed to identify and measure the relationship between anxiety, depression and loneliness and perceived health related quality of life in adolescent survivors of a TBI. METHOD: mixed method/cohort pilot study (11 adolescents, mild to severe TBI; 9 parents), using self-report and proxy-report measures of anxiety, depression, health related quality of life, loneliness and clinical psychiatric interviews (adolescent only). RESULTS: Self-reported depression was significantly correlated with self-reported HRQoL (rs [11] = -0.88, p<0.001). Age at injury was significantly correlated with self-reported HRQoL (rs [11] = -0.68, p = 0.02). Self-reported depression predicted self-reported HRQoL (R2 = 0.79, F [1, 10] = 33.48, p<0.001), but age at injury did not (R2 = 0.19, F [1, 10] = 2.09, p = 0.18). CONCLUSIONS: Our results suggest that depression is a predictor of health related quality of life in youth post-TBI. The possibility of using targeted assessment and therapy for depression post-TBI to improve health related quality of life should be explored.

Quality of life in children and adolescents post-TBI: a systematic review and meta-analysis.

UNLABELLED: Traumatic brain injury is (TBI) a leading cause of morbidity and mortality in children and adolescents in first-world nations. Research from our team investigating adult survivors of pediatric TBI indicate that survivors of severe TBI are particularly vulnerable to global impairments, including poorer school performance, greater employment difficulties, poor quality of life (QoL), and increased risk of mental health problems. Investigation into less observable consequences, including QoL, has emerged recently as an important outcome to assess in TBI populations. The status of QoL in pediatric TBI populations is mixed, likely a reflection of the varied methodological and theoretical perspectives on QoL. AIM: This systematic study will clarify the nature of QoL in survivors of pediatric TBI, and identify predictors of QoL in this group. Of 419 articles identified, 11 studies met our inclusion criteria, and 9 were ultimately analyzed in this review. Four studies reported good QoL and 5 poor QoL. The difference between good and poor QoL was statistically significant due to TBI severity [chi-square(3)=77.38, p<0.001], timing of outcome assessment [chi-square(1)=565, p<0.001], and definition of QoL [chi-square(3)=34.73, p<0.001]. The odds of having a poor QoL increased 5.8 times (RR=1.21) when injuries were more severe. Good outcomes are contingent on milder injuries, proxy reporting, and early assessment, whereas poor outcomes reflect more severe injuries and later assessment (≤ 6 months versus ≥ 1 year post-trauma, respectively).