Patient-reported outcome of pediatric epilepsy surgery: social inclusion or exclusion as young adults?

PURPOSE: The purpose of this study was to examine the social relationships and participation in educational, vocational, and community life in young adults who had undergone epilepsy surgery during childhood or adolescence. METHODS: This was a retrospective, cross-sectional, case-controlled, and multisite design study. Findings were compared between young adults who had undergone epilepsy surgery and were seizure-free in the previous 12 months (n = 38), those who had undergone epilepsy surgery and were not seizure-free (n = 33), and a group of individuals with epilepsy who had not undergone surgery (n = 31). RESULTS: The surgical seizure-free group had significantly better general social well-being than the other two groups. Specifically, these participants were employed for more months over the past year, were less likely to report that epilepsy had affected their employment, and were more likely to belong to at least one community organization. However, these participants were not any more likely to be involved in a relationship than those in the other two groups. In addition, there were no group differences in the reported number of friends or the frequency of visits with friends, or in what participants described as their principal activity (i.e., student, employed or unemployed). DISCUSSION: There are a number of benefits to social functioning associated with having had epilepsy surgery and being seizure-free in the past year. Further research is recommended to increase our understanding of the mechanisms involved in the social and personal challenges that these individuals face.

Quality of life from the perspective of adolescents with cerebral palsy: "I just think I'm a normal kid, I just happen to have a disability".

PURPOSE: The aim of this qualitative study was to obtain the perspectives of adolescents with cerebral palsy (CP) on factors that positively or negatively influence their quality of life (QoL). METHODS: Using constructivist grounded theory, adolescents (12-16 years) were interviewed to obtain their accounts of intrinsic and extrinsic attributes that made a difference in their satisfaction with life. A purposive and theoretical sample of 12 adolescents was obtained. Narratives were coded into categories and themes, which were initially broadly defined as intrinsic (child-related) and extrinsic (environmental) factors, and then were further differentiated as analysis progressed. RESULTS: Participants reflected on their quality of life as an interaction between intrinsic and extrinsic factors. The predominant theme that emerged involved a relationship between personal interests and preferences (intrinsic) and opportunities to participate in age-appropriate activities and leisure activities (extrinsic). Opportunities to participate in activities that the adolescents value affect their perceived quality of life and this perception was consistent regardless of the objective level of motor impairment. CONCLUSION: Health care providers should take into consideration what adolescents with CP value the most. The identification of attributes that can be modified such as accessibility to and competence in, and preference for different activities may help professionals to advocate for greater participation in these activities and tailor individual therapeutic strategies accordingly, increasing the likelihood of enhancing the quality of life of this population.

Factors associated with depression among individuals with chronic fatigue syndrome: findings from a nationally representative survey.

OBJECTIVES: Most previous research regarding chronic fatigue syndrome (CFS) and depression has relied on clinical samples. The current research determined the prevalence and correlates of depression among individuals with CFS in a community sample. METHODS: The nationally representative Canadian Community Health Survey, conducted in 2000/2001, included an unweighted sample size of 1045 individuals who reported a diagnosis of CFS and had complete data on depression. Respondents with CFS who were depressed (n = 369) were compared to those who were not depressed (n = 676). Chi-square analyses, t-tests and a logistic regression were conducted. RESULTS: Thirty-six per cent of individuals with CFS were depressed. Among individuals with CFS, depression was associated with lower levels of mastery and self-esteem. In the logistic regression analyses, the odds of depression among individuals with CFS were higher for females, younger respondents, those with lower incomes and food insecurity and those whose activities were limited by pain. Two in five depressed individuals had not consulted with any mental health professional in the preceding year. Twenty-two per cent of depressed respondents had seriously considered suicide in the past year. Individuals with CFS who were depressed were particularly heavy users of family physicians, with an average of 11.1 visits annually (95% confidence interval = 10.7, 11.6). CONCLUSION: It is important for clinicians to assess depression and suicidal ideation among their patients with CFS, particularly among females, those reporting moderate to severe pain, low incomes and inadequate social support.