Clinical characteristics, long-term complications and health-related quality of life (HRQoL) in children and young adults treated for low-grade astrocytoma in the posterior fossa in childhood

Abstract

Introduction Pilocytic astrocytoma is the most common brain tumour in childhood but knowledge concerning its long-term outcome is sparse. The aim of the study was to investigate if children treated for low-grade pilocytic astrocytoma in the posterior fossa had complications affecting physical and psychological health, cognitive functions, learning difficulties and HRQoL. Methods A descriptive single-centre study, where 22 children and young adults out of 27 eligible patients (81%) treated for pilocytic astrocytoma, with a mean follow-up time of 12.4 years (5–19 years) participated (14 adults, two by telephone interviews and eight children). The study included a review of medical records, an interview, neurological investigation, screening tools for psychiatric symptoms (Beck Depression and Anxiety Inventories and Beck Youth Inventory Scales) and HRQoL measures (RAND-36). Results Motor complications were most common, reported in 12 patients and mainly affecting fine-motor skills. Seven patients reported cognitive difficulties affecting performance in school. Educational support was given in the period immediately after treatment but not after primary school. None had elevated levels of psychiatric symptoms and the level of HRQoL as well as their psychosocial and educational situation was in correspondence with Swedish norms. The HRQoL score for vitality (VT) almost reached statistical significance. Conclusions The long-term functional outcome for children treated for low-grade astrocytoma is favourable. However, some patients report neurological complications and learning difficulties, which are unmet in school. Therefore, there is a need to identify those who need more thorough medical and cognitive follow-up programmes including interventions in school.

Participation Restrictions among Children and Young Adults with Acquired Brain Injury in a Pediatric Outpatient Rehabilitation Cohort: The Patients’ and Parents’ Perspective

“…These results confirm that experiencing participation restrictions is common in pediatric patients with brain injuries (TBI/nTBI) [2,6,7,9,12,16,17,25,[30][31][32][33][34][35][36]41]. Furthermore, the results we found, pointed out that the rehabilitation referred group had more participation restrictions compared to a Dutch hospital-based cohort [2].…”

“…Other studies based on hospital-based cohorts, report that 25–80% of children and young adults with either TBI (mild/moderate/severe) or nTBI (i.e., stroke, tumor) experience participation restrictions after ABI [ 2 , 6 , 7 , 9 , 10 , 14 , 16 , 17 , 25 , 26 , 27 , 28 , 29 , 30 , 31 , 32 , 33 , 34 , 35 , 36 ]. This wide range is due to differences in definition of participation, outcome measures, inclusion criteria (i.e., age, type and severity, hospital based) and time points (i.e., time since onset of ABI) used in these studies [ 36 ].…”

“…In both children and young adults, participation restrictions after ABI tend to persist for a long time which negatively influences life development [ 37 ]. Negative consequences could affect the development of physical, psychological and social emotional skills and competencies, as well as the shaping of identity, health and wellbeing in adulthood [ 2 , 7 , 9 , 16 , 17 , 25 , 30 , 31 , 32 , 33 , 34 , 35 , 36 , 38 , 39 , 40 ].…”

Identification of Evidence for Key Positive Psychological Constructs in Pediatric and Adolescent/Young Adult Patients with Cancer: A Scoping Review

“…[120][121][122][123] Decreased vitality was seen in patients with lower income, a longer disease course, a longer hospital stay, and sexual dysfunction. 124,125 More conflicting evidence about vitality was found for patients relative to healthy controls; five studies observed no difference, [125][126][127][128][129] three observed lower vitality, [130][131][132] and three observed higher vitality. [133][134][135] Demographic characteristics followed a similar trend.…”

Fatigue, Participation and Quality of Life in Adolescents and Young Adults with Acquired Brain Injury in an Outpatient Rehabilitation Cohort

“…1 Like in children and older patients, the sequelae of ABI in adolescents and young adults (AYAs) may have a considerable negative impact on functioning, participation and health-related quality of life (HRQoL) of AYAs during their development to adulthood. [1][2][3][4][5][6][7] Fatigue is one of the most common physical symptoms occurring after pediatric ABI, irrespective of the severity of TBI 8,9 or NTBI (brain tumors 10 ; stroke 11 ), and may persist long after injury. 12 Although fatigue is difficult to define due to complex interactions between biological, behavioral and psychosocial processes, it can be seen as a multidimensional symptom with physical, mental and emotional components.…”