Quality of life and health in children following allogeneic SCT

Abstract

Summary:A total of 52 children, age 9 or over and at least 3 years (median ¼ 8) beyond SCT for leukaemia (n ¼ 32) or nonmalignant diseases, participated in a single-centre study of health and quality of life (QoL). QoL and self-esteem were assessed with SCHQ-CF87, a generic multidimensional self-report instrument, and with 'I think I am'. As a group, the children had good QoL, but were below norm in the bodily pain (Po0.05), general health and self-esteem dimensions (Po0.01). Lansky or Karnofsky function levels were at a median of 90. Sense of coherence (SOC-13) was normal and correlated with SCHQ-CF87. Most children were subjectively and objectively in good health according to a self-assessment symptom inventory or by a medical record-based scoring of late effects, although pain was commonly reported. A total of 25% of the patients were rated as having moderate to severe late effects, without considering cataracts or infertility. Neither age at SCT, gender, malignant vs nonmalignant disease, nor stature influenced QoL significantly. Children with moderate to severe chronic graft-versus-host disease or cognitive deficits had lower QoL in some dimensions. No correlation was, however, found between the physician-rated total late effects score and overall QoL. Contrarily, QoL was clearly related to the degree of self-rated symptoms.

Health-related quality of life in survivors of BMT for paediatric malignancy: a systematic review of the literature

“…18,21,27 Three other studies 22,28,26 included allogeneic patients only and one included only autologous patients. 24 Treatment involved BMT for six cohorts, 7,18,[24][25][26][27] BMT or PBSC transplant for two 22,28 and SCT, not further specified, in four.…”

“…18,26,27,21 Informal measures of HRQL were also employed. Formal measures of behavioural and social functioning, cognitive function and IQ, individual 41 BMT specific Helder et al 26 Modified version of the Standford Health Questionnaire 42 BMT specific Badell et al 27 DSII-HSCT 10 BMT specific Parsons et al 21 Behavioural and social functioning Rutter scales for parent and teacher 43 Generic Arvidson et al 24 Child Behaviour Checklist 44 Generic Arvidson et al 24 Barrera et al 25 Phipps and Mulhern 7 Simms et al 17 Kupst et al 16 Vineland Adaptive Behaviour Scales 45 Generic Barrera et al 25 Kupst et al 16 The Youth Self-Report 46 Generic Simms et al 17 Individual/personality characteristics Piers-Harris Self-Concept Scale 57 Generic Phipps and Mulhern 7 'I think I am' (Swedish measure of self-esteem) 58 Generic Arvidson et al 24 Forinder et al 22,23 Sense of coherence (Swedish measure of tendency to view life as meaningful) 59 Generic Forinder et al 22 and personality characteristics, emotional functioning, symptoms and physical activity were identified in addition to HRQL. Formal assessments of parental anxiety, 25 depression, 25 HRQL, 21 family environment 7 and adaptability and cohesiveness 25 were also reported.…”

“…In five studies, the primary aim involved comparison of outcomes with population norms, healthy controls or other groups of sick children, 22,24,26,27,29 seven described changes in HRQL over time and pre-transplant predictors of HRQL. 7,[16][17][18]21,25,28 Sample size ranged from 22 26 to 160 21 and involved 988 children.…”

“…24 Treatment involved BMT for six cohorts, 7,18,[24][25][26][27] BMT or PBSC transplant for two 22,28 and SCT, not further specified, in four. 16,17,21,29 One or more standardized measure of HRQL (Table 3) was used in eight studies, 18,21,22,[25][26][27][28][29] but these included 12 different measures. Six generic and five cancer-specific measures were used.…”

“…We refer to the article most relevant to psychosocial outcomes for the purpose of this review. Studies were conducted in the US, 7,[16][17][18][19][20][21] Sweden, [22][23][24] Canada, 25 Netherlands, 26 Spain, 27 Austria 28 and France. 29 All but three 21,28,29 were single centre studies.…”