Quality of life and health following allogeneic stem cell transplantation in childhood

Sammanfattning: Hematopoietic stem cell transplantation (SCT) is curative in refractory leukaemia and in several other haematological and immunological disorders. However, SCT is associated with morbidity and mortality and entails major strains on children and their families. The survivors often have life long somatic and psychological late effects to contend with. The overall objective oft this study was to gain knowledge of these children s life situation, health related quality of life (HRQoL) and health following SCT. All parts of the study have a cross-sectional design to evaluate selfand proxy-rated HRQoL and health. Clinical record data was compiled to investigate the relationship between the patients` medical condition and the self-rated situation. Self-rated health was reported in a symptom inventory checklist. Generic questionnaires were used to survey HRQoL and health: the Swedish Child Health Questionnaire SCHQ-CF87 (children) and -PF50 (parents), SWED-QUAL (adults), I Think I am, Sence of Coherence-13 and HAD (adults). Physical functional status was assessed using Lansky and Karnofsky scales. Socioeconomic issues were included in the last study. Initially, a consecutive sample of children (n=52, age >9 years) who were at least 3 years after SCT was studied. The second and third parts of the study also included their parents (n=42). Study four and five described adults who had undergone SCT as children (n=53, age >19) and who were at least five years after SCT. As a group, children had good self reported HRQOL compared to norm and to other chronically ill children. No correlation was found between the physician-rated degree of late effects and overall HRQOL. Contrarily, HRQOL was related to the degree of self-rated symptoms. Children with leukaemia, severe chronic GvHD or cognitive deficits had lower HRQoL. Parent proxy QoL scores tended to be lower than children s own scores .The level of late effects or of subjective symptoms was associated with a lower parental rating of the child s HRQoL. The child s condition impacted on the parents emotional situation. Clarity with regard to who is responsible for assessing the child s HRQoL is thus crucial, and so are complementing perspectives. The adult survivors after paediatric SCT perceived a poorer HRQoL than norm, but a relatively good health. HRQoL and health improved with age, although severe psychological and cognitive problems are common. A majority was troubled by infertility and had not received sufficient advice in sexual matters. Adult survivors lead fairly normal lives, but an important subgroup encounters more difficulties, with a lower educational level, psychological ill health and a poorer financial situation, particularly among the younger and women. It is emphasized that medical follow-up should be integrated with psychosocial and neuropsychological support including advice in sexuality and fertility issues, when patients enter adulthood.