Quality of life and health following allogeneic stem cell transplantation in childhood
Author: Löf, Catharina M
Date: 2009-11-18
Location: Föreläsningssal R64, Rehabiliteringsgatan 4, Plan 6 (R64), Karolinska UniversitetsSjukhuset, Huddinge
Time: 09.00
Department: Institutionen för klinisk vetenskap / Department of Clinical Sciences
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Thesis (1.128Mb)
Abstract
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.
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.
List of papers:
I. Forinder U, Löf C, Winiarski J (2005). Quality of life and health in children following allogeneic SCT. Bone Marrow Transplant. 36(2): 171-6.
Pubmed
II. Forinder U, Löf C, Winiarski J (2006). Quality of life following allogeneic stem cell transplantation, comparing parents and childrens perspective. Pediatr Transplant. 10(4): 491-6.
Pubmed
III. Löf CM, Forinder U, Winiarski J (2007). Risk factors for lower health-related QoL after allogeneic stem cell transplantation in children. Pediatr Transplant. 11(2): 145-51.
Pubmed
IV. Löf CM, Winiarski J, Giesecke A, Ljungman P, Forinder U (2009). Health-related quality of life in adult survivors after paediatric allo-SCT. Bone Marrow Transplant. 43(6): 461-8.
Pubmed
V. Löf CM, Winiarski J, Ljungman P, Forinder U (2009). The socio-economic and psychosocial circumstances of adult, long-term survivors of allogeneic stem cell transplantation in childhood or adolescence. [Manuscript]
I. Forinder U, Löf C, Winiarski J (2005). Quality of life and health in children following allogeneic SCT. Bone Marrow Transplant. 36(2): 171-6.
Pubmed
II. Forinder U, Löf C, Winiarski J (2006). Quality of life following allogeneic stem cell transplantation, comparing parents and childrens perspective. Pediatr Transplant. 10(4): 491-6.
Pubmed
III. Löf CM, Forinder U, Winiarski J (2007). Risk factors for lower health-related QoL after allogeneic stem cell transplantation in children. Pediatr Transplant. 11(2): 145-51.
Pubmed
IV. Löf CM, Winiarski J, Giesecke A, Ljungman P, Forinder U (2009). Health-related quality of life in adult survivors after paediatric allo-SCT. Bone Marrow Transplant. 43(6): 461-8.
Pubmed
V. Löf CM, Winiarski J, Ljungman P, Forinder U (2009). The socio-economic and psychosocial circumstances of adult, long-term survivors of allogeneic stem cell transplantation in childhood or adolescence. [Manuscript]
Issue date: 2009-10-28
Rights:
Publication year: 2009
ISBN: 978-91-7409-689-7
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