A Review of Demographic, Medical, and Treatment Variables Associated with Health-Related Quality of Life (HRQOL) in Survivors of Hematopoietic Stem Cell (HSCT) and Bone Marrow Transplantation (BMT) during Childhood.

Hematopoietic stem cell transplantation (HSCT) is a standard treatment after disease relapse and failure of conventional treatments for cancer in childhood or as a first line treatment for some high-risk cancers. Since hematopoietic stem cells can be found in the marrow (previously called a bone marrow transplantation) or periphery, we refer to HSCT as inclusive of HSCT regardless of the origin of the stem cells. HSCT is associated with adverse side effects, prolonged hospitalization, and isolation. Previous studies have shown that survivors of HSCT are at particularly high risk for developing late effects and medical complications, and thus, in addition to survival, quality of life in survivors of HSCT is an important outcome. This review summarizes and distills findings on the health-related quality of life (HRQOL) of long-term childhood cancer survivors of HSCT and examines significant sociodemographic, medical, disease and treatment correlates of HRQOL, as well as the methodology of the studies (instruments, type of studies, timing of assessment, type of transplantation). Because previous reviews covered the studies published before 2006, this review searched three databases published between January, 2006, and August, 2016. The search identified nine studies, including 2 prospective cohort studies and 7 cross-sectional studies. All studies reported a follow-up time of >5 years. The review found that HRQOL is significantly impacted over time following childhood HSCT, with salient correlates of HRQOL found to be presence of a severe chronic health or major medical condition, graft vs. host disease (GVHD), or pain. Continual evaluation of HRQOL must be integrated into long-term follow-up after childhood HSCT, and intervention should be offered for those survivors with poor HRQOL. Longitudinal studies should be emphasized in future research to allow for predictor models of resilience and poor HRQOL

Neurocognitive Outcome and Compensating Possibilities in Children and Adolescents Treated for Acute Lymphoblastic Leukemia With Chemotherapy Only

Aim: To examine the neurocognitive outcomes in children and adolescents with acute lymphoblastic leukemia (ALL) in remission who were treated with systemic chemotherapy only (CTO).Methods: Neurocognitive performances in 36 children and adolescents, aged 8.4–15.3 years, in long-term remission from ALL 4.3–12.4 years post diagnosis, without relapse, and with no pre-diagnosis history of neurodevelopmental disorder were compared with 36 healthy controls matched for gender, age, and parents’ socio-economic status. The former patients and the healthy controls completed an extensive battery of standardized neuropsychological tests.Results: Survivors who were treated by CTO obtained significantly lower scores than did healthy controls on the domains of Copy and drawing (p = 0.001; Cohen’s d 0.85; after controlling for Type 1 errors q = 0.006), Arithmetic (p = 0.001; Cohen’s d 0.80; after controlling for Type 1 errors, q = 0.006), and Tactile sensory functions (p = 0.008; Cohen’s d 0.65; after controlling for Type 1 errors, q = 0.03). Fifty percent of the ALL group were more than 1 SD below the control groups mean on Copy and drawing. There was an interaction between age and group (ALL vs. Control, p = 0.042) on Copy and drawing, indicating that the youngest ALL patients exhibited the worst performance. The oldest ALL patients performed equal to or better than the controls. A tendency in the same direction was seen for Arithmetic and Tactile sensory functions. The ALL survivors exhibited a steeper rising learning slope on repeated tests, with lower scores on a tactile problem-solving task, tactile sensory tests, verbal memory, and visual attention, but they performed as well as the controls when stimuli were repeated.Conclusion: The results indicate that neurocognitive long-term sequelae in ALL survivors are limited to specific domains – particularly complex drawing, arithmetic, and tactile processing, and novelty processing. Cognitive deficits are shown among the youngest ALL patients. Intervention programs and school programs should account for difficulties with processing new information and taking advantage of repetitions as a strength, which may prevent survivors from falling behind their peers

Neurocognitive Outcome and Compensating Possibilities in Children and Adolescents Treated for Acute Lymphoblastic Leukemia With Chemotherapy Only

Aim: To examine the neurocognitive outcomes in children and adolescents with acute lymphoblastic leukemia (ALL) in remission who were treated with systemic chemotherapy only (CTO). Methods: Neurocognitive performances in 36 children and adolescents, aged 8.4–15.3 years, in long-term remission from ALL 4.3–12.4 years post diagnosis, without relapse, and with no pre-diagnosis history of neurodevelopmental disorder were compared with 36 healthy controls matched for gender, age, and parents’ socio-economic status. The former patients and the healthy controls completed an extensive battery of standardized neuropsychological tests. Results: Survivors who were treated by CTO obtained significantly lower scores than did healthy controls on the domains of Copy and drawing (p = 0.001; Cohen’s d 0.85; after controlling for Type 1 errors q = 0.006), Arithmetic (p = 0.001; Cohen’s d 0.80; after controlling for Type 1 errors, q = 0.006), and Tactile sensory functions (p = 0.008; Cohen’s d 0.65; after controlling for Type 1 errors, q = 0.03). Fifty percent of the ALL group were more than 1 SD below the control groups mean on Copy and drawing. There was an interaction between age and group (ALL vs. Control, p = 0.042) on Copy and drawing, indicating that the youngest ALL patients exhibited the worst performance. The oldest ALL patients performed equal to or better than the controls. A tendency in the same direction was seen for Arithmetic and Tactile sensory functions. The ALL survivors exhibited a steeper rising learning slope on repeated tests, with lower scores on a tactile problem-solving task, tactile sensory tests, verbal memory, and visual attention, but they performed as well as the controls when stimuli were repeated. Conclusion: The results indicate that neurocognitive long-term sequelae in ALL survivors are limited to specific domains – particularly complex drawing, arithmetic, and tactile processing, and novelty processing. Cognitive deficits are shown among the youngest ALL patients. Intervention programs and school programs should account for difficulties with processing new information and taking advantage of repetitions as a strength, which may prevent survivors from falling behind their peers.publishedVersio

Kidney transplantation in childhood: mental health and quality of life of children and caregivers

Our objective was to assess the mental health and health-related quality of life (HRQOL) in children and their parents after renal transplantation (TX) compared to healthy controls and children with acute lymphoblastic leukemia (ALL) and to identify possible health status variables associated with impaired mental health and HRQOL. Thirty-eight TX children with a median age of 13 (range 3–19) years were investigated. Mental health was assessed by the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and the Strength and Difficulties Questionnaire (SDQ-20). Each mother’s own mental health and QOL were assessed by the General Health Questionnaire (GHQ-30) and the Quality of Life Scale (QOLS). Forty children with ALL [median age 11 (8.5–15.4) years] and 42 healthy children [median age 11 (8.9– 15) years] served as controls. Treadmill exercise results from 22 of the 38 patients were included in the analysis. TX children showed significantly higher levels of mental health problems and lower HRQOL at 2 to 16 years after transplantation compared to both control groups. Body mass index and maximal oxygen uptake (n = 22/38) were significant predictors of child mental health (SDQ) and child QOL (PedsQL), respectively. Based on these results, we suggest that rehabilitation after TX should include a focus on physical activity and QOL to reduce interconnected physical and psychological morbidity in kidney TX children

Measuring health-related quality of life in young adolescents: Reliability and validity in the Norwegian version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL) generic core scales

BACKGROUND: Health-Related Quality of Life (HRQOL) studies concerning children and adolescents are a growing field of research. The Pediatric Quality of Life Inventory (PedsQL™) is considered as a promising HRQOL instrument with the availability of age appropriate versions and parallel forms for both child and parents. The purpose of the current study was to evaluate the psychometric properties of the Norwegian translation of the Pediatric Quality of Life Inventory (PedsQL™) 4.0 generic core scale in a sample of healthy young adolescents. METHODS: A cross-sectional study of 425 healthy young adolescents and 237 of their caregivers participating as a proxy. Reliability was assessed by Cronbach's alpha. Construct validity was assessed using exploratory factor analysis and by exploring the intercorrelations between and among the four PedsQL subscales for adolescents and their parents. RESULTS: All the self-report scales and proxy-report scales showed satisfactory reliability with Cronbach's alpha varying between 0.77 and 0.88. Factor analysis showed results comparable with the original version, except for the Physical Health scale. On average, monotrait-multimethod correlations were higher than multitrait-multimethod correlations. Sex differences were noted on the emotional functioning subscale, girls reported lower HRQOL than boys. CONCLUSION: The Norwegian PedsQL is a valid and reliable generic pediatric health-related Quality of Life measurement that can be recommended for self-reports and proxy-reports for children in the age groups ranging from 13–15 years

Children with acute lymphoblastic leukaemia : A study of health-related quality of life, mental health and intellectual aspects

Paper I reprinted with kind permission of Blackwell publishing ©. Copyright Acta Paediatrica, Stiftelsen för Acta Paediatrica and Blackwell Publishing. Paper II is a preprint submitted to European journal of Cancer Care. Paper IV is a preprint version of an article submitted for publication in Nordic Journal of Psychiatry. © 2007, copyright Taylor and Francis. The journal is available online at http://www.informaworld.com, http://www.informaworld.com/smpp/title~content=t713691698~db=all .Paper V is reprinted with kind permission of Den norske psykologforening, Tidskrift for den norske psykologforening

Måleegenskaper ved den norske versjonen av Kinder Lebensqualität Fragebogen (KINDL®)

Ulrike Ravens-Sieberer og Monika Bullinger står bak denne testen som kom ut på tysk i 2000, og som måler livskvalitet. Sølvi Helseth og Thomas Jozefiak står bak den norske oversettelsen, med publisering i 2004. Oversettelsen ble gjennomført etter internasjonale retningslinjer og godkjent av originalforfatterne. Målgruppen er barn i førskole- og skolealder, samt ungdom. KINDL® foreligger i fire versjoner tilpasset alder og informant (barneversjonen for 8-12 år, ungdomsversjonen for 13-16 år og foreldreversjonen for h.h.v. 4-7 år og 8-16 år). Foreldreversjonen for barn 4-7 år omfatter 12 spørsmål der kun en totalskår kan beregnes. For foreldreversjonen 8-16 år og barne- og ungdomsversjonene har instrumentet seks delskalaer med fire items i hvert domene (Skole, Familie, Venner, Fysisk velvære («well-being»), Psykisk velvære («well-being») og Selvverdi («Self-esteem»). For hver subskala (domene) beregnes det en sumskår. På grunnlag av alle 24 items kan en Total livskvalitetsskåre beregnes, der 100 betyr optimal livskvalitet. KINDL® fylles ut på mindre enn 30 minutter. Testen kan skåres manuelt, som krever forholdsmessig lang tid. En SPSS syntaksfil som kan fås av Jozefiak gjør skåringen noe lettere, men forutsetter tilgang til og kunnskap om programmet. For tolkning av skårer kreves det testspesifikk opplæring samt minst 3-årig høyskole-utdanning innen helse- og sosialfag. Vårt systematiske litteratursøk søket resulterte i 6 publikasjoner hvor KINDL® var brukt på norske utvalg. I tillegg ble én studie publisert etter at søket var gjennomført. Tre av de 7 publikasjoner var alle basert på det samme ikke-representative («convenient») utvalg av skolelever fra tre 9. klasser i Oslo, men alle tre oppga ulike psykometriske data. To studier var basert på representative data fra den generelle populasjonen og to fra kliniske populasjoner med et kasus-kontroll design. Vi fant ingen dokumentasjon om foreldreversjonen for barn 4-7 år. Vi fant kun én representativ studie fra et stort utvalg av skoleelever i alderen 8-16 fra den generelle populasjon i ett fylke. Normgrunnlaget er derfor begrenset på nasjonalt plan. God reliabilitet for hovedskalaene av selv- og foreldrerapport. Tilfredsstillende for de fleste subskalaene, men ikke tilfredsstillende for noen subskaler i de yngste aldersgrupper (10-11 åringer). God test-retest reliabilitet (0,70 for Psykisk velvære til 0,87 Familie), untatt for ”Fysisk velvære”. Lovende endringssensitivitet. Med hensyn til begrepsvaliditet er den originale seksfaktorstrukturen i den tyske utgaven ikke entydig etablert for den norske KINDL®. Lovende kriterievaliditet. KINDL® representerer et lovende livskvalitetsinstrument for barn og ungdom i Norge. Hvor opplysningene skal inngå i et beslutningsgrunnlag i vanlig klinisk bruk, anbefales det å bruke totalskalaene i både foreldre, barne- og ungdomsversjonene (8-16 år) istedenfor subskalaene. Utenfor regionen Midt-Norge er også normgrunnlaget ennå for begrenset til å kunne fungere som en sikker referansestandard. Bruken av foreldreversjonen 4-7 år anbefales per tidspunkt ikke

Måleegenskaper ved den norske versjonen av The Pediatric Quality of Life Inventory TM, 4.0 (PedsQL)

Livskvalitetsmålet PedsQLTM ble utviklet av James W. Varni, og første gang publisert på engelsk i 1999. Trude Reinfjell og Trond H. Diseth står bak den norske oversettelsen med publisering i 2006. Oversettelsen ble gjennomført etter internasjonale retningslinjer og godkjent av originalforfatteren. Målgruppen er barn i førskole- og skolealder, samt ungdom og unge voksne. PedsQLTM foreligger i fem versjoner tilpasset alder og informant (barneversjonen for 5-7 år, tenåringsversjonen for 8-12 år, ungdomsversjonen for 13-18 år, ung voksenversjonen fra 18-25 år og foreldreversjoner for h.h.v. 2-4 år, 5-7 år, 8-12 år og 13-18 år). Både barne- og foreldreversjonene for 8-12 år, 13-18 år, og ung voksen versjonen omfatter 23 delspørsmål inndelt i fire delskalaer Fysisk fungering (åtte spørsmål), Følelsesmessig fungering (fem spørsmål), Sosial fungering (fem spørsmål), Skolemessig fungering (fem spørsmål). For hver subskala (domene) beregnes det en sumskår. På grunnlag av alle 23 items kan en Total livskvalitetsskåre beregnes der 100 betyr optimal livskvalitet, i tillegg kan en Psykososial sumskåre beregnes (basert på delskalaene: emosjonell, sosial og skolemessig fungering). PedsQL fylles ut på mindre enn 30 minutter. Testen kan skåres manuelt, som krever forholdsmessig lang tid. En SPSS syntaksfil som kan fås av Reinfjell gjør skåringen noe lettere, men forutsetter tilgang til og kunnskap om programmet. For tolkning av skårer kreves det testspesifikk opplæring samt minst 3-årig høyskoleutdanning innen helse- og sosialfag. Nyttig informasjon om PedsQL er også tilgjengelig på websiden www.pedsql.org. Vårt systematiske litteratursøk resulterte i tre norske publikasjoner og to publikasjoner fra to svenske studier (PedsQLTM 8-12 år og 13-18 år, selv- og foreldrerapportering). Ingen publikasjoner for øvrige versjoner. Intet nasjonalt normgrunnlag foreligger, kun en representativ studie fra den generelle populasjon i Sør-Trøndelag (13-15 år). To av de norske studiene omfatter kliniske populasjoner med et kasus-kontroll design. Vi fant et begrenset dokumentasjonsgrunnlag for de psykometriske egenskapene ved den norske PedsQLTM. Det foreligger i dag intet norsk normmateriale, men en tilfredsstillende validering av instrumentet for aldersgruppen 13-15 år. Det er holdepunkter for en firefaktormodell. Instrumentet har tilfredsstillende reliabilitet for alle delskalaene (>0.70). PedsQLTM representerer et lovende livskvalitetsinstrument for barn og ungdom i Norge, relevant for både klinisk og forskningsmessig bruk. Tilfredsstillende validering av instrumentet er vist for aldersgruppen 13-15 år. Instrumentet anbefales derfor spesielt for denne aldersgruppen