Survivorship after childhood cancer - A regional Research Network for improving health and health care
- Prosjektnummer
- 2015084
- Ansvarlig person
- Ellen Ruud
- Institusjon
- Oslo universitetssykehus HF
- Prosjektkategori
- Regionalt forskningsnettverk
- Helsekategori
- Cancer
- Forskningsaktivitet
- 6. Treatment Evaluation
BAKOPP-nettverket er basert på samarbeidsprosjekter nasjonalt og internasjonalt, og deltakelse i nettverket fasiliterer dette forskningssamarbeidet. Nettverket har hatt årlige seminarer, sist våren 2018, i samarbeid med Nasjonal Kompetansetjeneste for seineffekter etter kreftbehandling, med mål om kompetanseheving og samarbeid (nærmere beskrevet i sammendraget). Nettverkets koordinator og studiesykepleiere har vært tilgjengelig for flere ulike forskningsprosjekter og nøkkelen til nettverkets suksess. Nettverket opprettet tidlig nettsiden bakopp.no, som gir oversikt over nettverkets planlagte, pågående og gjennomførte forskningsprosjekter, i tillegg til oversikt over ferdigstilte PhD'er og publikasjoner. Styringsgruppen for nettverket har hatt en brukerrepresentant som har møtt på alle styringsgruppemøtene, mens de enkelte forskningsprosjektene har hatt sine brukerrepresentanter aktivt med i de ulike prosjektene.
I 2017 var det er tilknyttet en forsker i 80% stilling, en koordinator i 50 % stilling og to studiesykepleier i 50% stilling for å fasilitere forskningen. Det ble avholdt et halvdagsseminar på OUS for alle medlemmene i nettverket med hovedtema «Oppfølging etter barnekreftbehandling – behov for Survivorship care passsports»? Det pågår diverse PhD/postdoc prosjekter med tett nasjonalt og internasjonalt samarbeid. De pågående prosjektene dekker kliniske tverrsnittstudier på seneffekter hos langtidsoverlevere etter lymfom/akutt lymfatisk leukemi i barnealder og langtidsoverlevere etter benmargstransplantasjon som barn, ungdom eller ung voksen (< 30 år), langtidseffekter etter hjernesvulstbehandling, studier på helsetjenestebehov og kommunikasjonsstrategier for unge kreftoverlevere, registerbaserte epidemiologiske studier på barnekreftoverlevere og farmakologiske studier på bivirkninger/seneffekter i barnekreftbehandlingen. BAKOPP-nettverket er også sterkt engasjert i et nasjonalt konsortium på seneffekter etter kreftbehandling hos både voksne og barn og engasjert i EU-studien PanCare Life på fertilitetsproblemer etter barnekreftbehandling. I 2017 fikk nettverket i samarbeid med Norges idrettshøyskole og Universitetet i Oslo tilslag på NFR midler til ett forskningsprosjekt om fysisk aktivitet etter kreft i barn og ungdomsårene.
PanCareLIFE: The scientific basis for a European project to improve long-term care regarding fertility, ototoxicity and health-related quality of life after cancer occurring among children and adolescents.
Eur J Cancer 2018 Nov;103():227-237. Epub 2018 sep 29
PMID: 30273888
Family history of cancer and the risk of childhood solid tumours: a Norwegian nationwide register-based cohort study.
Br J Cancer 2018 Mar 20;118(6):905-912. Epub 2018 feb 20
PMID: 29462129
Ocular findings and ocular graft-versus-host disease after allogeneic stem cell transplantation without total body irradiation.
Bone Marrow Transplant 2018 Jul;53(7):863-872. Epub 2018 jan 30
PMID: 29382955
Risk factors for impaired pulmonary function and cardiorespiratory fitness in very long-term adult survivors of childhood acute lymphoblastic leukemia after treatment with chemotherapy only
Acta Oncol 2018 May;57(5):658-664. Epub 2018 jan 5
PMID: 29303026
Cost-utility of allogeneic hematopoietic stem cell transplantation in Norway.
Bone Marrow Transplant 2018 05;53(5):657-660. Epub 2018 jan 22
PMID: 29358600
Hyperthyroidism as a late effect in childhood cancer survivors - an Adult Life after Childhood Cancer in Scandinavia (ALiCCS) study.
Acta Oncol 2018 Dec 26. Epub 2018 des 26
PMID: 30585514
Risk of cardiovascular disease among Nordic childhood cancer survivors with diabetes mellitus: A report from adult life after childhood cancer in Scandinavia.
Cancer 2018 Nov 15;124(22):4393-4400. Epub 2018 okt 11
PMID: 30307617
The PanCareSurFup consortium: research and guidelines to improve lives for survivors of childhood cancer.
Eur J Cancer 2018 Nov;103():238-248. Epub 2018 okt 1
PMID: 30286417
The PanCareSurFup cohort of 83,333 five-year survivors of childhood cancer: a cohort from 12 European countries.
Eur J Epidemiol 2018 Mar;33(3):335-349. Epub 2018 mar 2
PMID: 29497894
Risk of Soft-Tissue Sarcoma Among 69 460 Five-Year Survivors of Childhood Cancer in Europe.
J Natl Cancer Inst 2018 Jun 01;110(6):649-660.
PMID: 29165710
Liver diseases in Adult Life after Childhood Cancer in Scandinavia (ALiCCS): A population-based cohort study of 32,839 one-year survivors.
Int J Cancer 2018 02 15;142(4):702-708. Epub 2017 nov 7
PMID: 29023764
Risk of Subsequent Bone Cancers Among 69 460 Five-Year Survivors of Childhood and Adolescent Cancer in Europe.
J Natl Cancer Inst 2018 Feb 01;110(2).
PMID: 28954302
Increased prescription rates of anxiolytics and hypnotics to survivors of cancer in childhood, adolescence, and young adulthood-A population-based study.
Pediatr Blood Cancer 2018 Feb;65(2). Epub 2017 okt 27
PMID: 29077266
The Role of Primary Care Physicians in Childhood Cancer Survivorship Care: Multiperspective Interviews.
Oncologist 2019 May;24(5):710-719. Epub 2018 aug 31
PMID: 30171066
Neurosurgical treatment of gangliogliomas in children and adolescents: long-term follow-up of a single-institution series of 32 patients.
Acta Neurochir (Wien) 2018 Jun;160(6):1207-1214. Epub 2018 apr 22
PMID: 29680921
Long-term neurotoxicity and raynaud's phenomenon in patients treated with cisplatin-based chemotherapy for malignant ovarian germ cell tumor.
Acta Obstet Gynecol Scand 2018 Oct 05. Epub 2018 okt 5
PMID: 30289161
Genetic variation in gonadal impairment in female survivors of childhood cancer: a PanCareLIFE study protocol.
BMC Cancer 2018 Sep 26;18(1):930. Epub 2018 sep 26
PMID: 30257669
Fertility Among Female Survivors of Childhood, Adolescent, and Young Adult Cancer: Protocol for Two Pan-European Studies (PanCareLIFE).
JMIR Res Protoc 2018 Sep 14;7(9):e10824. Epub 2018 sep 14
PMID: 30215599
Hepatotoxicity During Maintenance Therapy and Prognosis in Children With Acute Lymphoblastic Leukemia.
J Pediatr Hematol Oncol 2017 Apr;39(3):161-166.
PMID: 28060115
Long-term inpatient disease burden in the Adult Life after Childhood Cancer in Scandinavia (ALiCCS) study: A cohort study of 21,297 childhood cancer survivors.
PLoS Med 2017 May;14(5):e1002296. Epub 2017 mai 9
PMID: 28486495
Adverse Health Outcomes and Associations with Self-Reported General Health in Childhood Lymphoma Survivors.
J Adolesc Young Adult Oncol 2017 Sep;6(3):470-476. Epub 2017 aug 24
PMID: 28837384
Suicide and violent deaths in survivors of cancer in childhood, adolescence and young adulthood-A national cohort study.
Int J Cancer 2017 Feb 01;140(3):575-580. Epub 2016 okt 26
PMID: 27750385
Do negative emotions expressed during follow-up consultations with adolescent survivors of childhood cancer reflect late effects?
Patient Educ Couns 2017 Nov;100(11):2098-2101. Epub 2017 jun 19
PMID: 28641990
A content analysis of emotional concerns expressed at the time of receiving a cancer diagnosis: An observational study of consultations with adolescent and young adult patients and their family members.
Eur J Oncol Nurs 2017 Feb;26():1-8. Epub 2016 nov 16
PMID: 28069147
Experiences with late effects-related care and preferences for long-term follow-up care among adult survivors of childhood lymphoma.
Support Care Cancer 2017 Aug;25(8):2445-2454. Epub 2017 feb 24
PMID: 28236146
Mind the Gap: (Unmet) Information needs in cancer care.
Patient Educ Couns 2017 03;100(3):381-382.
PMID: 28288750
Prescriptions of Antidepressants to Survivors of Cancer in Childhood, Adolescence, and Young Adulthood: A Population-Based Study.
J Adolesc Young Adult Oncol 2017 Mar;6(1):120-126. Epub 2016 nov 14
PMID: 27841952
Patient-provider communication about the emotional cues and concerns of adolescent and young adult patients and their family members when receiving a diagnosis of cancer.
Patient Educ Couns 2016 Oct;99(10):1576-83. Epub 2016 mar 31
PMID: 27139576
Tailoring the delivery of cancer diagnosis to adolescent and young adult patients displaying strong emotions: An observational study of two cases.
Int J Qual Stud Health Well-being 2016;11():30763. Epub 2016 apr 27
PMID: 27125477
Sequences of talk about emotional concerns in follow-up consultations with adolescent childhood cancer survivors.
Patient Educ Couns 2016 Jan;99(1):77-84. Epub 2015 jul 22
PMID: 26265504
Utility of Global Longitudinal Strain by Echocardiography to Detect Left Ventricular Dysfunction in Long-Term Adult Survivors of Childhood Lymphoma and Acute Lymphoblastic Leukemia.
Am J Cardiol 2016 Aug 01;118(3):446-52. Epub 2016 mai 14
PMID: 27296561
Right ventricular function in long-term adult survivors of childhood lymphoma and acute lymphoblastic leukaemia.
Eur Heart J Cardiovasc Imaging 2016 Jul;17(7):735-41. Epub 2016 feb 24
PMID: 26917232
Cardiac function in survivors of childhood acute myeloid leukemia treated with chemotherapy only: a NOPHO-AML study.
Eur J Haematol 2016 Jul;97(1):55-62. Epub 2015 okt 7
PMID: 26383901
Educational attainment among long-term survivors of cancer in childhood and adolescence: a Norwegian population-based cohort study.
J Cancer Surviv 2016 Feb;10(1):87-95. Epub 2015 mai 1
PMID: 25929213
Neurocognitive Outcome in Very Long-Term Survivors of Childhood Acute Lymphoblastic Leukemia After Treatment with Chemotherapy Only.
Pediatr Blood Cancer 2016 Jan;63(1):133-8. Epub 2015 aug 27
PMID: 26312396
Economic independence in survivors of cancer diagnosed at a young age: A Norwegian national cohort study.
Cancer 2016 Dec 15;122(24):3873-3882. Epub 2016 aug 12
PMID: 27518040
Long-term risk of renal and urinary tract diseases in childhood cancer survivors: A population-based cohort study.
Eur J Cancer 2016 Sep;64():52-61. Epub 2016 jun 18
PMID: 27328451
Gastrointestinal and liver disease in Adult Life After Childhood Cancer in Scandinavia: A population-based cohort study.
Int J Cancer 2016 Oct 01;139(7):1501-11. Epub 2016 jun 2
PMID: 27194488
Dental abnormalities after chemotherapy in long-term survivors of childhood acute lymphoblastic leukemia 7-40 years after diagnosis.
Support Care Cancer 2016 Apr;24(4):1497-506. Epub 2015 sep 12
PMID: 26361760
Reproduction and marriage among male survivors of cancer in childhood, adolescence and young adulthood: a national cohort study.
Br J Cancer 2016 Feb 02;114(3):348-56. Epub 2016 jan 21
PMID: 26794280
[Not Available].
Tidsskr Nor Laegeforen 2016 Sep;136(17):1464-6. Epub 2016 sep 27
PMID: 27686208
Adult life challenges in survivors of young age cancer- A Norwegian national cohort study
- Disputert:
- juni 2017
- Hovedveileder:
- Dag Moster
Cardiac effects in long-term survivors of childhood lymphoma and acute lymphoblastic leukemia
- Disputert:
- september 2017
- Hovedveileder:
- Svend Aakhus
Communication about emotional concerns in real-time medical consultations
- Disputert:
- november 2016
- Hovedveileder:
- Arnstein Finset
Oral adverse effects during and after treatment in patients and survivors of cancers outside the head and neck region.
- Disputert:
- desember 2016
- Hovedveileder:
- Bente Brokstad Herlofson
- Jan Petter Løkken Brukerrepresentant
- Bernward Zeller Prosjektdeltaker
- Cecilie E. Kiserud Prosjektdeltaker
- Anneli Mellblom Prosjektdeltaker
- Hanne Cathrine Lie Prosjektdeltaker
- Ellen Ruud Prosjektleder
- Arnstein Finset Prosjektdeltaker
- Karin Sylte Hammeren Prosjektdeltaker
- Elna Hamilton Larsen Prosjektdeltaker
- Finn Wesenberg Prosjektdeltaker
- Jon Håvard Loge Prosjektdeltaker
eRapport er utarbeidet av Sølvi Lerfald og Reidar Thorstensen, Regionalt kompetansesenter for klinisk forskning, Helse Vest RHF, og videreutvikles av de fire RHF-ene i fellesskap, med støtte fra Helse Vest IKT
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