Vitenskapelige artikler og andre publikasjoner

(Forfattere med tilknytning til Frambu er merket med uthevet skrift)
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2021

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Kristjansdottir OB, Vågan A, Svavarsdóttir MH, Børve HB, Hvinden K, Duprez V, Hecke AV, Heyn L, Strømme H, Stenberg U.
Training interventions for healthcare providers offering group-based patient education. A scoping review

Patient Educ Couns. 2021 May;104(5):1030-1048. PMID: 33583649 DOI: 10.1016/j.pec.2020.12.006

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Vaagan A, Olsson ABS, Arntzen C, Rise MB, Grue J, Haugland T, Langeland E, Stenberg U, Solvang PK.
Rethinking long-term condition management: An actor-level framework
Sociol Health Illn. 2021 Feb;43(2):392-407. doi: 10.1111/1467-9566.13228
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Giltvedt K, Andresen M
, Gisleberg K, Nordstrøm M.
Fysioterapi til barn med nevrodegenerativ sykdom og behov for palliasjon
Fysioterapeuten 2021, januar.

Orm S, Vatne T, Haukeland YB, Silverman WK, Fjermestad K.
The validity of a measure of adjustment in siblings of children with developmental and physical disabilities: A brief report
Developmental Neurorehabilitation, 2021: 1-4. doi:10.1080/17518423.2020.1869338

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2020

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Fjermestad KW
, Huster R, Thunberg C, Stokke S, Gravholt C, Solbakk AK.
Neuropsychological functions, sleep, and mental health in adults with Klinefelter syndrome
American Journal of Medical Genetics – Part C. 2020: 184c; 482– 492. doi:10.1002/ajmg.c.31797.

Fjermestad KW, Kanavin Ø, Nyhus L, Hoxmark LB.
Health service experiences among adults with hereditary spastic paraparesis or neurofibromatosis type 1
Molecular Genetics and Genomic Medicine; 2020: 00:e1399. https://doi.org/10.1002/mgg3.1399. PMID: 32924306.

Fjermestad K, Pat P, Dearozet S, Vatne T, Hafting M, Jegannathan B.
Manual-Based Group Intervention for Siblings and Parents of Children with Neurodevelopmental Disorders in Cambodia
Journal of Developmental and Physical Disabilities. 2020. doi:10.1007/s10882-020-09777-3

Fjermestad KW, Silverman W, Vatne T.
Group intervention for siblings and parents of children with chronic disorders (SIBS-RCT): Study protocol for a randomized controlled trial
Trials. 2020: 21:851 https://doi.org/10.1186/s13063-020-04781-6

Haukeland YB, Czajkowski NO, Fjermestad KW, Mossige S, Silverman WK, Vatne TM.
Evaluation of SIBS, an intervention for siblings and parents of children with chronic disorders
Journal of Child and Family Studies. 2020: 29, 2201–2217. doi:10.1007/s10826-020-0173

Kristjansdottir OB, Børøsund E, Westeng M, Ruland C, Stenberg U, Zangi HA, Stange K, Mirkovic J.
Mobile App to Help People With Chronic Illness Reflect on Their Strengths: Formative Evaluation and Usability Testing
JMIR Form Res. 2020 Mar 4;4(3):e16831. doi: 10.2196/16831. PMID: 32130126; PMCID: PMC7081135.

Nag HE, Nærland T.
Age-related changes in behavioural and emotional problems in Smith–Magenis syndrome measured with the Developmental Behavior Checklist
Journal of Intellectual Disabilities. January 2020. doi:10.1177/1744629519901051.PMID: 31984836

Nag HE, Øverland K, Nærland T.
School Staff’s Experiences and Coping Related to the Challenging Behaviour of Children with Smith-Magenis Syndrome in Schools: A Q Methodological Study
International Journal of Disability, Development and Education, 2020. DOI: 10.1080/1034912X.2020.1780199

Nordstrøm M, Retterstøl K, Hope S, Kolset SO.
Nutritional Challenges in children and adolescents with Down syndrome
The Lancet Child and Adolescent Health. 2020. Volume 4, Issue 6, p455-464. DOI:https://doi.org/10.1016/S2352-4642(19)30400-6. PMID: 32450124

Sandvin Olsson AB, Strøm A, Haaland-Øverby M, Fredriksen K, Stenberg U.
How can we describe impact of adult patient participation in health-service development? A scoping review
Patient Educ Couns. 2020 Aug;103(8):1453-1466. doi: 10.1016/j.pec.2020.02.028. Epub 2020 Feb 20. PMID: 32098746.

Røstad-Tollefsen HK, Kolset SO, Retterstøl K, Hesselberg H, Nordstrøm M.
Factors influencing the opportunities of supporting staff to promote a healthy diet in adults with intellectual disabilities
J Appl Res Intellect Disabil. 2020 Dec 3. doi: 10.1111/jar.12846. Epub ahead of print. PMID: 33274594.

Ålykkja A, Ruud E, Larsen MH, Vatne TM, Lie HC.
Available, but not always accessible: A nationwide, qualitative study of multidisciplinary healthcare providers’ experiences with follow-up care after paediatric brain tumour
Eur J Cancer Care (Engl). 2020 Nov 25:e13375. doi: 10.1111/ecc.13375. Epub ahead of print. PMID: 33236388.

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2019

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Annexstad EJ, Bollerslev J, Westvik J, Myhre AG, Godang K. I: Holm and M. Rasmussen.
The role of delayed bone age in the evaluation of stature and bone health in glucocorticoid treated patients with Duchenne muscular dystrophy
International Journal of Pediatric Endocrinology 2019:4. doi: 10.1186/s13633-019-0070-0. PMID 31739224.

Bliksrud YT, Myhre AG.
Hypofosfatasi – også lave P-ALP-verdier kan ha betydning
Klinisk biokemi i Norden Nr 1 vol. 31, 2019, s22-24

Diab SG, Godang K, Müller LO, Almaas R, de Lange C, Brunvand L, Hansen KM, Myhre AG, Døhlen G, Thaulow E, Bollerslev J, Möller T.
Progressive loss of bone mass in children with Fontan circulation
Congenit Heart Dis. 2019 Nov;14(6):996-1004. doi: 10.1111/chd.12848. PMID 31889957

Fjermestad KW, Haukeland YB, Mossige S, Vatne TM.
Children’s Perspectives on the Experiences of Their Siblings with Chronic Disorders
Clinical Social Work Journal 47, 290–299 (2019).

Fjermestad KW, Rø AE, Espeland KE, Halvorsen MS, Halvorsen IM.
Do I exist in this world, really, or is it just her?” Youths’ perspectives of living with a sibling with anorexia nervosa
Eat Disord. Jan-Feb 2020;28(1):80-95. doi:10.1080/10640266.2019.1573046

Fjermestad KW.
Health complaints and work experiences among adults with neurofibromatosis 1
Occup Med (Lond). 2019;69(7):504–510. doi:10.1093/occmed/kqz134. PMID 30712482

Kolset SO, Nordstrøm M.
God mat for kropp og helse ernæringsarbeid for mennesker med utviklingshemming
Fagbokforlaget, 2019.

Kolset SO, Nordstrøm M.
Kapittel 6.8 Ernæring og helse hos personer med utviklingshemming
I: Dagrun Engeset, Liv Elin Torheim og Nina Cecilie Øverby (red.) Samfunnsernæring. Universitetsforlaget, 2019

Kristoffersen KE. Lexical and gestural development in 5p deletion syndrome – a case report
Journal of communication disorders 83, 2020. ISSN 0021-9924. https://doi.org/10.1016/j.jcomdis.2019.105949.

Nag HE, Hoxmark LB, Nærland T.
Parental experiences with behavoiural problems in Smith-Magenis syndrome: The need for syndrome-specific competence
Journal of Intellectual Disabilities 2019. DOI: 10.1177/1744629519847375

Ribu IS, Simonsen HG, Løver MA, Strand BMS, Kristoffersen KE.
N-LARSP: a developmental language profile for Norwegian
I: Ball, M., Crystal, D., & Fletcher, P. (red.) Assessing Grammar: The Languages of LARSP. Communication Disorders Across Languages. Bristol: Multilingual matters. 2019.

Simonsen, H. G., Garmann, N. G. & Kristoffersen KE.
Consonant clusters in the speech of children with 5p deletion syndrome
I: Hognestad, J.K., Kinn, T. & Lohndal T. (red.): Fonologi, sosiolingvistikk og vitenskapsteori. Festskrift til Gjert Kristoffersen. Oslo: Novus, 2019.

Vatne TM, Haukeland YB, Mossige S, Fjermestad KW.
The development of a joint parent-child intervention for siblings of children with chronic disorders
Fokus på familien, 2019, 47(01), 20-35.

Treningsråd for voksne med muskelsykdom
NMK-samarbeidet, 2019

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2018

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Bakke KA, Howlin P, Retterstøl L, Kanavin Ø, Heiberg A, Nærland T.
Effect of epilepsy on autism symptoms in Angelman syndrome
Molecular Autism 9, 2 (2018). https://doi.org/10.1186/s13229-017-0185-1. PMID 29340132.

Fjermestad K, Nyhus L, Kanavin ØJ, Heiberg A, Hoxmark LB.
Health Survey of Adults with Neurofibromatosis 1 Compared to Population Study Controls
Journal of Genetic Counseling ( ISSN 1059-7700) October 2018, Volume 27, Issue 5, pp 1102–1110. PMID 29429039

Fossmo HL, Holtebekk E, Giltvedt K, Dybesland AR, Sanaker PS, Ørstavik K.
Fysisk trening hos voksne med arvelig muskelsykdom
Tidsskrift for Norsk Legeforening, 2018, nr 11. doi: 10.4045/tidsskr.17.1024

Garman N, Kristoffersen K, Simonsen H.
Phonological patterns (templates) in 5p deletion syndrome
Clinical Linguistics & Phonetics, 2018, 32(2), 101 – 113. PMID 28498724. doi: 10.1080/02699206.2017.1316775.

Giltvedt K, Fossmo HL, Koht J.
Fysioterapi ved arvelig ataksi
Fysioterapeuten 6/2018.

Hope S, Nordstrøm M, Retterstøl K, Iversen PO, Kolset SO.
Retten til et helsefremmende kosthold for personer med utviklingshemning
Tidsskriftet (2018) 2. doi: 10.4045/tidsskr.17.0985 PMID 29357630

Houge G, Mæhle IR, Eknes J.
Utviklingshemning – Årsaker og konsekvenser
Universitetsforlaget, 2018.

Kanavin ØJ, Fjermestad K.
Gastrointestinal and urinary complaints in adults with hereditary spastic paraparesis
Orphanet Journal of Rare Diseases 2018; 13: 58. PMID: 29661209.

Kolset S, Hope S, Retterstøl K, Nordstrøm M, Iversen P.
Securing rights and nutritional health for persons with intellectual disabilities – a pressing challenge
Food & Nutrition Research 2018;620. PMID: 29899685.

Lande A, Kroken M, Rabben KF. Retterstøl L.
Temple syndrome as a differential diagnosis to Prader-Willi syndrome: Identifying three new patients
American Journal of Medical Genetics. Part A. 2018 Jan;176(1):175-180. doi: 10.1002/ajmg.a.38533. PMID: 29159982

Nag H, Nordgren A, Anderlid BM, Nærland T.
Reversed gender ratio of autism spectrum disorder in Smith-Magenis syndrome
Molecular Autism. (ISSN 2040-2392) 2018 PMID 29321841.

Nordstrøm M.
Ernæringsbehandling av pasienter med spinal muskelatrofi – en litteraturstudie
Norsk Tidsskrift for Ernæring, 2018, nr 4.

Vatne TM.
Hvem skal ta omsorg for omsorgsarbeideren
Fagbladet, 2018.
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2017

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Fjermestad K, Stokke S.
Sleep problems and life satisfaction as predictors of health in men with chromosome aneuploidies
Behav Med. Apr-Jun 2018;44(2):116-122. doi: 10.1080/08964289.2017.1282852. PMID: 28632005.

Holtebekk E, Giltvedt K, Rasmussen M, Fossmo HL, Hov B, Jæger TL.
Fysioterapi ved arvelige nevromuskulære tilstander: Duchennes muskeldystrofi
Fysioterapeuten nr 9, 2017.

Nag HE, Bergsaker DK, Hunn BS, Schmidt S, Hoxmark LB.
A structured assessment of motor function, behavior, and communication in patients with Wolf-Hirschhorn syndrome
Eur J Med Genet 2017 Nov;60(11):610-617. doi: 10.1016/j.ejmg.2017.08.013.

Nermoen I, Husebye ES, Myhre AG, Løvås K.
Classic congenital adrenal hyperplasia
Tidsskr Nor Laegeforen. 2017 Apr 4;137(7):540-543. doi: 10.4045/tidsskr.16.0376. eCollection 2017 Apr. PMID: 28383228

Nordstrøm M.
Kosthold og helse hos voksne med utviklingshemning
Norgesglasset, NRK radio, 21. november 2017

Nordstrøm M.
Ernæring, kosthold og diagnose
NAKUs kunnskapsbank desember 2017

Vatne T, Zahl E.
Emotional communication in support groups for siblings of children with disabilities
Patient Education & Counseling 2017 Nov;100(11):2106-2108. doi:10.1016/j.pec.2017.05.021. PMID: 28637611

Vatne TM.
Hvordan støtte foreldre til barn med livsforkortende sykdom?
Tidskrift for Den norske legeforening nr 11 2017. PMID 28597637

Øksendal N, Mero IL, Skogseid IM, Kanavin Ø, Toft M, Koht J.
ATP1A3 relatert sykdom, dystoni, ataksi eller alternerende hemiplegi in childhood (AHC)

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2016

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Schmidt S, Nag HE, Hunn BS, Houge G, Hoxmark LB.
A structured assessment of motor function and behavior in patients with Kleefstra syndrome
European Journal of Medical Genetics Volume 59, Issue 4, April 2016, Pages 240–248. doi:10.1016/j.ejmg.2016.01.004

Fjelnset K, Owren S.
Er støttegrupper støttende? Observerende barn og fagpersoners vurderinger
Hovedoppgave i Psykologi, Psykologisk institutt, UIO. 2016

Hughes M.
Adjustment in siblings of children with chronic health conditions: Associations with parent depression, anxiety, and stress.
Hovedoppgave i Psykologi, Psykologisk institutt, UIO. 2016

Vatne TM, Fjermestad KW, Haukeland YB, Mossige S.
The development of a joint parent-child intervention for siblings of children with chronic disorders.

Haukeland YB, Vatne TM, Fjermestad KW, Mossige S.
Parent-child communication about emotional challenges experienced by siblings of children with chronic health conditions.

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2015

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Vatne TM
, Helmen IØ, Bahr D, Kanavin Ø, Nyhus L.
She Came out of mum’s Tummy the Wrong way” (Mis) Conceptions Among Siblings of Children with Rare Disorders
Journal of genetic counseling, 24 (2), 247-258. DOI: 10.1007/s10897-014-9757-9

Haukeland YB, Fjermestad KW, Mossige S, Vatne TM.
Emotional Experiences Among Siblings of Children With Rare Disorders
Journal of pediatric psychology 40 (7), 712-720. doi: 10.1093/jpepsy/jsv022

Bjaastad JF, Haugland BS, Fjermestad KW, Torsheim T, Havik OE, Heiervang ER, Öst LG.
Competence and Adherence Scale for Cognitive Behavioral Therapy (CAS-CBT) for Anxiety Disorders in Youth: Psychometric Properties
Psychol Assess 2015 Oct 12. Epub 2015 okt 12. PMID: 26460894.

Fjermestad KW, Lerner MD, McLeod BD, Wergeland GJ, Heiervang ER, Silverman WK, Öst LG, De Los Reyes A, Havik OE, Haugland BS.
Therapist-youth agreement on alliance change predicts long-term outcome in CBT for anxiety disorders
J Child Psychol Psychiatry 2015 Dec 9. Epub 2015 des 9. PMID: 26647901

Wergeland GJ, Fjermestad KW, Marin CE, Haugland BS, Silverman WK, Öst LG, Havik OE, Heiervang ER.
Predictors of dropout from community clinic child CBT for anxiety disorders
J Anxiety Disord 2015 Apr;31():1-10. Epub 2015 jan 22. PMID: 25637909

Nordstrøm M, Paus B, Andersen F, Kolset S.
Dietary aspects related to health and obesity in Williams syndrome, Down syndrome and Prader–Willi syndrome
Food Nutr Res. 2015; 59: 10.

Stokke S, Fjermestad KW, Bahr D.
Utdanning, arbeid og helse blantmenn med Klinifelters syndrom og andre mannlige kjønnskromosomavvik
Spesialpedagogikk, 2015, 2, 39-47

Jensen TK, Fjermestad KW m.fl.
Stressful life experiences and mental health problems among unaccompained asylumseeking children
Clin Child Psychology and Psychiatry, 2015, 20(1)106.116

Nordstrøm M.
Obesity, Lifestyle and Cardiovascular Risk in Down syndrome, Prader-Willi syndrome and Williams syndrome
Doktorgradsavhandling. Universitetet i Oslo, 2015.

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2014

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Vatne TM, Helmen IØ, Bahr D, Kanavin Ø, Nyhus L
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“She came out of mum’s tummy the wrong way”. (Mis)conceptions among siblings of children with rare disorders.
J Genet Couns 2015 Apr;24(2):247-58. Epub 2014 sep 6. PMID: 25190477

Jørgensen AP, Ueland T, Sode-Carlsen R, Schreiner T, Rabben KF, Farholt S, Høybye C, Christiansen JS, Bollerslev J.
Glucose homeostasis in adults with Prader-Willi syndrome during treatment with growth hormone: results from a 12-month prospective study.
Growth Horm IGF Res 2014 Feb;24(1):16-21. Epub 2013 des 4. PMID: 24360789

Wergeland GJH, Fjermestad KW, Marin CE, Haugland BSM, Bjaastad JF, Oeding K, Bjelland I, Silverman WK, Ost LG, Havik OE, Heiervang ER.
An effectiveness study of individual vs. group cognitive behavioral therapy for anxiety disorders in youth
Behav Res Ther 2014 Jun;57():1-12. Epub 2014 mar 31. PMID: 24727078

Fjermestad, K. W., Vatne, T. M., & Gjone, H.
Teaching adolescents with 22q11.2 deletion syndrome cognitive behavioral skills (In press).
Advances in Mental Health and Intellectual Disabilities.

Jensen TK, Skårdalsmo EMB, Fjermestad KW.
Development of mental health problems – a follow-up study of unaccompanied refugee minors
Child and Adolescent Psychiatry and Mental Health, 8-29. doi:10.1186/1753-2000-8-29

Wergeland GJH, Fjermestad KW, Marin C, Haugland BSM, Bjaastad J.
Treatment for anxiety disorders in youth: An effectiveness study of individual versus group cognitive behavioral therapy.
Behavior Research and Therapy, 57, 1-12.

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2013

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Fjermestad KW, Stokke S, Wergeland GJH, Anticih S, Haugland BSM, Havik OE, Heiervang ER.
Socio-Emotional Problems in Boys with Sex Chromosome Aneuploidies Compared to a Clinical Sample.
Children’s Health Care, 2015; 44:1, 40-53. DOI: 10.1080/02739615.2013.876538

Jensen TK, Fjermestad KW, Granly L, Wilhelmsen J.
Stressful life experiences and mental health problems among unaccompanied minor asylum seekers.
Clinical Child Psychology and Psychiatry. 2015;20(1):106-116. DOI: 10.1177/1359104513499356

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