TY - JOUR AU - Varni, J. W. AU - Limbers, C. A. AU - Burwinkle, T. M. PY - 2007 DA - 2007// TI - Impaired health-related quality of life in children and adolescents with chronic conditions: a comparative analysis of 10 disease clusters and 33 disease categories/severities utilizing the PedsQL™ 4.0 generic core scales JO - Health Qual Life Outcomes VL - 5 UR - https://doi.org/10.1186/1477-7525-5-43 DO - 10.1186/1477-7525-5-43 ID - Varni2007 ER - TY - JOUR AU - Sawin, K. J. AU - Bellin, M. H. PY - 2010 DA - 2010// TI - Quality of life in individuals with spina bifida: a research update JO - Dev Disabil Res Rev VL - 16 UR - https://doi.org/10.1002/ddrr.96 DO - 10.1002/ddrr.96 ID - Sawin2010 ER - TY - JOUR AU - Verhoof, E. AU - Maurice-Stam, H. AU - Heymans, H. AU - Grootenhuis, M. PY - 2012 DA - 2012// TI - Growing into disability benefits? Psychosocial course of life of young adults with a chronic somatic disease or disability JO - Acta Paediatr VL - 101 UR - https://doi.org/10.1111/j.1651-2227.2011.02418.x DO - 10.1111/j.1651-2227.2011.02418.x ID - Verhoof2012 ER - TY - JOUR AU - Hatzmann, J. AU - Heymans, H. S. AU - Ferrer-i-Carbonell, A. AU - van Praag, B. M. AU - Grootenhuis, M. A. PY - 2008 DA - 2008// TI - Hidden consequences of success in pediatrics: parental health-related quality of life–results from the care project JO - Pediatrics VL - 122 UR - https://doi.org/10.1542/peds.2008-0582 DO - 10.1542/peds.2008-0582 ID - Hatzmann2008 ER - TY - JOUR AU - Hatzmann, J. AU - Maurice-Stam, H. AU - Heymans, H. S. AU - Grootenhuis, M. A. PY - 2009 DA - 2009// TI - A predictive model of health related quality of life of parents of chronically ill children: the importance of care-dependency of their child and their support system JO - Health Qual Life Outcomes VL - 7 UR - https://doi.org/10.1186/1477-7525-7-72 DO - 10.1186/1477-7525-7-72 ID - Hatzmann2009 ER - TY - JOUR AU - Dellve, L. AU - Samuelsson, L. AU - Tallborn, A. AU - Fasth, A. AU - Hallberg, L. R. PY - 2006 DA - 2006// TI - Stress and well-being among parents of children with rare diseases: a prospective intervention study JO - J Adv Nurs VL - 53 UR - https://doi.org/10.1111/j.1365-2648.2006.03736.x DO - 10.1111/j.1365-2648.2006.03736.x ID - Dellve2006 ER - TY - JOUR AU - Wallander, J. L. AU - Varni, J. W. PY - 1998 DA - 1998// TI - Effects of pediatric chronic physical disorders on child and family adjustment JO - J Child Psychol Psychiatry VL - 39 UR - https://doi.org/10.1017/S0021963097001741 DO - 10.1017/S0021963097001741 ID - Wallander1998 ER - TY - JOUR AU - Reinfjell, T. AU - Diseth, T. H. AU - Veenstra, M. AU - Vikan, A. PY - 2006 DA - 2006// TI - 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 JO - Health Qual Life Outcomes VL - 4 UR - https://doi.org/10.1186/1477-7525-4-61 DO - 10.1186/1477-7525-4-61 ID - Reinfjell2006 ER - TY - JOUR AU - Varni, J. W. AU - Seid, M. AU - Kurtin, P. S. PY - 2001 DA - 2001// TI - PedsQL 4.0: reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations JO - Med Care VL - 39 UR - https://doi.org/10.1097/00005650-200108000-00006 DO - 10.1097/00005650-200108000-00006 ID - Varni2001 ER - TY - STD TI - Satisfaction with life scale (SWLS). SWLS translations. [http://internal.psychology.illinois.edu/~ediener/SWLS.html] UR - http://internal.psychology.illinois.edu/~ediener/SWLS.html ID - ref10 ER - TY - JOUR AU - Diener, E. AU - Emmons, R. A. AU - Larsen, R. J. AU - Griffin, S. PY - 1985 DA - 1985// TI - The satisfaction with life scale JO - J Pers Assess VL - 49 UR - https://doi.org/10.1207/s15327752jpa4901_13 DO - 10.1207/s15327752jpa4901_13 ID - Diener1985 ER - TY - STD TI - Understanding Scores on the Satisfaction with Life Scale. [http://internal.psychology.illinois.edu/~ediener/SWLS.html] UR - http://internal.psychology.illinois.edu/~ediener/SWLS.html ID - ref12 ER - TY - CHAP AU - Clench-Aas, J. AU - Rognerud, M. AU - Dalgard, O. S. PY - 2009 DA - 2009// TI - Psykisk helse i Norge : levekårsundersøkelsen 2005 : tilstandsrapport med internasjonale sammenligninger BT - vol. 2009:6 PB - Nasjonalt folkehelseinstitutt CY - Oslo ID - Clench-Aas2009 ER - TY - JOUR AU - Clench-Aas, J. AU - Nes, R. B. AU - Dalgard, O. S. AU - Aaro, L. E. PY - 2011 DA - 2011// TI - Dimensionality and measurement invariance in the satisfaction with life scale in Norway JO - Qual Life Res VL - 20 UR - https://doi.org/10.1007/s11136-011-9859-x DO - 10.1007/s11136-011-9859-x ID - Clench-Aas2011 ER - TY - BOOK AU - Ellis, P. D. PY - 2010 DA - 2010// TI - The Essential Guide to Effect Sizes PB - Cambridge University Press CY - Cambridge UR - https://doi.org/10.1017/CBO9780511761676 DO - 10.1017/CBO9780511761676 ID - Ellis2010 ER - TY - BOOK AU - Cohen, J. PY - 1988 DA - 1988// TI - Statistical power analysis for the behavioral sciences PB - Laurence Erlbaum CY - Hillsdale, N. J. ID - Cohen1988 ER - TY - JOUR AU - Selvaag, A. M. AU - Flato, B. AU - Lien, G. AU - Sorskaar, D. AU - Vinje, O. AU - Forre, O. PY - 2003 DA - 2003// TI - Measuring health status in early juvenile idiopathic arthritis: determinants and responsiveness of the child health questionnaire JO - J Rheumatol VL - 30 ID - Selvaag2003 ER - TY - JOUR AU - Johansen, H. AU - Andresen, I. L. PY - 2009 DA - 2009// TI - Barn med skjelettdysplasi slik deres foreldre ser dem- en kartleggingsstudie JO - Pediatrisk Endokrinologi (Pediatric Endocrinology) VL - 23 ID - Johansen2009 ER - TY - JOUR AU - Dicianno, B. E. AU - Kurowski, B. G. AU - Yang, J. M. AU - Chancellor, M. B. AU - Bejjani, G. K. AU - Fairman, A. D. AU - Lewis, N. AU - Sotirake, J. PY - 2008 DA - 2008// TI - Rehabilitation and medical management of the adult with spina bifida JO - Am J Phys Med Rehabil VL - 87 UR - https://doi.org/10.1097/PHM.0b013e31818de070 DO - 10.1097/PHM.0b013e31818de070 ID - Dicianno2008 ER - TY - JOUR AU - James, M. A. AU - Bagley, A. M. AU - Brasington, K. AU - Lutz, C. AU - McConnell, S. AU - Molitor, F. PY - 2006 DA - 2006// TI - Impact of prostheses on function and quality of life for children with unilateral congenital below-the-elbow deficiency JO - J Bone Joint Surg Br VL - 88 UR - https://doi.org/10.2106/JBJS.E.01146 DO - 10.2106/JBJS.E.01146 ID - James2006 ER - TY - BOOK AU - Grut, L. AU - Kvam, M. H. PY - 2012 DA - 2012// TI - Facing ignorance: people with rare disorders and their experiences with public health and welfare services ID - Grut2012 ER - TY - JOUR AU - Ramstad, K. AU - Jahnsen, R. AU - Skjeldal, O. H. AU - Diseth, T. H. PY - 2012 DA - 2012// TI - Mental health, health related quality of life and recurrent musculoskeletal pain in children with cerebral palsy 8–18 years old JO - Disabil Rehabil VL - 34 UR - https://doi.org/10.3109/09638288.2012.656794 DO - 10.3109/09638288.2012.656794 ID - Ramstad2012 ER - TY - JOUR AU - Castori, M. PY - 2012 DA - 2012// TI - Ehlers-danlos syndrome, hypermobility type: an underdiagnosed hereditary connective tissue disorder with mucocutaneous, articular, and systemic manifestations JO - ISRN Dermatol VL - 751768 ID - Castori2012 ER - TY - JOUR AU - Kayama, M. PY - 2010 DA - 2010// TI - Parental experiences of children’s disabilities and special education in the United States and Japan: implications for school social work JO - Soc Work VL - 55 UR - https://doi.org/10.1093/sw/55.2.117 DO - 10.1093/sw/55.2.117 ID - Kayama2010 ER - TY - JOUR AU - Gravseth, H. M. AU - Bjerkedal, T. AU - Irgens, L. M. AU - Aalen, O. O. AU - Selmer, R. AU - Kristensen, P. PY - 2007 DA - 2007// TI - Life course determinants for early disability pension: a follow-up of Norwegian men and women born 1967–1976 JO - Eur J Epidemiol VL - 22 UR - https://doi.org/10.1007/s10654-007-9139-9 DO - 10.1007/s10654-007-9139-9 ID - Gravseth2007 ER - TY - JOUR AU - Bjerkedal, T. AU - Kristensen, P. AU - Skjeret, G. A. AU - Brevik, J. I. PY - 2006 DA - 2006// TI - A follow up of persons who received basic and/or supplemental benefits in childhood JO - Tidsskr Nor Laegeforen VL - 126 ID - Bjerkedal2006 ER - TY - JOUR AU - Kelly, E. H. AU - Altiok, H. AU - Gorzkowski, J. A. AU - Abrams, J. R. AU - Vogel, L. C. PY - 2011 DA - 2011// TI - How does participation of youth with spina bifida vary by age? JO - Clin Orthop Relat Res VL - 469 UR - https://doi.org/10.1007/s11999-010-1693-x DO - 10.1007/s11999-010-1693-x ID - Kelly2011 ER - TY - BOOK AU - Loeb, M. AU - Grut, L. PY - 2008 DA - 2008// TI - Sjeldne funksjonshemminger i Norge. Behov for kunnskap om insidens og prevalens PB - SINTEF-rapport A9263 CY - Norway ID - Loeb2008 ER - TY - JOUR AU - Parker, M. AU - Ashcroft, R. AU - Wilkie, A. O. AU - Kent, A. PY - 2004 DA - 2004// TI - Ethical review of research into rare genetic disorders JO - Bmj VL - 329 UR - https://doi.org/10.1136/bmj.329.7460.288 DO - 10.1136/bmj.329.7460.288 ID - Parker2004 ER - TY - BOOK AU - Altman, D. G. PY - 1991 DA - 1991// TI - Practical statistics for medical research PB - Chapman and Hall CY - London, New York ID - Altman1991 ER - TY - BOOK AU - Drotar, D. PY - 1998 DA - 1998// TI - Measuring health-related quality of life in children and adolescents : implications for research and practice PB - Lawrence Erlbaum Associates Publishers CY - Mahwah, N.J. ID - Drotar1998 ER -