TY - JOUR AU - Borgna-Pignatti, C. AU - Bertelli, S. PY - 2011 DA - 2011// TI - Morbidity and life expectancy in patients with thalassemia major and Intermedia JO - Eur J Clin Med Oncol VL - 3 ID - Borgna-Pignatti2011 ER - TY - STD TI - Global Burden of Diseases (2015) Mortality and Causes of Death, Collaborators. Global, regional, and national life expectancy, all-cause mortality, and cause-specific mortality for 249 causes of death, 1980-2015: a systematic analysis for the Global Burden of Disease Study 2015. Lancet. 2015;388(10053):1459–544. ID - ref2 ER - TY - JOUR AU - Caro, J. AU - Huybrechts, K. F. AU - Green, T. C. PY - 2002 DA - 2002// TI - Estimates of the effect on hepatic iron of oral deferiprone compared with subcutaneous desferrioxamine for treatment of iron overload in thalassaemia major: a systematic review JO - BMC Blood Disord VL - 2 ID - Caro2002 ER - TY - JOUR AU - Modell, B. AU - Khan, M. AU - Darlinson, M. PY - 2000 DA - 2000// TI - Survival in beta-thalassaemia major in the UK: data from the UK Thalassaemia register JO - Lancet VL - 355 ID - Modell2000 ER - TY - JOUR AU - DiPalma, A. AU - Vullo, C. AU - Zani, B. PY - 1998 DA - 1998// TI - Psychosocial integration of adolescents and young adults with Thalassaemia major JO - Ann N Y Acad Sci VL - 850 ID - DiPalma1998 ER - TY - JOUR AU - Politis, C. PY - 1998 DA - 1998// TI - The psychosocial impact of chronic illness JO - Ann N Y Acad Sci VL - 850 ID - Politis1998 ER - TY - STD TI - http://bura.brunel.ac.uk/handle/2438/4423 Accessed 15/01/2019. UR - http://bura.brunel.ac.uk/handle/2438/4423 ID - ref7 ER - TY - JOUR AU - Guyatt, G. H. AU - Osoba, D. AU - Wu, A. W. AU - Wyrwich, K. W. AU - Norman, G. R. PY - 2011 DA - 2011// TI - Methods for explaining the clinical significance of health status measures JO - Clin Ther VL - 24 ID - Guyatt2011 ER - TY - JOUR AU - Ratip, S. AU - Modell, B. PY - 1996 DA - 1996// TI - Psychological and sociological aspects of the thalassaemias JO - Semin Hematol VL - 33 ID - Ratip1996 ER - TY - JOUR AU - Rofail, D. AU - Viala, M. AU - Gater, A. AU - Abetz-Webb, L. AU - Baladi, J. F. AU - Domenica Cappellini, M. PY - 2010 DA - 2010// TI - An instrument assessing satisfaction with iron chelation therapy: psychometric testing from an open-label clinical trial JO - Adv Ther VL - 27 ID - Rofail2010 ER - TY - JOUR AU - Klaassen, R. J. AU - Barrowman, N. AU - Merelles-Pulcini, M. AU - Vichinsky, E. P. AU - Sweeters, N. AU - Kirby-Allen, M. AU - Neufeld, E. J. AU - Kwiatkowski, J. L. PY - 2013 DA - 2013// TI - Validation and reliability of a disease-specific quality of life measure (the TranQol) in adults and children with thalassaemia major JO - Br J Haematol VL - 2014 ID - Klaassen2013 ER - TY - JOUR AU - Lyrakos, G. N. AU - Vini, D. AU - Aslani, H. PY - 2012 DA - 2012// TI - Psychometric properties of the specific thalassemia quality of life instrument for adults JO - Patient Prefer Adherence VL - 6 ID - Lyrakos2012 ER - TY - JOUR AU - Ware, J. E. AU - Sherbourne, C. D. PY - 1992 DA - 1992// TI - 36-item short-form health survey (SF-36): I. conceptual framework and item selection JO - Med Care VL - 30 ID - Ware1992 ER - TY - JOUR AU - Power, M. AU - Bullinger, M. AU - Harper, A. PY - 1999 DA - 1999// TI - World Health Organisation quality of life group (WHOQOL group). The World Health Organisation WHOQOL-100: tests of the universality of quality of life in 15 different cultural groups worldwide JO - Health Psychol VL - 18 ID - Power1999 ER - TY - JOUR AU - Peto, V. AU - Jenkinson, C. AU - Fitzpatrick, R. PY - 1995 DA - 1995// TI - The development and validation of a short measure of functioning and well-being for individuals with Parkinson's disease JO - Qual Life Res VL - 4 ID - Peto1995 ER - TY - STD TI - Patrick DL, Deyo RA. Generic and disease-specific measures in assessing health status and quality of life (review). Med Care. 1989;27(3 Suppl):S217–32. ID - ref16 ER - TY - BOOK AU - Nunnally, J. C. AU - Bernstein, I. H. PY - 1994 DA - 1994// TI - Psychometric theory (3rd ed.) PB - McGraw-hill CY - New York ID - Nunnally1994 ER - TY - JOUR AU - Braun, V. AU - Clarke, V. PY - 2006 DA - 2006// TI - Using thematic analysis in psychology JO - Qual Res Psychol VL - 3 ID - Braun2006 ER - TY - JOUR AU - Perneger, T. V. AU - Courvoisier, D. S. AU - Hudelson, P. M. AU - Gayet-Ageron, A. PY - 2015 DA - 2015// TI - Sample size for pre-tests of questionnaires JO - Qual Life Res VL - 24 ID - Perneger2015 ER - TY - BOOK AU - Someren, M. V. AU - Barnard, Y. F. AU - Sandberg, J. A. C. PY - 1994 DA - 1994// TI - The Think Aloud Approach: A practical guide to modelling cognitive processes PB - Academic Press CY - London ID - Someren1994 ER - TY - BOOK AU - Bollen, K. A. PY - 1989 DA - 1989// TI - Structural equations with latent variables PB - Wiley CY - New York ID - Bollen1989 ER - TY - JOUR AU - Lococ, L. AU - Robert, G. AU - Boaz, A. AU - Vougioukalou, S. AU - Shuldham, C. AU - Fielden, J. PY - 2014 DA - 2014// TI - Testing accelerated experience-based co-design: a qualitative study of using a national archive of patient experience narrative interviews to promote rapid patient-centred service improvement JO - Health Serv Deliv Res VL - 2 ID - Lococ2014 ER - TY - JOUR AU - Goldberg, D. P. AU - Hillier, V. F. PY - 1979 DA - 1979// TI - A scaled version of the general health questionnaire JO - Psychol Med VL - 9 ID - Goldberg1979 ER - TY - JOUR AU - Likert, R. PY - 1932 DA - 1932// TI - A technique for the measurement of attitudes JO - Arch Psychol VL - 140 ID - Likert1932 ER - TY - BOOK AU - Stevens, J. P. PY - 1992 DA - 1992// TI - Applied multivariate statistics for the social sciences (2nd edition) PB - Erlbaum CY - Hillsdale ID - Stevens1992 ER - TY - STD TI - Modell B, Khan M, Darlinson M, King A, Layton M, Old JM, Petrou M, Varnavides I. A national register for surveillance of inherited disorders: beta thalassaemia in the United Kingdom. Bulletin of the WHO. 2001;79(11):1006–13. ID - ref26 ER - TY - BOOK AU - Tabachnick, B. G. AU - Fidell, L. S. PY - 2001 DA - 2001// TI - Using multivariate statistics (fourth ed.) PB - Allyn and Bacon CY - Boston, London, Toronto, Sydney, Tokyo, Singapore ID - Tabachnick2001 ER - TY - JOUR AU - Lin, X. J. AU - Lin, I. M. AU - Fan, S. Y. PY - 2013 DA - 2013// TI - Methodological issues in measuring health related quality of life JO - Tzu Chi Med J VL - 25 ID - Lin2013 ER - TY - STD TI - National Institute of Mental Health (2018) https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml. Accessed 28/12/18. UR - https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml ID - ref29 ER - TY - JOUR AU - Turner, J. AU - Kelly, B. PY - 2000 DA - 2000// TI - Emotional dimensions of chronic disease JO - West J Med VL - 172 ID - Turner2000 ER - TY - STD TI - Chambers M, McAndrew S, Nolan F, Thomas B, Watts P, Kantaris X. Service user involvement in the co-production of a mental health nursing metric. Health Expect. 2016:1–7. ID - ref31 ER - TY - JOUR AU - Bush, S. AU - Mandel, F. S. AU - Giardina, P. J. PY - 1998 DA - 1998// TI - Future orientation and life expectations of adolescents and young adults with thalassaemia major JO - Ann N Y Acad Sci VL - 850 ID - Bush1998 ER - TY - STD TI - Eiser C. Quality of life in cancer. In: Koot HM, Wallander JL, editors. Quality of life in children and adolescents: Concepts. methods and findings. Reading: Harwood Academic Publishers; 2000. p. 267–96. ID - ref33 ER - TY - STD TI - Bateman, A (2014). About service user and carer involvement in research. http://www.cpft.nhs.uk/professionals/about-service-user-and-carer-involvement-in-research.htm. Accessed 05/12/2018. UR - http://www.cpft.nhs.uk/professionals/about-service-user-and-carer-involvement-in-research.htm ID - ref34 ER - TY - BOOK PY - 2002 DA - 2002// TI - Illustrated medical dictionary PB - Dorling Kindersley CY - London, New York, Munich, Melbourne, Delhi ID - ref35 ER -