Publications

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Displaying 1 through 50 of 60 publications.

Whalley D, Belongie K, Frangiosa T, Krasa H, Mladsi DM, Twiss J, Wolowacz S. Understanding the patient experience of erythropoietic protoporphyria and x-linked protoporphyria: a qualitative study. Poster presented at the ISPOR 2022 Conference; May 15, 2022. Washington, DC. [abstract] Value Health. 2022 Jun; 25(6 S1).

Doward LC, Balp M-M, Twiss J, Slota C, Cryer D, Brass CA, Anstee QM, Sanyal AJ. Development of a patient-reported outcome measure for non-alcoholic steatohepatitis (NASH-CHECK): results of a qualitative study. Patient. 2020 Dec 18. doi: 10.1007/s40271-020-00485-w

Twiss J, Whalley D, Doward L, Balp MM, Brass C, Lopez P, Loeffler J, Cai J, Cryer D, Sanyal AJ, Anstee QM. Psychometric evaluation of NASH-CHECK, a patient-reported outcome measure for Nonalcoholic Steatohepatitis. Poster presented at the ISPOR 2019 European Conference; November 6, 2019. Copenhagen, Denmark. [abstract] Value Health. 2019 Dec; 22(S3).

Doward L, Balp MM, Poepsel T, Twiss J, Brass C, Cai J, Cryer D, Sanyal AJ, Anstee QM. International adaptation and linguistic validation of NASH-CHECK, a novel patient-reported outcome measure for patients with Nonalcoholic Steatohepatitis. Poster presented at the ISPOR 2019 European Conference; November 2019. Copenhagen, Denmark.

Harrington M, Whalley D, Twiss J, Rushton R, Martin S, Huynh L, Yang H. Insights into the natural history of metachromatic leukodystrophy from interviews with caregivers. Orphanet J Rare Dis. 2019 Apr 29;14(1):89. doi: 10.1186/s13023-019-1060-2

Doward L, Balp MM, Twiss J, Slota C, Cryer D, Langford A, Collen R, Agashivala N, Brass C, Anstee QM, Sanyal A. Measuring what matters to patients: the development of the NASH-CHECK, a new patient-reported outcome instrument for nonalcoholic steatohepatitis. Poster presented at the 2018 EASL International Liver Conference; April 13, 2018. Paris, France. [abstract] J Hepatol. 2018 Apr; 68(Suppl 1):S570.

Harrington M, Whalley D, Twiss J, Rushton R, Martin S, Huynh L, Yang H. Metachromatic leukodystrophy and caregiver perspectives: understanding the natural history of the disease from interviews with caregivers. Poster presented at the 14th Annual WORLDSymposium; February 6, 2018. San Diego, CA.

Twiss J, Balp M, Doward L, Slota C, Cryer D, Langford A, Collen R, Agashivala N, Brass C, Sanyal A, Anstee QM. Development of a new patient-reported outcome measure for non-alcoholic steatohepatitis: NASH-check. Poster presented at the 2017 ISPOR 20th Annual European Congress; November 7, 2017. Glasgow, Scotland.

Doward LC, Balp M-M, Twiss J, Slota C, Cryer D, Langford A, Collen R, Agashivala N, Brass CA, Anstee QM, Sanyal AJ. Understanding the patient-perceived impact of nonalcoholic steatohepatitis: raising the volume on a silent disease. Poster presented at the 2017 AASLD Liver Meeting; October 23, 2017. Washington, DC. [abstract] Hepatology. 2017 Jul; 66(1 Suppl):1182A.

Doward LC, Balp MM, Stewart KE, Cryer D, Langford A, Twiss J, Agashivala N, Brass C, Anstee QM, Sanyal A. Exploring the patient perceived impact of non-alcoholic steatohepatitis. Poster presented at the 2017 EASL International Liver Conference; April 2017. Amsterdam, The Netherlands. [abstract] J Hepatol. 2017 Apr; 66(1 Supplement):S422-3. doi: 10.1016/S0168-8278(17)31208-4

Wilburn J, Twiss J, Kemp K, McKenna SP. A qualitative study of the impact of Crohn's disease from a patient's perspective. Frontline Gastroenterol. 2017;8:68-73. doi: 10.1136/flgastro-2015-100678

Rouse M, Twiss J, McKenna SP. Co-calibrating quality-of-life scores from three pulmonary disorders: implications for comparative-effectiveness research. J Med Econ. 2016 Jun;19(6):596-603. doi: 10.3111/13696998.2016.1148700

Twiss J, McKenna SP, Graham J, Swetz K, Sloan J, Gomberg-Maitland M. Applying Rasch analysis to evaluate measurement equivalence of different administration formats of the activity limitation scale of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR). Health Qual Life Outcomes. 2016 Apr 9;14(1):57. doi: 10.1186/s12955-016-0462-2.

Wilburn J, McKenna SP, Twiss J, Kemp K, Campbell S. Assessing quality of life in Crohn's disease: development and validation of the Crohn's Life Impact Questionnaire (CLIQ). Qual Life Res. 2015 Sep;24(9):2279-88. doi: 10.1007/s11136-015-0947-1.

Wilburn J, McKenna SP, Twiss J, Rouse M, Korkosz M, Jancovic R, Nemec P, Pacheco-Tena CF, Saraux A, Westhovens R, Durez P, Martin M, Tammaru M. Further international adaptation and validation of the Rheumatoid Arthritis Quality of Life (RAQoL) questionnaire. Rheumatol Int. 2015 Apr;35(4):669-75. doi: 10.1007/s00296-014-3138-4

Twiss J, McKenna SP. Comparing the impact of psoriasis and atopic dermatitis on quality of life: co-calibration of the PSORIQoL and QoLIAD. Qual Life Res. 2015 Jan;24(1):105-13. doi: 10.1007/s11136-014-0630-y

Graham JE, Rouse M, Twiss J, McKenna SP, Vidalis AA. Greek adaptation and validation of the Ankylosing Spondylitis Quality of Life (ASQoL) measure. Hippokratia. 2015;19(2):119-24.

Wilburn J, McKenna S, Twiss J, Kemp K, Campbell S. Validation of the Crohn's Life Impact Questionnaire (CLIQ), the first patient-reported outcome measure specific to adults with Crohn's disease. Poster presented at the 2013 ISPOR 16th Annual European Congress; November 2013. Dublin, Ireland. [abstract] Value Health. 2013 Nov; 16(7):A499-500. doi: 10.1016/j.jval.2013.08.1129

Wilburn J, McKenna S, Twiss J, Kemp K, Campbell S. Validating the Unidimensional Fatigue Impact Scale (U-FIS) for use in Crohn's disease. Poster presented at the 2013 ISPOR 16th Annual European Congress; November 2013. Dublin, Ireland. [abstract] Value Health. 2013 Nov; 16(7):A499. doi: 10.1016/j.jval.2013.08.1128

Twiss J, McKenna S, Graham JE, Swetz KM, Sloan J, Gomberg-Matiland M. Assessing measurement equivalence of different forms of administration of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) using Rasch analysis. Poster presented at the 2013 ISPOR 16th Annual European Congress; November 2013. Dublin, Ireland. [abstract] Value Health. 2013 Nov; 16(7):A606. doi: 10.1016/j.jval.2013.08.1731

Twiss J, McKenna S, Rouse M. Using Rasch analysis to co-calibrate scores from outcome measures specific to asthma (ALIS), chronic obstructive pulmonary disease (LCOPD) and pulmonary hypertension (CAMPHOR). Poster presented at the 2013 ISPOR 16th Annual European Congress; November 2013. Dublin, Ireland. [abstract] Value Health. 2013 Nov; 16(7):A605. doi: 10.1016/j.jval.2013.08.1724

Rouse M, McKenna S, Twiss J, Graham JE, Wilburn J. Quality of life outcomes in multiple sclerosis: a review of the literature. Poster presented at the 2013 ISPOR 16th Annual European Congress; November 2013. Dublin, Ireland. [abstract] Value Health. 2013 Nov; 16(7):A626. doi: 10.1016/j.jval.2013.08.1843

Graham JE, McKenna S, Wilburn J, Twiss J. Assessing quality of life in adult growth hormone deficiency: further development of the QoL-AGHDA. Poster presented at the 2013 ISPOR 16th Annual European Congress; November 2013. Dublin, Ireland. [abstract] Value Health. 2013 Nov; 16(7):A446-7. doi: 10.1016/j.jval.2013.08.710

Twiss J, McKenna S, Ganderton L, Jenkins S, Ben-L'amri M, Gain K, Fowler R, Gabbay E. Psychometric performance of the CAMPHOR and SF-36 in pulmonary hypertension. BMC Pulm Med. 2013 Jul 12;13:45. doi: 10.1186/1471-2466-13-45

Doward LC, Wilburn J, McKenna SP, Leicester R, Epstein O, Hedley V, Korala S, Twiss J, Jones D, Geraint M. Development and validation of the Bowel Cleansing Impact Review (BOCLIR). Frontline Gastroenterol. 2013 Feb;4(2):112-9. doi: 10.1136/flgastro-2012-100278

Selimovic N, Rundqvist B, Kjork E, Viriden J, Twiss J, McKenna SP. Adaptation and validation of the cambridge pulmonary hypertension outcome review for Sweden. Scand J Public Health. 2012 Dec;40(8):777-83. doi: 10.1177/1403494812464445

Twiss J, Ganderton L, Jenkins S, Ben-L'amri M, Gain K, Fowler R, Gabbay E, McKenna S. Comparison of the psychometric properties of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) and the SF-36 in patients with pulmonary hypertension. Poster presented at the 2012 ISPOR 15th Annual European Congress; November 2012. Berlin, Germany. [abstract] Value Health. 2012 Nov; 15(7):A378-9.

Twiss J, McKenna SP. Equating scores on two dermatology-specific patient-reported outcome measures. Poster presented at the 19th Annual Conference of the International Society for Quality of Life Research (ISOQOL); October 2012. Budapest, Hungary. [abstract] Qual Life Res. 2012 Oct; 21(1):94. doi: 10.1007/s11136-012-0248-x

Ben-L'amri M, McKenna SP, Wilburn J, Twiss J. Assessing quality of life in new regions of the world: further development of the PsAQoL. Poster presented at the 19th Annual Conference of the International Society for Quality of Life Research (ISOQOL); October 2012. Budapest, Hungary. [abstract] Qual Life Res. 2012 Oct; 21(S1):120.

Cima K, Twiss J, Speich R, McKenna SP, Grunig E, Kahler CM, Ehlken N, Treder U, Crawford SR, Huber LC, Ulrich S. The German adaptation of the Cambridge pulmonary hypertension outcome review (CAMPHOR). Health Qual Life Outcomes. 2012 Sep 13;10:110. doi: 10.1186/1477-7525-10-110

McKenna SP, Twiss J, Crawford SR, Oprandi NC, Tammaru M, Miravitlles M. The living with chronic obstructive pulmonary disease scale was successfully adapted for use in southern european (Italian and Spanish) and eastern european (Russian) cultures. J Clin Epidemiol. 2012 Aug;65(8):906-14.

Twiss J, McKenna S, Crawford S, Wilburn J, Loth K. Are transfusions for Myelodysplasia (MDS) an acceptable treatment to patients? Poster presented at the 17th Congress of European Hematology Association; June 2012. Amsterdam, the Netherlands. [abstract] Haematologica. 2012 Jul 16; 97(S1):693.

McKenna S, Twiss J, Wilburn J, Crawford S, Loth K. Investigation of the impact of MDS from the patients' perspective. Poster presented at the 17th Congress of the European Hematology Association; June 2012. Amsterdam, The Netherlands. [abstract] Haematologica. 2012 Jun; 97(S1):357-8.

McKenna SP, Wilburn J, Twiss J, Ben-L'amri M, Kemp K, Campbell S. Crohn's disease: symptoms, functional limitations and quality of life. Poster presented at the 19th Annual Conference of the International Society for Quality of Life Research (ISOQOL); November 2012. Budapest, Hungary. [abstract] Qual Life Res. 2012; 21(1):103. doi: 10.1007/s11136-012-0248-x

Wilburn J, Crawford SR, McKenna SP, Twiss J, Ben-L'amri M, Kemp K, Campbell S. Assessing patient reported outcome in Crohn's disease. Poster presented at the 2012 Digestive Disorders Federation Meeting; June 2012. Liverpool. [abstract] Gut. 2012; 61(Suppl 2):391. doi: 10.1136/gutjnl-2012-302514d.229

Twiss J, Meads DM, Preston EP, Crawford SR, McKenna SP. Can we rely on the Dermatology Life Quality Index (DLQI) as a measure of the impact of psoriasis or atopic dermatitis? J Invest Dermatol. 2012 Jan;132(1):76-84. doi: 10.1038/jid.2011.238

McKenna SP, Wilburn J, Crawford SR, Aryamanesh M, Twiss J. New developments in the Ankylosing Spondylitis Quality of Life (ASQOL) scale. Poster presented at the 2011 ISPOR 14th Annual European Congress; November 2011. Madrid, Spain. [abstract] Value Health. 2011 Nov; 14(7):A314.

Twiss J, McKenna SP, Bloch M, Bonney M. Patient and clinician perceived benefit of early consumption of famciclovir for the treatment of herpes outbreaks. Poster presented at the 2011 ISPOR 14th Annual European Congress; November 2011. Madrid, Spain. [abstract] Value Health. 2011 Nov; 14(7):A266. doi: 10.1016/j.jval.2011.08.193

Ganderton L, Jenkins S, McKenna SP, Gain K, Fowler R, Twiss J, Gabbay E. Validation of the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) for the Australian and New Zealand population. Respirology. 2011 Nov;16(8):1235-40. doi: 10.1111/j.1440-1843.2011.02030.x

Crawford SR, McKenna SP, Twiss J, Tammaru M, Oprandi NC. Further developments of the Asthma Life Impact Scale (ALIS). Poster presented at the 2011 ISPOR 14th Annual European Congress; November 2011. [abstract] Value Health. 2011 Nov; 14(7):A497. doi: 10.1016/j.jval.2011.08.1440

Crawford SR, McKenna SP, Twiss J, Tammaru M, Oprandi NC. Further developments of the Living with Chronic Obstructive Pulmonary Disease (LCOPD). Poster presented at the 2011 ISPOR 14th Annual European Congress; November 2011. [abstract] Value Health. 2011 Nov; 14(7):A497.

McKenna SP, Meads DM, Doward LC, Twiss J, Pokrzywinski R, Revicki D, Hunter CJ, Glendenning GA. Development and validation of the living with chronic obstructive pulmonary disease questionnaire. Qual Life Res. 2011 Sep 1;20(7):1043-52.

McKenna SP, Wilburn J, Twiss J, Crawford SR, Hána V, Karbownik-Lewinska M, Popovic V, Pura M, Koltowska-Häggström M. Adaptation of the QoL-AGHDA scale for adults with growth hormone deficiency in four Slavic languages. Health Qual Life Outcomes. 2011 Aug 2;9:60. doi: 10.1186/1477-7525-9-60

Twiss J, McKenna SP, Crawford SR, Tammaru M, Oprandi NC. Adapting the Asthma Life Impact Scale (ALIS) for use in Southern European (Italian) and Eastern European (Russian) cultures. J Med Econ. 2011;14(6):729-38. doi: 10.3111/13696998.2011.615356

McKenna SP, Doward LC, Twiss J, Hagell P, Oprandi NC, Fisk J, Grand'Maison F, Bhan V, Arbizu T, Brassat D, Kohlmann T, Meads DM, Eckert BJ. International development of the Patient-Reported Outcome Indices for Multiple Sclerosis (PRIMUS). Value Health. 2010 Dec 1;13(8):946-51.

Ribeiro-Oliveira Jr A, Mol SS, Twiss J, Alencar GA, Miranda PA, Naves LA, Azevedo MF, Basilio FM, Boguszewski CL, Nogueira KC, Vilar L, Koltowska-Haggstrom M, McKenna SP. The brazilian version of the Quality of Life Assessment of Growth Hormone Deficiency in Adults (QoL-AGHDA): four-stage translation and validation. Arq Bras Endocrinol Metabol. 2010 Dec;54(9):833-41.

Twiss J, McKenna S, Doward LC, Hana V, Karbownik-Lewinksa M, Popovic V. Further developments of the Quality of Life Assessment of Growth Hormone Deficiency in Adults (QOL-AGHDA). Poster presented at the 13th Annual European Congress; November 2010. Prague, Czech Republic. [abstract] Value Health. 2010 Nov; 13(7):A297.

Twiss J, McKenna S, Crawford SR, Doward LC. Scaling properties of two commonly used outcome measures in dermatology – the Dermatology Life Quality Index (DLQI) and the Psoriasis Quality of Life Scale (PSORIQoL). Presented at the 13th Annual European Congress; November 2010. Prague, Czech Republic. [abstract] Value Health. 2010 Nov; 13(7):A244.

Twiss J, Doward LC, McKenna SP, Eckert B. Interpreting scores on multiple sclerosis-specific patient reported outcome measures (the PRIMUS and U-FIS). Health Qual Life Outcomes. 2010 Oct 1;8:117.

Doward LC, Meads DM, Fisk J, Twiss J, Hagell P, Opra N, Grand'Maison F, Bhan V, Arbizu T, Kohlmann T, Brassat D, Eckert B, McKenna S. International development of the Unidimensional Fatigue Impact Scale (U-FIS). Value Health. 2010;13(4):463-8.