1. Turner C, Hilton-Jones D. The myotonic dystrophies: diagnosis and management. J Neurol Neurosurg Psychiatry. 2010;81:358-67.
2. Bann CM, Abresch RT, Biesecker B, Conway KC, Heatwole C, Peay H, et al. Measuring quality of life in muscular dystrophy. Neurology. 2015;84:1034-42.
3. Burns TM, Graham CD, Rose MR, Simmons Z. Quality of life and measures of quality of life in patients with neuromuscular disorders. Muscle Nerve. 2012;46:9-25.
4. Graham CD, Rose MR, Grunfeld EA, Kyle SD, Weinman J. A systematic review of quality of life in adults with muscle disease. J Neurol. 2011;258:1581-92.
5. Bos I, Wynia K, Almansa J, Drost G, Kremer B, Kuks J. The prevalence and severity of disease-related disabilities and their impact on quality of life in neuromuscular diseases. Disabil Rehabil. 2018:1-6.
6. Gagnon C, Mathieu J, Jean S, Laberge L, Perron M, Veillette S, et al. Predictors of disrupted social participation in myotonic dystrophy type 1. Arch Phys Med Rehabil. 2008;89:1246-55.
7. Graham CD, Weinman J, Sadjadi R, Chalder T, Petty R, Hanna MG, et al. A multicentre postal survey investigating the contribution of illness perceptions, coping and optimism to quality of life and mood in adults with muscle disease. Clin Rehabil. 2014;28:508-19.
8. Natterlund B, Ahlstrom G. Activities of daily living and quality of life in persons with muscular dystrophy. J Rehabil Med. 2001;33:206-11.
9. Symonds T, Randall JA, Campbell P. Review of patient-reported outcome measures for use in myotonic dystrophy type 1 patients. Muscle Nerve. 2017;56:86-92.
10. Baldanzi S, Bevilacqua F, Lorio R, Volpi L, Simoncini C, Petrucci A, et al. Disease awareness in myotonic dystrophy type 1: an observational cross-sectional study. Orphanet J Rare Dis. 2016;11:34.
11. Ahlstrom G, Sjoden PO. Coping with illness-related problems and quality of life in adult individuals with muscular dystrophy. J Psychosom Res. 1996;41:365-76.
12. Geirdal AO, Lund-Petersen I, Heiberg A. Understanding the experience of myotonic dystrophy. Mixed method study. J Genet Couns. 2015;24:169-78.
13. Fujino H, Saito T, Takahashi MP, Takada H, Nakayama T, Ogata K, et al. Validation of the Individualized Neuromuscular Quality of Life in Japanese patients with myotonic dystrophy. Muscle Nerve. 2018.
14. Vincent KA, Carr AJ, Walburn J, Scott DL, Rose MR. Construction and validation of a quality of life questionnaire for neuromuscular disease (INQoL). Neurology. 2007;68:1051-7.
15. van Swieten JC, Koudstaal PJ, Visser MC, Schouten HJ, van Gijn J. Interobserver agreement for the assessment of handicap in stroke patients. Stroke. 1988;19:604-7.
16. Seesing FM, van Vught LE, Rose MR, Drost G, van Engelen BG, van der Wilt GJ. The individualized neuromuscular quality of life questionnaire: cultural translation and psychometric validation for the Dutch population. Muscle Nerve. 2015;51:496-500.
17. Laberge L, Mathieu J, Auclair J, Gagnon E, Noreau L, Gagnon C. Clinical, psychosocial, and central correlates of quality of life in myotonic dystrophy type 1 patients. Eur Neurol. 2013;70:308-15.
18. Rakocevic-Stojanovic V, Peric S, Madzarevic R, Dobricic V, Ralic V, Ilic V, et al. Significant impact of behavioral and cognitive impairment on quality of life in patients with myotonic dystrophy type 1. Clin Neurol Neurosurg. 2014;126:76-81.
19. Sansone VA, Panzeri M, Montanari M, Apolone G, Gandossini S, Rose MR, et al. Italian validation of INQoL, a quality of life questionnaire for adults with muscle diseases. Eur J Neurol. 2010;17:1178-87.
20. Heatwole C, Bode R, Johnson N, Quinn C, Martens W, McDermott MP, et al. Patient-reported impact of symptoms in myotonic dystrophy type 1 (PRISM-1). Neurology. 2012;79:348-57.
21. Sansone VA, Ricci C, Montanari M, Apolone G, Rose M, Meola G. Measuring quality of life impairment in skeletal muscle channelopathies. Eur J Neurol. 2012;19:1470-6.
22. Natterlund B, Gunnarsson LG, Ahlstrom G. Disability, coping and quality of life in individuals with muscular dystrophy: a prospective study over five years. Disabil Rehabil. 2000;22:776-85.
23. Peric S, Heatwole C, Durovic E, Kacar A, Nikolic A, Basta I, et al. Prospective measurement of quality of life in myotonic dystrophy type 1. Acta Neurol Scand. 2017;136:694-7.
24. Peric S, Vujnic M, Dobricic V, Marjanovic A, Basta I, Novakovic I, et al. Five-year study of quality of life in myotonic dystrophy. Acta Neurol Scand. 2016;134:346-51.
25. Sprangers MA, Schwartz CE. Integrating response shift into health-related quality of life research: a theoretical model. Soc Sci Med. 1999;48:1507-15.
26. Rose MR, Sadjadi R, Weinman J, Akhtar T, Pandya S, Kissel JT, et al. Role of disease severity, illness perceptions, and mood on quality of life in muscle disease. Muscle Nerve. 2012;46:351-9.
27. Walklet E, Muse K, Meyrick J, Moss T. Do psychosocial interventions improve quality of life and wellbeing in adults with neuromuscular disorders? A systematic review and narrative synthesis. J Neuromuscul Dis. 2016;3:347-62.
28. Graham CD, Kemp S, Radakovic R, Kapur N. Clinical neuropsychology in the management of myotonic dystrophy. Muscle Nerve. 2018;57:701-4.
29. Graham CD, Simmons Z, Stuart SR, Rose MR. The potential of psychological interventions to improve quality of life and mood in muscle disorders. Muscle Nerve. 2015;52:131-6.
30. van Engelen B. Cognitive behaviour therapy plus aerobic exercise training to increase activity in patients with myotonic dystrophy type 1 (DM1) compared to usual care (OPTIMISTIC): study protocol for randomised controlled trial. Trials. 2015;16:224.
31. Okkersen K, Jimenez-Moreno C, Wenninger S, Daidj F, Glennon J, Cumming S, et al. Cognitive behavioural therapy with optional graded exercise therapy in patients with severe fatigue with myotonic dystrophy type 1: a multicentre, single-blind, randomised trial. Lancet Neurol. 2018;17:671-80.
32. Gagnon C, Gallais B, Laberge L. Myotonic dystrophy type 1: reasons to be OPTIMISTIC. Lancet Neurol. 2018;17:652-3.
33. Gagnon C, Tremblay M, CoTe I, Heatwole C. French translation and cross-cultural adaptation of the Myotonic Dystrophy Health Index. Muscle Nerve. 2018;57:686-9.
34. Heatwole C, Bode R, Johnson N, Dekdebrun J, Dilek N, Heatwole M, et al. Myotonic Dystrophy Health Index: initial evaluation of a disease-specific outcome measure. Muscle Nerve. 2014;49:906-14.
35. Heatwole C, Bode R, Johnson NE, Dekdebrun J, Dilek N, Eichinger K, et al. Myotonic dystrophy health index: Correlations with clinical tests and patient function. Muscle Nerve. 2016;53:183-90.
36. Sansone VA, Lizio A, Greco L, Gragnano G, Zanolini A, Gualandris M, et al. The Myotonic Dystrophy Health Index: Italian validation of a disease-specific outcome measure. Neuromuscul Disord. 2017;27:1047-53.
37. Fujino H, Shingaki H, Suwazono S, Ueda Y, Wada C, Nakayama T, et al. Cognitive impairment and quality of life in patients with myotonic dystrophy type 1. Muscle Nerve. 2018;57:742-8.
38. Peric S, Rakocevic Stojanovic V, Mandic Stojmenovic G, Ilic V, Kovacevic M, Parojcic A, et al. Clusters of cognitive impairment among different phenotypes of myotonic dystrophy type 1 and type 2. Neurol Sci. 2017;38:415-23.