References
- Mackenzie IS, Morant SV, Bloomfield GA, et al. Incidence and prevalence of multiple sclerosis in the UK 1990–2010: a descriptive study in the General Practice Research Database. J Neurol Neurosurg Psychiatry. 2014;85(1):76–84.
- Lublin FD, Reingold SC, Cohen JA, et al. Defining the clinical course of multiple sclerosis: the 2013 revisions. Neurology. 2014;83(3):278–286.
- Koch M, Kingwell E, Rieckmann P, et al. The natural history of secondary progressive multiple sclerosis. J Neurol Neurosurg Psychiatry. 2010;81(9):1039–1043.
- Scalfari A, Neuhaus A, Daumer M, et al. Onset of secondary progressive phase and long-term evolution of multiple sclerosis. J Neurol Neurosurg Psychiatry. 2014;85(1):67–75.
- Katz Sand I, Krieger S, Farrell C, et al. Diagnostic uncertainty during the transition to secondary progressive multiple sclerosis. Mult Scler J. 2014;20(12):1654–1657.
- Wilkinson HR, das Nair R. The psychological impact of the unpredictability of multiple sclerosis: a qualitative literature meta-synthesis. Br J Neurosci Nurs. 2013;9(4):172–178.
- Edwards RG, Barlow JH, Turner AP. Experiences of diagnosis and treatment among people with multiple sclerosis. J Eval Clin Pract. 2008;14(3):460–464.
- Giordano A, Granella F, Lugaresi A, et al. Anxiety and depression in multiple sclerosis patients around diagnosis. J Neurol Sci. 2011;307(1-2):86–91.
- Deibel F, Edwards M, Edwards A. Patients’, carers’ and providers’ experiences and requirements for support in self-management of multiple sclerosis: a qualitative study. EJPCH. 2013;1(2):457–467.
- Fogarty E, Schmitz S, Tubridy N, et al. Comparative efficacy of disease-modifying therapies for patients with relapsing remitting multiple sclerosis: systematic review and network meta-analysis. Mult Scler Relat Disord. 2016;9:23–30.
- Coetzee T, Zaratin P, Gleason TL. Overcoming barriers in progressive multiple sclerosis research. Lancet Neurol. 2015;14(2):132–133.
- Davies F, Edwards A, Brain K, et al. You are just left to get on with it: qualitative study of patient and carer experiences of the transition to secondary progressive multiple sclerosis. BMJ Open. 2015;5(7):e007674–10.
- Thorne S, Con A, McGuinness L, et al. Health care communication issues in multiple sclerosis: an interpretive description. Qual Health Res. 2004;14(1):5–22.
- Fox RJ, Thompson A, Baker D, et al. Setting a research agenda for progressive multiple sclerosis: the International Collaborative on Progressive MS. Mult Scler. 2012;18(11):1534–1540.
- Lorefice L, Mura G, Coni G, et al. What do multiple sclerosis patients and their caregivers perceive as unmet needs? BMC Neurol. 2013;13(1):177.
- Koffman J, Gao W, Goddard C, et al. Progression, symptoms and psychosocial concerns among those severely affected by multiple sclerosis: a mixed-methods cross-sectional study of Black Caribbean and White British People. PLoS One. 2013;8(10):e75431.
- Boeije HR, Duijnstee MS, Grypdonck MH, et al. Encountering the downward phase: biographical work in people with multiple sclerosis living at home. Soc Sci Med. 2002;55(6):881–893.
- Chen H, Habermann B. Ready or not: Planning for health declines in couples with advanced multiple sclerosis. J Neurosci Nurs. 2013;45(1):38–43.
- Edmonds P, Vivat B, Burman R, et al. Fighting for everything’: service experiences of people severely affected by multiple sclerosis. Mult Scler. 2007;13(5):660–667.
- Jones KH, Ford DV, Jones PA, et al. A large-scale study of anxiety and depression in people with multiple sclerosis: a survey via the web portal of the UK MS register. PLoS One. 2012;7(7):e41910.
- Carta MG, Moro MF, Lorefice L, et al. Multiple sclerosis and bipolar disorders: the burden of comorbidity and its consequences on quality of life. J Affective Disord. 2014;167:192–197.
- Kobelt G, Berg J, Lindgren P, et al. Costs and quality of life of patients with multiple sclerosis in Europe. J Neurol Neurosurg Psychiatry. 2006;77(8):918–926.
- O’Loughlin E, Hourihan S, Chataway J, et al. The experience of transitioning from relapsing remitting to secondary progressive multiple sclerosis: views of patients and health professionals. Disabil Rehabil. 2017;39(18):1821–1828.
- Bogosian A, Morgan M, Bishop FL, et al. Adjustment modes in the trajectory of progressive multiple sclerosis: a qualitative study and conceptual model. Psychol Health. 2017;32(3):343–360.
- Lachal J, Revah-Levy A, Orri M, et al. Metasynthesis: an original method to synthesize qualitative literature in psychiatry. Front Psychiatry. 2017;8:269–269.
- Tong A, Flemming K, McInnes E, et al. Enhancing transparency in reporting the synthesis of qualitative research: ENTREQ. BMC Med Res Methodol. 2012;12(1):181.
- Malpass A, Shaw A, Sharp D, et al. Medication career” or “Moral career”? The two sides of managing antidepressants: a meta-ethnography of patients’ experience of antidepressants. Soc Sci Med. 2009;68(1):154–168.
- Noblit GW, Hare RD, Hare R. Meta-ethnography: synthesizing qualitative studies. Newbury Park (CA): Sage; 1988.
- Shaw RL. Conducting literature reviews. In: Forrester MA, editor. Doing qualitative research in psychology: a practical guide. London (UK): Sage; 2010. p. 39–56.
- Critical Appraisal Skills Programme [Internet]. Oxford: CASP; [cited 2018 Oct 26]. Available from: https://casp-uk.net/wp-content/uploads/2018/03/CASP-Qualitative-Checklist-2018_fillable_form.pdf.
- Dixon-Woods M, Shaw RL, Agarwal S, et al. The problem of appraising qualitative research. Qual Saf Health Care. 2004;13(3):223–225.
- Dixon-Woods M, Sutton A, Shaw R, et al. Appraising qualitative research for inclusion in systematic reviews: a quantitative and qualitative comparison of three methods. J Health Serv Res Policy. 2007;12(1):42–47.
- Britten N, Campbell R, Pope C, et al. Using meta ethnography to synthesise qualitative research: a worked example. J Health Serv Res Policy. 2002;7(4):209–215.
- Thorne S, Jensen L, Kearney MH, et al. Qualitative metasynthesis: reflections on methodological orientation and ideological agenda. Qual Health Res. 2004;14(10):1342–1365.
- Bogosian A, Morgan M, Moss-Morris R. Multiple challenges for people after transitioning to secondary progressive multiple sclerosis: a qualitative study. BMJ Open. 2019;9(3):e026421.
- Borreani C, on behalf of the PeNSAMI project, Bianchi E, Pietrolongo E, et al. Unmet needs of people with severe multiple sclerosis and their carers: qualitative findings for a home-based intervention. PLoS One. 2014;9(10):e109679.
- Dennison L, Yardley L, Devereux A, et al. Experiences of adjusting to early stage Multiple Sclerosis. J Health Psychol. 2011;16(3):478–488.
- Frost J, Grose J, Britten N. A qualitative investigation of lay perspectives of diagnosis and self-management strategies employed by people with progressive multiple sclerosis. Health (London). 2017;21(3):316–336.
- Giovannetti AM, Brambilla L, Torri Clerici V, et al. Difficulties in adjustment to multiple sclerosis: vulnerability and unpredictability of illness in the foreground. Disabil Rehabil. 2017;39(9):897–903.
- Koffman J, Goddard C, Gao W, et al. Exploring meanings of illness causation among those severely affected by multiple sclerosis: a comparative qualitative study of Black Caribbean and White British people. BMC Palliat Care. 2015;14(1):13.
- Lexell EM, Lund ML, Iwarsson S. Constantly changing lives: experiences of people with multiple sclerosis. Am J Occup Ther. 2009;63(6):772–781.
- Olsson M, Lexell J, Söderberg S. The meaning of women’s experiences of living with multiple sclerosis. Health Care Women Int. 2008;29(4):416–430.
- Orton S-M, Herrera BM, Yee IM, et al. Sex ratio of multiple sclerosis in Canada: a longitudinal study. Lancet Neurol. 2006;5(11):932–936.
- Matud MP. Gender differences in stress and coping styles. Pers Individual Differ. 2004;37(7):1401–1415.
- Moss-Morris R. Adjusting to chronic illness: time for a unified theory. Br J Health Psychol. 2013;18(4):681–686.
- Stroebe M, Schut H. The dual process model of coping with bereavement: rationale and description. Death Stud. 1999;23(3):197–224.
- Hofmann SG, Hay AC. Rethinking avoidance: toward a balanced approach to avoidance in treating anxiety disorders. J Anxiety Disord. 2018;55:14–21.
- Dennison L, Moss-Morris R, Chalder T. A review of psychological correlates of adjustment in patients with multiple sclerosis. Clin Psychol Rev. 2009;29(2):141–153.
- McCabe MP, McKern S, McDonald E. Coping and psychological adjustment among people with multiple sclerosis. J Psychosom Res. 2004;56(3):355–361.
- Hayes SC. Acceptance and commitment therapy, relational frame theory, and the third wave of behavioral and cognitive therapies. Behav Ther. 2004;35(4):639–665.
- Beck A, Rush A, Shaw B, et al. Cognitive treatment of depression: a treatment manual. New York (NY): Guilford; 1979.
- Kirkpatrick Pinson DM, Ottens AJ, Fisher TA. Women coping successfully with multiple sclerosis and the precursors of change. Qual Health Res. 2009;19(2):181–193.