Impact of recently diagnosed multiple sclerosis on quality of life, anxiety, depression and distress of patients and partners: Quality of life and emotional well-being in MS
Abstract
OBJECTIVES: Studies demonstrating reduced quality of life and psychological well-being in multiple sclerosis (MS) have typically investigated patients within more advanced stages of disease. The aim of the present paper was to evaluate the emotional burden and quality of life of recently diagnosed MS patients and their partners. METHODS: Data on health-related quality of life (SF-36), anxiety and depression (Hospital Anxiety and Depression Scale) and disease-related distress (Impact of Event Scale) were obtained in 101 patients and their partners (n=78). RESULTS: On average 8 months after diagnosis (range 0-24 months), 34% of the patients and 40% of the partners had clinically high levels of anxiety, and 36% of the patients and 24% of the partners had levels of severe distress. Scores of anxiety, depression and distress were higher in patients with more functional limitations (Expanded Disability Status Scale=3.0). Quality of life was significantly poorer in patients compared with controls, particularly among those with higher disability. CONCLUSIONS: Both patients and their partners demonstrated high levels of anxiety and distress in the early period after the diagnosis. These findings indicate careful attention by health care professionals to identify those who may benefit from further psychological support.
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Up to 36% of MS patients continue to have high levels of depressive and anxiety symptoms in the first years after diagnosis.
“Two studies suggest that up to 36% of MS patients continue to have high levels of depressive and anxiety symptoms in the first years after diagnosis [3, 11].”
The time around receiving a MS diagnosis is when individuals experience significantly higher levels of depression and anxiety.
“Firstly, the time around receiving a MS diagnosis has been shown to be when individuals experience significantly higher levels of depression and anxiety [2, 4, 11, 16].”
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ResultIllness perception and health-related quality of life in multiple sclerosis.
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“Furthermore, psychological well-being and quality of life were not related to the level of functional limitations of the patient [24].”
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“Studies carried out by Janssens et al.(8) and Delgado-Mendilívar et al.”
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“The results indicated that poor sleep is independently associated with female gender, use of immunotherapy and the high psychological burden of MS.7 Neau et al reported associations of sleep disorders with disability, depression, anxiety, pain, spasticity and bladder dysfunction in a univariate analysis, although in a…”
BackgroundPhysical Activity and Fatigue in Breast Cancer and Multiple Sclerosis: Psychosocial Mechanisms
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“previously been used in studies of patients with MS (51) and has established”
MethodPathogenic Mechanisms of Depression in Multiple Sclerosis
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Family caregiver quality of life in multiple sclerosis among Kuwaitis: a controlled study
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“In line with previous reports, however, the caregivers had significantly lower scores than the general population control group in most domains [5,6,13,26,27].”
ResultPhysical activity, disability, and mood in the early stage of multiple sclerosis.
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“Thus, it is not surprising that QoL is significantly lower in individuals with MS relative to healthy controls, the general population, and persons with other chronic diseases (Beiske et al., 2007; Janssens et al., 2003; Kobelt et al., 2006; Putzki et al., 2009; Ruet et al., 2012; Wu et al., 2007).”
BackgroundThe needs of carers of people with multiple sclerosis: a literature review
Corry, M., & While, A. (2008) · Scandinavian Journal of Caring Sciences · doi:10.1111/j.1471-6712.2008.00645.x · Cited by 59 · see citing works
Crupi, R., Cambiaghi, M., Spatz, L. A., Hen, R., Thorn, M., Friedman, E., Vita, G., & Battaglia, F. (2010) · Biological Psychiatry · doi:10.1016/j.biopsych.2009.12.008 · Cited by 58 · see citing works
Carletto, S., Borghi, M., Bertino, G., Oliva, F., Cavallo, M., Hofmann, A., Zennaro, A., Malucchi, S., & Ostacoli, L. (2016) · Frontiers in Psychology · doi:10.3389/fpsyg.2016.00526 · Cited by 61 · see citing works
Health-related quality of life in secondary progressive multiple sclerosis
Beiske, A. G., Næss, H., Aarseth, J. H., Andersen, O., Elovaara, I., Färkkilä, M. A., Hansen, H. J., Mellgren, S. I., Sandberg‐Wollheim, M., Sørensen, P. S., et al. (2007) · Multiple Sclerosis Journal · doi:10.1177/13524585070130030101 · Cited by 57 · see citing works
Anxiety, depression and fatigue at 5‐year review following CNS demyelination
Simpson, S., Tan, H., Otáhal, P., Taylor, B. V., Ponsonby, A., Lucas, R. M., Blizzard, L., Valery, P. C., Lechner‐Scott, J., Shaw, C., et al. (2016) · Acta Neurologica Scandinavica · doi:10.1111/ane.12554 · Cited by 57 · see citing works
“They are also in line with a Dutch study of 101 patients assessed one year after diagnosis (anxiety 34%, depression 36% using the HADS) (27) and a European study of 197 potential MS cases, 120 of whom were eventually diagnosed as CDMS (anxiety 43%, depression 11% using the HADS Instrument) (28) and a Swiss study of 10…”
ResultSelf-reported burden among caregivers of patients with multiple sclerosis.
Gupta, S., Goren, A., Phillips, A., & Stewart, M. (2012) · International Journal of MS Care · doi:10.7224/1537-2073-14.4.179 · Cited by 60 · see citing works
Dennison, L., Moss-Morris, R., Silber, E., Galea, I., & Chalder, T. (2010) · Journal of Psychosomatic Research · doi:10.1016/j.jpsychores.2010.04.009 · Cited by 74 · see citing works
“Research demonstrates elevated levels of depression and psychological distress [5,6], anxiety [7], relationship and social dysfunction [8,9], and reduced quality of life [6,10] in PwMS.”
BackgroundHealth-Related Quality of Life is Reduced in Pediatric Multiple Sclerosis
Mowry, E. M., Julian, L. J., Im-Wang, S., Chabas, D., Galvin, A. J., Strober, J. B., & Waubant, E. L. (2010) · Pediatric Neurology · doi:10.1016/j.pediatrneurol.2010.03.007 · Cited by 55 · see citing works
Calandri, E., Graziano, F., Borghi, M., & Bonino, S. (2016) · Journal of Happiness Studies · doi:10.1007/s10902-016-9818-x · Cited by 55 · see citing works
Valentine, T. R., Alschuler, K. N., Ehde, D. M., & Kratz, A. L. (2022) · Multiple Sclerosis Journal · doi:10.1177/13524585211023352 · Cited by 55 · see citing works
Manacorda, T., Bandiera, P., Terzuoli, F., Ponzio, M., Brichetto, G., Zaratin, P., Bezzini, D., & Battaglia, M. A. (2020) · Journal of Health Services Research & Policy · doi:10.1177/1355819620975069 · Cited by 54 · see citing works
Akkuş, Y. (2010) · Disability and Rehabilitation · doi:10.3109/09638288.2010.490866 · Cited by 54 · see citing works
Chalk, H. M. (2007) · Psychology Health & Medicine · doi:10.1080/13548500701244965 · Cited by 53 · see citing works
“MS patients also experience higher levels of anxiety and lower life satisfaction than healthy controls (Janssens et al., 2003; McCabe, 2005).”
BackgroundMemory performance in multiple sclerosis patients correlates with central brain atrophy
Hildebrandt, H., Hahn, H. K., Kraus, J., Schulte-Herbrüggen, A., Schwarze, B., & Schwendemann, G. (2006) · Multiple Sclerosis · doi:10.1191/1352458506ms1286oa · Cited by 57 · see citing works
Calandri, E., Graziano, F., Borghi, M., & Bonino, S. (2017) · Disability and Rehabilitation · doi:10.1080/09638288.2016.1198430 · Cited by 49 · see citing works
Kiropoulos, L. A., Kilpatrick, T., Holmes, A., & Threader, J. (2016) · BMC Psychiatry · doi:10.1186/s12888-016-1152-7 · Cited by 50 · see citing works
“Firstly, the time around receiving a MS diagnosis has been shown to be when individuals experience significantly higher levels of depression and anxiety [2, 4, 11, 16].”
BackgroundThe family of the multiple sclerosis patient: A psychosocial perspective
Kouzoupis, A. B., Paparrigopoulos, T. J., Soldatos, M., & Papadimitriou, G. N. (2010) · International Review of Psychiatry · doi:10.3109/09540261003589588 · Cited by 49 · see citing works
“…well-being, because findings indicate that MS caregivers experience four times as many stress symptoms compared to the general population (Janssens et al., 2003), and that specific neuropsychiatric symptoms of the MS patient may be connected to the caregiver’s distress (Sherman et al.,…”
BackgroundAskari, F., Ghajarzadeh, M., Mohammadifar, M., Azimi, A., Sahraian, M. A., & Owji, M. (2014) · PubMed · Cited by 49 · see citing works
Forman, A., & Lincoln, N. (2010) · Clinical Rehabilitation · doi:10.1177/0269215509343492 · Cited by 54 · see citing works
Predictors of anxiety in multiple sclerosis.
Hartoonian, N., Terrill, A. L., Beier, M. L., Turner, A. P., Day, M. A., & Alschuler, K. N. (2014) · Rehabilitation Psychology · doi:10.1037/rep0000019 · Cited by 47 · see citing works
“Perhaps the most probable explanation for these unexpected findings are (a) while the nature of MS (e.g., uncertainty and uncontrollability; Janssens et al., 2003; Kroencke, Denney, & Lynch, 2001) may contribute to anxiety, it may not impact variability in anxiety symptom severity over time; and/or…”
Quality of life predictors in physically disabled people
Hosseini, S., Rajati, F., Ashtarian, H., Salari, N., Ghanbari, M., & Naghibifar, Z. (2018) · Journal of Education and Health Promotion · doi:10.4103/jehp.jehp_115_17 · Cited by 46 · see citing works
“Hospital Anxiety and Depression scale This self‐report scale comprised of 14 items in two subscales of anxiety (A) and depression (D) with seven items in each subscale which developed for measuring the existence of these disorders.[11] Each item is scored on a 4‐point Likert scale ranging from 0 to 3; therefore, the s…”
BackgroundThe impact of resilience on healthy aging with multiple sclerosis
Ploughman, M., Downer, M. B., Pretty, R. W., Wallack, E. M., Amirkhanian, S., & Kirkland, M. C. (2020) · Quality of Life Research · doi:10.1007/s11136-020-02521-6 · Cited by 43 · see citing works
“In a study of 88 MS patients [61] with varying levels of disability (mean age 46 ± 12 years), 34% were case level for anxiety, similar to a sample of 101 newly diagnosed MS patients [62] in which 34% were also classified as having high levels of anxiety.”
ResultCalandri, E., Graziano, F., Borghi, M., & Bonino, S. (2017) · Clinical Rehabilitation · doi:10.1177/0269215517695374 · Cited by 42 · see citing works
The impact of disability, fatigue and sleep quality on the quality of life in multiple sclerosis
Ghaem, H., & Borhani‐Haghighi, A. (2008) · Annals of Indian Academy of Neurology · doi:10.4103/0972-2327.44559 · Cited by 42 · see citing works
“This Þ nding is supported by some other researchers.[12,15,16,18,19,41]”
ResultThe Impact of Disability on Depression Among Individuals With COPD
Katz, P., Julian, L. J., Omachi, T. A., Gregorich, S. E., Eisner, M. D., Yelin, E. H., & Blanc, P. D. (2009) · CHEST Journal · doi:10.1378/chest.09-1939 · Cited by 44 · see citing works
Suh, Y., Weikert, M., Dlugonski, D., Sandroff, B. M., & Motl, R. W. (2011) · Psychology Health & Medicine · doi:10.1080/13548506.2011.601747 · Cited by 40 · see citing works
“Physical activity and social support have been inversely associated with mobility disability in people with MS (Motl, McAuley, & Snook, 2007; Phillips & Stuifbergen, 2010) and mobility disability has been associated with depressive symptoms (Chwastiak et al., 2002; Janssens et al., 2003; Lynch, Kroencke, & Denney, 200…”
BackgroundMethodHow do adolescents adjust to their parent's multiple sclerosis?: An interview study
Bogosian, A., Moss-Morris, R. E., Bishop, F. L., & Hadwin, J. A. (2010) · British Journal of Health Psychology · doi:10.1348/135910710x521492 · Cited by 38 · see citing works
Patients’ experiences of adapting to multiple sclerosis: a qualitative study
Ghafari, S., Fallahi‐Khoshknab, M., Nourozi, K., & Mohammadi, E. (2015) · Contemporary Nurse · doi:10.1080/10376178.2015.1010252 · Cited by 38 · see citing works
Neven, A., Janssens, D., Alders, G., Wets, G., Wijmeersch, B. V., & Feys, P. (2013) · Disability and Rehabilitation · doi:10.3109/09638288.2012.751137 · Cited by 38 · see citing works
“the results of especially the mild MS subgroup, as anxiety feelings were greatest in this subgroup, in line with the literature [37].”
ResultKhatibi, A., Moradi, N., Rahbari, N., Salehi, T., & Dehghani, M. (2020) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2020.00226 · Cited by 36 · see citing works
“Psychological factors play a crucial role in the quality of life in patients with MS especially due to the chronic nature of the disease (26).”
BackgroundDavis, B. E., Lakin, L., Binns, C. C., Currie, K. M., & Rensel, M. R. (2021) · Neurology and Therapy · doi:10.1007/s40120-021-00240-9 · Cited by 37 · see citing works
“A decline in mental health has been associated with receipt of the MS diagnosis [52].”
BackgroundBahrani, S., Zargar, F., Yousefipour, G., & Akbari, H. (2017) · Iranian Red Crescent Medical Journal · doi:10.5812/ircmj.44566 · Cited by 36 · see citing works
“In fact, 48% of patients with MS experience certain levels of anxiety, depression, and distress in the first year after diagnosis and need clinical attention (9).”
BackgroundThe first year after diagnosis: psychological impact on people with multiple sclerosis
Possa, M. F., Minacapelli, E., Canale, S., Comı, G., Martinelli, V., & Falautano, M. (2017) · Psychology Health & Medicine · doi:10.1080/13548506.2016.1274043 · Cited by 36 · see citing works
“In spite of previous data (Janssens et al., 2003; Simioni et al., 2007; Suh et al., 2010) anxious symptomatology is lower for several reasons.”
BackgroundPregnancy in multiple sclerosis: clinical and self-report scales
Neuteboom, R. F., Janssens, A. C. J. W., Siepman, T. A. M., Hoppenbrouwers, I. A., Ketelslegers, I. A., Jafari, N., Steegers, E. A. P., de Groot, C. J. M., & Hintzen, R. Q. (2011) · Journal of Neurology · doi:10.1007/s00415-011-6186-7 · Cited by 36 · see citing works
“health domains and four mental health domains and has been used before in MS patients [10–12].”
MethodSelf-citationFamily Planning Decision Making in People With Multiple Sclerosis
Bonavita, S., Lavorgna, L., Worton, H., Russell, S., & Jack, D. L. (2021) · Frontiers in Neurology · doi:10.3389/fneur.2021.620772 · Cited by 35 · see citing works
“It has been suggested that several MS-related factors may influence family planning decision making, including the impact of MS on the patient’s quality of life (16), or treatment options before and during pregnancy (17).”
BackgroundThe presence and meaning of chronic sorrow in patients with multiple sclerosis.
Isaksson, A.-K., Gunnarsson, L., & Ahlström, G. (2007) · Journal of Clinical Nursing · doi:10.1111/j.1365-2702.2007.01995.x · Cited by 39 · see citing works
Brenner, P., Granqvist, M., Königsson, J., Nimer, F. A., Piehl, F., & Jokinen, J. (2018) · Psychoneuroendocrinology · doi:10.1016/j.psyneuen.2018.01.002 · Cited by 34 · see citing works
Are social comparisons of homes and cars related to psychosocial health?
Ellaway, A. (2004) · International Journal of Epidemiology · doi:10.1093/ije/dyh197 · Cited by 34 · see citing works
Prokopova, B., Hlaváčová, N., Vlček, M., Penesová, A., Grunnerova, L., Garafová, A., Turčáni, P., Kollár, B., & Ježová, D. (2016) · Journal of Neuroimmunology · doi:10.1016/j.jneuroim.2016.11.007 · Cited by 33 · see citing works
“In more advanced stages, the disease interferes with common daily activities and gradually reduces quality of life (Janssens et al., 2003).”
BackgroundEffective communication at the point of multiple sclerosis diagnosis
Solari, A. (2014) · Multiple Sclerosis Journal · doi:10.1177/1352458514523061 · Cited by 33 · see citing works
A Pilot Study on Factors Involved with Work Participation in the Early Stages of Multiple Sclerosis
van der Hiele, K., Middelkoop, H. A. M., Ruimschotel, R. P., Kamminga, N. G. A., & Visser, L. H. (2014) · PLoS ONE · doi:10.1371/journal.pone.0105673 · Cited by 31 · see citing works
“Patients with a recent diagnosis of MS report a substantially lower health-related quality of life than healthy controls [5].”
BackgroundPhillips, L. J., & Stuifbergen, A. M. (2010) · International Journal of Rehabilitation Research · doi:10.1097/mrr.0b013e3283310cce · Cited by 31 · see citing works
“Anxiety and depression have been associated with greater functional limitations, work disability, and activity-related discomfort (Kurtze et al., 1999; Janssen et al., 2003; Jones et al., 2008).”
BackgroundPugliatti, M., Riise, T., Nortvedt, M. W., Carpentras, G., Sotgiu, M. A., Sotgiu, S., & Rosati, G. (2008) · Journal of Neurology · doi:10.1007/s00415-008-0543-1 · Cited by 31 · see citing works
“In agreement with other studies [9, 10 ], the self-perceived health status among our patients did not depend”
BackgroundResultInfluentialUnmet needs of caregivers of severely affected multiple sclerosis patients: A qualitative study
Golla, H., Mammeas, S., Galushko, M., Pfaff, H., & Voltz, R. (2015) · Palliative & Supportive Care · doi:10.1017/s1478951515000607 · Cited by 30 · see citing works
“Paying less attention to themselves (Gulick, 1998), while simultaneously suffering from increased physical (Buhse, 2008) and psychological burden (Janssens et al., 2003) and from impaired social life (Bogosian et al., 2009) is often the case for MS caregivers (Kouzoupis et al., 2010).”
BackgroundBarta, T., & Kiropoulos, L. A. (2022) · International Journal of Behavioral Medicine · doi:10.1007/s12529-022-10078-6 · Cited by 30 · see citing works
Feicke, J., Spörhase-Eichmann, U., Köhler, J., Busch, C., & Wirtz, M. A. (2014) · Patient Education and Counseling · doi:10.1016/j.pec.2014.09.005 · Cited by 30 · see citing works
- Authors
- Janssens, A. C. J. W., van Doorn, P. A., de Boer, J. B., van der Meché, F. G. A., Passchier, J., & Hintzen, R. Q.
- Affiliations
- Erasmus MC (NL)
- Venue
- Acta Neurologica Scandinavica
- Publisher
- Hindawi Limited
- Published
- 2003-09-12
- Volume
- 108
- Issue
- 6
- Pages
- 389-395
- ISSN
- 0001-6314 (ISSN-L)
- OpenAlex
- W2008654233
- Cited by
- 294
- References
- 30
- Citations by year
- 2026: 1 · 2025: 9 · 2024: 7 · 2023: 8 · 2022: 15 · 2021: 15 · 2020: 10 · 2019: 10 · 2018: 15 · 2017: 17 · 2016: 14 · 2015: 18 · 2014: 20 · 2013: 13 · 2012: 17
- FWCI
- 4.39
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- Locations
- Acta Neurologica Scandinavica (publishedVersion)
- PubMed (publishedVersion)
- EUR Research Repository (Erasmus University Rotterdam) (publishedVersion)
- EUR Research Repository (Erasmus University Rotterdam) (submittedVersion)
- Topics
- Health Sciences › Medicine › Pathology and Forensic Medicine › Multiple Sclerosis Research Studies
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Social Sciences › Economics, Econometrics and Finance › Economics and Econometrics › Health Systems, Economic Evaluations, Quality of Life
- Keywords
- multiple sclerosis, newly diagnosed patients, partners of patients, quality of life, anxiety, depression, psychological distress, emotional burden, disability severity, functional limitations, psychological support
- MeSH terms
- Adult, Anxiety, Data Collection, Depression, Female, Humans, Male, Multiple Sclerosis, Quality of Life, Stress, Psychological, Spouses
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