Cited by 295Multiple Sclerosis Research StudiesCancer survivorship and careHealth Systems, Economic Evaluations, Quality of Life

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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

Janssens, A. C. J. W., van Doorn, P. A., de Boer, J. B., van der Meché, F. G. A., Passchier, J., Hintzen, R. Q.·2003·Acta Neurologica Scandinavica

DOI 10.1034/j.1600-0404.2003.00166.x

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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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Development and validation of a patient self-assessed questionnaire on satisfaction with communication of the multiple sclerosis diagnosis
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“, 1999) and impaired quality of life (Janssens et al., 2003).”
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“The validity and the reliability of the SF-36 have been well established in subjects with MS (Drulovich et al., 2007; Janssens et al., 2003; Shavaryn et al., 2002; Wynia et al., 2008).”
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“In our study, the mean HADS depression score was higher than a similar study (6.45 vs. 3.8, respectively) (Janssens et al., 2003).”
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“The SF-36 consists of four physical health domains and four mental health domains and has been used before in MS patients [17,18].”
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“Dabei zeigte sich im SF-36 bei den Patienten eine signifikante Korrelation zum EDSS, unauffällig zeigte er sich bei den Partnern im Vergleich zur Allgemeinbevölkerung.”
BackgroundInfluential
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Association of acute stress with multiple sclerosis onset and relapse in Saudi Arabia
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Patient information on cognitive symptoms in multiple sclerosis – acceptability in relation to disease duration
Heesen, C., Segal, J., Reich, C., Hämäläinen, P. I., Broemel, F., Niemann, S., Simon, U. A., Gross, R., & Kasper, J. (2006) · Acta Neurologica Scandinavica · doi:10.1111/j.1600-0404.2006.00630.x · Cited by 12
“Depression and anxieties are common at this stage among patients and their relatives (12).”
Background
Couples’ experiences of coping with Multiple Sclerosis: a qualitative systematic review and metasynthesis
Carberry, S., Conaill, S. M., & Fortune, D. G. (2024) · Disability and Rehabilitation · doi:10.1080/09638288.2024.2361804 · Cited by 12
“In the context of MS, couples face several unique challenges given the unpredictable nature of MS symptom exacerbation, uncertainty in disease prognosis and variability in symptoms [13, 20].”
A 12-month prospective, observational study evaluating the impact of disease-modifying treatment on emotional burden in recently-diagnosed multiple sclerosis patients: The POSIDONIA study
Montanari, E., Rottoli, M., Maimone, D., Confalonieri, P. A., Plewnia, K., Frigo, M., Francia, A., Pala, A., Losignore, N. A., Ragonese, P., et al. (2016) · Journal of the Neurological Sciences · doi:10.1016/j.jns.2016.02.047 · Cited by 11
“Although depression and anxiety tend to worsen as physical disability increases [12], psychiatric comorbidities such as depression and anxiety are frequently present at the time of MS diagnosis [2,3,8,13].”
Background
Social cognitive correlates of physical activity among persons with multiple sclerosis: Influence of depressive symptoms
Ensari, I., Kinnett-Hopkins, D., & Motl, R. W. (2017) · Disability and health journal · doi:10.1016/j.dhjo.2017.03.006 · Cited by 11
No impact of adult attachment and temperament on clinical variability in patients with clinically isolated syndrome and early multiple sclerosis
Fazekas, C., Khalil, M., Enzinger, C., Matzer, F., Fuchs, S., & Fazekas, F. (2012) · Clinical Neurology and Neurosurgery · doi:10.1016/j.clineuro.2012.05.022 · Cited by 11
Social Identity in People with Multiple Sclerosis: An Examination of Family Identity and Mood.
Barker, A., Lincoln, N., Hunt, N., & das Nair, R. (2017) · International Journal of MS Care · doi:10.7224/1537-2073.2016-074 · Cited by 11
Use of Rasch analysis to refine a patient-reported questionnaire on satisfaction with communication of the multiple sclerosis diagnosis
Solari, A., Grzeda, M. T., Giordano, A., Mattarozzi, K., D’Alessandro, R., Simone, A. M., Tesio, L., & on behalf of the SIMS-Trial, S.-P. A. A. S. (2014) · Multiple Sclerosis Journal · doi:10.1177/1352458513518261 · Cited by 10
Psychosocial Impact of Multiple Sclerosis on Couples: Relationship Between Anxiety, Depression, and Stress Communication of Both Partners
Busch, A.-K., & Fringer, A. (2022) · Journal of Primary Care & Community Health · doi:10.1177/21501319221119142 · Cited by 10
“27 The total sum of the point values per subscale was then assigned to its appropriate diagnostic group “unremarkable” (≤7), “borderline” (8-10), and “conspicuous” (≥11).”
Method
A qualitative exploration of barriers and facilitators to coping experienced by couples when one has multiple sclerosis
Boland, P., Levack, W., Hudson, S., & Bell, E. M. (2018) · International Journal of Therapy and Rehabilitation · doi:10.12968/ijtr.2018.25.5.240 · Cited by 10
The Development and Psychometric Validation of the Brief Disability-Related Stress Scale in Individuals With Multiple Sclerosis
Lee, B., & Chan, F. H. (2022) · Rehabilitation Counseling Bulletin · doi:10.1177/00343552221087173 · Cited by 10
“People with MS can experience stress stemming from disruptions in daily life, family, social, and vocational aspects, leading to reduced well-being (Janssens et al., 2003).”
Background
A short and validated multiple sclerosis‐specific health‐related quality of life measurement for routine medical practice
Devy, R., Lehert, P., Varlan, E., Genty, M., & Edan, G. (2013) · European Journal of Neurology · doi:10.1111/ene.12107 · Cited by 10
Anxiety and social activities in multiple sclerosis patients
Leonavičius, R., & Adomaitienė, V. (2012) · Open Medicine · doi:10.2478/s11536-012-0072-2 · Cited by 9
Assessment of computer adaptive testing version of the Neuro-QOL for people with multiple sclerosis
Healy, B. C., Zurawski, J. D., Gonzalez, C. T., Chitnis, T., Weiner, H. L., & Glanz, B. I. (2018) · Multiple Sclerosis Journal · doi:10.1177/1352458518810159 · Cited by 9
What Would You Say? Expressing the Difficulties of Living With Multiple Sclerosis
Reade, J. W., White, M., White, C., & Russell, C. S. (2012) · Journal of Neuroscience Nursing · doi:10.1097/jnn.0b013e31823ae471 · Cited by 11
“For example, levels of illness-related helplessness showed significant differences among cope 1 and cope 2 categories, which are differentiated by high or low QOS, but maintained the same level of DSLs. QOL and life satisfaction was highest for cope 1 and cope 3, which both reported high QOS.”
BackgroundInfluential
Effect of royal jelly capsule on quality of life of patients with multiple sclerosis: A double-blind randomized controlled clinical trial
Oshvandi, K., Aghamohammadi, M., Kazemi, F., Masoumi, S. Z., Mazdeh, M., & Vardanjani, M. M. (2020) · Iranian Red Crescent Medical Journal · doi:10.32592/ircmj.2020.22.10.74 · Cited by 9
“Several studies comparing the life quality of these patients and those with other chronic diseases, such as epilepsy, diabetes, rheumatoid arthritis, and inflammatory bowel disease, demonstrated that patients with MS had significantly lower quality of life (5, 6).”
Background
Depression and Anxiety in Association with Polypharmacy in Patients with Multiple Sclerosis
Baldt, J., Frahm, N., Hecker, M., Streckenbach, B., Langhorst, S. E., Mashhadiakbar, P., Burian, K., Meißner, J., Heidler, F., Richter, J., et al. (2023) · Journal of Clinical Medicine · doi:10.3390/jcm12165379 · Cited by 11
“of 101 newly diagnosed MS patients and their partners, there was a higher level of anxiety measured by the HADS-A in patients with more functional limitations [52].”
Background
Cognitive predictors of depression and anxiety in individuals with newly diagnosed Multiple Sclerosis
Güner, M. C., Yazar, M. S., & Meterelliyoz, K. Ş. (2020) · The European Journal of Psychiatry · doi:10.1016/j.ejpsy.2020.06.004 · Cited by 8
Assessment and Management of Cognitive and Psychosocial Difficulties for People with Multiple Sclerosis in Ireland: A National Survey of Clinical Practice
Hynes, S. M., O’Keeffe, F. M., Bane, E. M., Oglesby, M. H., Dwyer, C. P., Joyce, R. A., & Klein, O. A. (2022) · International Journal of Clinical Practice · doi:10.1155/2022/3232076 · Cited by 8
“Anxiety is also commonly reported in people with MS, with prevalence rates reported between 22% and 41% [26, 28].”
Depressive symptomology in multiple sclerosis: Disability, cardiorespiratory fitness and heart rate variability
Ensari, I., Pilutti, L. A., & Motl, R. W. (2017) · Acta Neurologica Scandinavica · doi:10.1111/ane.12748 · Cited by 9
Dialectical Behavior Group Therapy is Feasible and Reduces Emotional Dysfunction in Multiple Sclerosis
Blair, M., Ferreria, G., Gill, S., King, R., Hanna, J. A., Deluca, D., Ekblad, A., Bowman, D., Rau, J., Smolewska, K., et al. (2017) · International journal of group psychotherapy · doi:10.1080/00207284.2016.1260457 · Cited by 4
Comparison of the effectiveness of a tailored cognitive behavioural therapy with a supportive listening intervention for depression in those newly diagnosed with multiple sclerosis (the ACTION-MS trial): protocol of an assessor-blinded, active comparator, randomised controlled trial
Kiropoulos, L., Kilpatrick, T., Kalincek, T., Cherulov, L., Mcdonald, E., Wijeratne, T., Threader, J., Rozenblat, V., Simpson-O’Brien, N., van der Walt, A., et al. (2020) · Trials · doi:10.1186/s13063-019-4018-8 · Cited by 8
Living with a chronic illness as a challenge to psychological development: The role of personal identity, sense of coherence and perceived self-efficacy
Bonino, S., Calandri, E., & Cattelino, E. (2025) · Social Sciences & Humanities Open · doi:10.1016/j.ssaho.2025.101620 · Cited by 7
“Immediately after diagnosis, the reactions described are shock - with disbelief, rebellion and denial (Lacroix & Assal, 2005), anxiety and distress (Giordano et al., 2011; Janssens et al., 2003), avoidance (Possa et al., 2017).”
Lifestyle intervention improves cognition and quality of life in persons with early Multiple Sclerosis
Giesser, B. S., Rapozo, M. K., Glatt, R. M., Patis, C., Panos, S. E., Merrill, D. A., & Siddarth, P. (2024) · Multiple Sclerosis and Related Disorders · doi:10.1016/j.msard.2024.105897 · Cited by 8
Role of Vitamin D in Multiple Sclerosis: Implications for Disease Management
van der Mei, I. A. F., Simpson, S., Knippenberg, S. A. M., Winzenberg, T. M., & Taylor, B. V. (2011) · Neurodegenerative Disease Management · doi:10.2217/nmt.11.59 · Cited by 7
La maternità in donne con Sclerosi Multipla. Una ricerca esplorativa sulle possibili dimensioni di benessere nella malattia
Carlino, M., & Margherita, G. (2016) · PSICOLOGIA DELLA SALUTE · doi:10.3280/pds2016-003001 · Cited by 7
Assessment of factors associated with depression and anxiety among pwMS in Saudi Arabia
AlSaeed, S., Alkhawajah, N. M., Ayyash, M., Aljarallah, S., Alarieh, R., & Abushaheen, A. (2021) · BMC Neurology · doi:10.1186/s12883-022-02632-2 · Cited by 7
“Meanwhile, participants were more likely to anxious rather than being depressed, which is consistent with some previous research [9, 10] but not others [8, 41, 42].”
Result
Normative data for the Hospital Anxiety and Depression Scales (HADS) in multiple sclerosis
Atkins, L., Newby, G., & Pimm, J. (2012) · Social Care and Neurodisability · doi:10.1108/20420911211286579 · Cited by 7
Adjustment to multiple sclerosis and identity satisfaction among newly diagnosed women: what role does motherhood play?
Graziano, F., Calandri, E., Borghi, M., & Bonino, S. (2019) · Women & Health · doi:10.1080/03630242.2019.1626789 · Cited by 7
“Although physical difficulties are generally limited in the first three years after the diagnosis, patients have reported experiencing psychological distress and anxiety (Giordano et al. 2011; Janssen et al. 2003).”
Background
Multiple Sclerosis
Pakenham, K. I. (2012) · Oxford University Press eBooks · doi:10.1093/oxfordhb/9780199733989.013.0012 · Cited by 7
Illness Onset as Status Passage for People with Multiple Sclerosis (Ms)
Vickers, M. H. (2010) · Journal of Health and Human Services Administration · doi:10.1177/107937391003300204 · Cited by 7
“…for people with an onset of MS. MS is a disease that can substantially interfere with daily routines, activities, family, social and working lives, as well as the emotional well-being and quality of life of those impacted (Janssens, van Doorn, de Boer, van der Meche, Passchier & Hintzen, 2003).”
BackgroundInfluential
Lebensqualität bei Multipler Sklerose: Messinstrumente, Bedeutung, Probleme und Perspektiven
Pöllmann, W., Busch, C., & Voltz, R. (2005) · Der Nervenarzt · Cited by 7
Chronic sorrow and quality of life in patients with multiple sclerosis
Isaksson, A. (2007) · KTH Publication Database DiVA (KTH Royal Institute of Technology) · Cited by 7
The application of Kubler-Ross model in Newly Diagnosed Patients with Relapsing-Remitting Multiple Sclerosis
Maniscalco, G. T., Ziello, A. R., Panetta, V., Guarcello, G., & Improta, G. (2019) · Archives of Depression and Anxiety · doi:10.17352/2455-5460.000041 · Cited by 6
“Anxiety, stress and depression symptoms are frequent [5-8] and they may be severe enough to interfere with their daily life [9-10] and the course of the disease [11].”
Background
Acceptance-based telephone support around the time of transition to secondary progressive multiple sclerosis: A feasibility randomised controlled trial
Meek, C., Moghaddam, N. G., Evangelou, N., Oates, L. L., Topcu, G., Allen, C. M., & das Nair, R. (2021) · Journal of Contextual Behavioral Science · doi:10.1016/j.jcbs.2021.07.001 · Cited by 9
Psychometric Properties of the Persian Version of the PARADISE-24 Questionnaire
Azimi, A., Doosti, R., Samani, S. M. V., Roostaei, B., Gashti, S. H., Navardi, S., & Ghajarzadeh, M. (2021) · International Journal of Preventive Medicine · doi:10.4103/ijpvm.ijpvm_300_19 · Cited by 6
“One of the psychiatric comorbidities in MS cases which interacts with quality of life, clinical manifestations, and overall well‐being, is anxiety.[22] Location of the plaques, disease course, and duration are considered as possible explanations for MS‐related anxiety.”
Background
A proposed model for evaluating the impact of participating in trauma-focused research
Collings, S. J. (2018) · South African Journal of Psychology · doi:10.1177/0081246318789537 · Cited by 6
Psychiatric Disorders, Stress, and Their Treatment Among People with Multiple Sclerosis
Mohr, D. C. (2011) · Springer eBooks · doi:10.1007/978-1-4419-0029-6_8 · Cited by 6
“Estimates of prevalence rates range from 19 to 90% (Jose Sa, 2008), although most point prevalence rates for a clinically significant level of symptoms are in the 25–41% range (Feinstein, O’Connor, Gray, & Feinstein, 1999; Janssens et al., 2003; Zorzon et al., 2001).”
Background
Quality of life in multiple sclerosis patients: impact of depression and physical limitations?
Koçer, E., Koçer, A., Yaman, M., Eryilmaz, M., Özdem, Ş., & Boru, L. (2011) · Journal of Mood Disorders · doi:10.5455/jmood.20110419054303 · Cited by 6
Development and initial validation of the Perceptions of Parental Illness Questionnaire
Bogosian, A., Moss-Morris, R. E., Bishop, F. L., & Hadwin, J. A. (2013) · Journal of Health Psychology · doi:10.1177/1359105313482164 · Cited by 6
“In addition to physical symptoms, people with MS are at increased risk of developing depression (Feinstein, 2004) and anxiety (Janssens et al., 2003).”

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)
ORCID: Janssens, A. C. J. W.
Passchier, J.
Hintzen, R. Q.
Venue: Acta Neurologica Scandinavica
Publisher: Hindawi Limited
Published: 2003-09-12
Volume: 108
Issue: 6
Pages: 389-395
ISSN: 0001-6314 (ISSN-L)
DOI: 10.1034/j.1600-0404.2003.00166.x
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: doi.wiley.com/10.1002/tdm_license_1.1 (tdm)
onlinelibrary.wiley.com/termsAndConditions#vor (vor)
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 › Clinical Neurology › 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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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

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