Quality of life
Ploughman M, Austin MW, Murdoch M, et al. Factors influencing healthy aging with multiple sclerosis: a qualitative study. Disabil Rehabil. 2012; 34(1):26-33.
The purpose of this study was to describe the factors influencing healthy aging from the perspective of the older person with multiple sclerosis (MS) in order to build curricula for MS self-management programs.
Caminero A, Bartolomé M. Sleep disturbances in multiple sclerosis. J Neurol Sci. 2011; 309(1-2):86-91.
This paper reviews the most common sleep disorders seen in this disease, their prevalence, pathophysiology, clinical manifestations and current treatments. The authors believe that these disturbances should be a focal point in any multidisciplinary treatment for MS.
Fernández O, Baumstarck-Barrau K, Simeoni MC, et al. Patient characteristics and determinants of quality of life in an international population with multiple sclerosis: assessment using the MusiQoL and SF-36 questionnaires. . Mult Scler. 2011; 17(10):1238-49.
This study aimed to determine the clinical and sociodemographic factors affecting HRQoL in a large international study (1992 patients from 15 countries) using the MS International QoL (MusiQoL) questionnaire.
Benito-León J, Rivera-Navarro J, Guerrero AL, et al. The CAREQOL-MS was a useful instrument to measure caregiver quality of life in multiple sclerosis. J Clin Epidemiol. 2011;64(6):675-86.
The study aimed to develop and test the first specific instrument for assessing caregiver health-related quality of life (HRQOL) in multiple sclerosis (MS)(CAREQOL-MS).
Villani V, Prosperini L, Pozzilli C, et al. Quality of life of multiple sclerosis patients with comorbid migraine. Neurol Sci. 2011; 32 Suppl 1:S149-51.
The aim of the present study was to investigate the impact of comorbid migraine on quality of life of patients with multiple sclerosis. They conclude that investigating and treating migraine in MS patients might contribute to improve their quality of life.
Khan S, Game X, Kalsi V, et al. Long-term effect on quality of life of repeat detrusor injections of botulinum neurotoxin-A for detrusor overactivity in patients with multiple sclerosis. J Urol. 2011; 185(4):1344-9.
Repeated detrusor botulinum neurotoxin type A injections for refractory neurogenic detrusor overactivity in patients with multiple sclerosis have a consistent effect on bladder control, resulting in sustained improvement in quality of life.
Pluta-Fuerst A, Petrovic K, Berger T, et al. Patient-reported quality of life in multiple sclerosis differs between cultures and countries: a cross-sectional Austrian-German-Polish study. Mult Scler. 2011; 17(4):478-86.
Differences exist in the quality of life (QOL) of MS patients from Austria, Germany and Poland which seem to lie beyond the impact of disease severity. They appear to be related to culture or other country-specific factors, as country was an independent predictor of differently answered items of the FAMS and thus also of the whole FAMS. QOL instruments should consider this aspect to faithfully reflect subjective information such as patient-reported benefit of treatment in multinational clinical trials.
Liedström E, Isaksson AK, Ahlström G. Quality of life in spite of an unpredictable future: the next of kin of patients with multiple sclerosis. J Neurosci Nurs 2010; 42(6):331-41.
Forty-four next of kin were interviewed and thereafter answered the Subjective Quality of Life questionnaire. The study confirms that MS is a disease affecting the whole family, and the next of kin were living in uncertainty, facing an unpredictable future.
Kargiotis O, Paschali A, Messinis L, et al. Quality of life in multiple sclerosis: effects of current treatment options. Int Rev Psychiatry 2010; 22(1):67-82.
Current immunomodulatory interventions are shown to reduce the frequency of relapses and delay disease progression might have a positive effect on quality of life measurements. Additive pharmacological agents that target cognitive impairments and common symptoms such as depression, fatigue and pain, along with life-style modifications and rehabilitation programmes are also important for the appropriate management that aims to improve quality of life.
Ahmadi A, Nikbakh M, Arastoo A, Habibi A.-H.b The Effects of a yoga intervention on balance, speed and endurance of walking, fatigue and quality of life in people with multiple sclerosis. J Human Kinet 2010; 23 (1): 71-78.
Investigated the effect of a yoga intervention on balance, speed and endurance of walking, fatigue and quality of life in MS patients. Yoga group subjects participated in a thrice weekly 60-70 minute sessions of Hatha yoga intervention for 8-weeks. Balance, speed and endurance of walking, fatigue and quality of life were measured.
Glanz BI, Healy BC, Rintell DJ, et al. The association between cognitive impairment and quality of life in patients with early multiple sclerosis J Neurol Sci 2010; 290 (1-2): 75-79.
Investigates the associations between overall and domain-specific cognitive performance and quality of life in patients with early MS. Scores on tests of information processing speed were significantly associated with several measures of HQOL including physical well-being, fatigue, and social support. In all cases, correlations between HQOL and cognitive measures were mild. Results suggest that cognitive remediation programs aimed at improving cognitive skills may also improve quality of life for patients with early MS.
Newland PK, Naismith RT, Ullione M. The impact of pain and other symptoms on quality of life in women with relapsing-remitting multiple sclerosis. J Neurosci Nursi 2009; 41(6):322-328.
The purpose of this study was to assess pain, fatigue, depression, sleep disturbance, and quality of life (QOL) in women with relapsing-remitting multiple sclerosis (RRMS) compared with healthy controls. Demonstrates that pain often occurs in association with fatigue, depression, and sleep disturbance, which can lead to a decreased mental QOL.
Wynia K, Middel B, van Dijk JP, et al. The impact of disabilities on quality of life in people with multiple sclerosis. Mult Scler 2008; 14 (7): 972-980.
Study examined the relative impact of MS-related disabilities on quality of life. 530 people with MS completed the Multiple Sclerosis Impact Profile (MSIP) and two generic health-related QOL measures, the Medical Outcome study Short Form Questionnaire (SF-36) and the World Health Organization Quality Of Life-BREF (WHOQOL-BREF). Based on the results, the study recommends that treatment programmes target impairments in cognitive functioning, emotional functioning and sleep and that interventions are best evaluated using the WHOQOL-BREF
Turner AP, Kivlahan DR, Haselkorn JK et al. Exercise and quality of life among people with multiple sclerosis: looking beyond physical functioning to mental health and participation in life. Arch Phys Med 2009; 90(3): 420-428.
This study investigates the prevalence of engagement in exercise in a national sample of people with MS and its effect on health including physical health, mental health and participation in life. People who exercised reported they had better social functioning and better role functioning. Authors conclude that physical activity may represent an important opportunity to improve mental health and quality of life amongst people with MS.
Bishop M, Frain MP, Tschopp MK. Self-management, perceived control, and subjective quality of life in multiple sclerosis: an exploratory study. Rehab Counsel Bull 2008; 52(1): 45-56.
Study explored the relationships between subjective and objective measures of MS impact, self-management, perceived control, and subjective quality of life (SQOL). 157 people with MS took part in the study, the findings of which suggest that self-management is strongly associated with perceived control and that both perceived control and self-management mediate the relationship between MS impact and SQOL
McCrone P, Heslin M, Knapp M, et al. Multiple sclerosis in the UK: service use, costs, quality of life and disability. Pharmacoeconomics 2008; 26(10): 846-860.
Study investigated the links between service use, costs, QOL and disability for people with MS. The study shows that people with MS have high levels of service use but low quality of life in comparison with other conditions. There were significant associations between costs, quality of life, and disability.
Shevil E, Finlayson M. Perceptions of persons with multiple sclerosis on cognitive changes and their impact on daily life. Disabil Rehabil 2006;28(12):779-788.
Montel SR, Bungener C Coping and quality of life in one hundred and thirty five subjects with multiple sclerosis. Mult Scler 2007; 13(3): 393-401
135 people with MS were tested for mental and cognitive states and given a semi-structured interview about clinical and socio-demographic information. Disease course had a strong effect on mental health and quality of life. People with secondary progressive MS use extensive emotional coping strategies and people with primary progressive MS use instrumental coping strategies
Beiske AG, Naess H, Aarseth JH, et al. Health-related quality of life in secondary progressive multiple sclerosis. Mult Scler 2007; 13(3): 386-92
Used Nottingham Health Profile to analyse health-related quality of life in 345 people with secondary progressive MS participating in a trial of beta interferon. No beneficial effect of treatment was found. People with secondary progressive MS had significantly lower health related quality of life than controls and their quality of life was negatively affected by physical disability, disease progression and fatigue.
Johansson S, Ytterberg C, Claesson IM, et al. High concurrent presence of disability in multiple sclerosis: associations with perceived health. J Neurol 2007; 254(6):767-73
219 people with a range of types of MS and levels of disability attending an outpatient clinic were screened for physical disabilities, energy, mood and social /lifestyle activities, together with their perceived physical and psychological impact.
The most significant impact was felt with fatigue and depressed mood, regardless of other disabilities
Grytten N, Maseide P 'When I am together with them I feel more ill.' The stigma of multiple sclerosis experienced in social relationships. Chronic Illn 2006; 2(3): 195-208.
Qualitative study of 14 people with MS and their relatives, about their experiences of living with MS. People with MS reported stigmatising, either through ignoring the MS or overemphasis in personal encounters.
Ennis M, Thain J, Boggild M et al. A randomized controlled trial of a health promotion education programme for people with multiple sclerosis. Clin Rehabil 2006; 20(9): 783-92.
32 people with MS and 30 control subjects attended an 8 week health promotion course. Outcomes measured success in health promotion activity and self-efficacy for health promoting activities, including some quality of life domains that were sustained after 3 months on treatment
Rousseaux M, Perennou D. Comfort care in severely disabled multiple sclerosis patients. J Neurol Sci 2004; 222(1-2):39-48.
Authors argue that discomfort is underestimated in disability assessment and quality of life. Requests a systematic assessment of discomfort in: dressing, washing, maintaining posture in a wheelchair and bed, food intake, chewing and swallowing, bowel control, bladder and bowel evacuation, and sexual function. Enhancing and improving comfort in these areas are discussed.
Hemmett L, Holmes J, Barnes M, Russell N. What drives quality of life in multiple sclerosis? QJM 2004; 97(10): 671-6.
Survey of over 3000 people with MS used the SF-36 to identify major health-related quality of life issues in people with MS. Found fatigue is the major symptom that disrupts occupational and social functions, but pain and mobility issues are significant for over 75% of the people involved.
Rumrill PD, Roessler RT, Fitzgerald SM. Vocational rehabilitation-related predictors of quality of life among people with multiple sclerosis. J Vocat Rehabil 2004; 20(3): 155-63.
Evaluated ill-health, work and psychosocial variables as predictors of quality of life in MS. Positive quality of life was related to level of education, whether in work or not, and negatively related to number and persistence of symptoms, and perceived stress levels.
Reynolds F, Prior S. "Sticking jewels in your life": Exploring women's strategies for negotiating an acceptable quality of life with multiple sclerosis. Qualitative Health Research 2003; 13(9), 1225-51
Qualitative research with women with MS discusses meaningful roles and occupations and identity when living with MS.
Devitt R, Chau B, Jutai JW. The effect of wheelchair use on the quality of life of persons with multiple sclerosis. Occup Ther Health Care 2003; 17(3-4): 63-79.
Pilot study of 16 people with MS found that wheelchair use has a positive impact on their quality of life. Discusses the outcome measure ‘psychosocial impact of assistive devices scale’ and how it can be used to support other clinical assessment.
Klugman TM, Ross E. Perceptions of the impact of speech, language, swallowing and hearing difficulties on quality of life of a group of South African persons with multiple sclerosis. Folia Phoniatrica et Logopaedica 2002; 54(4): 201-21.
Over half of 30 people asked stated that difficulties with speech, language or swallowing impacted negatively on their quality of life. Findings are discussed with implications for practice.
Patti F, Ciancio MR, Reggio E, Lopes R, Palermo F, Cacopardo M, Reggio A. The impact of outpatient rehabilitation on quality of life in multiple sclerosis. J Neurol 2002;249(8):1027-33.
Study group of 58 people with MS received comprehensive outpatient rehabilitation 6 days a week for 6 weeks, compared with 53 people who were given exercises to do at home. The study group improved on all quality of life measures and in fatigue and depression, compared with the home exercise group.
Meyers A, Gage H, Hendricks A. Health-related quality of life in neurology. Arch Neurol 2000; 57(8): 1224-7.
This article attempts to explain the difference between health related quality of life as measured through various standardised measures such as the SF36, and quality of life as assessed and interpreted by the individual. It highlights the complexities of the concept of quality of life, but emphasises its importance in working with people with neurological conditions.
Lundmark K, Branholm IB. Relationship between occupation and life satisfaction in people with multiple sclerosis. Disabil Rehabil 1996; 18(9): 449-53.
A small survey of 30 people with MS found that 14 were satisfied with life and 16 dissatisfied. Satisfied people had less fatigue and were more independent, happier with their leisure and housekeeping ability. All of these domains are significant for occupational therapists.