The liminal self in people with multiple sclerosis: An interpretative phenomenological exploration of being diagnosed (original) (raw)
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Confronting the Diagnosis of Multiple Sclerosis
Journal of Nursing Research, 2014
central nervous system. MS afflicts over 2.5 million people worldwide (Multiple Sclerosis International Federation, 2013) and 60,000 in Iran. According to the Iran Neurology Society, statistics for people with MS have increased from 51.9 per 100,000 population in 2009 to 73 per 100,000 population in 2011, and the prevalence rate of MS in Iran is 20 times higher than in other countries in the region (Etemadifar & Abtahi, 2012). MS typically has its onset in early adulthood and affects women more than men. Although rarely fatal, MS produces a range of unpleasant and disabling symptoms. The course of MS is idiosyncratic and unpredictable, the exact causes are poorly understood, and there is no known cure (Arnett & Randolph, 2006). Very few patients diagnosed with MS are able to adapt to the disease and successfully live with it (McCabe, McKern, & McDonald, 2004). The complex nature of the disease and the multiple psychoemotional, physical, family, occupational, and social hardships and disabilities are major impediments to accepting the disease, making the diagnosis more difficult for the patient to face. Moreover, it takes longer for the patient to accept the disease. Sometimes, patients never acclimate to their disease. Therefore, consideration of the patient in confronting the disease is necessary (
Quality of Life in Multiple Sclerosis
Archives of Neurology, 1992
An overall aim of treatment in multiple sclerosis is to lower the negative impact of the disease on functioning and quality of life of patients. Therefore, a measurement of functioning and quality of life should be included in the evaluation of the effectiveness of treatment. The most commonly used quality of life questionnaires, either generic or specific, were presented in this paper,. Information about clinical and functional status is useful in the interpretation of the quality of life assessment results. Because of that, instruments for the assessment of depression, cognitive functions, functional ability and fatigue in multiple sclerosis were also described. Key words: ame li or at ion , di sa bi l it y, f ati gue , M ul ti ple S c ler o si s , Q ua li ty of Life, rehabilitation. Quality of Life in MS patients Quality of Life (QoL) is a multi-dimensional construct which consists of at least three broad domains: physical, mental and social. In the field of medicine researchers and physicians have often used healthrelated quality of life concept which specifically focuses on the impact of an illness and/or treatment on patients' perception of their status of health and on subjective wellbeing or satisfaction with life (Jaracz 2003)[1]. We have described the Quality of Life of post-stroke patients and their caregivers in our first report (JMed&Life 2010;3(3):216-220)[2]. The Quality of Life of patients with Multiple Sclerosis is being described in this next review report. MS can cause a variety of symptoms, including changes in sensation, visual problems, muscle weakness, depression, difficulties in coordination and speech, severe fatigue, cognitive impairment, problems with balance, overheating, and pain. MS will cause impaired mobility and disability in more severe cases. Multiple sclerosis may take several different forms, with new symptoms either occurring in discrete attacks or slowly accruing over time. Between attacks, symptoms may resolve completely, but permanent neurologic problems often persist, especially as the disease advances. Currently, MS does not have a cure, though several treatments are available, that may slow the appearance of new symptoms. MS primarily affects adults, with an age of onset typically between 20 and 40 years old, and is more common in women than in men. The course of MS is difficult to predict, and the disease may, at times, either lie dormant or progress steadily. Several subtypes or patterns of progression, have been described. Subtypes use the past course of the disease in an attempt to predict the future course. Subtypes are important not only for prognosis but also for therapeutic decisions. Individuals with progressive subtypes of MS, particularly the primary progressive subtype, have a more rapid decline in function. In the primary progressive subtype, supportive equipment (such as a wheelchair or standing frame) is often needed after six to seven years. However, when the initial disease course is the relapsingremitting subtype, the average time until such equipment is needed is twenty years. This means that many individuals with MS will never need a wheelchair. There is also a more cognitive impairment in the progressive forms than in the relapsing-remitting MS. The earlier in life MS occurs, the slower disability progresses. Individuals who are older than fifty when diagnosed are more likely to experience a chronic progressive course, with a more rapid progression of disability. Those diagnosed before the age of 35 years old have the best prognosis. Females generally have a better prognosis than males. However, their Patient-Reported
Journal of the Neurological Sciences, 2006
Background: Studies assessing psychosocial consequences of multiple sclerosis (MS) in the community are scarce; it appears that there are no longitudinal surveys in this area. Objectives: We prospectively assessed changes in self-perceived health status over 5 years in a community cohort of MS adults. Methods: The 251 people who participated in a 1999 postal survey were re-assessed in 2004, being sent the Multiple Sclerosis Quality-of-Life-54 (MSQOL-54), the Chicago Multiscale Depression Inventory (CMDI), and a demographic/clinical questionnaire. Health-related quality of life (Short Form-36) and CMDI were also assessed in participants' significant others. Results: A total of 205 people participated: 14 (5.6%) of the original cohort MS had died and 32 (13%) did not return the questionnaires. A significant other was available for 74% of responders. The proportion requiring constant bilateral walking assistance increased from 16% to 33%. The proportion using housing adaptations increased from 17% to 27%, and the use of daily home care increased from 19% to 28%. Impaired CMDI mood affected 27% of MS and 19% of significant others. Changes in MSQOL-54 were not unidirectional: the domains change in health, physical function, and general health worsened; while social function, mental health, and health distress improved significantly.
PLoS ONE, 2013
Objective: Multiple sclerosis is now more common among minority ethnic groups in the UK but little is known about their experiences, especially in advanced stages. We examine disease progression, symptoms and psychosocial concerns among Black Caribbean (BC) and White British (WB) people severely affected by MS. Design: Mixed methods study of 43 BC and 43 WB people with MS (PwMS) with an Expanded Disability Status Scale (EDSS) $6 involving data from in clinical records, face-to-face structured interviews and a nested-qualitative component. Progression Index (PI) and Multiple Sclerosis Severity Score (MSSS) were calculated. To control for selection bias, propensity scores were derived for each patient and adjusted for in the comparative statistical analysis; qualitative data were analysed using the framework approach. Results: Median EDSS for both groups was (6.5; range: 6.0-9.0). Progression Index (PI) and Multiple Sclerosis Severity Score (MSSS) based on neurological assessment of current EDSS scores identified BC PwMS were more likely to have aggressive disease (PI F = 4.04, p = 0.048, MSSS F = 10.30, p,0.001). Patients' reports of the time required to reach levels of functional decline equivalent to different EDSS levels varied by group; EDSS 4: BC 2.7 years v/s WB 10.2 years (U = 258.50, p = 0.013), EDSS 6:6.1 years BC v/s WB 12.7 years (U = 535.500, p = 0.011), EDSS 8: BC 8.7 years v/s WB 10.2 years. Both groups reported high symptom burden. BC PwMS were more cognitively impaired than WB PwMS (F = 9.65, p = 0.003). Thematic analysis of qualitative interviews provides correspondence with quantitative findings; more BC than WB PwMS referred to feelings of extreme frustration and unresolved loss/confusion associated with their rapidly advancing disease. The interviews also reveal the centrality, meanings and impact of common MS-related symptoms. Conclusions: Delays in diagnosis should be avoided and more frequent reviews may be justified by healthcare services. Culturally acceptable interventions to better support people who perceive MS as an assault on identity should be developed to help them achieve normalisation and enhance self-identity.
BMC Neurology, 2010
Background: There is a need for greater understanding of the impact of multiple sclerosis (MS) from the perspective of individuals with the condition. The South West Impact of MS Project (SWIMS) has been designed to improve understanding of disease impact using a patient-centred approach. The purpose is to (1) develop improved measurement instruments for clinical trials, (2) evaluate longitudinal performance of a variety of patientreported outcome measures, (3) develop prognostic predictors for use in individualising drug treatment for patients, particularly early on in the disease course. Methods: This is a patient-centred, prospective, longitudinal study of multiple sclerosis and clinically isolated syndrome (CIS) in south west England. The study area comprises two counties with a population of approximately 1.7 million and an estimated 1,800 cases of MS. Self-completion questionnaires are administered to participants every six months (for people with MS) or 12 months (CIS). Here we present descriptive statistics of the baseline data provided by 967 participants with MS. Results: Seventy-five percent of those approached consented to participate. The male:female ratio was 1.00:3.01 (n = 967). Average (standard deviation) age at time of entry to SWIMS was 51.6 (11.5) years (n = 961) and median (interquartile range) time since first symptom was 13.3 (6.8 to 24.5) years (n = 934). Fatigue was the most commonly reported symptom, with 80% of participants experiencing fatigue at baseline. Although medication use for symptom control was common, there was little evidence of effectiveness, particularly for fatigue. Nineteen percent of participants were unable to classify their subtype of MS. When patient-reported subtype was compared to neurologist assessment for a sample of participants (n = 396), agreement in disease sub-type was achieved in 63% of cases. There were 836 relapses, reported by 931 participants, in the twelve months prior to baseline. Twenty-three percent of the relapsingremitting group and 12% of the total sample were receiving disease-modifying therapy at baseline. Conclusions: Demographics of this sample were similar to published data for the UK. Overall, the results broadly reflect clinical experience in confirming high symptom prevalence, with relatively little complete symptom relief. Participants often had difficulty in defining MS relapses and their own MS type.
Disease Progression in Multiple Sclerosis: A Literature Review Exploring Patient Perspectives
Patient Preference and Adherence, 2021
Purpose: Multiple sclerosis (MS) prognosis is often uncertain. This literature review considers patients' understanding of, and perspectives on, MS progression to better comprehend the unmet needs of people with MS (PwMS), in order to improve treatment adherence and quality of life (QoL). Methods: Literature searches for peer-reviewed papers concerning patient perspectives on the progression of MS and comparable conditions, published between January 2000 and January 2020, were conducted. Results: Little qualitative evidence exists that examines PwMS' perspectives on MS progression. The understanding and meaning ascribed to terms such as "disease progression" vary. Some PwMS find disease labels stigmatizing, confusing, and disconnected from reality. The lack of a clear definition of progression and discrepancies between PwMS and healthcare professional (HCP) perspectives may contribute to misunderstanding and poor communication. Patient descriptions of progression and relapses include symptoms in addition to those evaluated by standard severity and disability measures. Compared with HCPs, PwMS are still focused on relapse prevention but place higher priority on QoL and ascribe different relative importance to the causes of poor adherence to treatment plans. PwMS want to discuss progression and likely prognosis. Such communication needs to be personalized and delivered with sensitivity, at an appropriate time. Poor treatment adherence may arise from a lack of understanding and poor communication, particularly around treatment goals. The few studies that directly considered patient perspectives on the progression of comparable conditions supported and extended the perspectives of PwMS. Lack of adequate communication by HCPs was the most common theme. Conclusion: Patient perspectives on disease progression in MS and other chronic progressive conditions are under-investigated and under-reported. The limited evidence available highlights the importance of providing adequate information and effective HCP communication. While further studies are needed, the current evidence base offers information and insights that may help HCPs to enhance patient care, well-being, and treatment adherence.
Journal of Advanced Nursing, 2009
Title. Perceptions of illness and its development in patients with multiple sclerosis: a prospective cohort study. Aim. This paper is a report of a study to examine the degree to which sociodemographic variables, clinical variables and health-related quality of life are related to perceptions of disease severity and changes in disease severity in patients with multiple sclerosis. Background. Studies have shown that patients with multiple sclerosis report lower quality of life than the general population. Method. Questionnaires measuring health-related quality of life and perceived multiple sclerosis severity were mailed twice, 1 year apart, in May/June of 2000 and 2001, (t 1 and t 2 ), to patients with confirmed multiple sclerosis in Oslo, Norway (n = 502). Clinical data about disease onset and course were retrieved from the Oslo City Multiple Sclerosis Registry. Findings. Among the 313 (62AE4%) people who responded at both times, those with primary progressive disease course reported higher perceived multiple sclerosis severity (P < 0AE001), more mental health problems (P = 0AE004) and lower physical functioning (P < 0AE001) than those with a relapsing remitting/secondary progressive disease course. Patients with primary progressive disease course reported higher mean scores for multiple sclerosis severity at t 2 than at t 1 . Multivariate regression analysis showed that social functioning was the only factor with statistically significant relationships to perceived multiple sclerosis severity among all sub-domains of health-related quality of life or personal factors. However, physical impairment was also independently related to patients' ratings of changes in multiple sclerosis severity during the year and illness severity 1 year later. Conclusion. In addition to patients' physical impairment, healthcare workers should pay special attention to issues related to their social functioning.
NeuroRehabilitation, 2004
This study compares the demographic, clinical, and health care characteristics of 2,156 persons over and under age 65 who are participants in the Sonya Slifka Longitudinal Multiple Sclerosis Study and examines the effects of current age, age at diagnosis, course, and duration of illness on disability-related outcomes. Compared to younger MS patients, significantly higher percentages of older patients lived alone, had lower incomes, and were severely disabled; 85% needed help with activities of daily living and 40% received home care services. Almost all older patients had health insurance, 75% had prescription drug coverage, and few reported difficulty accessing general medical and specialized MS care; perceptions of health status and quality of life were relatively positive. Duration and course of illness were the major predictors of disability, although older current age and younger age at diagnosis were also associated. The relationship among age-and disease-related variables is complex and they likely exert independent effects on disability-related outcomes. Planning is needed by caregivers and policy makers to ensure that the specialized needs of elderly persons with MS are adequately met.
Conclusions: Calls to action for improving the life of MS patients and their families
Multiple sclerosis (Houndmills, Basingstoke, England), 2016
The first and second Pan-European MS Multi-stakeholder Colloquia were set up to increase cross-talk and communication between the different stakeholders in MS and developed joint Calls to Action to improve (equal) access to quality care and treatment for MS in Europe. To summarise the 10 integrated and interrelated Calls to Action developed. Call 1: increase awareness in the European community about the burden MS places on patients, caregivers and society. Call 2: improve communication towards the European community on the direct and indirect cost burden of MS. Call 3: perform patient research to (re)define treatment goals/endpoints from a humanistic/patient perspective point of view. Call 4: develop new tools to better capture the total clinical burden of MS. Call 5: develop a protocol for standardisation of MRI for optimising its use as a marker of disability progression in MS. Call 6: support research to find other (molecular) biomarkers which can predict long-term disability pro...