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Article
Publication date: 1 December 2002

Helen L. Ford, Michael Johnson and Jon Fear

This paper’s objective is to develop a model for the appropriate and equitable use of disease‐modifying treatments in multiple sclerosis. The prevalence and incidence of…

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Abstract

This paper’s objective is to develop a model for the appropriate and equitable use of disease‐modifying treatments in multiple sclerosis. The prevalence and incidence of multiple sclerosis was established in Leeds. A specialist multiple sclerosis team with two consultant neurologists and a multiple sclerosis support nurse was based at one centre. The team co‐operated with purchasers to develop a model of care. This included a referral protocol, strict prescribing criteria, counselling and education of patients, the use of patient‐centred outcome measures and training and feedback to other neurologists. A total of 217 people with multiple sclerosis were assessed from April 1997 to March 2000. Our experience suggests that a centralised multi‐district clinic developed by close collaboration between clinicians and health purchasers and operating under agreed rules is a feasible and effective model for the managed introduction of new treatments to the NHS.

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British Journal of Clinical Governance, vol. 7 no. 4
Type: Research Article
ISSN: 1466-4100

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Book part
Publication date: 13 October 2014

Darbi J. Haynes-Lawrence and Adam R. West

The purpose of this study was to survey parents who have Multiple Sclerosis (MS) and examine issues surrounding their parenting.

Abstract

Purpose

The purpose of this study was to survey parents who have Multiple Sclerosis (MS) and examine issues surrounding their parenting.

Design

Qualitative surveys were used to collect data.

Findings

Findings from the study include three themes: (a) They needed to know; (b) Involving children with treatment; and (c) I can’t do this alone. Discussion of findings and conclusions and recommendations for parents, physicians, and future studies are presented.

Research limitations

Data for the study was collected through self-reports and limited demographic data was collected.

Value

Continued research on MS is needed, especially in the area involving children in at-home treatments and children as caregivers. Children can be a challenging population to investigate, yet as evidenced in this study, children are being involved in MS treatments of their parents. A greater, more in-depth look at the role of a child as caregiver is warranted.

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Family Relationships and Familial Responses to Health Issues
Type: Book
ISBN: 978-1-78441-015-5

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Article
Publication date: 24 March 2011

Kate Heward, Brendan Gough and Matthew Molineux

The diagnosis of a chronic progressive condition such as multiple sclerosis (MS) can impact on many aspects of daily life. Living with, and caring for, an individual with…

Abstract

The diagnosis of a chronic progressive condition such as multiple sclerosis (MS) can impact on many aspects of daily life. Living with, and caring for, an individual with such a condition is likely to have emotional and psychological consequences. We carried out semi‐structured interviews with nine partners and analysed the interview transcripts using grounded theory (Strauss & Corbin, 1998), the phase presented in this article formed part of a larger overall study that explored the impact of living with MS for partners and a family. Our analysis in this phase highlights two core themes centred on identity issues faced by the participants: ‘playing detective’ in order to acquire information and manage the situation; and ‘reshaping identities’ in a shifting context, which reflected the participants' difficulties in reconfiguring important identities (at work and at home). Although previous research has addressed how carers cope, there is a dearth of qualitative literature relating to whether or not partners' identities are affected by taking a central role in caring, including how previous identities are maintained and new ones acquired.

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Social Care and Neurodisability, vol. 2 no. 1
Type: Research Article
ISSN: 2042-0919

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Article
Publication date: 1 August 1997

Lynda M. Baker

Communication problems between physicians and people with chronic diseases may result from many causes. A brief description of some causes is provided. The focus of this…

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393

Abstract

Communication problems between physicians and people with chronic diseases may result from many causes. A brief description of some causes is provided. The focus of this article concerns the information‐seeking patterns of women with multiple sclerosis (MS). A survey method was used to determine whether a woman‘s general orientation to information (monitoring, or actively seeking infor mation; blunting, or turning away from information) or the length of time she had had MS affected her choice of human resource from whom she preferred to receive both medical and non‐medical information on a variety of topics related to multiple sclerosis. Although both monitors and blunters indicated physicians as the preferred source of medical as well as non‐medical information, the results revealed that monitors preferred physicians more often than did blunters. The length of time a woman had had MS was not a major factor affecting her choice of physicians. The use of physicians as a resource for both medical and non‐medical information can contribute to physician frustration which, in turn, can foster physician‐patient communication problems.

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Journal of Documentation, vol. 53 no. 3
Type: Research Article
ISSN: 0022-0418

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Article
Publication date: 28 April 2010

Ceri Bowen and Anna MacLehose

Neurological disease and neurodisability cause significant disruption to families, who come under substantial pressure to adapt to changes in the condition over time…

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130

Abstract

Neurological disease and neurodisability cause significant disruption to families, who come under substantial pressure to adapt to changes in the condition over time. Family members are often disadvantaged in their coping because of infrequent access to professional consultations, and by default carers tend to neglect their own needs. One threat to relationships can be a pull towards acting as the main carer, even carrying out personal care tasks, especially if the family unit resists extending its boundaries to include paid carers. We discuss the distinct challenges that families are faced with at different stages of disease progression (emerging, diagnostic, longterm adaptation, crisis, chronic, and terminal) for one particular condition (multiple sclerosis or MS). A number of recommendations are made for supporting family members in the form of a ‘family care pathway’ for neurology and neurodisability.

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Social Care and Neurodisability, vol. 1 no. 1
Type: Research Article
ISSN: 2042-0919

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Article
Publication date: 1 March 1987

Ivan M. Sharman

Multiple sclerosis, otherwise known as disseminated sclerosis syndrome or MS for short, is so‐called because it involves a multiple scarring, or ‘sclerosis’, of the…

Abstract

Multiple sclerosis, otherwise known as disseminated sclerosis syndrome or MS for short, is so‐called because it involves a multiple scarring, or ‘sclerosis’, of the central nervous system. The onset of the disease is often difficult to identify because it begins with intermittent episodes of attacks which may be quite mild. There are also periods of remission so that attacks may be forgotten and not related to the disease. MS is more prevalent in females and initial episodes usually occur between the ages of twenty and forty years of age.

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Nutrition & Food Science, vol. 87 no. 3
Type: Research Article
ISSN: 0034-6659

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Book part
Publication date: 21 November 2011

Pamela Block, Eva L. Rodriguez, Maria C. Milazzo, William S. MacAllister, Lauren B. Krupp, Akemi Nishida, Nina Slota, Alyssa M. Broughton and Christopher B. Keys

Purpose – Researchers use the concept of biosociality and a disability studies framework of empowerment to present and analyze examples of community formation and…

Abstract

Purpose – Researchers use the concept of biosociality and a disability studies framework of empowerment to present and analyze examples of community formation and participation for youth with pediatric multiple sclerosis.

Methodology – The data were collected using participant observation, individual and focus group interviews during Teen Adventure Camps held in the summers of 2004–2009 and an Educational Transition Retreat held in the fall of 2008.

Findings – Evidence of community formation and identification include the development of formal and informal systems for mutual support and mentoring, as well as transformations in self-perception and collective identity. Challenges to community formation include differing perspectives about disability-pride vs. diagnosis-specific affiliations.

Research implications – This research indicates that there are many pathways to individual and community identification which may include and even intertwine both diagnosis-specific and disability-pride approaches. The process of community formation is transformative, thus preferences with regard to community identification should not be considered stable, but rather understood as a developmental process that may change over time.

Originality/value of paper – Building upon social and minority group theories, this research moved beyond social critique to develop and implement strategies for community development, individual, and group empowerment.

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Disability and Community
Type: Book
ISBN: 978-0-85724-800-8

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Book part
Publication date: 25 March 2010

Avi Dor, Maureen J. Lage, Marcy L. Tarrants and Jane Castelli-Haley

Purpose – The authors focus on understanding the relationship between costs and cost sharing on medication adherence for individuals who initiated a disease-modifying…

Abstract

Purpose – The authors focus on understanding the relationship between costs and cost sharing on medication adherence for individuals who initiated a disease-modifying therapy (DMT) for the treatment of multiple sclerosis (MS). DMTs reduce the risk of relapse and are an essential component of MS treatment. Furthermore, the authors compare monthly payment levels for copayments versus coinsurance and estimate the effects on adherence.

Methods – Using the MarketScan Commercial Claims and Encounters database evidence from July 1 2005 to March 31 2008, the authors employ a multivariate two-stage least-squares model (2SLS) to examine the impact of copayments or coinsurance on the medication possession ratio (MPR).

Findings – Descriptive results show that the mean out-of-pocket (OOP) costs of DMT per month were higher for patients with coinsurance than for patients with copayments. For the cohort of patients with copayment there was little difference in monthly copayments across adherence thresholds. Regression analysis shows that an increase in cost sharing reduces adherence overall, but this effect was small and insignificant in the copayment cohort. In contrast, in the coinsurance cohort increased cost sharing was significantly associated with decreased adherence to DMT medication; with a 10% increase in cost sharing leading to an 8.6% decline in adherence.

Implications – Employers increasingly rely on coinsurance, despite evidence that reliance on coinsurance results in lower adherence. Our research findings suggest that coinsurance appears to be a greater obstacle to compliance, confirming predictions found in the theoretical literature.

Originality – This research converted counts of injectable treatments into a continuous adherence measure. Previous literature on cost sharing did not examine MS.

Details

Pharmaceutical Markets and Insurance Worldwide
Type: Book
ISBN: 978-1-84950-716-5

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Article
Publication date: 8 April 2021

Foziah Alshamrani and Hind Alnajashi

Multiple sclerosis (MS) is a chronic autoimmune neurological disease. Disease-modifying therapies (DMTs) are mainstay lifelong treatment with no immediate benefits…

Abstract

Purpose

Multiple sclerosis (MS) is a chronic autoimmune neurological disease. Disease-modifying therapies (DMTs) are mainstay lifelong treatment with no immediate benefits observed. Adherence to treatment is necessary, however, non-adherence is common problem in MS patients. This paper aims to evaluate patient-related factors and satisfactions affecting medication adherence in Saudi MS patients and their rights to discontinue them against medical advice.

Design/methodology/approach

In total, 409 patients diagnosed with MS, using self-administered DMT (oral and injectable), were randomly enrolled in a cross-sectional study. Electronic questionnaire was used in data collection.

Findings

Most participants (71.1%) did not know about their MS type. Average age of participants when diagnosed with MS was 27.9 ± 8 years (range 7–69), mean disease duration was 8.1 ± 6.6. Most patients received injectable therapy 363 (88%). Overall adherence in our sample was 67%. Age of participants and duration of disease had no impact on treatment adherence. No significant differences found between genders, educational level, marital status, and smoking in relation to treatment adherence. Route of administration did not reach statistical significance despite a higher percentage of adherence reported in patients on oral DMT [33% (n = 15)] versus injectable therapy [29% (n = 104)]. Conversely, there was significant difference between adherent and non-adherent patients according to anxiety (p = 0.002) and family history of MS (p = 0.011).

Originality/value

The results revealed that the age of the participants and the duration of the disease had no impact on adherence to treatment.

Details

International Journal of Human Rights in Healthcare, vol. ahead-of-print no. ahead-of-print
Type: Research Article
ISSN: 2056-4902

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Article
Publication date: 6 May 2014

Dawn Reeve, Charlotte Gayson and Talal Stephan

The purpose of this paper is to increase awareness and compliance of The National Institute for Health and Care Excellence (NICE) Guidance regarding cognitive impairment…

Abstract

Purpose

The purpose of this paper is to increase awareness and compliance of The National Institute for Health and Care Excellence (NICE) Guidance regarding cognitive impairment in multiple sclerosis (MS).

Design/methodology/approach

Assessments were offered routinely to consecutive inpatients with MS and to 20 per cent of outpatients. Once consent was gained, a cognitive assessment and subjective measure of cognition was completed with the patient, as well as a disability scale completed by the Medical Consultant. Individually targeted cognitive rehabilitation advice was provided using a bespoke advice leaflet. Afterwards, those who completed the assessment were asked to provide feedback on their experience.

Findings

The percentage that were classed as below average cognitively and the pattern of impairment was comparable to previous findings. Memory was rated the most affected by the largest number of MS individuals and a strong relationship was found between objective and subjective measures of attention. The average functional disability level was rated at 6.99. Evaluations for the service provided were positive; over half of the sample was unaware of NICE Guidance on this issue but 100 per cent would recommend this service and provided optimistic quotes.

Practical implications

This evaluation has enabled greater numbers to receive the recommended services and provided a useful baseline assessment of cognitive impairment and of patient attitudes towards this service. Resulting from this process, a new service framework has been proposed and presented at a local level. The advice leaflet developed for this process has been well received by patients and colleagues resulting in its submission to become an official NHS leaflet.

Originality/value

Developed clinical governance of NHS services to patients with MS in offering improved assessment and management of cognitive problems. This is in contrast to the national trend showing little improvement of MS care and the lack of NICE implementation by the MS Trust and Royal College of Physicians audit. Furthermore, the bespoke advice leaflet developed for patients and carers of MS demonstrates originality of information provided.

Details

Social Care and Neurodisability, vol. 5 no. 2
Type: Research Article
ISSN: 2042-0919

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