The role of specialist and general nurses working with people with multiple sclerosis.

AIM: To describe the perceived role of nurses and other carers of people with multiple sclerosis from the perspective of different stakeholders (people with multiple sclerosis, non-specialist nurses, specialist nurses and other health care professionals). BACKGROUND: Multiple sclerosis is one of the commonest causes of disability in young adults. People with multiple sclerosis require supportive care during the disease trajectory. The role of different health and social care providers has not been reported previously. DESIGN: Survey. METHOD: Questionnaire data collected in 2002 during the first phase of scale development (health professionals n = 459; people with multiple sclerosis n = 65; total response rate 59.4%). The data were reanalysed to compare responses across sample groups. RESULTS: There was consensus that neurologists and specialist nurses were the most appropriate professionals in the provision of specialist care with specialist nurses also being identified as key providers of emotional support. However, there were also significant differences in nominations reflecting the different perspectives of the stakeholder groups and a self-report bias. Each stakeholder group frequently emphasised their own perceived contribution to care. The different perspective of people with multiple sclerosis was also noteworthy with their greater emphasis on social care and lay support. CONCLUSIONS: The findings indicate a dissonance in the views of different stakeholders within the care system. The division of labour associated with nursing care requires further exploration. The contrasting paradigms of health care professionals and people with multiple sclerosis regarding models of disability were highlighted. RELEVANCE TO CLINICAL PRACTICE: Multiple sclerosis, like other chronic illnesses, requires substantial nursing care. There is a growing number of specialist nurses in the workforce, however, little is known how their role interfaces with other nurses.

Evaluation of a MS specialist nurse programme.

BACKGROUND: Specialist nurses are being promoted as a means of improving the health care provided to people with multiple sclerosis (MS). OBJECTIVES: To identify the impact of a programme of MS specialist nurses on MS health care provision and on the health and well-being of people with MS. DESIGN: A quasi-experimental design comparing an intervention group in which new MS nurse posts were installed with a control group that had no MS nurse posts. SETTING: Six neurological services in four English regions. PARTICIPANTS: Seven hundred and fifty-three of the 1510 people invited to participate returned completed questionnaires at baseline. Follow-up of participants was 82% with 616 patients participating in the main outcome analysis. METHOD: Data were collected prospectively before the appointment of the MS nurses and then at 12 and 24 months. Data were collected via a postal questionnaire comprising questions related to care processes (information provision and care quality) and health outcome measures, hospital admissions, MS complications, health-related quality of life (SF36) and disease impact (MS Impact Scale-29). Analysis repeated measures in CAT MOD for process variables and ANCOVA to longest follow-up for outcome measures. RESULTS: Information provision was higher in the intervention group (68% (n=153) compared to 53% (n=98) at 24 months) but no significant improvement was observed in information provision through time compared to the control group. There was an increase in the availability of a contact person in the intervention group, at 24 months 83% (n=42) had a contact person compared to 44% in the control (p=0.01). The only significant finding in relation to MS complications was a reduction of 17% in the incidence of pressure ulcers in the intervention sites compared to a 3% reduction in the control (p<0.001). In relation to the disease and health-related quality of life measures, the intervention group showed a small but significant (p<0.05) worsening in the physical and symptom scales of the SF36 compared to the control (mean differences: physical function -2.81, CI -5.45 to -0.1; bodily pain -4.09, CI -7.2 to -0.9; general health -5.35, CI -8.1 to -2.5; and energy and vitality -2.82, CI -5.5 to -0.1). No differences were observed in relation to disease impact or psychosocial well-being, although a relative benefit in mental health (with a 7.8 point advantage on the SF36 mental health scale, p=0.04) was observed in some of the intervention sites for people with relapsing/remitting MS. CONCLUSION: The specialist nurse programme was found to impact positively on the provision of MS-related health care. However, there was very limited evidence that the programme led to any improvements in disease-related problems, impact or health-related quality of life, These findings were in part explained by the inherent difficulties of measuring effects in evaluations of complex phenomena such as a nursing role. The deterioration observed in the intervention group on the physical outcome measures was explained by a selection bias in which people with worsening health were more likely to seek contact with a specialist nurse. It is contended that future research in this area may be better directed toward identifying specific interventions that nurses and other health professionals might employ in addressing the many problems confronting people with MS.

Informal carer activities, carer burden and health status in multiple sclerosis.

OBJECTIVE: To explore the contribution of carer characteristics, activities and disease impact to care burden and health in the multiple sclerosis caregiver population. DESIGN: A prospective postal survey (24 months). SETTING: The study was conducted in seven treatment centres within England. SUBJECTS: Two hundred and fifty-seven caregivers of people with multiple sclerosis. MEASURES: Carer activity, the Caregivers Reaction Assessment Scale (CRA), the Short Form General Health Survey (SF-36), version 2, and care-related health problems. The carer data were linked to a comprehensive patient data set which permitted dyadic variables to be created measuring shared health. RESULTS: Carers were engaged in a wide spectrum of physical care activities; lifting was the most frequent, 74% (n = 192). Patient disease impact scores were positively correlated (P < 0.01) with higher carer activity levels (r = 0.66). The carer activity level increased over time (P < 0.001 ) by around 5% with a mean increase of 0.22 (95% confidence interval (CI) 0.12-0.3) in the carer activity summary score (scale 0-4). Disease impact was negatively correlated (P < 0.01) with carer burden r = - 0.44 (CRA composite scale), physical health status r = -0.27 (SF-36 physical component score) and mental health status r = - 0.21 (SF-36 mental component score); and positively correlated with care-related health problems r = 0.44. Hierarchical regression models explaining 39% and 49% of the variance in care burden and health problem respectively showed that disease impact and dyadic health explained most of the variance, with carer activity contributing an additional 2% to 4% of the variance (P < 0.001). CONCLUSION: The analysis demonstrated that greater disease impact, lower dyadic health, high carer activity and greater carer burden are related to the level of carer-related health problems. The data suggested the need to develop interventions for assessing carers and reducing their activity levels and care burden (objective and subjective).

Health problems and health-related quality of life in people with multiple sclerosis.

OBJECTIVE: To explore the interrelationship between a number of common multiple sclerosis-related problems and health-related quality of life independent of the effect of physical disease impact. DESIGN: A cross-sectional postal survey. SETTING: The study was conducted in seven treatment centres within England. SUBJECTS: Nine hundred and twenty-nine people with multiple sclerosis. MEASURES: The severity of the multiple sclerosis problems (fatigue, pain, urinary incontinence, bowel, depression, pressure ulcers, sexual and employment problems) was assessed using 5-point self-report ordinal scales. Disease impact was measured using the Multiple Sclerosis Impact Scale-29. Health-related quality of life was measured using the 36-Item Short Form Health Survey, version 2 (SF-36). The relationship between the problems, disease impact and health-related quality of life was determined using multivariate analysis of covariance. RESULTS: Seventy four per cent of the sample experienced four or more of the selected problems. The extent and severity of problems increased with the level of disease impact (P< 0.001). Fatigue, pain, employment, depression and relationship problems were all found to have negative effect on the SF-36 scales independent to the effect of disease impact. SF-36 scores were most compromised in patients experiencing multiple problems. The data suggest an interdependent relationship between depression, fatigue and pain. CONCLUSION: The data suggest that many multiple sclerosis complications negatively affect health-related quality of life, independent of the effect of overall disease impact.

Evaluation of transition services for young people with cystic fibrosis in Southeast London.

We report a project being launched to evaluate transition services for young people with Cystic Fibrosis (CF) living in Southeast London, UK, and attending either King's College Hospital (KCH) or University Hospital Lewisham (UHL).