Angus Forbes1, Alison While, Lucia Mathes, Peter Griffiths. 1. King's College London, The Florence Nightingale School of Nursing & Midwifery, Research in Primary and Intermediate Care Section, James Clerk Maxwell Building, London, UK. angus.forbes@kcl.ac.uk
Abstract
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.
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.