Table 3 Theory of the change in proposals for the ideal approach to MS
Proposal | Objective and Activity | Stakeholders | Expected returns according to each stakeholdera |
|---|---|---|---|
1. Training in MS and its symptoms both for non-specialist MS neurology and for healthcare professionals from other areas related to MS patients. | Objective: To provide minimum training in EM to all health professionals who may be involved in the detection of a case of MS. Activity: • Design and delivery of an accredited continuous training course in each of the SNHS hospitals with a neurology department, for neurology professionals who are not specialised in MS. • Design of an accredited on-line ongoing training course, aimed at other healthcare professionals in areas related to MS. | • National Health System. • Neurology professionals not specialised in MS. • Other health professionals linked to the management of MS. • Incident patients with MS. | National Health System • Diagnostic errors would be avoided by training health professionals who treat patients with MS in the disease. Incident patients with MS • Training health professionals who care for MS patients in the disease would reduce the time to diagnosis. |
2. Coordination between primary care medicine and neurology, through direct contact channels. | Objective: To improve coordination between PCM and neurology for an earlier diagnosis. Activity: Promotion of the figure of the professional consultant neurologist, so that each PCM can contact the neurology professional at the reference hospital directly, mainly by phone or through the digital medical records. | • National Health System. • Primary Care Medicine. • Neurology professionals. • Incident patients with MS. | National Health System • The waiting time for the first visit with the neurology professional would be reduced: a possible visit of the patient to Accident and Emergency department would be avoided. Incident patients with MS • It would reduce the patient’s time to diagnosis (early diagnosis) by improving communication between primary care professionals and neurologists. • The emotional state, linked to previous returns, would be improved. |
3. Decrease in waiting lists in the neurology speciality. | Objective: To facilitate the early diagnosis of MS. Activity: • Modification of the appointment management tool that allows for preferential coding from PCM for suspected disease to be included in the cross-consultation for the neurology professional. • Warning, through the appointment management system, about the existence of prioritisation of suspected MS through a code. | • National Health System • Incident patients with MS | National Health System • An early MS diagnosis would delay the disability progression from mild to moderate. By reducing the referral time to the neurology professional, an early diagnosis would be reached, which would result in delaying the disability progression. • An early MS diagnosis would delay the disability progression from moderate to severe. By reducing the referral time to the neurology professional, an early diagnosis would be reached, which would result in delaying the disability progression. Incident patients with MS • Reducing the time of referral to the neurology professional would reduce the time to the diagnosis of MS, since it is one of the factors that influence the diagnosis delay. |
4. Quick access to the magnetic resonance imaging test. | Objective: To facilitate the early diagnosis of MS. Activity: Extension of the magnetic resonance imaging (MRI) test schedule to weekends, for nine and a half months, of all the equipment available in SNHS hospitals with a neurology department. | • National Health System • Radiology professionals • Radiodiagnosis technicians • Incident patients with MS • Other neurological patients • Other non-neurological patients | National Health System • An early MS diagnosis would delay the disability progression from mild to moderate. • An early MS diagnosis would delay the disability progression from moderate to severe. Incident patients with MS • Reducing the waiting list for MRI would shorten the time to the diagnosis of MS. The availability of diagnostic tools is another reason for diagnosis delay. The extension of non-working days to perform the MRI test has already been carried out on a pilot basis in some hospitals, obtaining a reduction around 30% in the waiting list. |
5. Visit of diagnostic test results within a maximum 30 days. | Objective: To facilitate the early diagnosis of MS. Activity: Modification in the appointment request system which allows that appointments for all the diagnostic tests can be set on a same day or a maximum of 2 days. | • National Health System • Neurology professionals • Incident patients with MS | National Health System • An early MS diagnosis would delay the disability progression from mild to moderate. • An early MS diagnosis would delay the disability progression from moderate to severe. Incident patients with MS • Reducing the waiting list for diagnostic tests would shorten the time to the diagnosis of MS. The availability of diagnostic tools is another reason for diagnosis delay. |
6. Early visit with neurology after diagnosis. | Objective: To improve information and emotional support in the diagnosis of MS. Activity: Additional follow-up visit with neurology. | • Neurology professionals • Incident patients with MS • Informal carers | Incident patients with MS • The degree of patient’s understanding of the disease from the time of diagnosis would be improved. In an early visit after the diagnostic visit, patient information would improve as it would help resolve doubts. • The emotional burden of the patient at the time of diagnosis would be reduced by resolving doubts. • Labour productivity losses would occur in working patients, as a consequence of attending this visit. Informal carers • The burden of care for informal caregivers would be increased by having to accompany patients to this visit. |
7. Coordination between primary care medicine and neurology, through direct contact channels. | Objective: To improve the quality of care for patients and avoid unnecessary displacements or erroneous referrals. Activity: Promotion of the figure of the professional consultant neurologist, so that each PCM can contact the neurology professional at the reference hospital directly, mainly by phone or through the digital medical records. | • National Health System • Primary Care Medicine • Neurology professionals • Patients with RRMS • Informal carers | National Health System • Unnecessary visits to neurology professionals would be avoided for RRMS patients. Patients with RRMS • The labour productivity of patients with RRMS who work would be improved by not having to go to unnecessary visits with the neurology professional. Informal carers • The burden of care for informal caregivers would be reduced by not having to accompany patients to unnecessary medical visits. |
8. Protocol on the follow-up of patients according to the criteria of disease severity. | Objective: To improve the efficiency of healthcare processes by ensuring the application of monitoring and treatment protocols to patients with RRMS. Activity: 243 talks given by members of the CSURs and/or members from demyelinating diseases groups from each Autonomous Community, according to the established local protocols, for MS care, aimed at both neurology and PCM professionals. | • National Health System • Staff of the CSUR in MS and/or members from demyelinating diseases groups from each Autonomous Community • Neurology professionals specialised in MS • Primary Care Medicine • Patients with RRMS | National Health System • The number of relapses would be reduced in patients not currently treated according to the protocols. Patients with RRMS • Relapses would be avoided as a result of the appropriate approach. |
9. Magnetic resonance imaging performed at least once a year. | Objective: To improve hospital availability of the MRI test, which allows to annually review brain lesions in patients with RRMS and assess disease activity (prognosis and progression) and/or suboptimal responses to treatments. Activity: Performing an imaging test, brain MRI, annually on all those patients with RRMS who are not currently being tested. | • National Health System • Neurology professionals specialised in MS • Radiology professionals • Patients with RRMS • Informal carers | National Health System • Flare-ups would be prevented in patients not undergoing an annual MRI. The follow-up of the patients and the adequacy of the treatment would be improved. Patients with RRMS • The emotional state of patients with this affected dimension would be improved, linked to the previous return. • There would be losses of labour productivity in working patients, for undergoing the MRI test. Informal carers • The care burden of informal caregivers would be increased by accompanying patients to the MRI test. |
10. Universal access to monographic consultations and/or multidisciplinary units of MS throughout the National Health System. | Objective: To care for patients with RRMS in a more efficient way and with better quality. Activity: Creation of two types of resources: 1. Monographic consultations in hospitals with a neurology department that has less than 200 beds. Patients with mild RRMS would benefit from them. In this context, two visits per year to specialist MS neurology are considered. 2. Multidisciplinary MS units in the rest of the hospitals with a neurology department, with more than 200 beds. Patients with moderate and severe RRMS would benefit from them. In this case, the following is considered for each unit: • Training a specialist neurologist in MS in unit management. • Three visits per year to neurology and nurses specialised in MS, for patients with moderate RRMS. • Six visits per year to neurology and nurses specialised in MS, for patients with severe RRMS. • If required, ten visits per year to neuropsychology and sixty to neurophysiotherapy. | • National Health System • Neurology professionals specialised in MS • Nurses specialised in MS • Other specialities: neurophysiotherapy and neuropsychology • Patients with mild RRMS • Patients with moderate-severe RRMS • Informal carers | National Health System • Treatment adherence in patients with moderate-severe RRMS would be improved, mainly due to the monitoring carried out by the hospital nurses. • All patients with RRMS who did not receive drug therapy previously because they did not attend the monographic consultations/MS units would be then adequately treated. Patients with mild RRMS • The emotional state of patients with this affected dimension would be improved when receiving a better follow-up. • There would be losses in labour productivity in working patients as a result of attending visits. Patients with moderate-severe RRMS • Autonomy and quality of life would be improved due to the comprehensive approach of the multidisciplinary units. • The emotional state of the patients with this affected dimension would be improved. • There would be losses in labour productivity in working patients as a result of attending visits. Informal carers • The care burden of informal caregivers to patients with RRMS would be reduced as disease progression can be slowed down. • The care burden of informal caregivers would increase when accompanying patients with RRMS to visits. |
11. Access to disease modifying treatment for patients with RRMS not currently treated. | Objective: To establish early treatment for patients with RRMS. Activity: Treatment of patients with RRMS not currently treated with hospital DMTs, as a consequence of the adverse drug reactions or of the concomitant diseases they suffer, that prevent them from receiving certain treatments. | • National Health System • Regional health services in the autonomous regions. • Neurology professionals specialised in MS • Hospital pharmacy • Patients with untreated RRMS | National Health System • The evolution of MS disability in patients with RRMS would be slowed, since they would be treated from the beginning of the diagnosis. Patients with untreated RRMS • Flare-ups would be avoided with the early pharmacological treatment. |
12. Education about healthy habits for patients through hospital nursing specialised in MS. | Objective: To improve the quality of life of patients through changes in life habits Activity: 1. Group meetings led by hospital nurses, aimed at about ten patients per meeting, for training about healthy habits. 2. Printing and sending information brochures to hospitals that lack consultations/specialist units for MS | • National Health System • Nurses specialised in MS • Patients with RRMS • Informal carers | Patients with RRMS • Self-care of patients with RRMS would be improved, and they would have a healthier life, allowing patients to pay more attention to maintaining healthier lifestyles in those cases that do not. • There would be losses in labour productivity in working patients when going to consultations with hospital nurses. Informal carers • The emotional state would be improved in informal caregivers of patients with moderate-severe RRMS who have this affected dimension. • The care burden of informal caregivers would be increased by accompanying patients with RRMS to healthy habits visits. |
13. Coordination between primary care medicine and other specialists involved in the follow-up of the disease, through direct contact routes. | Objective: To improve the quality of care for patients and avoid unnecessary displacements or erroneous referrals. Activity: Promotion of the figure of the consultant specialist, in such a way that each PCM can contact the corresponding professional at its reference hospital, directly, mainly by telephone or through the digital medical record. | • National Health System • Primary Care Medicine • Health specialists involved in monitoring the disease • Patients with PFMS • Informal carers | National Health System • Unnecessary visits to neurology professionals by PFMS patients would be avoided. Patients with PFMS • Labour productivity would be improved in those working patients by not having to complete unnecessary visits. Informal carers • The care burden for the caregivers would be reduced, since they do not have to accompany the patients to unnecessary visits. |
14. Care and treatment of collateral symptoms and education for their management. | Objective: To control the collateral symptoms suffered by patients with PFMS. Activity: For each patient with PRMS, completing four visits per year to specialist nurses specifically aimed at this objective. | • Nurses specialised in MS • Patients with PFMS • Informal carers | Patients with PFMS • The loss of employment linked to MS in working-age patients would be reduced. The main reasons MS patients attribute to job loss are related to the ineffective management of MS symptoms in the workplace, rather than factors directly related to the workplace. • Quality of life would be improved through the improvement of urinary symptoms. We have highlighted this co-morbidity since it is associated with a great loss of quality of life. • The emotional state of patients with PFMS, linked to previous returns, would be improved. • There would be losses in labour productivity in working patients, as a consequence of attending these visits. Informal carers • The burden of care for patients with PFMS would be reduced by slowing down disease progression. • The burden of caring for caregivers would be increased, linked to them accompanying patients to the visits. |
15. Access to treatment for patients with PFMS not currently being treated. | Objective: To provide early treatment of patients with PFMS. Activity: Treatment of patients with PFMS who do not currently receive hospital DMTs. This proposal only includes the treatment of patients with PFMS, since patients with PPMS do not currently have any drug with an indication for their typology.b | • National Health System • Regional health services in the autonomous regions. • Neurology professionals • Hospital pharmacy • Patients with PFMS | National Health System, Regional Health Services of the Autonomous Regions and the Hospital Pharmacy • The total costs would be reduced when treating patients with SPMS, that is currently untreated. If a treatment allows no progression in the disability, it is possible to calculate the difference between the cost of treating a moderate patient versus treating a mild patient. Patients with PFMS • Flare-ups would be avoided with the early pharmacological treatment. |
16. Universal access to comprehensive rehabilitation. | Objective: To improve physical, cognitive, psychic symptoms ... that ultimately improves the disability and quality of life of patients. Activity access of all patients with FPMS to the following resources, if required: • 1 annual visit to a neuropsychologist • 10 annual visits to a psychologist • 60 physiotherapy sessions per year • 12 annual sessions of occupational therapy • 1 annual visit to a speech therapist • 1 annual visit to a social worker (broken down in Proposal 17) | • Neuropsychology, psychology, physiotherapy, occupational therapy, speech therapy and social work professionals • Patients with PFMS • Informal carers | Patients with PFMS • The emotional state of the patients would be improved by reducing anxiety, a consequence of visits to the neuropsychology and psychology departments. • The motor status of the patients would be improved, as a result of visits to physiotherapy. • Fatigue would be reduced in patients with PFMS. • There would be losses in labour productivity in working patients, as a consequence of attending these visits. Informal carers • The burden of patient care would be reduced as a result of improved motor status. • The burden of patient care would be increased, linked to accompanying patients to the visits. |
17. Improvement in social protection, ensuring direct contact with social work. | Objective: To improve the social protection of patients, through the detection, assessment and diagnosis of the needs linked to MS and the disability status. In addition, to facilitate the link with MS societies as advocators for the social needs and QoL services provider. Activity: An annual visit to the social work service for all patients with PFMS. | • Social work professionals • Patients with PFMS • Informal carers • MS societies | Patients with PFMS • If they were recognised as having at least 33% disability, unemployed PFMS patients would improve their work productivity as a result of MS, since they could access a reserved position and working PFMS patients would maintain their labour productivity. • The work environment would be improved, from the subjective perception of the patient. • Mobility would be improved, from the subjective perception of the patient. • Family relationships would be improved, from the subjective perspective of the patient. • There would be losses in labour productivity in working patients, as a consequence of attending these visits. Informal carers • The burden of care would be reduced, in relation to the improvement of the patient. • The burden of caring for caregivers would be increased, linked to them accompanying patients to the visits. |