Abstract
This document is part of a series of documents designed by the French Physical and Rehabilitation Medicine Society (SOFMER) and the French Federation of PRM (FEDMER). These documents describe the needs for or a specific type of patients; PRM care objectives, human and material resources to be implemented, chronology as well as expected outcomes. “Care pathways in PRM” is a short document designed to enable the reader (physicians, decision-maker, administrator, lawyer or finance manager) to quickly apprehend the needs of these patients and the available therapeutic care structures for proper organization and pricing of these activities. The patients after spinal cord injury are divided into five categories according to the severity of the impairments, each one being treated according to the same six parameters according to the International Classification of Functioning, Disability and Health (WHO), while taking into account personal and environmental factors that could influence the needs of these patients.
Résumé
Le présent document fait partie d’une série de documents élaborés par la Société française de médecine physique et de réadaptation (Sofmer) et la Fédération française de médecine physique et de réadaptation (Fedmer). Ces documents décrivent, pour une typologie de patients, les besoins, les objectifs d’une prise en charge en MPR, les moyens humains et matériels à mettre en œuvre, leur chronologie, ainsi que les principaux résultats attendus. Le « parcours de soins en MPR » est un document court, qui doit permettre au lecteur (médecin, décideur, administratif, homme de loi ou de finance) de comprendre rapidement les besoins des patients et l’offre de soins afin de le guider pour l’organisation et la tarification de ces activités. Les patients après lésion médullaire sont ainsi divisés en cinq catégories selon la sévérité des déficiences, chacun étant traité selon les six mêmes paramètres tenant compte, selon la Classification internationale du fonctionnement, des facteurs personnels et environnementaux pouvant influencer les besoins.
1
English version
This document is part of a series drafted by the French Physical and Rehabilitation Medicine Society (SOFMER) and the French Physical and Rehabilitation Medicine Federation (FEDMER). The purpose of these papers is to provide arguments for discussions about the future tarification à l’activité (T2A, or French diagnosis related group pricing) in physical and rehabilitation medicine (PRM) structures by suggesting alternative approaches that complement the T2A system. These “care pathway” documents generally describe patient needs by patient type and PRM treatment pathway objectives. They also recommend human and material resources to be implemented. The documents are intentionally succinct to make them easy to read and use, and are drafted based on the opinion of a group of experts. These experts issue the opinion after analyzing the regulatory texts and guidelines in effect in France and examining the literature . Finally, the documents are approved by the SOFMER.
Care pathways are not just simple pricing tools; they are so much more because they can help define the true content of the fields of expertise of our specialty. For each pathology, patients are first grouped into general impairment severity categories. Then, each category is broken down in accordance with the International Classification of Functioning, Disability and Health and its system of personal and environmental parameters likely to influence the outcomes of the “optimal” baseline pathway.
Paraplegia and tetraplegia are the source of a range of multi-system impairments, i.e. involving several organs and physiological functions, that result from spinal cord or cauda equina injury (of traumatic or medical origin). This collection of multisystem impairments, which largely contribute to potential morbidity, requires a specific organization of healthcare: the acute phases necessitate treatment in medical, surgical and obstetric (MSO) care centers, while the rehabilitation phases require management in PRM departments or facilities that specialize in spinal cord injuries and serve as regional referral centers. Treating these patients imposes specific healthcare and rehabilitation programs that start on the day the trauma occurs and continue throughout a patient’s life. PRM facilities need to treat at least 20 to 25 new patients per year. The French Academy of Medicine recommends having one or two acute centers per region that coordinate with two to three follow-up neurological PRM centers in that region .
The main objective of the treatment is to succeed in initiating an early, customized healthcare and lifestyle plan based on three major principles:
- •
prevent and treat impairments and medical complications from the first few days, and continuing such efforts for life with specialized follow-up care;
- •
provide physical therapy and rehabilitation to promote optimal neurological recovery and functional independence;
- •
provide social and professional rehabilitation.
1.1
Main multisystem impairments
The main multisystem impairments related to spinal cord injury and common to paraplegia:
- •
sensory and motor impairment;
- •
neuro-urological impairment;
- •
neurodigestive impairment;
- •
neurosexual impairment;
- •
fragility of the skin and underlying tissues and a subsequent persistent risk of pressure ulcer;
- •
neurovegetative impairment of the cardiovascular system;
- •
neurorespiratory impairment;
- •
neuroorthopedic and spastic impairment;
- •
nociceptive pain and neuropathic pain;
- •
bone demineralization and fractures.
1.2
The classification of paraplegias and tetraplegias into five different categories
Tetraplegia is defined by its cervical neurological level in relation to the injury site, from C1 to C8. Paraplegia is defined by its thoracic level (T1 to T12), lumbar level (L1 to L5) or sacral level (S1 to S5). Each neurological level indicates specific sensory and motor impairments and, with physical therapy and rehabilitation, a certain optimal degree of functional independence with respect to activities of daily living. It is possible to group several neurological levels within a single category because they require similar treatment modalities. There are five different categories:
- •
high tetraplegia with mechanical ventilation, neurological levels C1, C2, C3;
- •
high tetraplegia, C4, C5, C6;
- •
low tetraplegia, C7 and C8;
- •
high paraplegia, T1 to T9;
- •
low paraplegia, T10 to T12, L1 to L5, S1 to S5.
Each category is analyzed according to six personal or environmental complexity parameters that justify specific skills and resources, sometimes even just extra time to do something, which will generate additional costs and require indicators in the future medical information system (PMSI).
1.3
Personal or environmental complexity parameters
The six personal or environmental complexity parameters are:
- •
the incomplete nature of the injury and paralysis;
- •
the age, past medical history, associated pathologies, and specific etiologies of the injury;
- •
the associated prior psychiatric or psychological disorders that affect the ability to function;
- •
the need to adapt the material environment;
- •
the inappropriate or insufficient nature of the medical and paramedical network;
- •
the social difficulties.
1.4
Category 1: high tetraplegia with mechanical ventilation, neurological levels C1, C2, and C3
1.4.1
Main characteristics of functional independence for these patients
Patients are completely or partially dependent on mechanical ventilation and completely dependent on someone else for all activities of daily living (ADLs).
1.4.2
Different treatment phases
1.4.2.1
Treatment in a medical, surgical and obstetric facility
Objectives: assess, prevent and provide early treatment for common impairments, such as respiratory dysfunction. Initiate early rehabilitation. Transfer to a PRM facility.
Resources: advance consultations with a PRM physician and participation in tetraplegia training at the MSO facility. Daily respiratory and physical therapy. Occupational therapy to provide environmental control. Ventilatory assistance using medical devices that are compatible with a PRM facility and/or a home.
Duration of stay in an MSO facility: the intensive care unit stay is often prolonged because other MSO units are generally not equipped to handle such patients. There are also difficulties in admitting patients to PRM facilities (depending on the region). Admission to a PRM facility is possible if the patient is stable on a “home” ventilator. In practice, this time frame before PRM admission is usually at least three months due to the need to obtain medical stability, and respiratory and neurovegetative stability in particular. Transferring patients to a post-critical care rehabilitation (PCCR) service, as certain regional healthcare organization schemes (RHOS) describe, can be an intermediate phase and facilitate discharge from an MSO.
1.4.2.2
Treatment in a referral physical and rehabilitation medicine facility
Objectives: evaluate, prevent and treat common impairments and medical complications, and in particular maintain respiratory stability and urinary equilibrium. Teach patients to move around in an electric wheelchair and master automation and communication systems. Provide physical therapy for the residual motor capabilities. Make the announcement of the prognosis and the handicap. Educate the patient and the patient’s family about the patient’s therapy. Initiate early socioprofessional rehabilitation. Organize the return to home or to an alternative location.
Resources and organization: PRM teams that can handle ventilated patients (trained personnel, satisfactory medical monitoring, effective alarm systems, oxygen therapy and tracheal suctioning equipment). Medical and surgical consultations. Integrated or accessible technical platform for functional exploration, especially in neuro-urology. A technical platform for a program of daily neurological physical therapy and rehabilitation for at least two hours a day (physical therapy, occupational therapy, adapted physical activity, speech therapy, psychological and social services, professional rehabilitation services). Education for patients, families and assistants about the patient’s therapy.
Duration of stay in a PRM facility: patients stay for one to two years, depending on the difficulties encountered related to ventilator dependence and organizing the return home or the placement in a specialized long-term care facility.
1.4.2.3
Life at home or in an institution and follow-up
Objectives: prevent and monitor long-term complications, especially respiratory and urinary complications. Monitor technical aids and the functional independence of the patient.
Resources: PRM medical follow-up every three months. Adapted material and human environment (accessible, automated, tracheal and ventilatory monitoring and daily nursing care, someone present 24/7). Home hospitalization (HAD) and rehabilitation are justified. Physical therapy three times a week, or even several times a day if there are complications. Social services follow-up. Readmission to a specialized PRM if there are complications or if special treatment is necessary.
1.4.3
The factors that modify treatment pathways according to six personal or environmental complexity parameters
1.4.3.1
The incomplete nature of the tetraplegia
Patients with incomplete motor deficits, i.e. grades C and D of the ASIA Impairment Scale, can regain respiratory independence and warrant prolonged physical therapy to optimize neurological recovery.
1.4.3.2
The age, associated pathologies, and specific etiologies
It is difficult to organize a return home for patients over the age of 60 because French personalized autonomy benefits for dependent elderly people are insufficient to pay for the necessary human assistance. It is difficult to admit elderly people with multiple pathologies into follow-up care and rehabilitation facilities (FRF) and housing structures (dependent care facilities and extended care facilities) due to their respiratory dependence. In spinal cord injury patients with head trauma, the motor and neuropsychological aspects can delay or prevent the acquisition of optimal functional independence.
1.4.3.3
The associated prior psychiatric or psychological disorders that affect the ability to function
Serious, prior psychiatric or psychological pathologies very often diminish patient participation in treatment, thereby prolonging the rehabilitation process and FRF stays. This point demonstrates the need for strong psychiatric and psychological support in PRM facilities, and even services that provide coverage for and combine the two specialties.
1.4.3.4
The need to adapt the material environment
The time needed to do the construction work or change housing can prolong FRF stays.
1.4.3.5
The inappropriate or insufficient nature of the medical and paramedical network
Not being admitted to a referral PRM facility prolongs intensive care unit stays. There are difficulties in finding qualified care personnel, which can prolong PRM stays. Once at home, a patient can be confronted with ignorance of the medical milieu, difficulties gaining access to paraclinical testing and trouble obtaining healthcare transport, which can lead to difficulties in obtaining healthcare outside of the hospital setting. Mechanical ventilation can make it impossible for a patient to be placed in a specialized long-term care facility.
1.4.3.6
The social difficulties
Returning home is difficult when patients are socially isolated and their family circle is not invested in the project. It is necessary to find social indicators to evaluate the stay. The administrative and social status does not enable patients to go home, acquire housing or get placement in a residence.
1.5
Category 2: high tetraplegia, cervical neurological levels C4, C5, C6
1.5.1
Main characteristics of functional independence for these patients
Patients in this category breathe independently, but may have a tracheotomy. Chronic respiratory insufficiency persists with a high risk for complications, justifying long-term respiratory therapy. Patients are dependent on human and technical resources for physical assistance in ADL. They usually move around in electric wheelchairs. Functional surgery of the upper limbs may be beneficial to these patients.
1.5.2
Different treatment phases
1.5.2.1
Treatment in an medical, surgical and obstetric facility
Objectives: same as category 1, point 2.1.
Resources: same as category 1, point 2.1. Wean off of ventilation and the tracheotomy when possible.
Duration of stay in an MSO facility: patients are transferred to a referral PRM facility once their respiratory situation is stable (spontaneous ventilation with or without tracheotomy, partially assisted ventilation is sometimes necessary). In practice, this time frame is rarely less than six weeks due to the need to obtain medical stability, and especially respiratory and neurovegetative stability. It may be useful to transfer patients to a PCCR while ventilation is still necessary.
1.5.2.2
Treatment in a referral physical and rehabilitation medicine facility
Objectives: provide medical treatment for specific impairments and complications, particularly respiratory, vegetative and urinary complications. Ensure optimal functional independence in Activities of Daily living, including mastery of automation and communication systems. Provide physical therapy for the residual motor capabilities. Announce the prognosis and the handicap. Educate patients, families and assistants about the patient’s therapy. Provide early socioprofessional rehabilitation. Organize the return to home or to an alternative location.
Resources and organization: specialized PRM team. Medical and surgical consultations. Integrated or accessible technical platform for functional exploration. At least two hours a day of daily neurological therapy and rehabilitation (physical therapy, occupational therapy, adapted physical activity, speech therapy, psychological and social services, professional rehabilitation services). Human assistance at the home, adaptations of or change in home. Education for the patient and professional aides about the patient’s therapies.
Duration of PRM stay: 9 to 18 months.
1.5.2.3
Life at home or in an institution and follow-up
Objectives and resources: same as category 1, point 2.3. Let us specify that even if tracheal ventilation is no longer systematic in these patients, the risk for respiratory complications is high. This justifies long-term medical PRM follow-ups at least twice a year. PRM units in day hospitals can be visited for check-ups and physical therapy follow-ups once a year or every two years. A home nursing service is often necessary and justified. Treatment through a medicosocial support service for handicapped adults can prove to be useful when there are complex psychosocial issues.
1.5.3
The factors that modify treatment pathways according to six personal or environmental complexity parameters
1.5.3.1
The incomplete nature of the paraplegia
Patients with incomplete motor deficits, i.e. grades C and D of the ASIA Impairment Scale, can sometimes reach a much higher level of functional independence, which can justify prolonged physical therapy (during conventional hospitalization, and optimally through day hospitalization) as well as follow-up stays. The medical monitoring remains the same.
1.5.3.2
The age, past medical history, associated pathologies, and specific etiologies
A higher age at the time of injury and ageing with tetraplegia decreases expected functional independence for a given level of injury and generates greater need for human assistance. It is difficult to organize a return home for patients over the age of 60 because French personalized autonomy benefits for dependent elderly people are insufficient to pay for the necessary human assistance. Coordination with follow-up care and rehabilitation facilities (FRF) and housing structures (dependent care facilities and extended care facilities) is difficult in practice (due to the heavy patient management and patient specificities). In spinal cord injury patients with head trauma, the motor and neuropsychological aspects can delay or prevent the acquisition of optimal functional independence. Non-evolutive neoplastic pathologies and morbid obesity require an adjustment in functional independence objectives and acquisition times. Pathologies that require other treatments (e.g. chemotherapy, dialysis) limit physical therapy. All of these particularities can prolong a PRM hospital stay.
1.5.3.3
The associated prior psychiatric or psychological disorders that affect the ability to function
Same as category 1.
1.5.3.4
The need to adapt the material environment
Same as category 1.
1.5.3.5
The inappropriate or insufficient nature of the medical and paramedical network
There are difficulties in finding qualified care personnel, which can prolong PRM stays. Once at home, a patient can be confronted with ignorance of the medical milieu, difficulties gaining access to paraclinical testing and trouble obtaining healthcare transport, which can lead to problems in obtaining healthcare outside of the hospital setting.
1.5.3.6
The social difficulties
Same as category 1.
1.6
Category 3: low tetraplegia, cervical neurological levels C7 and C8
1.6.1
Main characteristics of functional independence for these patients
Low tetraplegics have respiratory independence but still have a high risk for respiratory problems (long-term respiratory therapy). They can have partial or total functional independence. They move around in manual wheelchairs and use electric wheelchairs in the outside world. Functional upper limb surgery may be of interest.
1.6.2
Different treatment phases
1.6.2.1
Treatment in an medical, surgical and obstetric facility
Objectives and resources: same as category 2, point 2.1.
Duration of stay in an MSO facility: patients are transferred to a referral PRM facility once their respiratory situation is stable (spontaneous ventilation without tracheotomy in principal). In practice, this time frame is rarely less than four weeks due to the need to obtain medical stability, and especially respiratory and neurovegetative stability.
1.6.2.2
Treatment in a referral PRM facility
Objectives, resources and organization: same as category 2, point 2.2.
Duration of PRM stay: 9 to 12 months.
1.6.2.3
Life at home or in an institution and follow-up
Objectives and resources: same as category 2, point 2.3.
1.7
The factors that modify treatment pathways according to six personal or environmental complexity parameters
Same as category 2 for each of the parameters:
- •
the incomplete nature of the paraplegia;
- •
the age, medical history, associated pathologies, and specific etiologies;
- •
the associated prior psychiatric or neurotic disorders that affect the ability to function;
- •
the need to adapt the material environment;
- •
the inappropriate or insufficient nature of the medical and paramedical network;
- •
the social difficulties.
1.8
Category 4: high paraplegia, thoracic neurological levels T1 to T9
1.8.1
Main characteristics of functional independence for these patients
The patients should regain complete independence in all ADL and be able to move around in manual wheelchairs.
1.8.1.1
Different treatment phases
1.8.1.1.1
Treatment in an medical, surgical and obstetric facility
Objectives and resources: they are the same as category 3, but the respiratory and vegetative problems are much less severe in this category. The physical therapy should nevertheless be pursued on a daily basis and have a respiratory and orthopedic focus.
Duration of stay in an MSO facility: transfer to a referral PRM service is generally possible before the end of the first month, except when there are medically unstable complications or associated injuries (frequently seen in patients who experienced multiple traumas).
1.8.1.1.2
Treatment in a referral PRM facility
Objectives, resources and organization: These are the same as category 3. Complete functional independence is the objective of the rehabilitation program. Adapted driving and making the appropriate changes to the driver’s license should be systematically mentioned and suggested.
Duration of PRM stay: 4 to 9 months.
1.8.1.1.3
Life at home or in an institution and follow-up
Objectives and resources: same as category 3.
1.8.2
The factors that modify treatment pathways according to six personal or environmental complexity parameters
Same as category 2 for each of the parameters:
- •
the incomplete nature of the paralysis;
- •
the age, medical history, associated pathologies, and specific etiologies;
- •
the associated prior psychiatric or psychological disorders that affect the ability to function;
- •
the need to adapt the material environment;
- •
the inappropriate or insufficient nature of the medical and paramedical network;
- •
the social difficulties.
1.9
Category 5: low paraplegia (including Cauda Equina Syndrome), thoracic, lumbar and sacral neurological levels T10 to S5
1.9.1
Main characteristics of functional independence for these patients
These patients are completely independent in activities of daily living. They move around in manual wheelchairs and, for the lowest paraplegias, they may functionally walk for varying distances with more or less complex orthopedic orthoses or canes.
1.9.2
Different treatment phases
1.9.2.1
Treatment in an medical, surgical and obstetric facility
Objectives and resources: same as category 4, with physical therapy that focuses only on sensorimotor and orthopedic issues. There may also be early verticalization and walking when possible.
Duration of stay in an MSO facility: as short as possible, may even be less than three weeks.
1.9.2.2
Treatment in a referral PRM facility
Objectives, resources and organization: same as category 4.
Duration of PRM stay: from 3 to 6 months; in the lowest paraplegias, where ambulatory independence is rapidly achieved, PRM services in day hospitals or elsewhere can even be organized.
1.9.2.3
Life at home and follow-up
Objectives: maintain functional gains and prevent complications. Monitor technical aids and equipment for walking.
Resources: adapted material environment (accessibility). Long-term specialized medical follow-up remains necessary, especially for neurological impairments that have the same potential severity as other categories. Orthopedic physical therapy for maintenance twice a week and/or self physical therapy. Conventional or day hospitalization for check-ups and physical therapy follow-ups every two years. Intervention and follow-up by social services.
1.9.3
The factors that modify treatment pathways according to six personal or environmental complexity parameters
1.9.3.1
The incomplete nature of the paralysis
Patients with incomplete motor deficits, i.e. grades C and D of the ASIA Impairment Scale, can regain higher levels of independence. The incompleteness of the motor deficit (AIS D) enables daily functional walking, thereby warranting prolonged physical therapy (during conventional hospitalization, and optimally through day hospitalization) and follow-up stays. The medical follow-up remains the same.
1.9.3.2
The age, past medical history, associated pathologies, and specific etiologies
Same as category 2.
1.9.3.3
The associated prior psychiatric or psychological neurotic disorders that affect the ability to function
Same as category 2.
1.9.3.4
The need to adapt the material environment
For functional walking patients, the environment can be less problematic than for other patient categories.
1.9.3.5
The inappropriate or insufficient nature of the medical and paramedical network
In this category, the difficulties related to the ignorance of independent healthcare aids about paraplegia are less troublesome and do not affect, or barely affect, the duration of PRM hospitalizations. This kind of problem can appear in the event of complications once at home and require subsequent PRM readmission if care at home is impossible.
1.9.3.6
The social difficulties
Same as category 2.
Disclosure of interest
The authors declare that they have no conflicts of interest concerning this article.
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