Health care pathways after severe TBI: lessons from the PariS-TBI study

 

Authors:  Claire Jourdan, MD, PhD1,2, Eleonore Bayen, MD, PhD3,4, Philippe Azouvi, MD, PhD1, 2

1. APHP - Hôpital Raymond Poincaré, Service de Médecine Physique et de Réadaptation, Garches, France. 2. HANDIReSP EA 4047, Université de Versailles Saint-Quentin, UFR des Sciences de la Santé – Simone Veil, 2 avenue de la Source de la Bièvre, 78180 Montigny-Le-Bretonneux, France.  3. Université Pierre et Marie Curie, Paris, France.  4. APHP - Hôpital Pitié-Salpêtrière, Service de Médecine Physique et de Réadaptation, Paris, France

 

 Introduction - Rationale for research on TBI care in the Parisian area

Acute TBI care has dramatically improved in France during past decades, following international guidelines and French national recommendations (NAAEH recommendations, 2000). In line with these changes, post-acute TBI was also structured around national guidelines and legislations(DHOS, 2004), with for instance recommendations for systematic neuro-rehabilitation after severe brain traumas.

In parallel, several publicly-funded specialized structures to facilitate community re-entry of persons with brain injuries have been created in France in the late 90’s. Missions of “Evaluation, retraining, social and vocational orientation units” (UEROS)were to provide care management, rehabilitation, retraining in order to “enhance genuine social and vocational reintegration’’(Hamonet-Torny, Fayol, Faure, Carrière, & Dumond, 2013). Other programs financed units aimed at mobile rehabilitation and care management at persons living places. Residential facilities specialized for brain injury and day programs were created in order to enhance patients’ participation in leisure and socialization. The home care financing system was more recently reconstructed with a special allowance for persons under 60 years old, mainly devoted to publicly funded formal care (disability compensation benefit).

Persons with brain injuries sequelae were referred to these programs or to brain injury clinics by various professionals, including general or specialist practitioners, social workers, work support organizations, or the Social Security. As referrals to these programs increased, care providers found out that a significant proportion of patients were referred several months or years post-injury. Previous care had seemingly not been optimal, with either no neuro-rehabilitation at the initial phase, or no proper follow-up, or inadequacy of services provided to persons’ needs. Efficient home health care organization including professional care to replace informal caregivers was also not the norm, either at discharge time-point or later. Medical, social or financial situations could have considerably deteriorated and were sometimes challenging to correct at such late stages.

The need for epidemiological and outcome data for TBI in France triggered the project of a large regional observational cohort study on severe TBI in 2005 in the Parisian area called the PariS-TBI study. Given the above-mentioned issues, investigators included detailed information on TBI care in the prospective data collection scheme. Care was here understood as including acute and post-acute medical care, rehabilitation therapies, interventions to enhance participation, and formal and informal home care. Goals were to obtain objective quantitative data on care provided to persons with severe TBI and to suggest ways to improve TBI care in the Parisian area.

TBI care in the Parisian (Île-de-France) area

The Île-de-France area is a 12.000 km² predominantly urban area of 11.6 million inhabitants, which comprises the city of Paris and the surrounding suburbs. There are 6 level-I trauma centers in Paris, but acute TBI care can be provided in other hospitals, depending on clinical necessities, accident site and bed availabilities. After intensive care, trauma patients are usually transferred to neurosurgery or orthopedics departments; other medical or surgical wards can be involved. Most patients are then discharged to rehabilitation wards; direct referral from intensive care to rehabilitation is not uncommon.Most rehabilitation wards are in separate hospitals, and referrals to rehabilitation rely both on acute care practitioners who send applications and on practitioners of rehabilitation departments who analyze applications. On the long term, clinical follow-up and prescriptions for ambulatory services are performed by general practitioners or practitioners involved in the previous care pathway (most of the time PMR practitioners).

Financing of care relies on the French unique-payer healthcare system (Social Security) which provides specific reimbursement in case of severe TBI. Inpatient or day-hospital rehabilitation is reimbursed and can include most services, depending on rehabilitation facilities. Domiciliary-based rehabilitation is reimbursed for physiotherapy and speech therapy only. In the ambulatory setting, cognitive evaluation and training is generally performed by speech therapists. Financing of home care and of the above-mentioned community-based programs depends on regional funds; persons need to apply for these at the Departmental Disabled Persons Office (MDPH), which coordinates several disability-related state aids for permanent residents aged between 0 and 60y. Other regional funds are available for older individuals (Chevreul, Durand-Zaleski, Bahrami, Hernández-Quevedo, & Mladovsky, 2010).

Description of the PariS-TBI study

The PariS-TBI study was planned as a regional inception cohort study, from July 2005 to May 2007. Individuals aged 15 or more were consecutively recruited on the accident scene, if they had sustained a severe TBI (initial Glasgow Coma Scale (GCS) (Teasdale & Jennett, 1974) ≤ 8, in the absence of other causes of coma). No exclusion criteria were used. A total of 504 patients were included (76% men, mean age 42 +/- 20 years). Initial brain injury severity was distributed as follows: 207 patients (41%) had GCS of 3 or 4; 148 (29%) patients had GCS scores of 5 or 6; 139 (28%) had GCS of 7 or 8. Acute care mortality was 49%, and survivors’ mean time to follow command was 12 +/- 11 days. Characteristics of acute care survivors are provided in table 1.

Table 1. Study sample characteristics (n = 504)

 

Counts (%) or mean +/- SD [min –max]

Missing data

Count (%)

Gender

   

Female

119 (23.6%)

0 (0%)

Male

385 (76.4%)

Age

42.4 +/- 20.4 [15.2 - 98.1]

3 (0.6%)

Professional status

   

Employed

169 (33.5%)

133 (26.4%)

Student

65 (12.9%)

Retired

91 (18.1%)

Unemployed

46 (9.1%)

Pre-injury alcohol abuse

   

No

360 (71.4%)

62 (12.3%)

Yes

82 (16.3%)

Injury mechanism

   

Road traffic accident

266 (52.8%)

30 (6%)

Accidental fall

116 (23%)

Non accidental fall

67 (13.3%)

Aggression

25 (5.0%)

Initial Glasgow Coma Scale

5.2 +/- 1.9 [3 - 8]

10 (2.0%)

Injury Severity Score

33.4 +/- 14.8 [9 - 75]

32 (6.3%)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Outcome assessments were performed at one and four years post-injury by neuropsychologists (see flow chart on figure 1). The one-year assessment addressed overall disability and executive functions through telephone interviews with patients and their proxies.The four-year assessment was conducted through face-to-face interviews. It covered a broader range of impairments, activities and participations, and a questionnaire on care provision. Proxies’ interviews assessed formal and informal care, caregiver burden, and caregiver quality of life.

Fig1_Flow_chart.jpg

Figure 1. Flow chart of the PariS-TBI study

Overall post-injury disability was high as expected given the severity of the sample. Improvements did take place between the two assessments (figure 2), but only 7% of participants had upper-level good recovery at the four-year end-point. The follow-up of the cohort is currently ongoing, through a new face-to-face eight-year outcome evaluation.

 

Fig_2.jpg
Figure 2. 1- and 4-year outcome. The figure presents the percentage of patients in each of the outcome categories of the GOS-extended. SD= Severe Disability; MD= Moderate Disability; GR= Good recovery

Descriptive results on post-acute TBI care

The complexity of care pathways was illustrated by the cohort’s results. Twenty different intensive care departments were involved with care of one or more patients. Patients were then transferred through one to six different acute care departments (ex. neurosurgery then orthopedics then neurology) before acute care discharge. In the whole region, 47 rehabilitation departments (including 17 neuro-rehabilitation departments) had been involved in care of the cohort’s patients. Few patients had followed similar care pathways.

Regarding post-acute care referral, two thirds of the sample were admitted to a rehabilitation facility, while the remaining third was directly discharged to a living place (home or nursing home)(Jourdan et al., 2013). Among patients referred to a rehabilitation facility, 71% were referred to specialized neurorehabilitation departments and 29% to non-specialized rehabilitation units.

Placeof acute care discharge was related to preceding acute care pathway. Proportions of referral to rehabilitation depended significantly on the specialty of the last unit of acute care. While 71% of patients discharged from intensive care and 80% from orthopedics were referred to rehabilitation, only 44% of patients discharged from non-neurological medical departments were referred to rehabilitation. Thus the initial decision of intensive care practitioners to transfer patients to medical wards could result in lower chances for patients to have access to rehabilitation.

Some delays in the referral processes were apparent. While mean length of stay in intensive care was 26 +/- 21 days, admissions to rehabilitation were performed far later at 58 +/- 60 days post-injury, with a maximum of 616 days. Qualitative comments on the cohort’s observational charts revealed that reasons for transfers to acute care departments were often “waiting for access to a rehabilitation department”.

Declarative data from the four-year follow-up provided information on provision of several services(Jourdan, Bayen, Darnoux, et al., 2015), which can be analyzed in the light of the International Classification of Functioning, Disability and Health(WHO, 2012). Interventions targeting impairments were frequently provided: 80% of patients had received medical follow-up for TBI consequences (63% by a PMR practitioner or a neurologist); 78% had received physiotherapy, 61% speech therapy. Significant relationships existed between presence of pain, motor, speech, language impairments and the provision of these services. But surprisingly, measures of cognitive impairments were not significantly related to provision of any services. Interventions to improve activities and participations were less frequent: only 50% had received occupational therapy, 21% had benefitted from specialized community re-entry support by a UEROS unit. Few patients had benefited from stays in specialized residential homes, or from day programs.

Patients had been mainly discharged home without adequate publicly funded formal care. Although 56% of patients living at home four years after the accident showed no need for any type of assistance in activity of daily living, the remaining 44 % had a familial caregiver helping a mean 5.6 hours per day. This high provision of informal care at home contrasted with the low one of formal professional care amounting 17% for these disabled patients, and with a mean 1.5 hours per day only.

 

Post-TBI care and environmental factors

According to the ICF model, handicap is related to contextual factors – personal or environmental - which can be barriers or facilitators. Results from PariS-TBI revealed that contextual factors moreover influenced services received by patients, independently of clinical situations.

Post-acute referral to rehabilitation was less likely for patients who were living alone, had pre-injury alcohol abuse, or from lower income professional categories (Jourdan et al., 2013). Referral to specialized neuro-rehabilitation (versus non-specialized rehabilitation) was again less likely for patients with pre-injury alcohol abuse or who were not working pre-injury.

Regarding provision of individual post-acute services (Jourdan, Bayen, Darnoux, et al., 2015), impact of environmental factors appeared smaller, and services such as rehabilitation therapies, medical follow-up, or community re-entry support seemed dependant on clinical situations rather than on contextual factors. Geographical situation in low- or high-income cities was not related to provision of services. Provision of speech therapy was however significantly less frequent for isolated persons, which suggested a role of ICF “support and relationship” factors. It was also more frequent in cities with higher medical density, which is explained by the dependence of rehabilitation therapies on medical prescriptions, and suggests a role of “health services, systems and policies”. A major effect of “health services, systems and policies” appeared in the relatively low frequencies of occupational therapy (50%) and psychotherapy (41%), since these services are reimbursed in the institutional setting only.

The low provision of formal care in patients benefiting from an efficient informal caregivers network could illustrate that family acts as a "facilitator" on which the health care system deliberately rests to spare costs. Also, the provision of formal care devoted to all types of disability within the French system was shown much higher in case of physical deficiencies than in case of cognitive-behavioral impairment, thereafter further implementing the concept of "invisible handicap" in home care eligibility to the detriment of patients with TBI.

Environmental factors also played a role on the cohort follow-up itself. Attrition rates, typically high in brain injury cohorts15, were close to 40%. A specific focus on reasons and determinants for loss-to-follow-up(Jourdan, Bayen, Bahrami, et al., 2015) revealed that while severity markers where not determinant, socio-environmental factors (violence-related mechanism of trauma, alcohol history, and unemployment) were related to loss-to-follow-up at both endpoints. It is likely that patients who cannot be assessed in outcome studies might also be challenging to follow and treat adequately in clinical practice. Environmental factors had thus presumably an impact on continuity of care and follow-up.

 

Conclusion - Implications for TBI care organization

Several weaknesses of TBI care in the Parisian area were highlighted here. First the complexity and multiplicity of care pathways in the area causes barriers in providing homogeneous, adequate care for all patients. Complexity of TBI care pathways are however also a response to specificities of the pathology itself, which causes a multiplicity of impairments and various evolution patterns. The French PRM Society have elaborated guideline documents(Pradat-Diehl et al., 2012) in order to define and structure main care pathways depending on several clinical categories and environmental factors.

Another difficulty illustrated here was the insufficiency of awareness of cognitive impairments, and of activities and participation in the delivery of post-acute care. Since the implementation of most specialized programs in the late 90’s, awareness of their utility for persons with brain injury has presumably grown. Some of the reintegration challenges in this pathology have been addressed, with specific assessment tools, promotion of re-entry programs, and taking into account proxies’ needs(Truelle, Wild, Onillon, & Montreuil, 2010).

Organizational changes have also taken place in the Parisian area. A national compulsory web-based software for post-acute referrals has been implemented (Via-Trajectoire®)(Deblasi, 2012). Visits of PMR practitioners in brain injury acute care departments have become more systematic. More recently a regionally-funded care network to help in the orientation and rehabilitation of severe TBI patients has started in the Parisian area(Ruet, Jourdan, Weiss, & Pradat-Diel, 2013). A new observational cohort reproducing PariS-TBI methodology would now be interesting to observe subsequent changes in TBI care pathways.

 

Acknowledgments

The authors thank all members of the CRFTC Steering Committee (Centre Ressource Francilien des Traumatisés Crâniens) for their valuable help. The first part of this study was funded by a grant from the French Ministry of Health (Programme Hospitalier de Recherche Clinique 2004, AOM04084) and sponsored by AP-HP (Département de la Recherche Clinique et du Développement). The second part of this study was funded by a grant from the Institut de Recherche en Santé Publique (IRESP). 

 

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Corresponding Author

Dr. Claire Jourdan, Service de Médecine Physique et de Réadaptation, Hôpital Raymond Poincaré, 104, bd Raymond Poincaré, 92380, Garches, France. Tel: + (33)1 47107082 Fax: + (33)1 47107726. Email: claire.jourdan@rpc.aphp.fr / claireinet@gmail.com