Ten-to-twelve years after specialized neurorehabilitation of young patients with severe disorders of consciousness: A follow-up study

Figures & data

Table 1. Overview of long-term follow-up studies since 2002 of patients in prolonged (>1 month) DOC.

Study	Follow- up	N	Etiology	Assessment Scale DOC	DOC	Age at injury	Rehabilitation/time of Treatment	Assessment scales outcome	Results (% deceased and % consciousness states)	Results (functional) of surviving patients	Results (social)
Lammi et al. (2005)^15	2 to 5 years	20	TBI	WNSSP	MCS	37.9 (14.7) M(SD)	Specialized inpatient brain injury rehabilitation program	WNSSP, DRS, FIM, SPRS	10% deceased 10% MCS	50% independent on ADL, 50% required supervision or physical assistance; 30% severe or greater disability	22% working on a part-time basis; 72% no relationships (remaining marriages: uninjured spouse became caregiver); 44% no contact with old friends
Eilander et al. (2007)^13	2.4 to 15.7 years	90	TBI and nTBI	Class scores of the PALOC-s, using the patients’ medical files	51% VS/UWS 49% MCS at admission	12.6 (0.6- 25) M(range)	Early intensive neuro-rehabilitation Program	DRS, GOSE	19% of TBI and 48% of nTBI deceased; 0% of TBI and 29% of nTBI VS/UWS	51% of TBI and 14% of nTBI completely independent or mildly dependent; 18% of TBI and 50% of nTBI completely dependent	43% of TBI and 29 % of nTBI able to participate in, partly selected, work and school activities
Skandsen et al. (2008)^16	3 to 8 years	37	TBI	Review of medical notes in three categories: oriented, confused, or VS/UWs or MCS	VS/UWS and MCS (not differentiated)	33 (1-88) M(range)	Unknown	GOSE	32% deceased; 8% VS/UWS	52% severely disabled; 24% moderately disabled;	79% remained at a disability pension; 17% were involved in adjusted education; none employed.
Katz et al. (2009)^17	At 1, 2, 3 and 4 years	36	TBI and nTBI	CRS-r	31% VS/UWS 69% MCS	38 (21) M(SD)	Specialized, slow- to-recover brain injury program in an acute rehabilitation hospital	CRS-r, DRS, FIM	8% VS/UWS	28 % achieved household independence	14% returned to work or school, 11% at a full level, or close to premorbid level.
Luauté et al.	At 5	47	TBI and	Retrospectively	VS/UWS (11)	40 (10-85)	Regional	GOS, to	Of the VS/UWS	13 patients	All 13 patients
(2010)^18	years		nTBI	established using information from the medical files	or MCS (36), 1 year after coma onset	M(range)	rehabilitation center or long stay-hospital dedicated to patients in chronic VS/UWS or MCS	which a specific category for MCS was added	patients 9 (82%) deceased, 2 (18%) remained VS/UWS (both young anoxic patients); of the MCS patients 14 (39%) deceased; 9 (25%) remained MCS	(36%) emerged from MCS with severe disabilities.	showed functional communication skills, all but one verbal; 7 stayed at home with assistance, 6 lived in an institution
Estraneo et al. (2010)^19	At 1, 2, 3, and 4 years	50	TBI and nTBI	Using the standard diagnostic criteria^25	VS/UWS > 6 months postonset	51,1 ± 9.6 M(SD)	Comprehensive neurorehabilitati on program to adults in a prolonged state of disordered consciousness	CRS-r, DRS	21 (42% deceased); 17 (34%) VS/UWS; 5 (10%) MCS; 7 (14%) conscious	All showed severe to extremely severe disability	n/a
Nakase- Richardson et al. (2012)^20	At 1, 2 and 5 years	128	TBI	The occurrence of 2 consecutive days of command following as documented in the medical record review	Yes/no conscious	19/24/35 (quartiles)	Inpatient Rehabilitation Centers participating in the TBI Model Systems Programs (TBIMS) National Database	DRS	59% regained ability to follow commands at 1 year, 66% at 2 years, and 74% at 5 years follow -up	n/a	n/a
Eilander et al. (2013)^21	2 to 4.4 years	32	TBI	WNSSP, PALOC-s	VS/UWS (24) or MCS (8) at admission	16 (1.6-25.5) M(range)	Early intensive neuro-rehabilitation program	DRS	4 patients deceased No patients in VS/UWS	None recovered to no disability level; 3 (11%) recovered to mildly to partially disabled; 13 (46%) recovered to moderately disabled; 12 (43%) recovered to moderately severe to extremely disabled	n/a

Abbreviations:

N=Number of patients; DOC=Disorders of Consciousness; SD=Standard Deviation; TBI=Traumatic Brain Injury; nTBI=non-Traumatic Brain Injury; UWS=Unresponsive Wakefulness Syndrome; MCS=Minimally Conscious State; WNSSP=Western Neuro Sensory Stimulation Profile, PALOC-s=Post-Acute Level Of Consciousness scale; DRS=Disability Rating Scale; GOS(E)=Glasgow Outcome Scale (Extended); FIM=Functional Independence Measure; SPRS=Sydney Psychosocial Reintegration Scale; CRS-r=Coma Recovery Scale revised; n/a=not-applicable

Figure 1. Flow chart of the level of consciousness of all 44 patients who were admitted to the neurorehabilitation programme between 2001–2003.

Figure 2. Functional outcome of the conscious patients at follow-up, showing the Barthel Index level of independence on activities of daily living; level of mobility (part of the Barthel Index); level of communication; and living situation.