ICF-DH CONCEPTUAL APPROACH OF THE COMPLEX MEDICAL

AND PSYCHO-SOCIAL PROBLEMS ENCOUNTERED AT HOME AND

IN THE COMMUNITY; THE Q of L OF PERSONS WITH SCI SEQUELS
ANGHELESCU A. GELU ONOSE
MARINESCU F.L. CARMEN CHIPĂRUŞ
LAPADAT MAGDA MIHĂILESCU CEZARA
ANCA S. MIHĂESCU DOINA GEORGESCU
VIRGINIA ROTĂRESCU

ABSTRACT
In our project we reviewed 660 patients with chronic spinal cord injury by the questionnaire technique. Most of the patients in-
terviewed have a good accessibility to the medical services, but one third of them had a tiny medical supervision. Main medical
complications at home were pressure sores, recurrent urinary infections and incontinence.After discharge, half of the patients had
continued the therapy program but only 18% managed to walk independently. Only 13% of the patients managed to make minor
adaptations at home and ambient. Scholar (14%) and professional reintegration (12,6%) scored low.

Key-words: SCI, tetraplegia, paraplegia, comprehensive rehabilitation, medical complications, B-ADL, I-ADL,ICF-DH,
ISCoS, ROSCoS

INTRODUCTION
Spinal cord injury (SCI) represents one of the most severe medical situations, occurring most frequently in young adults.
SCI refers to the impairment or loss of motor, sensory and/or bladder, bowel functions in the cervical, thoracic, lumbar or
sacral segments of the spinal cord, secondary to the traumatic damage of the neural elements within the spinal canal.
Survivors of initial injury can now expect to live longer because of the improvements in medical care (fig. 1) [1].
Lifelong disability places an important burden on these individuals, their families and society. Long-term functional
outcome after SCI depend on neurological recovery, medical interventions, rehabilitation and community reintegration.
The attitude towards the person with special needs (with handicap) had known historical, political, lawful, ethical – in
a progressive or regressive contextual evolution. The SCI sequel patients represent a vulnerable social group, predis-
posed to: poverty, stigmatization, lack of affectivity from the family, relatives, friends, despondency, toxicophily, insti-
tutional discrimination, personal and professional prejudice, loneliness, isolation and exclusion from community (fre-
quently). Often the ex-patients have limited access to the basal social services, education, professional improvement,
(protected) work place [2] – [6].
The major problems (still present in our country) confronting SCI persons, are:
• the architectonic barriers in personal house (apartment in block of flats/ country house);
• the lack of access facilities in public buildings and transport;
• the difficulties in accessing information;
• the lack of assistive appliances and services;
• the reactive depression, low level of self-perception and hyper-protective families;
• the imperfection of the legislative frame;
• the indolence / unconcernment of the political class.
The standardized assessment measures of the International Classification of Functioning, Disability and Health (ICF-
DH) developed by the World Health Assembly, offers for clinical practice a comprehensive and universally accepted
framework to describe functioning, disability and health in persons with all kinds of diseases or conditions.
The medico-psycho-social problems encountered at home and in the community by persons with SCI sequel, were
retrospectively evaluated using ICF-DH conceptual approach.

PART EXPERIMENTAL
Materials used
The target population of this retroactive study, covering a period of 7 years (1999-2006), consisted of 660 subjects with
chronic spinal cord injury (SCI), admitted during the last 7 years in our rehabilitation department, reviewed by the ques-
tionnaire technique. There were 16 questions, with self-asses items, focused on the medical and social items (educa-
tion, work, intellectual and leisure activities,), which gave the subjects the possibility to evaluate their major problems
and quality of life QoL.

Work methodology
The questionnaire items focused upon:

Health after discharge [7]

• addressability at medical services;
• systemic complications/ control of infections;
• pressure sores;
• bladder, bowel management;
• medication;
• adl, gait ability.
Reintegration in the community
• socialization & leisure activities;
• home adaptations;
• family situation (marital status);
• education - scholar reintegration;
• ocupational activities – professional reintegration;
• economic situation.

Characterizations
The response rate was 60,4% (feed-back from 425 of 660 SCI subjects). The lot of 425 persons consisted of 205 tet-
raplegic (48%) and 220 paraplegic (52%) – (fig. 2).
Gender (males vs. females = 3:1), the marital status remarkable 400 patients (94%) were married in a stable couple, and
the divorce rate was only 1,8%. Despite the handicap there were 3 marriages (life goes on!).
The death rate was almost 9% (40 patients) during the entire follow-up period of 7 years. Most of the patients had a
good accessibility to medical services; unfortunately 140 patients (33%), had a tiny or even almost inexistent medical
supervision (fig. 3).
Many problems were incriminated in the fact that the patients could not reach the local doctor (long distances, absence
of adapted transport, financial difficulties).
The serious bio-medical problems (characterizing the critically deteriorative body level) faced by the patients at home
were: the pressure sores (22% cases), the recurrent urinary infections (52%) and incontinence (20%).
Bladder, bowel management are synthesized in (fig. 6, 7). After discharge 53% of the patients had continued the therapy
program and 18% had managed to walk independently. Because of the financial difficulties, only 13% of the patients
managed to make minor adaptations at home and ambient (fig. 8).
During the hospitalization period and readmissions, all patients were trained to gain independence in B-ADL and I-ADL
and improve their activity, according to the neurological level of the lesion; in spite of the efforts for comprehensive reha-
bilitation and getting independence in daily living (ADL), 58% of the paraplegic persons were not active at home/ family,
or in the community, remained isolated, inactive, depressive and totally dependent (similar to the low level of participa-
tion characterizing the quadriplegic persons - 65%) (fig. 9, 10). To prevent depression and isolation, one must consider
changing the daily schedule, amplifying the social relationships, creative activities and recreation.
Socio-professional rehabilitation represents a difficult problem. It is necessary to maximize the social function of the
persons, based upon the vocational abilities. There were multiple aspects/ levels to explain the limited social, scholar,
professional, vocational, participation. The socio-medical problems explained the low percent of scholar and vocational
reintegration; just 14% of the subjects aged under 25 years old had continued studies after discharge (fig. 11).
Only 12,6% of the patients were professionally reintegrated (continued to work in the same job or in a protected work
place). The low possibility of professional integration is explained by the lack of re-qualify courses, of transport condi-
tions and of adapted work places, (especially for the SCI handicapped persons), the inconsistency of the legal frame
and the trend of the expertise commissions to pension and not to professionally reintegration (fig. 12, 13). Retirement
rate was 87,4% reflecting the general trend of the expertise commissions to pension, not to professionally reintegration
(fig. 12, 13). Only a few paraplegic subjects can afford a personal car to solve transport; even fewer are professionally
reintegrated.
Certainly, the family represents a vital “ingredient” in the process of neuro-rehabilitation. Psychologists and sociologists
suggest, and experience proves, that the family provides the most effective link in the integration of SCI patient with his
social environment
Couple stability was a remarkable fact in the group studied (fig. 14).

RESULTS AND DISCUSSIONS

In western countries the majority of the problems facing tetra/paraplegic persons have been solved. Our society is not
yet fully prepared and educated to accept, to solve and to reintegrate – (professionally, educationally, socially) the sub-
jects with severe neurological handicap (persons with special medical and social needs), and must do serious efforts to
enhance the level of their active participation.
In Romania, comprehensive rehabilitation services for SCI are available in only few specialized hospitals. Post dis-
charge medical and social follow-up is essential for a successful long-term resettlement. Domiciliary visits (GP and/or
specialist, nurse, social workers) - are (still) not properly solved. House and environmental adjustments are very difficult
to achieve - because of the financial problems (fig. 8).
NGOs are quite a few and cannot resolve the social needs of the patient and family: accommodation, transport, employ-
ment, financial problems and communication.
Governmental services for disabled persons, social insurance agencies, offer a legal frame (law 448/2006) and facilities,
but a quite low social budget.
Research and founding are two main issues in the problem of the severe limited persons. Sustained educational pro-
phylactic measures in mass-media, in schools, universities represent another important lever.
There are multiple issues to achieve: political lobby, cooperation with the Health Minister, and Governmental services
for disabled persons, NGOs, general practitioners - for a better social and medical management of disabled persons.
Recent studies revealed a clear association between the environmental factors such as the social support and socio-
economic factors; witch is important predictors for early mortality among persons with SCI.
Despite all the identified problems, the mortality rate in our study was only 9% during the entire follow-up, much lower,
compared to the mortality percent of 16,2%, reported by Krause and Carter [8] (224 deaths in their sample of 1386
American SCI patients), despite the tremendous discrepancy between the funds allocated by the medical insurances - in
Romania and in USA [1].
To treat a person with SCI costs a lot. Money…Money…Money...in this desert of global economic recession! (fig. 15,
adapted from [1]).
Facing the difficulties mentioned above, our multidisciplinary team struggled to make some forward steps, to improve
the actual critical situation.
Our project was selected in 2006, from a total number of 466 international specialists and was invited, as international
expert team, to participate to the international project, “Development of ICF Core Sets For Spinal Cord Injury (SCI) -
Expert Survey”, initiated by the Health Organization (WHO), in cooperation with the Collaboration Centre of the Family
of International Classifications (DIMDI, Germany), the International Spinal Cord Society (ISCoS), International Society
for Physical and Rehabilitation Medicine (ISPRM), and partner institutions across the world. Our contribution was ma-
terialized in the Romanian contributions to the development of the international project: ICF Core Sets for Spinal Cord
Injury [9].
Year 2007 was a milestone for our „baby”, the Romanian Society For Pathology, Therapy And Rehabilitation, in SCI - ac-
ronym RoSCoS, located in the National Reference Centre for Neurological Rehabilitation, at the University Emergency
Hospital “Bagdasar Arseni”, Bucharest.
Alongside with a multidisciplinary consortium, our Neurological Rehabilitation expert University team, initiated and de-
veloped a National Informatics Network for the dynamic clustering of the patients with spinal cord injury, after a National
Excellency Research (CEEX) competition, (organized during 2006-2008) (acronym RISCI) [10].
The main achievement was a virtual database and network structure accessed at the portal www.risci.ro containing a
highly secured network and a database of medical-social data, in a legally protected frame and also a web page, for
forum, chat, multimedia facilities for regularly on-line conferences, with live participation of specialists and patients, IS-
CoS and ROSCoS scientific data.
The patient and his doctor may have protected password access, for strict periodically actualization („dynamic cluster-
ing”) of individual socio-economic and medical information.
This performed project represented an original solution at national level, with impact upon the improvement of the quality
and performance of the services offered by the Romanian medical health and social systems towards the European lev-
el of quality, ensuring periodical scientific up-dates, effective management interventions, adequate supply of human and
material resources, allowing interpersonal communication between patients and specialists, improving infrastructures,
focused on a better SCI prevention, treatment and social reintegration and will be concertized in the future Romanian
National Electronic Register of the sequel after SCI.
This project was encouraged and highly appreciated at international level; our National organization ROSCOS had
the great honor to be accepted by the main European leaders of ISCoS: the President of ISCoS, Mr. Waigh El Masry,
the Vice-President, Prof. Sergio Aito and an important member of the board – Prof. Fin-Biering Sorensen, who all are
Honorific Presidents of ROSCoS.
In 2008, ROSCoS was affiliated at ESCIF (European SCI Federation). The next step, in 2009 at Florence will be fulfilled
the honorable up-gradation, among the full members of ISCoS.

CONCLUSIONS
Our society must do serious efforts to solve and to reintegrate the subjects with sequel after SCI and neurological handi-
cap (persons with special medical and social needs) and must do serious efforts to enhance the level of the patient`s
active participation.
The study offered the opportunity to assess aspects of the national situation of the SCI sequel persons, being a mile-
stone for the improvement of the long-term management of SCI, and the optimal holistic/ systematic understanding,
comprehensive rehabilitation and follow-up, ideally, a life long commitment, aiming finally to the familial and socio-
professional reintegration.

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Authors:
ANGHELESCU A MD, Postgrad
ONOSE GELU MD, PhD
MARINESCU FL. specialist therapist
CHIPĂRUŞ CARMEN MD
LAPADAT MAGDA MD
MIHĂILESCU CEZARA, MD,
MIHĂESCU ANCA S. senior therapist
GEORGESCU DOINA sociologist
ROTĂRESCU VIRGINIA psychologist

NATIONAL REFERENCE CENTRE FOR NEUROLOGICAL REHA-

BILITATION
The University Emergency Hospital “Bagdasar Arseni”
10 Berceni Street, Bucharest, Romania
e-mail: aurelian_anghelescu@yahoo.co.uk

Fig. 1. the life expectancy for persons who survive at least 1 year post-injury [1]
 Fig. 2. Patients group: age distribution Fig. 3. Access to medical services

Fig. 4. Systemic complications Fig. 5. Pressure sores

normal 180
micturition

reflex 72 feces evacuated every 1-2 days 180

stimulation transit time 2-3 days 97

constipation (defecation>3 days) 128

intermittent 169 no answer 20
catheterization 0 20 40 60 80 100 120 140 160 180

no answer
4

0 20 40 60 80 100 120 140 160 180

Fig. 6, 7. Bowel, Bladder management

350
347

300
133 (65%) 28
250

200

150
26
1 14 3
100
36
50
19 23
exclusively home activities visits
0 outing cinema
no adaptations indoor outdoor not specified without social activities not specified
adaptations adaptations

Fig. 8. Home adaptation Fig. 9. Home activities, leisure-quadriplegics

 28

118 (58%) gymnasium 1

college 8

professional 1
48 school

faculty 4
2
2 22
no scholar 86
reintegration
exclusively home activities visits
0 10 20 30 40 50 60 70 80 90
outing cinema
without social activities not specified

Fig. 10. Home activities, leisure – paraplegic patients Fig. 11. Scholar reintegration

173

2 7 12
1
2

reintegrated in the same job changed both work place & craft
small private entreprise domiciliary work
qualify course RETIRED

Fig. 12, 13. Professional reintegration

400 (94%)

6 7183

no modifications married divorced

separeted widow home (institution)

Fig. 14. Couple stability [1] Fig 15. Estimated lifetime costs by age at injury
(discounted at 2%)