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					Health, function, and QoL in adults with CP in Norway
Reidun Jahnsen, PhD PT, Rikshospitalet University Centre, University of Oslo, Norway

This presentation is a review of current research on health, function, and quality of life in
adults with CP in Norway. Emerging research in the same field will also be outlined.
Objectives: The aim of the studies was to investigate the prevalence and time of onset of new
secondary impairment problems and functional limitations in adults with cerebral palsy (CP),
such as pain, fatigue and deterioration of functional skills and impact on quality of life. It was
of special interest to compare the adults with CP to the general population, thus investigating
the need for life span follow up programs. The aim was also to identify and discuss variables
potentially related to the new secondary problems, to be used as a guide in further clinical
studies, investigating potential causal pathways.
Methods: First step: A pilot study on orthopaedic problems in 37 adults with cerebral palsy,
including X-ray and clinical examination (1). Second step: Semi-structured interviews with a
strategic sample of 15 adults with CP to explore themes for the (2). Third step: A
multidimensional postal questionnaire was sent to all eligible adults with CP with accessible
medical records (766 persons, 18 years or more), and with no documented intellectual
disabilities. The questionnaire included demographic and diagnostic items, items on new
secondary impairment problems, quality of life, and on experiences and need for life span
follow-up programs. Standardised instruments, such as, SF 36, Fatigue Questionnaire, Life
Satisfaction Scale, and Sense of Coherence Scale were used (3-10). Fourth step: Exploration
of the GMFCS used in adults with CP. 62 persons participated in an inter-rater reliability
study, assessing self-reported versus professional scoring (11).
Results: First step: Of the 37 participants (19 females and 18 males, mean age 39 years) 18
had severe contractures and deformities, 8 being considered in need of orthopaedic surgery.
Second step: All the participants expected to live independent lives with predictable
functional ability, with an education, a job, a home, and a family like any other adult person.
However, there is a discrepancy between expectations and experiences regarding these issues,
both in persons with CP and in health professionals. Third step: 406 adults with CP (53%)
from 18 to 72 years, 51% males and 49% females, responded. Coping potential, expressed as
sense of coherence, differed significantly from that of the reference group, especially in the
domain of comprehensibility. Global and domain specific life satisfaction was significantly
lower than in the reference group, and so was health related quality of life. The prevalence of
chronic pain was 28% and chronic fatigue 29%, versus 15% and 11%, respectively, in the
reference groups. 44% experienced deterioration of functional skills, mostly before 35 years
of age. This prevalence was significantly higher and occurred much earlier in adults with CP
than in the general population. The secondary symptoms were significantly associated with
severity of motor impairment, low life satisfaction, and lack of adapted physical activity. The
new secondary problems were most prevalent in persons GMFCS II-V CP, suggesting
association with both overuse and inactivity. Fourth step: The GMFCS proved to be a reliable
classification instrument for adults with CP. Intraclass Correlation Coefficient showed
excellent agreement between self-reported and professional scoring; ICC (2, 2) = 0.93 (95%
CI 0.89-0.96).
Conclusion: Low quality of life and secondary symptoms, such as pain, fatigue and
deterioration of functional skills were significantly more pronounced in adults with CP, than
in the reference groups. Adults with CP also experienced life as less meaningful, manageable
and comprehensible than the reference group. Severity of motor impairment, overuse, and
lack of adapted physical activity were important predictors regarding the experience of new
secondary functional limitations. These findings point out the need for systematic follow up
programs for persons with CP in a life span perspective.
References:
    1. Terjesen T, Lofterod B, Myklebust G. [Orthopaedic problems in adults with cerebral palsy] Tidsskr Nor
        Laegeforen. 2004 Jan 22;124(2):156-9. Norwegian. Abstract in English.
    2. Haugen L, Jahnsen R, Grue JH, Edøy T. Expectations and experiences – semi-structured
        interviews with adults with cerebral palsy. Abstract. Dev Med Child Neurol 2006; 48(10) suppl
        EACD: 10.
    3. Jahnsen R. Being adult with a “childhood disease” – a survey on adults with cerebral palsy in Norway.
        Doctoral thesis. Dept Med. University of Oslo, 2004.
    4. Jahnsen R, Villien L, Stanghelle JK, Holm I: Coping potential and disability - Sense of Coherence in
        adults with cerebral palsy. Disabil and Rehabil 2002; 24 (10) 511-18.
    5. Jahnsen R, Villien L, Stanghelle JK, Holm I. Fatigue in adults with cerebral palsy in Norway compared
        with the general population. Dev Med & Child Neurol 2003; 45: 296-303.
    6. Jahnsen R, Villien L, Aamodt G, Stanghelle JK, Holm I. Physiotherapy and Physical activity –
        experiences of adults with cerebral palsy – with implications for children. Advances in Physiotherapy
        2003; 5: 21-32.
    7. Jahnsen R, Villien L, Egeland T, Stanghelle JK, Holm I. Locomotion skills in adults with cerebral
        palsy. Clinl Rehabil 2004; 18: 309-16.
    8. Jahnsen R, Villien L, Aamodt G, Stanghelle JK, Holm I. Musculo-skeletal pain in adults with cerebral
        palsy compared with the general population. J Rehabil Med 2004; 36: 78-84.
    9. Jahnsen R, Villien L, Aamodt G, Stanghelle JK, Holm I. Health related quality of life in adults with
        cerebral palsy compared to the general population. Abstract EACD 2005. Developmental Medicine &
        Child Neurology, 2005, Supplement 103; 47: 29.
    10. Jahnsen R, Villien L, Aamodt G, Stanghelle JK, Holm I. Life satisfaction in adults with cerebral palsy
        compared to the general population. Abstract AACPDM 2005. Dev Med & Child Neurol, 2005,
        Supplement 102; 47: 24. Submitted to J Rehabil Med 2007.
    11. Jahnsen R, Aamodt G, Rosenbaum P. Gross Motor Function Classification System used in adults with
        cerebral palsy: agreement of self-reported versus professional rating. Dev Med & Child Neurol 2006;
        48: 734-738.

Ongoing studies:
PhD student MD Grethe Maanum, Sunnaas Rehabilitation Hospital, University of Oslo, Norway.
   1. A Randomized Controlled Trial on Effects of Botulinum toxin A in Adults with CP
   2. A descriptive study of all the responders.
   3. The measurement variation in 3D gait-analysis on adults with spastic uni- or bilateral CP.
   4. Which variables predict effect of Botulinum toxin A?
   5. Can simple video analysis of gait function be as equally reliable as the more expensive 3D databased
        analysis of gait function?

PhD student PT Arve Opheim, Sunnaas Rehabilitation Hospital, Oslo, Karolinska Institute, Stockholm, Sweden
   1. 6 years follow-up of locomotion abilities in a group of persons with hemiplegic and diplegic CP
   2. Reduced walking skills in adults with spastic hemiplegic cerebral palsy: what are the critical variables?
   3. Gait problems in adults with spastic diplegic CP. A study using 3D gait analysis in problem
        identification.
        SPLIT INTO 2 STUDIES
        Study 3: Persons without deteriorated walking ability (group 1), and those who report deterioration, but
        are still walking (group 2).
        Study 4: Persons who recently have stopped walking but are still able to ambulate at least 10 meters
        (group A), and those who report deterioration, but are still walking (group B)

Silje Maeland PT MSC Master thesis, Sunnaas Rehabilitation Hospital, University of Bergen, Norway.
     1. Functional effect of Progressive Resistance Exercise – Seated Leg Press in adults with CP, spastic
        diplegia.

				
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