Refer to: Cohen P, Kohn JG: Follow-up study of patients with cerebral palsy. West J Med 130:6-11, Jan 1979
Follow-up Study of Patients With Cerebral Palsy PETER COHEN, MD,* San Francisco, and JEAN G. KOHN, MD, Berkeley, California
Of 319 patients with cerebral palsy recalled for reevaluation 15 years after the initial visit, 10 percent had died. Of the living, 55 percent had spasticity, 32 percent had athetosis, 4 percent had ataxia and 9 percent had mixed spasticity and athetosis; 38 percent had an intelligence quotient (IQ) less than 50, 24 percent between 50 and 79, and 38 percent had IQ above 80. There was a high correlation between overall functional outcome and intellectual level. Severity of physical disability, as measured by hand use, mobility and speech, also correlated with dependence, in part because increased severity of the disability was associated with decreased intellectual capacity generally. Twenty-five years after the initial visit, parental attitudes and personality intactness were evaluated (using the Minnesota Multiphasic Personality Inventory [MMPIJ) and were correlated with satisfaction with status in life in 28 persons predicted to be independent on the 15-year study. Twenty (72 percent) of the 28 were satisfied with their status in life and of these, 16 were evaluated (with the MMPI) with 70 percent scoring in the normal range; 13 (65 percent) had parents with a positive attitude. Positive attitude was defined as parental feelings that the handicapped child was a worthy, valuable person, to be encouraged and assisted but not isolated from the world of nonhandicapped people. Careful serial assessment by professional teams combined with repeated long-term counseling of families can result in optimal outcome for the disability level involved, due to the primary role parents play in the development of a child's character and behavior. From the Department of Pediatrics, School of Medicine, University of California, San Francisco, and the Maternal and Child Health Program, School of Public Health, University of California, Berkeley. Dr. Kohn's research was supported in part by the United Cerebral Palsy Research Foundations, Inc. Grant No. CF-93-72C. Submitted, revised, June 19, 1978. *Deceased (December 20, 1977). This paper represents Dr. Peter Cohen's last contribution to the functional and social evaluation of patients with cerebral palsy. As a faculty member in the Department of Pediatrics at the School of Medicine, University of California, San Francisco (UCSF), for 32 years (1942 through 1974), Dr. Cohen estimated that he treated more than 5,000 children with cerebral palsy in addition to many with other developmental disabilities. In 1948 he founded the UCSF Cerebral Palsy Clinic, where he did follow-up studies on these patients over many years. As the first Medical Director (1965 through 1971) of the Golden Gate Regional Center for Developmental Disabilities (GGRC), he was a strong advocate for humane, community treatment of the mentally retarded and other developmentally disabled. After his retirement from UCSF (Professor Emeritus, 1974), he again worked at GGRC until his death. -JGK Reprint requests to: Jean G. Kohn, MD, 1230 Vancouver Avenue, Burlingame, CA 94010.
6
JANUARY 1979 * 130 * 1
CEREBRAL PALSY is a syndrome, not a definitive
diagnosis;1'2 the variety of signs and symptoms has made classification and the reliable prediction of outcome in these patients difficult. Bachmann,3 who studied the variables affecting postschool economic adaptation of orthopedically handicapped students, concluded that vision and hearing handicaps did not seem to affect their future employability but that hand use, mobility and intelligibility of speech played a significant role. We have investigated the functional outcome in a group of such patients in relation to diagnosis and intellectual capability and have attempted
PATIENTS WITH CEREBRAL PALSY
to correlate outcomes with hand use, mobility and speech.
Procedure The type of cerebral palsy and the intellectual level were noted in 462 patients in whom cerebral palsy was diagnosed at the University of California Cerebral Palsy Clinic in San Francisco from 1949 to 1951 (Table 1). Approximately 15 years later we sent inquiries to the families and requested information on the status of these patients; 319 (67 percent) families replied and, of these, 209 patients returned for reevaluation when they were offered the opportunity. Of the 110 who did not return, 33 (10 percent) had died (Table 2). When the known outcomes were compared with the predictions based on diagnosis (Table 2) or intellectual level (Table 3) they were not substantially different. Since follow-up was done in half or more of the patients in each group, the findings in those whose outcomes were known were considered applicable to the entire group. The questionnaire, returned by 110 patients (or their families), was analyzed for follow-up classification as follows: * Independent. Patients who were married, in a job without concessions or in regular school; * Partly dependent. Those in a job with concessions, a special school or a sheltered workshop, or who were partially supported by family or state funds; * Dependent. Patients in an institution, at home and totally dependent on family, or not employed in any program; * Dead. For the 209 patients who returned for reevaluation, the judgments on outcome were made after a family interview by a pediatrician, an orthopedist, a psychologist and a social worker (see Table 4). Physical functional level was evaluated on the
basis of hand use, mobility and speech (Figure 1). Disability levels were defined as mild or absent; moderate, when some assistance was required, and severe, when assistance was required for the activities of daily living. Those who returned the questionnaires were evaluated with the use of initial records and writtehi responses. Psychological tests were given to document the reliability or deviation from the previous testing; these included the Gesell, Stanford-Binet (revised), Wechsler Intelligence Scale for Children and Wechsler Adult Intelligence Scale. Of the 209 patients retested, 26 (12 percent)- attained scores that resulted in a change of category from that into which they had been placed originally; 32 (15 percent) scored more than 10 points higher. Twenty-six of these were originally in the category of intelligence quotient (iQ) 80 or above and, therefore, had been eligible for regular TABLE 2.-15 Year Outcome of 426 Patients With Cerebral Palsy Initial Visit Num- PerType of Cerebral Palsy ber cent
OutcQme Known Living Dead Num- Per- Num- Perber cent ber cent
Spasticity . 235 54
158 55 91 32 114 26 9
8 21 .. 4
286
33
Athetosis . 146 32 Ataxia ... 18 4 Mixed ... 45 10 TOTAL .. 462
24 64 . 12
Outcome Unknown Num- Perber cent
87 34 7 15
143
TABLE 3.-IQ Assessment of Patients With Cerebral Palsy Patients Studied 1949-1951 Num- Perber cent
IQ
Follow-up Study of Patients With Cerebral Palsy PETER COHEN, MD,* San Francisco, and JEAN G. KOHN, MD, Berkeley, California
Of 319 patients with cerebral palsy recalled for reevaluation 15 years after the initial visit, 10 percent had died. Of the living, 55 percent had spasticity, 32 percent had athetosis, 4 percent had ataxia and 9 percent had mixed spasticity and athetosis; 38 percent had an intelligence quotient (IQ) less than 50, 24 percent between 50 and 79, and 38 percent had IQ above 80. There was a high correlation between overall functional outcome and intellectual level. Severity of physical disability, as measured by hand use, mobility and speech, also correlated with dependence, in part because increased severity of the disability was associated with decreased intellectual capacity generally. Twenty-five years after the initial visit, parental attitudes and personality intactness were evaluated (using the Minnesota Multiphasic Personality Inventory [MMPIJ) and were correlated with satisfaction with status in life in 28 persons predicted to be independent on the 15-year study. Twenty (72 percent) of the 28 were satisfied with their status in life and of these, 16 were evaluated (with the MMPI) with 70 percent scoring in the normal range; 13 (65 percent) had parents with a positive attitude. Positive attitude was defined as parental feelings that the handicapped child was a worthy, valuable person, to be encouraged and assisted but not isolated from the world of nonhandicapped people. Careful serial assessment by professional teams combined with repeated long-term counseling of families can result in optimal outcome for the disability level involved, due to the primary role parents play in the development of a child's character and behavior. From the Department of Pediatrics, School of Medicine, University of California, San Francisco, and the Maternal and Child Health Program, School of Public Health, University of California, Berkeley. Dr. Kohn's research was supported in part by the United Cerebral Palsy Research Foundations, Inc. Grant No. CF-93-72C. Submitted, revised, June 19, 1978. *Deceased (December 20, 1977). This paper represents Dr. Peter Cohen's last contribution to the functional and social evaluation of patients with cerebral palsy. As a faculty member in the Department of Pediatrics at the School of Medicine, University of California, San Francisco (UCSF), for 32 years (1942 through 1974), Dr. Cohen estimated that he treated more than 5,000 children with cerebral palsy in addition to many with other developmental disabilities. In 1948 he founded the UCSF Cerebral Palsy Clinic, where he did follow-up studies on these patients over many years. As the first Medical Director (1965 through 1971) of the Golden Gate Regional Center for Developmental Disabilities (GGRC), he was a strong advocate for humane, community treatment of the mentally retarded and other developmentally disabled. After his retirement from UCSF (Professor Emeritus, 1974), he again worked at GGRC until his death. -JGK Reprint requests to: Jean G. Kohn, MD, 1230 Vancouver Avenue, Burlingame, CA 94010.
6
JANUARY 1979 * 130 * 1
CEREBRAL PALSY is a syndrome, not a definitive
diagnosis;1'2 the variety of signs and symptoms has made classification and the reliable prediction of outcome in these patients difficult. Bachmann,3 who studied the variables affecting postschool economic adaptation of orthopedically handicapped students, concluded that vision and hearing handicaps did not seem to affect their future employability but that hand use, mobility and intelligibility of speech played a significant role. We have investigated the functional outcome in a group of such patients in relation to diagnosis and intellectual capability and have attempted
PATIENTS WITH CEREBRAL PALSY
to correlate outcomes with hand use, mobility and speech.
Procedure The type of cerebral palsy and the intellectual level were noted in 462 patients in whom cerebral palsy was diagnosed at the University of California Cerebral Palsy Clinic in San Francisco from 1949 to 1951 (Table 1). Approximately 15 years later we sent inquiries to the families and requested information on the status of these patients; 319 (67 percent) families replied and, of these, 209 patients returned for reevaluation when they were offered the opportunity. Of the 110 who did not return, 33 (10 percent) had died (Table 2). When the known outcomes were compared with the predictions based on diagnosis (Table 2) or intellectual level (Table 3) they were not substantially different. Since follow-up was done in half or more of the patients in each group, the findings in those whose outcomes were known were considered applicable to the entire group. The questionnaire, returned by 110 patients (or their families), was analyzed for follow-up classification as follows: * Independent. Patients who were married, in a job without concessions or in regular school; * Partly dependent. Those in a job with concessions, a special school or a sheltered workshop, or who were partially supported by family or state funds; * Dependent. Patients in an institution, at home and totally dependent on family, or not employed in any program; * Dead. For the 209 patients who returned for reevaluation, the judgments on outcome were made after a family interview by a pediatrician, an orthopedist, a psychologist and a social worker (see Table 4). Physical functional level was evaluated on the
basis of hand use, mobility and speech (Figure 1). Disability levels were defined as mild or absent; moderate, when some assistance was required, and severe, when assistance was required for the activities of daily living. Those who returned the questionnaires were evaluated with the use of initial records and writtehi responses. Psychological tests were given to document the reliability or deviation from the previous testing; these included the Gesell, Stanford-Binet (revised), Wechsler Intelligence Scale for Children and Wechsler Adult Intelligence Scale. Of the 209 patients retested, 26 (12 percent)- attained scores that resulted in a change of category from that into which they had been placed originally; 32 (15 percent) scored more than 10 points higher. Twenty-six of these were originally in the category of intelligence quotient (iQ) 80 or above and, therefore, had been eligible for regular TABLE 2.-15 Year Outcome of 426 Patients With Cerebral Palsy Initial Visit Num- PerType of Cerebral Palsy ber cent
OutcQme Known Living Dead Num- Per- Num- Perber cent ber cent
Spasticity . 235 54
158 55 91 32 114 26 9
8 21 .. 4
286
33
Athetosis . 146 32 Ataxia ... 18 4 Mixed ... 45 10 TOTAL .. 462
24 64 . 12
Outcome Unknown Num- Perber cent
87 34 7 15
143
TABLE 3.-IQ Assessment of Patients With Cerebral Palsy Patients Studied 1949-1951 Num- Perber cent
IQ
