Abstract—Although psychological distress and cognitive
dysfunction are well documented in adults with multiple sclerosis (MS), they are
poorly understood in children with the disease. Psychosocial difficulty
experienced by children and adolescents with MS involves factors common to all
chronic illnesses in children, as well as MS-specific factors. The psychosocial
manifestations of the disease may affect the patient’s self-image, role
functioning, mood, and cognition to adversely affect schooling, interpersonal
relationships, and treatment compliance. Furthermore, the impact of having a
family member with MS may affect overall family functioning. Assessment and
interventions for psychosocial and cognitive problems in pediatric MS should be
multidisciplinary in nature and address the child’s functioning at home, school,
and among peers, as well as the effect on the family. NEUROLOGY 2007;68(Suppl
Multiple sclerosis (MS) is a chronic demyelinating
disease of the CNS in which major depression, cognitive dysfunction, and
psychological distress are common. While these problems are well documented in
adults with MS, they are poorly understood in children with the disease.
Although neurologists may not be directly involved in interventions for
psychosocial issues as such care is often relegated to psychologists, social
workers, and school personnel, sensitivity to such issues is important so that
appropriate referrals for assessment and treatment can be made.
Both children and adults face challenges related
to the unpredictable nature of the disorder, its direct and indirect behavioral
changes, and the potential for major disability. Helping children with MS manage
their psychosocial challenges is complicated by the paucity of research in this
area, the unknown consequences of a demyelinating process during a period of
ongoing myelinogenesis, and the varied needs of children, preadolescents, and
older teens. Adolescents are the most common age group affected by pediatric MS.
For this group, clinicians must be sensitive to the difficulties teens face
coping with a neurologic disease and must recognize that teens may be
particularly psychologically vulnerable. The present review is drawn from the
extant research on pediatric MS, is informed by literature on the psychosocial
factors in other chronic illnesses in children, and is illustrated by case
examples drawn from our own clinical experience with this group.
Overview of behavioral problems. The prevalence of
behavioral concerns in the pediatric MS population is largely unknown. The few
studies available cite frequency rates from rare1 to over 50% of children
experiencing depression, anxiety, or adjustment disorders.2 Factors contributing
to psychosocial difficulty can be categorized by chronic illness disease
features common to childhood disorders and by disease-specific factors unique to
MS. Adjusting to a chronic illness does not invariably lead to emotional
dysfunction3,4; however, it is likely that youths with MS, like youths with
diabetes and epilepsy,4 may be at greater risk for behavioral problems. The
sense of isolation, the dependence on long-term treatment, and the need for
constant self-management reinforce the feeling of being different from peers.
Children with chronic medical disease can test the endurance of clinicians and
families with risk-taking behaviors (e.g., alcohol, smoking) and poor compliance
with medical treatment.5,6 MS-specific factors that can lead to behavioral
problems include the physical disabilities and other challenges associated with
neurologic impairments, the relative isolation associated with a disease that is
rare in children, and the unpredictable nature of the disease course. Symptoms
of MS that can be particularly problematic are severe fatigue, motor
impairments, visual loss, and bladder dysfunction. The physical effects of MS,
its rarity, and its unpredictable course may lead to negative effects on a
child’s self-perception as is so commonly seen with other chronic medical
illnesses in childhood.7-9
Fatigue can limit a child’s ability to attend
school on a full-time basis. Gait impairments interfere with getting to class,
particularly for middle school and high school aged students who travel between
several classrooms daily. Bladder or sphincter dysfunction, though somewhat less
common in children than adults with MS,10-12 has been misinterpreted by teachers
and other school staff. For example, a teen with MS frequently asked permission
to go to the bathroom during class. Her teacher misinterpreted this behavior as
a sign of poor class participation and insubordination rather than recognizing
this as a manifestation of her disease. Until school personnel were educated,
the student’s grades were adversely affected by this misperception.
The unpredictable nature of MS adds to the sense
of uncertainty and can threaten adherence to treatment; children with infrequent
relapses may fail to recognize that their medications have likely influenced the
disease course and prematurely cease taking them. Because MS in children and
adolescents is relatively unusual, there are few support mechanisms available
for affected children and families. Historically, most programs offered by local
National MS Society chapters have been oriented toward adults, although a
national support program has been in place since 1990. Fortunately, as awareness
of MS in younger persons has grown, more Society resources are available.
Consequences. The multiple factors underlying
psychosocial stressors can differentially affect children and adolescents and
consequences are observed as follows:
Effects on the individual
Impact on school and other aspects of social
Stress on the family
Poor communication with health care providers
Consequences for the individual.
Individuals may exhibit abrupt changes in behavior that may raise overall health
and safety concerns and necessitate further assessment and management.5
Risktaking behaviors, when severe, can lead to running away from home, acting
out through promiscuous sexual behavior, substance abuse, or criminal activity
such as shoplifting or vandalism.6 Those who experience depression may express
this through repetitive crying, social withdrawal, and possibly through
self-injury or suicide attempts.
Consequences in school. Teachers may note
behavioral changes that create challenges for parents, teachers, and peers.
Reports of uncharacteristic disruptive behavior in the classroom, open
opposition to teachers’ demands and expectations, incomplete assignments,
truancy, physical aggression toward peers, and any behaviors that lead to
suspension or expulsion clearly indicate a cause for concern.6 In our experience
missed days of school due to sick days, hospital admissions, and medical
appointments are frequent. Furthermore, school personnel may be unaware of the
unpredictable waxing and waning of symptoms in MS. For example, a girl with
optic neuritis may need significant support with note taking, written
examinations, and to simply get around the school. As her symptoms resolve, she
may no longer require such support.
Adolescents and parents may question future
educational and career goals. Some examples from our experience have included a
young man with MS who dreams of attending a military academy and has questions
about how to disclose his diagnosis to the medical screening board. Another
example is the family of a girl with MS that debates whether to disclose her
diagnosis to the coach of the college crew team when applying for a scholarship.
Consequences on the family. Chronic
illnesses affect the whole family. Factors that predict better coping with
chronic illnesses include good communication, a supportive and expressive family
atmosphere, and external support from friends and health care providers.8,13
Successful family adaptation often includes an acknowledgment of the disease,
minimization of abnormalities related to the chronic illness, defining family
life as essentially normal, defining the social consequence of the situation as
minimal, and engaging in behaviors designed to demonstrate the essential
normalcy of the family to others.14
Specific to pediatric MS, parents frequently
report feeling lost. Families of our patients have reported that when speaking
to their friends or relatives, they have heard statements such as “MS doesn’t
happen in kids.” They rarely have the opportunity to meet other parents sharing
the same experience and, in comparison to adult MS, there is little available
literature. More generally, parents of children with chronic illness often mourn
for the loss of the healthy child and the loss of the dreams they harbor for
their child’s future. Common concerns include issues surrounding the health of
the child, future family planning, and concerns regarding access to medical
care, medical insurance, and financial resources that the child will require.
Consequences on health care. While
medication compliance is a challenge for most patients, it may be particularly
difficult when facing a chronic illness for which treatment must become a
permanent fact of life. Compliance rates of children with chronic illnesses
often decrease as children reach adolescence.7 Some adolescents may refuse to
adhere to the recommended treatment regimen, continually combat use of
injectable treatments, or resist access to health care for acute and ongoing
needs.15 One study found that injection anxiety is a determinant of adherence to
therapy in adults with MS.16 In pediatric MS, compliance is even more difficult
due to the abstract nature of treatment. In our experience, children and parents
may struggle with accepting the need to continue therapy when they have not had
a relapse and therefore seem healthy.
Cognitive function in pediatric MS. Cognitive
problems in MS affecting memory, attention, and cognitive processing speed occur
in 40 to 60% of adults.17 Cognitive dysfunction in children and adolescents with
MS has been less well studied, but children may be especially vulnerable to
cognitive impairment given that the neuropathologic processes of MS co-occur
with the myelination in the developing CNS. There are too few studies of
children with MS to accurately estimate how frequently they experience cognitive
dysfunction. However, in a study of 37 children with MS who underwent cognitive
assessment, a third of patients had impairments on two or more
Case studies in children with MS have demonstrated
deficits in global measures of IQ, perceptual motor skills, memory, visual-motor
deficits, executive functions, and processing speed.1,18-20 The deficits in
cognition affect school performance. A comprehensive case study of an
11-year-old boy with MS onset at age 9 demonstrated clear visual-motor deficits
and impaired executive functions that led to declining academic performance
despite intact reading, writing, and mathematics ability.21 Likewise, in larger
studies of children, a variety of consequences on school functioning have been
noted, including special accommodations in school, such as reduced work load due
to fatigue, or compensatory strategies to assist with memory deficits.2,20 Other
cases from our experience have included the need to be transferred out of a
gifted program into remedial classes and the need to go on medical leave from
The disease correlates of cognitive impairment in
childhood MS have only begun to be examined. Both high relapse rate and Expanded
Disability Status Scale (EDSS) have been shown to be associated with cognitive
deficits.2 However, children with few other signs of neurologic dysfunction and
low EDSS are also at risk for cognitive dysfunction. Two studies have noted that
cognitive impairments appear relatively early in the disease course and that
patients with longer disease duration will demonstrate greater impairment.2,20
The limited longitudinal data available suggest that some children will show
progressive decline in cognitive performance over time.2,22
The relative contribution of physical factors, medication side effects, and
changes in the disease course need to be considered in the assessment of
psychosocial functioning. For example, initiation of interferon or steroid
therapies may affect mood or lead to a sudden behavioral change.23 A key
component of a behavioral assessment is the joint interview with parents and the
child to investigate problematic behavior. Structured behavioral rating scales
(e.g., Child Behavior Checklist and Teacher Rating Scales) may be helpful.24 An
identified behavioral issue requires in-depth exploration to assess its relation
to the individual’s developmental stage, factors that may trigger the behavior,
and the parents’ response to the behavior.25 When assessing the behavior of a
child with MS, it is important to avoid making the assumption that the behavior
is directly related to having MS. For example, pre-existing family dysfunction
or a drastic change in a child’s life such as parental separation/divorce or
death or a family move may be the main contributing factor to the behavioral
presentation. A thorough assessment of the behavioral issue provides important
information for developing the most appropriate management plan.
With respect to cognitive functioning,
psychoeducational testing conducted by schools, which typically involves broad
IQ measures and measures of academic achievement, is likely to be too
insensitive to identify MS-specific cognitive deficits. Therefore, a more
comprehensive evaluation by a neuropsychologist familiar with evaluating
children is warranted when cognitive impairment is suspected or decline in
school function has been observed.
Intervention. Behavioral problems may require a
referral to a therapist, social worker, psychologist, or psychiatrist who
specializes in counseling of children and adolescents with chronic illnesses.
Recognizing risk factors and implementing preventative strategies to reduce the
emergence of behavioral problems is an ideal practice. This includes affording
opportunities to express emotions, feelings, and fears, optimally managing
physical symptoms, limiting the severity of medication side effects, providing
education, involving the child or adolescent in health care decision-making, and
offering anticipatory guidance and counseling. The use of a proactive approach
potentially limits the development of behavioral issues.
Open discussion of the family’s concerns is
critical. While some families may need family therapy or individual
psychotherapy, it is not uncommon for there to be a great deal of resistance. In
these cases, the clinicians involved in the MS care will need to be more
involved with the family problems.
Interventions to address the frequent feelings of
isolation have been developed. A program to bring adolescents with MS together
in a camp setting was developed at the National Pediatric MS Center at Stony
Brook and this model is being replicated elsewhere. Post-event interviews of
campers have shown a feeling of cohesion and belonging among attendees and
feedback via structured phone interviews from parents of the teens indicate that
they found that their children are defined by more than their MS. Other programs
offered through the NMSS provide support for parents of children with MS through
conference calls and list serves. A program to match children up with pen pals
has also been established.
If cognitive deficits are identified, a number of
strategies may be employed at schools to minimize the effect on daily function.
Examples include the following:
Preferential seating to reduce distractions
and to facilitate the teacher’s ability to monitor a child’s attention when
attention deficits are identified
Reduced work load and extended time limits on
tests (including standardized state evaluations) may be warranted if
processing speed or motor speed deficits exist
Assistance with visual tracking when reading
can assist students with visual spatial deficits
Occupational therapy to address visual spatial
deficits and improve map reading and navigational skills
Assistive technology to help students with
deficits in manual dexterity (e.g., voice recognition software for those
with writing difficulty)
Interventions to improve memory
Memory deficits pose unique challenges in the
classroom. Careful neuropsychological evaluation can identify specific areas of
deficiency such that encoding and retrieval can be maximized. For example,
memory deficits may be modality specific, that is, affecting verbal memory more
than memory for visually presented information. Such information can be helpful
in remediation planning. Research on cognitive rehabilitation in MS has been
mixed, but it is generally held that interventions that are compensatory in
nature, i.e., use cognitive strengths to work around areas of deficits, are more
successful than interventions designed to restore lost function. Whether
medications found to be effective in adults with cognitive impairments should be
considered in children is not yet known.
The psychosocial manifestations of MS in children and adolescents may affect the
patient’s self-image, role functioning, mood, and cognitive function.
Furthermore, the impact of having a family member with MS may have adverse
affects on the overall family function. Assessment and interventions for such
problems should ideally be multidisciplinary in nature and address the child’s
functioning at home, school, and among peers, as well as address the
ramifications of the diagnosis for the family. Successful treatment may involve
medication management, psychotherapy (for both the identified patient as well as
family members), and academic interventions.
- Kalb CD RTA, LaRocca NG, Caruso LS, Shawaryn
MA, Elkin R, Dince WM. The impact of early-onset multiple sclerosis on
cognitive and psychosocial indices. Int J MS Care 1999;1:2–17.
- MacAllister WS, Belman AL, Milazzo M, et al.
Cognitive functioning in children and adolescents with multiple sclerosis.
Neurology 2005;64: 1422–1425.
- Coupey SMNLS, Zeltzer LK. Chronic illness in
the adolescent. Philadelphia: Lippincott Williams & Wilkins, 2002.
- Hoare P, Mann H. Self-esteem and
behavioural adjustment in children with epilepsy and children with diabetes.
J Psychosom Res 1994;38:
- Neinstein LSRM Sherer S, Common concerns of
adolescents and their parents. Philadelphia: Lippincott Williams & Wilkins,
- Boris NWDR, Disruptive behavioral disorders.
Philadelphia: Saunders, 2004.
- Chesson RA, Chisholm D, Zaw W. Counseling
children with chronic physical illness. Patient Educ Couns 2004;55:331–338.
- Grey M, Cameron ME, Thurber FW. Coping and
adaptation in children with diabetes. Nurs Res 1991;40:144–149.
- Kager VA, Holden EW. Preliminary
investigation of the direct and moderating effects of family and individual
variables on the adjustment of children and adolescents with diabetes. J
Pediatr Psychol 1992;17: 491–502.
- Ghezzi A, Pozzilli C, Liguori M, et al.
Prospective study of multiple sclerosis with early onset. Mult Scler
- Perniola T, Russo MG, Margari L, et al.
Multiple sclerosis in childhood. Longitudinal study in 14 cases. Acta Neurol
- Duquette P, Murray TJ, Pleines J, et al.
Multiple sclerosis in childhood: clinical profile in 125 patients. J Pediatr
- Breitmayer BJ, Gallo AM, Knafl KA, Zoeller
LH. Social competence of school-aged children with chronic illnesses. J
Pediatr Nurs 1992;7:181–188.
- Knafl KA, Deatrick JA. How families
manage chronic conditions: an analysis of the concept of normalization. Res
Nurs Health 1986;9:215–
- Friedman IM, Litt IF. Adolescents’
compliance with therapeutic regimens. Psychological and social aspects and
intervention. J Adolesc
Health Care 1987;8:52–67.
- Mohr DC, Boudewyn AC, Likosky W, et al.
Injectable medication for the treatment of multiple sclerosis: the influence
of self-efficacy expectations and injection anxiety on adherence and ability
to self-inject. Ann Behav Med 2001;23:125–132.
- Rao SM, Leo GJ, Bernardin L, Unverzagt
F. Cognitive dysfunction in multiple sclerosis. I. Frequency, patterns, and
- Dale RC, de Sousa C, Chong WK, et al.
Acute disseminated encephalomyelitis, multiphasic disseminated
encephalomyelitis and multiple
sclerosis in children. Brain. 2000;123 Pt 12:2407–2422.
- Bye AM, Kendall B, Wilson J. Multiple
sclerosis in childhood: a new look. Dev Med Child Neurol 1985;27:215–222.
- Banwell BL, Anderson PE. The cognitive burden
of multiple sclerosis in children. Neurology 2005;64:891–894.
- McCann KK, Farmer JE, Patel N.
Childhood-onset multiple sclerosis and mood disorders: a case study. Child
- MacAllister WS, Krupp LB, Christodoulou C, et
al. Progressive cognitive decline in pediatric MS. Neurology 2005;64:A322.
- Stuart FA, Segal TY, Keady S. Adverse
psychological effects of corticosteroids in children and adolescents. Arch
Dis Child 2005;90:500–506.
- Achenbach TM, Ruffle TM. The Child Behavior
Checklist and related forms for assessing behavioral/emotional problems and
competencies. Pediatr Rev 2000;21:265–271.
- Stein MT, Difficult behavior: temper tantrums
to conduct disorders. Toronto: McGraw-Hill, 2002.