Number 56 • January 2016



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Manifestations of Congenital Rubella syndrome in Canada: a follow-up study

Stan Munroe

The Canadian Deafblind Association (CDBA) National Office1 recently completed a follow up to its survey of the late emerging manifestations of congenital rubella syndrome in Canada published in 19992. This article3 presents some extracts from the full report, including the study rationale, description of the sampling method and a few tables of the findings. The full report will soon be available on the CDBA National website.


Study Rationale

The rationale for conducting this follow up project was to verify the previous findings as well as report any changes to the late manifestations over a period of fifteen years.


Sampling Method

Volunteers known to have CRS in Canada were sought through contact with various independent living residences for individuals with deafblindness and others known to have CRS and living elsewhere in Canada. Participants were asked to report (via a questionnaire) the incidence (including an approximate age of the onset) of observed manifestations affecting each individual’s sensory, neurological, vascular, musculoskeletal, endocrine, respiratory and gastrointestinal system. In addition, a sociological snapshot of the participants was provided through answers to questions related to their level of communication and education, employment and accommodation history.


General demographics of the sample

Fifty-three individuals (29 males and 24 females) ranging in ages 29 to 62 years participated in this follow-up study. This compares to 100 who participated in the earlier 1999 study. Seventy percent of the current individuals were born during the period 1966–1980, corresponding to the period before rubella in Canada was largely contained through immunization programs.




Reported incidence rate of ‘early onset manifestations’4 from the sample of 53 individuals with CRS

Vision Loss (Congenital cataracts)

96.2%

Hearing Loss

92.5%

Combined Vision & Hearing Loss

88.7%

Cardiac Defect*

64.0%

Combined Vision loss, Hearing Loss & congenital cardiac defect

64.1%

Cardiac surgery

27.0%

* Cardiac defects reported included: heart murmur (31.4%), patent ductus arteriosis (28.6%), pulmonary stenosis (28.6%).





Reported incidence rate of ‘delayed manifestations’5

Glaucoma (n=47)

53.2%

Corneal damage (n=42)

28.6%

Detached retina (n=42)

21.7%

Late onset change in hearing (n=36)

25.0%

Hypertension (n=50)

18.0%

High cholesterol (n=50)

20.0%

Respiratory problems (environmental allergies, lung problems and pneumonia) (n=51)

52.9%

Allergies to various drugs

(n=51)


35.3%

Such spinal conditions as scoliosis or kyphosis (n=51)

19.6%

Diabetes

(Types 1 &2) (n=52)



21.2%

Thyroid dysfunction (hyper and hypo-thyroidism) (n=52)

43.2%

Various gastrointestinal issues (n=53)

50.9%



Reported incidence rate of Neurological Impairment from a
sample of 51 individuals with CRS


Reporting all neurological issues

49.0%

Incidence of seizures

27.5%

Signs* of motor skill degeneration

27.5%

Demonstrating at least one sign of cognitive degeneration

33.3%

* Signs of cognitive degeneration reported were: poor attention and distraction, disorientation, impaired short term memory loss.


Reported incidence rate of Psychosocial Behavioural Issues

Stereotypical behavior (n=47)

72.3%

Self-injurious behavior (n=52)

71.2%

Compulsive behavior (n=50)

42.0%

Ritualistic behavior (n=51)

56.9%

Sameness behavior (n=49)

44.9%

Restricted behavior (n=47)

34.0%

Aggression to others (n=52)

51.9%

Episodes of anger or rage (n=52)

69.2%



Reported incidence rate of Signs of Depression

Reporting signs* of depression
(n=47)

20
(44.7%)

Rate of change in signs of depression in past year:

Increased (10.6%); Decreased (36.8%)

Remained the same (52.6%)


* Signs of depression reported were: appearing depressed; avoiding social contact, crying frequently, not taking part in activities once of interest; appearing restless or fidgety; complaining of headaches or other aches and pains; eating too much or too little.
According to Dr. Jude Nicholas6 the reported signs of decreased mood (or depression) of individuals in this study could be associated with the reported psychosocial behavioural issues. These emotional problems related to regulation issues may affect the deafblind person`s capacity to regulate their emotions or emotional responses. Emotion dysregulation in turn may lead to increased social isolation, escalation of aggressive-disruptive behaviors and high levels of negative affect such as depression.
Discussion

The findings reported in the complete follow-up study not only validated the results from the previous study but demonstrated higher rates of incidence of later manifestations for many of the medical conditions examined. Examples reported include: the incidence of glaucoma (54.2% in 2015 versus 32.3% reported in 1999); the incidence of hypertension (18% in 2015 versus 7.2% in 1999); and the incidence of endocrine dysfunction (42.3% in 2015 vs 21.2% in 1999); over twice as many individuals showed indications of cognitive skills degeneration in 2015 compared to 1999.

Difficulties with behavioural or psychosocial control were similar between the two surveys, confirming the link of these behaviours to emotional disorders observed in individuals who are congenitally deafblind, according to Dr. Jude Nicholas.

This observation would suggest that, like the similar incidence of seizures (27.5% in the 2015 survey versus 30% in 1999), the difficulties with behavioural control are established congenital issues that appear as late onset manifestations.


Final comments

The data contained in this study confirms that congenital rubella syndrome is a devastating disease that continues to manifest itself throughout the life of the individual.

Based on the extent of the medical conditions reported in this sample of the CRS population, it is important that individuals with CRS be monitored closely for changes in their physical and emotional health.

While mandatory rubella immunization programs adopted throughout the world has sharply limited its impact, it is critical that these efforts continue unabated. Further, mandatory immunization initiatives must be expanded to blanket all of Eastern Europe, Africa and Asia if there is any hope of ensuring that children and eventually adults will not face the medical crises that this virus creates.

For more information contact Stan Munroe, CDBA Rubella project leader (munroes@seaside.ns.ca)
1 www.cdbanational.com. The Canadian Deafblind Association is a small corporate member of DbI.

2 A Survey of Late Emerging Manifestations of Congenital Rubella Syndrome in Canada. The Canadian Deafblind and Rubella Association, 1999.

3 Presented in a modified form as a poster presentation (May 28, 2015) at the 16th DbI Conference, Bucharest Romania

4 Those manifestations reported in newborns or as very young children.

5 Those manifestations reported as developing during later childhood or progressively through adulthood.

6 Dr.Jude Nicholas is a Neuropsychologist living in Norway. (Email: jude.nicholas@statped.no)

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