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Ross Hetherington

Jan 8 2013 Psy341 Psychopathology of childhood (Lecture 1) Developmental psychopathology 1. Historical issues: treatment of children o Infanticide common in Western society from antiquity. How to recognize the newborn that is worth Rearing o Soranus wanted to look at muscle tone. Would pick the child up, father would decease it, that would mean the child would be accepted o Most early stages also practices child sacrifices, 200-400 BC, sacrifices by their parents, if GOD grants them a wish such as, food etc o Mainly by the rich in these early societies o When bridge was built, ch8ild would be build in as sacrifices o Lloyd deMause and psychohistory (The history of Childhood, 1974)  Evolution of parent-child relationships are an independent source of social change  It is the vehicle of transmission of all cultural traits  Important, places a great deal on child rearing, how we treat children over the years  Child-rearing vehicle for transmission of all other cultural traits  Considered a fringe character for political thought o 1654: Massachusetts stubborn child act o 1750: odds: 3:1 against child surviving past age 5  Reasons why people have so many children  Health care, maltreatment, o Up to 100 years ago, children was considered a possession of the father th o Late 19 C: Society for the prevention of cruelty to children (youtube film)  Prevention of cruelty to animals, because to humans, no such prevention existed  Journey to protect children began – to prevent and protect o Convention on the rights of the child 1989 o The 3 P‟s:  Protection: abuse and neglect, exploitation, harmful substances  Provision: education, health care, basic economic welfare  Participation: freedom of thought, conscience, and religion voice in matters that affect that child  Adopted unanimously in General Assembly  Not yet ratified by U.S or Somalia – concerned with things such as united unions, convention would undermine authority etc. cannot get the ratification of this convention pass because of these concerns o Section 43 of Canada‟s Criminal Code provides a legal defense for use of physical punishment by parents  Upheld by Supreme Court in 2004, but imposed new limitations  Cannot be administered to children with disability, under the age of 2, etc  Continuous problem o Child abuse a continuing problem o Documented incidence of maltreatment: 10/1000 per year in U.S  That is reported and discovered  What kind of crazy maltreatment can go on for years, what is not reported? We don‟t know, undiscovered  It is a significant underestimate 2. Historical figures o Neglect: emotional, educational: 78.3% o Physical abuse: 10.8% o Sexual abuse: 7.6% o Psychological maltreatment: 7.6% o Medical neglect: 2.4% o Other: 9.6% o Jean Marc Itard (1734-1838)  French physician: interested in mute autism  “Wild Boy of Averyron”  Because he was mute, limited language ability  Victor mat have lived on own for seven years: initially mute made gradual progress  Pioneered behavior modification for severely impaired children  Scars: physical abuse  Uta Frith: problems with autism  Sequin: pupil of Itard  Developed treatment method for the intellectually disabled o Johann Pestalozzi (1746- 18267)  Swiss clergyman, educatory, author  Implemented ideas of Rousseau  Children should learn through activity and things, and not words  Help children develop innate powers of observation and perception  Believed in the innate power of children  Opened a number of schools in Switzerland 1830 o Lightner Witmer (1856-1956)  Established first child psychology clinic in the USA  Aim to study children with learning or behavior problems  Assist children struggling in school  Founder of „clinical psychology‟ o The Binet-Simon Scale (1905)  Binet: lawyer and psychologist  Simon: physician, Binet‟s RA  Education reform in France: screening for special education  Genesis of the modern IQ test, concept of mental age  Binet wished to remediate impoverished experience o Stanley Hall (1844-1924)  Studied childhood and adolescents systematically with questionnaires  He thought sex should be segregated for more effective education o Freud (1856-1939)  Psychosexual development  Unconscious, psychoanalysis  Idea of unconscious, successfully treated middle class people  Varies across time o Henry Goddard (1856-1957)  Translated Binet intelligence tests  Studied mental retardation  Proposed a scale of mental retardation based on IQ  51-70% : Moron  26-50%- imbecile  0- 25% - Idiot  Morons, according to Goddard, were unfit for society and should be removed from society either through institutionalization, sterilization, or both o Arnold Gesell:  Pediatrician and psychologist  Maturation: intrinsic unfolding of development independent of environmental influences  Has it own timetable, idea of marathon  3. Developmental psychopathology  Developmental psychopathology: an approach to studying disorders of childhood emphasizes the importance of developmental processes and tasks, context. Uses normative approach  Dante Cicchetti (1984): The emergence of developmental psychopathology. Child development General developmental psychology + Traditional academic psychology + Clinical psychology, psychiatry (& neurology)  Macroparadigm, abnormal with normal  Synthetic, cross-disciplinary  Joins cognitive science, neuroscience and genetics with more traditional disciplines (developmental and clinical)  Clinical (assessment, intervention) and theoretical/research concerns  Biopsychosocial: cross-disciplinary macroparadigm for understanding behavior and outcomes  Age period: Infancy to preschool o Task: attachment to caregivers, language, differentiation of self from environment, self- control and compliance  Age period: middle childhood o Task: school adjustment (attendance, appropriate conduct), academic achievement (learning to read), getting along with peers, rule-government conduct  Age period: adolescence o Task: successful transition to secondary schooling, academic achievement (learning skills needed for higher education or work), involvement in extracurricular activities, forming close friendships within and across gender, forming a cohesive sense of self-identity  SLIDES PAGE 11, TABLE 4. Frequency of psychological disorders o Psychological disorder: a pattern of behavioural, cognitive, emotional or physical symptoms shown by an individual. Associated with one or more of: 1. Distress (fear, sadness) 2. Disability or impairment in some area of function 3. Distress and disability increase risk of further suffering o Incidence rate: the number of new cases of a particular condition that appear within a specified period of time o Prevalence rate: all cases of a particular condition whether new or previously diagnosed that are observed within a specified period of time o Epidemiology: a hybrid science with psychological, sociological, demographic, and medical aspects that deals with the study of diseases, their distribution in populations and their impact o Graph: 1 in 4 or 5 youth will meet criteria for a mental disorder with severe impairments  Cumulative lifetime percentages of DSM-IV disorders: anxiety highest, behavior, mood then substance o Most consistent demographic association with parental education o Risk is greatest across all disorders among those whose parents were not college graduates o Considerations in the etiology of psychological disorders o Etiology: the study of the causes of diseases o Developmental pathways: sequences and timing of particular behaviours and relations among behaviours over time  Multifinality  Equfinality  Many contributors to disorders outcomes and variability in expression of disorders o Etiology of psychological disorders  Early maltreatment can lead to different negative outcomes  A -> environment -> (genotype) -> disorders  B -> genotype -> (environment) -> disorders o Risk factor: a variable that precedes a negative outcome and increases the change the outcome will occur  Acute stressors or chronic adversity (perinatal stress, death of parents, chronic poverty, parental psychopathology) o Proactive factor: a variable that increases the ability to avoid negative outcomes despite being at risk for psychopathology. Increases resilience  Individual strengths (good intellectual function, high self-esteem)  Positive family infleunces (close relationship, socioeconomic advantage)  Schools and community support (connections to social organizations, effective schools) o Resilience: ability to avoid risk situations, recover from misfortunes, sustain competence o In general direct causal pathways are very rare, usually consists of interaction of factors 5. Assessing disordered behavior o Competence: ability to adapt to the environment o Norm: number, range, or level that is representative of a group and may be used as a basis for comparison for individual cases. Behavior pattern typical of a group o Relying on norms, what we‟re observe and expect in a child, - their background, sex o Different kinds of norms o Socio-cultural norms: quite flexible, vary from society to society. Sets expectations  Differ among societies  Situational within a society  Gender differences in expectation o Developmental age norms  Typical rates at which skills, knowledge, and social-emotional behavior develop: developmental tasks  Age-appropriateness o Other factors that can influence behavior judgments: frequency, intensity, duration, qualitative differences, attitudes and expectations Added notes; Historical figures: American behaviorists  Importance on Thorndyke o Developed a sophisticated theory of learning o Law of effect: behavior is shaped by its consequences  John Watson o Influenced by classical conditioning of Pavlov o „father of behaviorism‟ o Little Albert experiments  Ethical issues  Albert likely cognitively impaired o Ended career working in advertising  B.F Skinner (1874-1949) o Operant conditioning o Applied behavioral theories to education  Teaching machine  Albert Bandura (1925-) o Social learning theory o Bobo the doll experiment o “learning would be exceedingly labourious, not to mention…” Developmental psychopathology  Paradigm: collective set of attitudes, assumptions, values, procedures, and techniques that form the generally accepted perspective of a particular discipline or group of investigators o Developmental: common general course of development o Biologic/ genetic: physiological view: malfunctioning biological system o Psychodynamic: specific cause for all behaviours – deterministic stage theory o Behavioural/ social learning: classical conditioning: operant conditioning: observational learning; cognitive behavioural approaches o Psychoeducational: arises from perspective of working with children o Family systems: family unit „organism‟ for study o Medical: behaviours symptomatic of diseases with specific etiologies Jan 15 2013 Psy341 Psychopathology of childhood (Lecture 2) Classification and assessment 1. Classification  Categorical approaches oCategorical vs dimensional classification o Categorical classification: assumes every diagnosis has a clear underlying cause and each disorder is fundamentally different (DSM-IV-IR) o Dimensional classification: assumes a number of different traits or dimensions of behavior all exist that children or adults posses to varying degrees (CBCI) oCategorical classification: o Classification: the process of categorizing things or events into mutually exclusive categories. Emphasis on description and grouping for scientific study o Diagnosis: the identification of a disease, disorder, or syndrome. Classification and categorization are central concerns. Emphasis on grouping for clinical purposes o Assessment: the process of evaluating the phenomenon: to be classified or diagnosed. Assessment is meaningful to the extent that it leads to effective intervention oCriteria for evaluation of systems: 1. Categories must be clearly defined 2. Defining features must occur together regularly 3. System must be reliable a. Inter-rater reliability b. Test-retest reliability 4. System must be value 5. System must have clinical utility  Covering everything that covers. Would not be useful if every patient comes in with every presentation. Must be a system that allows us to give reasonable and valid evaluation to cases that we see  DSM-IV-IR/ DSM-V oClinically derived classification system o International classification of Diseases (ICD-10)  Maintained by world health organization  Manual of major illnesses with universal numeric codes  Added mental disorders in 1948  DSM-IV-TR uses ICD-9 codes o DSM (1952) response to inadequacies of early ICD classifications o DSM-II (1968) neglected children and adolescents o DSM-III (1980)  Has included more categories on children  Clinical descriptions replaced with specific criteria  More child categories  Multiaxial system o DSM-III-R (1987)  Recognized subsets within diagnostic classifications  We see anxiety, ADHD, numbers of categories with sub-categories – multiaxial o DSM-IV (1994)  Greater focus on empirical validation and field trials  Neurosis disappears from psychiatry, remains alive. One dimension o the Big five personality factors o DSM-IV-TR (2000)  Updated text to include information and findings about prevalence and associated features  Most test of DSM-IV are not revised  Multiaxial system: Axes of DSM-IV-TR  Axis I: Clinical disorders, other conditions that may be a focus of clinical attention  Axis II: personality disorders, mental retardation  Axis IV: psychosocial and environmental problems  Axis V: Global assessment of functioning (GAF) o Rutter’s recommendations for DSM-V (required reading) 1. Remove grouping of disorders with onset specific to childhood.  Specify age variations for all disorders. 2. Add a grouping for known disorders that require further validity testing. 3. Major reduction in the number of diagnoses. 4. Use a combined categorical and dimensional approach. 5. Exclude the criterion of impairment. o DSM-V  Multiaxial system is gone. Most text not revised  Embrace cross-cutting issues: developmental; age-related; cultural  Gender Identity Disorder now Gender Dysphoric Disorder: less stigmatizing  Diagnoses involving children:  New condition: Disruptive Mood Disorder with Dysregulation  Attempt to resolve paediatric bipolar disorder controversial  Asperger syndrome merged into new autism spectrum disorder  Revision could result in exclusion of some previously diagnosed  Changes:  3 sections: 1. Introduction and use of the manual 2. Categorical disorders grouped by similarities 3. Conditions that require further research. Cultural considerations o Criticisms of DSM approach 1. All are multi-determined. We all have mild anxiety for example, this is life 2. Focus on individual psychopathology. Lack of emphasis on environment and context. 3. Focus on superficial description does not capture complexity of disorder and adaptations. 4. Extremely high rates of comorbidity. 5. Gives less attention to disorders of infancy and childhood than those of adulthood. 6. Categorical approach can result in denial of special services.  Dimensional approaches – empirically based approach, clinically observation oAims to captures variation on a range of dimensions oMaking use of developmental context oUseful for research oBUT o Dependent on sampling. Age and sex, and informant o Insensitivity to context oChild behavior checklist (CBCL), best known to child psychopathology o 2 broadband syndromes:  Externalizing problems  Internalizing problems  Broadband syndromes are more robust than narrowband syndromes o 8 Narrowband syndromes:  Withdrawn, anxious/depressed, social problems, somatic complaints, thought problems, attention problems, delinquent behavior, aggressive behaviour  Labeling oProblems: 1. Labels are for disorders, not children 2. Information is lost: Neglect of individual 3. Logical fallacy: label causes behaviour 4. Categories ignore reporting biases  Considering the threats of validity oVirtues: 1. Uniform categories, reduces variability 2. Diagnosis leads to correct intervention 3. Prognostic information 4. Facilitates efficient information exchange Assessment  Interviews  Unstructured vs. structured o Vary in how structured they are  Some interviews are highly structured 1. Highly structured interviews are scheduled for affective disorders and schizophrenia 2. Semi-structured: general guidelines or topic areas  ADVS: o Motivation o Flexibility o Historical information o Evaluate beliefs and attitudes  DISADVS: o Reliability and validity – we need to vary the positions of the questions in an interview o Cueing, bias o Difficult skill to master o Requires a high level of personal sensitivity and openness o Inevitable, in a typical context scenario, we would have an interviewer and the child or parent or teacher-interviewing positions of a child etc. Open ended question are usually better because we get more information out of it e.g. why? How? We can follow up  Observations o Naturalistic vs. structured  Useful with primary school kids 1. Narrative- most frequency used one 2. Interval- can be useful 3. Event 4. Ratings o ADVS: o Everyday behavior- can be very useful, looking at a child‟s social learning skills o Interpersonal behavior, learning styles o Verification of reported behaviors o DISADV: o Defining behaviours o Interpreting behaviours o Psychometric concepts I: statistics o Mean: the „average‟ of a set of data (scores on a test, height of students, IQs) o Standard deviation: a measure of the variability present in a set of data o Frequency distribution: a graphic representation of a set of data, illustrating the number of individuals obtaining a score at each level on the scale of measurement o Normal distribution: a symmetrical (frequency) distribution with the mean in the middle. The frequency tapers off as you move father from the middle in either direction o A good model for many naturally occurring distributions (height, IQ) o 68% of all obtained scores will fall within 1 standard deviation of the mean on either side o 95% for 2 standard deviation o Psychometric concepts II: standardized testing o Standardized tests with respect to:  1. Normative group  2. Administration  3. Scoring  Giving standardized instructions -, normative groups- looking at where individual fails, (normal distribution) in comparison to a normative group  Challenging to learn to do quickly (e.g. colored sides blocks) o Reliability; the extent to which some attribute is measured in a repeatable way. Refers to consistency of measurement. Reliability coefficient (rxx) (PRECISION)  1. Test-retest  2. Alternate form  3. Internal consistency o Validity: the extent to which the test measures what it was intended to measure. Refers to meaningfulness of test (BIAS)  1. Content validity  2. Concurrent validity  3. Predictive validity – predicting how they will do in future tests  4. Construct validity – more challenging in cases like intelligence. Looking at whether it is measuring what it‟s supposed to measure o Standardized tests: intelligence tests o Classical test theory: validity cannot exceed reliability o David Wechsler (1896-1981)  WWI: worked with Pearson and Spearman, established “DQ” replacing mental age o WISC -IV  10 mandatory, 5 supplementary subtests (x = 10; SD= 3)  Full Scale IQ (FSIQ) + four functional indices (x = 100; SD= 15)  Verbal Comprehension Index (VCI)  Similarities, Vocabulary, Comprehension  Perceptual Reasoning Index (PRI)  Matrix Reasoning: figuring out what block goes into what space. Good measure for nonverbal reasoning  Block Design  Picture Concepts  Working Memory Index (WMI)  Letter-Number Sequencing  Digit Span: classic measure of sequencing  Processing Speed Index (PSI)  Symbol Search, Coding o Wechsler scales reliability and validity  Normative sample for WISC-IV  2,200 children, 200 in each of 11 age groups, stratified on age; sex; parent education; region; race/ethnicity, 16 special groups, equivalency studies performed with WPPSI-III and WAIS-IV, extensive validity studies with academic; memory; functional and emotional standardized instruments o Other common used intelligence tests:  SB-5: Stanford-Binet Intelligence Scales 5 edition (2-85 years)  Fluid reasoning, knowledge, quantitative reasoning, visual-spatial processing, working memory. Tested in both verbal and nonverbal domains  K-ABC II: Kaufman Assessment Battery for Children (3-18 years)  Possible to perform language-free assessment, Luria simultaneous/ sequential model) th  VMI: Developmental Test of Visual-Motor Integration 6 edition  Copy 24 geometric forms of increasing complexity  Possible to examine component skills (visual perception, motor)  Yields standardized scores (x = 100; SD= 15)  Normed for ages 3 to adult th  PPVT-4: Peabody picture vocabulary test, 4 edition  Four-picture multiple choice items for spoken words  Yields standardized scores (x = 100; SD= 15)  Normed for ages 2:5 to 90  WRAT-4: Wide Range achievement test  Academic screening test  Word Reading, Sentence Comprehension, Spelling, Math Computation  Yields standardized scores (x = 100; SD= 15)  Normed for ages 5 to 94  WIAT-III: Wechsler individual achievement test 3 edition  Comprehensive test or oral and written academic skills  Subtests organized in Reading, Math, Written Language, Oral Language  Yields standardized scores (x = 100; SD= 15) and Grade Equivalents  Normed for ages 4:0 to 50:11 and Grades pre-K to 12  WIAT-II no longer available but widely used rd  WRMT-III: woodcock reading mastery test 3 edition  Diagnostic reading test examining domains of reading (decoding, word  Reading, word and passage comprehension, phonological awareness  Rapid automatic naming, listening comprehension, reading fluency)  Yields standardized scores (x = 100; SD= 15)  Normed for ages 4:6 to 79:11 and Grades K to 12  Word Attack subtest: reading pseudowords –pure test of decoding skills  WRMT-R/NU still available and widely used o Behavior and emotions:  BASC-2: Behaviour assessment system for children 2 ndedition  Multi-dimensional behaviour and emotional rating scales  Three age-based forms with norms for ages 2:0 to 21:11  Forms for parents, teachers and self-report for youth: cross-validation  Composites: Internalizing, Externalizing, and School Problems; Behavioral  Symptoms and Adaptive Skills  9 –15 composite scores depending on respondent  Yields T-scores (x = 50; SD= 10) and percentiles  CBCL: children behavior checklist  Pre-school and school-age forms available  Internalizing, Externalizing and Total Problems  8 syndrome scales, 3 competency scales (Academic, Social, Activities)  Yields T-scores (x = 50; SD= 10) and percentiles  Normed for ages 6 to 18  Teacher’s Report Form o Similar scales, useful for cross-informant validation  Youth Self-Report o Similar scales, youth 11 to 18  CDI 2: children’s depression inventory 2 nded  Self-rating, parent, and teacher forms  28 self-rating items, E.g. I am sad once in a while, I am sad many times. I am sad all the time  Yields T-scores for total and six dimensions (e.g., Negative Self-Esteem)  Normed for ages 7 to 17 nd  MASC II: multidimensional anxiety scale for children 2 ed  50 item parent and self-rating items  Yields T-scores (x = 50; SD= 10) on six dimensions of anxiety  Normed for ages 8 to 19  MASC still available and widely used o Projective tests  TAT: thematic appreciation test  Set of 31 images, generate narrative to images  Typically set of 10-20 pictures, used for adolescents and adults  Qualitative interpretation  H-T-P: house-tree-person  Free drawing of a house, a tree, and a person  Useful with younger children, provide loose structure for an interview  Interpreted qualitatively o Added Slide: o The psychological report (Jan 22 2013) o Length and content varies depending upon practice area, referral question and purpose o Structures are broadly similar o Putting information together and generate a report for the audience  E.g. checklist, report can be up to 50 pages long for medical review cases, can be enormous if cases have been going for a long time – hospital records along with extensive reports with what we did in the assessment, follows up discussion  Length can vary but structure is very similar o E.g. psychoeducational report  For children, 5-8 pages long  Typical child neuropsychology report can be longer, a lot more to gather 1. Demographic information: age, grade 2. Referral question: 3. Assessments methods used *: name of assessment 4. Background information: can be brief, medium – half page paragraph. In medical cases, it can be longer because methods or length of time to assess may be longer to review and discuss. Also hobbies etc. 5. Assessment results: Cognitive ability, Visual motor, Language, Memory, Academic skill‟s – WRAT (screening test), WYATT 6. Observations and psychosocial: Behaviour and emotions, including observation 7. Summary and conclusion: Includes diagnosis, you try to explain what is going on, considered opinion, answering the referral question. School report is reviewed very briefly usually, won t go grade by grade but usually only looking at previous report cards, then will be discussed Jan 22 2013 Psy341 Psychopathology of childhood (Lecture 3) General etiological factors I: congenital anomalies Prevalence of congenital anomalies Congenital anomaly: an abnormality of structure, function or metabolism that is present at birth, even if not diagnosed until later in life, that results in a physical or mental disability or is fatal. Not synonymous with genetic defect  Canada: 2-3% of 350,000 children born annually have some congenital anomaly  15%-25% recognized chromosome or single gene cause  8%-12% environmental causes (maternal-related, drug or chemical exposures)  20%-25% multifactorial inheritance  40%-60% unexplained causes  Mortality rate has been reduced in the last 30 years  There are different factors that we understand Genetic disorders  Single gene effects o Defects 1 in 250 o Sickle cell diseases, cystic dibrosis, PKU, Tay-Sachs  Polygenic (multifactorial) effects: autism, mental retardation, affective disorders, conduct disorders, ADHD, learning disabilities  Chromosomal anomaly: varies by region  Down syndrome: 1 in 600 (varies by maternal age and region)  Genetic factors in congenital anomalies o Genetic disorders account for 11% of all admissions to paediatric hospitals in Canada o Another 19% are due to other congenital anomalies o 12% of all admissions to adult hospitals related to genetic causes o 20-30% of infant deaths due to genetic defects  Teratogens o Environmental exposures often involve multiple agents o Establishing cause-effect relations requires well-designed epidemiological work  Frombonne2006: thimerosaland autism o Infectious agents (rubella –German measles) o Drugs: clear effects  Fetal alcohol syndrome  Single gene effects: sickle cell disease o Punnet square: sickle cell anemia  Sickle cell disease: a recessively transmitted group of disorders directly affecting haemoglobin, involving a single-base mutation. Sickle haemoglobin, involving a single-base mutation. Sickle haemoglobin polymerizes when deoxygenated resulting in an inflexible sickle-shaped red blood cell which can impede local capillary flow o Present in regions where malaria endemic, heterozygote superiority o Prevalence: 1 in 350 African-American children in USA o Phenotype extremely variable o HbSS = homozygotic for sickle allele: sickle cell anemia o HbSC and a number of other types are compound heterozygous states  Only one copy of sickle allele and one copy of another abnormal haemoglobin allele. Often less severe.  Vaso-occlusive crisis: a common painful complication of sickle cell anemia in adolescents and adults. It is a form of sickle cell crisis. A condition that is most common in African, Hispanic, and Mediterranean origin, though it is not limited to just these races. It occurs when the circulation of blood vessels is obstructed by sickled red blood cells, causing ischemic injuries. The most common complaint is of pain, and recurrent episodes may cause irreversible organ damage. o Acute regional pain: dactylitis (inflammation of digit e.g. swollen hands), arthropathy (joint disease), long bone infarction, abdominal pain, acute chest syndrome, low back pain o Chronic pain: avascular necrosis of the shoulder or hip (bone death), leg ulcers o Other sources of pain: headaches, pneumonia, post-operative  Pain and the lives of children and adolescents o 43% report intense pain o Pain reported on 30%-35% of days o School absences up to 21% of days o Play and social activity disrupted, sleep disturbed, severe pain related to depression, anger, peer difficulties  Sickle cell o Health related quality of life (HRQoL)  Health: a state of complete physical, mental, and social well-being, nd not merely the absence of disease or infirmity o Why study HRQoL?  Describes health status  Identify different levels of morbidity  Improve clinical decision making  Evaluate treatment outcome o Graph:  Starting to peak and moving to more areas of pediatric psychology and child health research o Objective: creation of a disease-specific HRQoL instrument  Approaches, general vs disease specific, informant, developmental perspective, domains o Tradition Domains:  Somatic sensation (disease rate), physical function, psychological function (cognitive and psychosocial), social and family function  Sickle Cell Disease (PAIN) -> Traditional Domains o Objective: creation of a disease-specific QOL (quality of life) instrument  Phase I: Instrument creation  Item generation o Focus group: 2 children, 2 adolescents, 4 parents, 1 professionals  Somatic sensation –statements  Physical function  Psychological function  Social function  Item reduction o Interim questionnaire: 119 items, administered to 65 children, compute impact  E.g. have you ever had trouble walking or getting around because of pain? ( items yes or no, not important/extremely important, 1234567)  IMPACT = FREQUENCY x MEAN IMPORTANCE RATING  Somatic sensation: E.g. how often do you have severe sickle cell pain? Impact:346  Physical function: E.g. has pain, or the possibility of pain ever prevented you from playing sports? Impact: 245  Psychological function: E.g. have you ever blamed anyone or anything because you have sickle cell? Impact: 77  Social function: have you ever felt too ashamed or embarrassed to tell friends that you have sickle cell? Impact: 152  Phase II: instrument validation  Web-based version  Assess 100 children 2 times, 2 months apart  Reliability: children with stable disease  Responsiveness: children with change in state  Validity: Health Utility Index, PedsQL, pain diary, parents measures  Early version: somatic sensation, physical function, psychological function, social function  Final version: interference with daily function/wellbeing, social functioning, physical functioning o Academic problems:  The issues of academic problems in SCD  How do you measure academic performance? o Qualitative reports, school report cards, standardized tests: administered in a standardized way, results compared to a normative sample based on age or grade to yield a standard score o Comparison is based on: st o 1. Criterion or standard: pass/fail; 1 class standing E.g. are children with SCD making the grade? o 2. Comparison to normative sample: above, at, or below average E.g. are children with SCD similar to a national group? o 3. Comparison to a specific group: matched controlled, siblings E.g. Does SCD influence performance?  Research tells us: academic problems associated with demonstrated neurologic findings with or without clinical signs. In the absence of lesions on MRI, academic performance may be similar to controls o Issues: neuroimaging qualitative not quantitative, important studies report cognitive or neuropsychological performance, but not academic performance  Early research: o Nettles: n=32, matched controls  Children with SCD lower than controls on CAT scores  Children with HbSC lower than children with HbSS o Richard and Burlew:  No difference on school grades, CAT scores  Issue of matching controls raised  Risk factors for academic problems in SCD  1. Complications: o High rate of absences, painful episodes, treatment o Distraction in class caused by symptoms  2. General factors: o Normal variation in ability o Differences in environment and experience  3. Stroke: o HbSS disease highest risk o 7% with clinical signs in some small studies o (Strokes in SCD patients are very rare)  4. Silent stroke: o 16% with no clinical signs o Frequently misclassified as stroke-free o Abnormalities on MRI, normal neurologic examination, cognitive deficits o HbSS (sickle cell anemia): 27% by age 6, 37% by age 14  5 . Grey matter irregularities on MRI o Present in HbSS and HbSC disease o Symptom-free, no MRI lesions: T1 correlated with cognitive measures  6. Vascular irregularities on MRA o Enlarged basilar artery as marker o Symptom-free: size correlated with cognitive measures  7. Reduced blood hematocrit o Hematocrit: the volume percentage of red blood cells in blood o Associated with MRI abnormalities and cognitive deficits o Mechanisms: chronic hypoxia  8. Irregular flow rates in cerebral arteries o As measured by Transcranial Doppler: inexpensive screening technique to see if the blood flow is within normal parameters o High blood flow velocity = risk for stroke o STOP multicenter trial  Graph: partially squares: multivariant analysis- looking at blood flow and response o Older the child, worser the performance; performance gets worse overtime  Blood flow velocity and cognition o Cerbrovascular flow rates predicts neuropsychological profile o Pattern of lateralization contrary to prediction o Lower right hemisphere velocities associated with reduced performance o Age is negatively correlated with performance o Academic solutions  Academic interventions  Screening/clinical assessments o Early screening program: all 6 year olds  Discuss cognitive strengths and weaknesses  Strategies to optimize academic performance  In the home  In the school  Contact school, discuss child‟s needs  Referral to SickKids classroom academic intervention o Brief neuropsychological assessment of clinical referrals  Interventions: o Contact with home school, school-based tutoring (1:1 tutoring), section 20 classroom (successful with all recommendations for special placement), early reading workshops for parents (for parents of children 3 to 7, materials provided, theories of reading, Direct instruction: teacher directed, scripted and evidence based taught)  Out schools and their programs  Chromosomal irregularities o Definitions: o Mitosis: process in which somatic cells divide into daughter cells with a full set (46) of chromosomes. o Meiosis: cell-division process in the formation of gametes. Two successive cell divisions. Chromosomes duplicated only once, yielding daughter cells with 23 chromosomes. o Karyotype: a systematic array of the chromosomes of a single cell in graphic form. o Nondisjunction: elements of a duplicated chromosome do not separate properly, resulting in 2 abnormal cells, one with an extra chromosome and one with a missing chromosome  These conditions are called aneuploidy. In the zygote, trisomy or monosomy o Down syndrome: trisomy-21 nd o Tuner syndrome: females with damaged or missing 2 X chromosome (X0) o Klinefelter syndrome: males with extra X chromosome (XXY) o Jacobs syndrome: males with extra Y chromosome (XYY) – amniocentesis  Neurodevelopmental disorders o Zygote: initial cell formed from two gametes after fertilization o Blastocyst: forms from zygotes during first week of differentiation, contains embryonic disk  Gastrulation: primary germ layer forms: ectoderm, mesoderm, endoderm o Ectoderm: skin, sense organs, development of the CNS  Neurlation: |neural plate -> neural tube| -> CNS o Mesoderm: muscular, circulatory, skeletal systems o Endoderm: digestive glands, alimentary canal  Types of anomalous neural development 1. Abnormalities in bulk growth of brain (micrencephaly) 2. Dysplasias of the cerebral hemispheres (agenesis of corpus callosum) 3. Abnormalities of neural tube & fusion defects (spina bifida) 4. Malformations of cerebral cortex (lissencephaly, ectopia) Disorders: Spina bidifa with hydrocephalus o Spina bifida: a neural tube defect, which in its most severe form, results in an outpouching of the spinal column know as myelomeningocele (MMC) o Hydrocephalus: a disturbance of intracranial pressure leading to enlargement of the ventricular system within the brain o Arnold-Chiari II: a malformation of the posterior structures of the brain found in 95% of all cases of MMC – mediates with visual spatial processing  Issues: o 1. Do adults with SBH have similar visual perceptual deficits to those observed in children? o 2. Are visual perceptual deficits, if present, related to medical variables? Level of spinal lesion, number of shunt revisions  Procedures: o WAIS-R: verbal IQ (VIQ), performance IQ (PIQ) o Mircrocog: spatial processing index- clocks +tic tac subtests, hits and reaction times  Subtests: PROFICIENCY = ACCURACY x SPEED o Test of everyday attent
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