Background
Barriers to accessing a neurodevelopmental disorder diagnosis
Parents’ perspective on the diagnostic services trajectory
Method
Participants
Variables | n | % Missing | % |
---|---|---|---|
Civil Status | 250 | 3.5% | |
1. Married or common-law partners | 182 | 72.8% | |
2. Separated or divorced | 16 | 6.4% | |
3. Stepfamily | 12 | 4.8% | |
4. Single | 40 | 16.0% | |
Annual household income (CAD) | 235 | 9.3% | |
1. $10,000-29,999 | 64 | 27.2% | |
2. $30,000-49,999 | 52 | 22.1% | |
3. $50,000-69,999 | 35 | 14.9% | |
4. $70,000-89,999 | 24 | 10.2% | |
5. $90,000-119,999 | 28 | 11.9% | |
6. $120,000-139,999 | 32 | 13.6% | |
Mothers’ level of education | 245 | 4.6% | |
1. High school or lower | 57 | 23.3% | |
2. DCS / DVSa | 64 | 26.1% | |
3. University | 124 | 50.6% | |
Fathers’ level of education | 231 | 10.8% | |
1. High school or lower | 56 | 24.2% | |
2. DCS / DVS | 57 | 24.7% | |
3. University | 118 | 51.1% | |
Mothers’ occupation | 249 | 3.9% | |
1. Full-time, salaried employee | 88 | 35.3% | |
2. Part-time, salaried employee | 39 | 15.7% | |
3. Contract worker | 5 | 2.0% | |
4. Homemaker | 94 | 37.8% | |
5. Student | 17 | 6.8% | |
6. Other (on leave, retired) | 6 | 2.4% | |
Fathers’ occupation | 233 | 10.0% | |
1. Full-time, salaried employee | 180 | 77.3% | |
2. Part-time, salaried employee | 10 | 4.3% | |
3. Contract worker | 2 | 0.9% | |
4. Homemaker | 19 | 8.2% | |
5. Student | 12 | 5.2% | |
6. Other (retired, unemployed, imprisoned) | 10 | 4.3% | |
Mothers’ place of birth | 249 | 3.9% | |
1. Canada | 72 | 28.9% | |
2. United States | 1 | 0.4% | |
3. Central or South America | 41 | 16.5% | |
4. Africa | 75 | 30.1% | |
5. Asia and Middle East | 41 | 16.5% | |
6. Europe | 17 | 6.8% | |
7. Oceania | 2 | 0.8% | |
Fathers’ place of birth | 242 | 6.6% | |
1. Canada | 63 | 26.0% | |
2. United States | 3 | 1.2% | |
3. Central or South America | 38 | 15.7% | |
4. Africa | 80 | 33.1% | |
5. Asia and Middle East | 48 | 19.8% | |
6. Europe | 9 | 3.7% | |
7. Oceania | 1 | 0.4% | |
Language spoken at home | 249 | 3.9% | |
1. French (with or without other languages) | 149 | 59.9% | |
2. English (with or without languages, except French) | 52 | 20.9% | |
3. Other | 48 | 19.3% | |
Presence of mental health diagnoses in siblings | 239 | 7.7% | |
No | 181 | 75.7% | |
Yes | 58 | 24.3% | |
Presence of mental health diagnoses for the mother | 245 | 5.8% | |
No | 216 | 88.1% | |
Yes | 29 | 11.9% | |
Presence of mental health diagnoses for the father | 246 | 5.0% | |
No | 207 | 84.2% | |
Yes | 39 | 15.9% |
Variables | n | Missing | % | |||
---|---|---|---|---|---|---|
Child’s primary diagnosis | 259 | 0.0% | ||||
1. Autism spectrum disorder | 142 | 54.8% | ||||
2. Global developmental delay or intellectual disability | 9 | 3.5% | ||||
3. Autism spectrum disorder and global intellectual delay or intellectual disability | 76 | 29.3% | ||||
4. Other (e.g., language disorders, attention deficit/hyperactivity disorder, neurodevelopmental disorder requiring reevaluation) | 32 | 12.4% | ||||
n | Missing | M | SD | Range | ||
ABAS GAC | 248 | 4.3% | 72.1 | 16.1 | 40–114 | |
CBCL Total Problems | 243 | 6.2% | 60.1 | 12.5 | 35–93 |
Measures
Clinical records
Services trajectory evaluation
Procedure
Analysis
Results
Variable | n | % Missing | M | SD | Range |
---|---|---|---|---|---|
Age of the child at the time of first concerns | 240 | 7.3% | 22.3 | 9.9 | 0a-60 |
Waiting time for a consultation about first concerns | 211 | 18.5% | 2.7 | 5.0 | 0–36 |
Age of the child at the time of diagnosis | 259 | 0.0% | 48.0 | 12.9 | 23.8–75.4 |
Time elapsed between first concerns and diagnosis | 241 | 7.0% | 26.2 | 11.2 | 3.2–58.1 |
Time elapsed between first concerns and initial assessment | 259 | 0.0% | 3.2 | 1.5 | 0.7–13.9 |
Number of providers consulted prior to assessment | 244 | 5.8% | 3.2 | 1.5 | 0–7 |
Number of providers consulted at the assessment clinic | 241 | 7.0% | 3.5 | 1.1 | 1–6 |
Total number of providers consulted prior to the diagnosis | 247 | 4.6% | 6.6 | 2.0 | 2–12 |
n | % Missing | % | |
---|---|---|---|
Source of first concerns | 211 | 18.5% | |
Family members | 141 | 66.8% | |
Mother only | 94 | 44.5% | |
Father only | 7 | 3.3% | |
Both parents | 31 | 14.7% | |
Other relative | 9 | 4.3% | |
Non-family members | 70 | 33.2% | |
Daycare educator | 31 | 14.7% | |
Pediatrician or family physician | 26 | 12.3% | |
Other medical provider | 13 | 6.2% | |
Nature of first concerns | 246 | 5.0% | |
Language delay | 156 | 63.4% | |
Atypical motor development | 32 | 13.0% | |
Atypical social development | 28 | 11.4% | |
Challenging behavior | 20 | 8.1% | |
Other concerns | 10 | 4.1% | |
Initial consultation about first concerns | 244 | 5.8% | |
Pediatrician | 126 | 51.6% | |
Family physician | 47 | 19.3% | |
Speech-language pathologist | 19 | 7.8% | |
Other healthcare provider | 52 | 21.3% |
Quality of the trajectory: determinants and phases
Determinant | Phase 1: Pre-Assessment | Phase 2: Assessment and Diagnosis | Change | |||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Frequencies | Mean | SD | Subsets | Frequencies | Mean | SD | Subsets | |||||||
Negative | Neutral | Positive | Negative | Neutral | Positive | d | ||||||||
Continuity | 7% | 0% | 93% | 4.0 | 0.7 | a | 2% | 0% | 98% | 4.4 | 0.6 | a | 0.4*** | .54 |
Access | 20% | 9% | 71% | 3.7 | 1.0 | b | 3% | 2% | 95% | 4.4 | 0.7 | a | 0.7*** | .70 |
Flexibility | 14% | 11% | 75% | 3.8 | 0.9 | c | 3% | 7% | 91% | 4.3 | 0.7 | b | 0.5*** | .48 |
Validity | 16% | 7% | 77% | 3.8 | 1.0 | b,c | 4% | 4% | 91% | 4.4 | 0.8 | a,b | 0.6*** | .47 |
Empathy | 5% | 9% | 86% | 4.2 | 0.8 | d | 2% | 4% | 94% | 4.6 | 0.7 | c | 0.4*** | .41 |
Global Assessment | Frequencies | M | SD | Subsets | ||
---|---|---|---|---|---|---|
Negative | Neutral | Positive | ||||
Continuity | 13% | 8% | 79% | 4.0 | 1.0 | a |
Access | 25% | 16% | 59% | 3.5 | 1.2 | b |
Flexibility | 10% | 18% | 72% | 3.9 | 1.0 | a |
Validity | 6% | 11% | 84% | 4.2 | 0.8 | c |
Empathy | 3% | 10% | 87% | 4.3 | 0.8 | c |
Factors associated with quality of the trajectory
Predictor | Phase 1 | Phase 2 | Overall Trajectory | ||||
---|---|---|---|---|---|---|---|
Continuity | Access | Flexibility | Validity | Empathy | |||
Systemic | |||||||
Age at first concern | −1.57 | .44 | −.34 | −.65 | −1.33 | − 1.49 | − 1.85* |
Age at diagnosis | 2.14* | −.58 | .48 | 1.05 | 1.83 | 1.98 | 2.55* |
Time elapsed between first concerns and diagnosis | −1.99* | .44 | −.56 | −.97 | − 1.67 | − 1.84* | −2.31* |
Number of professionals consulted | −.13* | .09 | −.01 | −.02 | −.04 | .00 | −.05 |
Receiving information on autism | .12 | .25* | .12 | .08 | .12 | .17* | .06 |
Receiving punctual services (mostly private) | .00 | .07 | −.13 | −.15* | −.02 | −.00 | .04 |
Family | |||||||
Household income | −.13 | −.36* | −.27* | −.10 | −.20* | −.29* | −.25* |
Number of siblings | .11 | .01 | .13 | .08 | .20* | .17* | .10 |
Sibling(s) also diagnosed | .11 | .02 | −.06 | .09 | −.08 | −.20* | −.10 |
Non-nuclear family | .13 | .00 | .17* | .01 | .15 | .07 | .15* |
Mothers’ education | .03 | .07 | .02 | −.06 | .09 | .11 | .05 |
Fathers’ education | .05 | .14 | .09 | .06 | −.02 | −.01 | .03 |
Mental health diagnosis in father | −.07 | .00 | −.00 | .12 | −.12 | .01 | −.02 |
Mental health diagnosis in mother | .15 | .04 | .31* | .10 | .18 | .09 | .13 |
Mothers’ immigrant status | −.10 | .02 | .11 | −.05 | −.03 | −.07 | .01 |
Fathers’ immigrant status | .12 | −.20* | −.04 | .15 | −.04 | .07 | −.10 |
Mothers’ unemployment | −.13 | −.01 | −.08 | .01 | −.09 | −.08 | −.09 |
Fathers’ unemployment | −.05 | −.22* | −.05 | .04 | .09 | .07 | −.01 |
Language spoken at home | |||||||
French (with or without other languages) | .20* | .16 | .06 | −.12 | −.05 | .02 | .28* |
English (with or without other languages, except French) | −.09 | .04 | .03 | .21 | −.06 | .04 | −.17 |
Other | −.11 | −.20 | −.09 | −.09 | .11 | −.06 | −.12 |
Child | |||||||
ABAS GAC score | .13 | .05 | −.07 | .07 | −.05 | .02 | .02 |
CBCL Total Problems score | .06 | .19* | −.08 | −.12 | .01 | −.00 | .04 |
Diagnosis | |||||||
ASD | −.13 | −.02 | .03 | .06 | .02 | −.15 | .05 |
GDD or ID | .19 | .09 | −.05 | −.40 | .20 | −.03 | .06 |
ASD and GDD or ID | −.06 | −.02 | .02 | .06 | −.28* | .07 | −.18 |
Other | −.01 | −.05 | −.00 | .27 | .06 | .10 | .07 |
Discussion
From parents’ first concerns to the diagnosis
Early symptoms and concerns
A complex, interdisciplinary process
Appraisal of the quality of the diagnostic trajectory
Equity and access disparities
Generalizability of findings
Contributions to knowledge
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This study is one of the first to use a systematic framework to provide both a factual description of the diagnostic evaluation pathway for neurodevelopmental disorders and an overview of the subjective appraisal of its quality by service users, based on five empirically validated dimensions.
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This study acknowledges the relevance of service users’ perceptions and experiences as in identifying areas for improvement, and relates these to previously documented (e.g., delays) and novel (e.g., dual diagnoses) systemic and family-related factors.
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It is suited to assess existing strengths and weaknesses of the diagnostic trajectory as implemented in different systems and contexts.
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The identification of accessibility as the primary challenge perceived by parents indicates the importance of streamlining screening and referral procedure as well as the need to support families as soon as concerns are raised.
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The provision of personalized guidance to families throughout the diagnostic trajectory may help to address concerns of equity, continuity, and flexibility.