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The prevalence of mental illness among
young people living with chronic illness:
A systematic review
Ann Marie Brady
(CLAHRC North Thames Doctoral Candidate)
NIHR CLAHRC North Thames
Chronic Illness
“…a condition that cannot, at
present, be cured but is controlled
by medication and/or other
treatment/therapies.”
Department of Health (May, 2012)
NIHR CLAHRC North Thames
Chronic Illness
“The incidence and prevalence of
chronic conditions is rising in most
developed and developing countries
and will constitute the main cause of
death by 2020.”
World Health Organisation (2007)
NIHR CLAHRC North Thames
Chronic Illness
“Around 70% of the total annual
health care spend in England could be
attributed to people living with long-
term conditions, a proportion
representing 30% of the total
population.”
Department of Health (2012)
NIHR CLAHRC North Thames
Chronic Illness
“The increasing prevalence of long
term conditions is the biggest
challenge facing the NHS now and
for the future.”
Miles Ayling, Director of Innovation and
Service Improvement, Department of
Health
NIHR CLAHRC North Thames
High Rates of Co-Morbidity
“Research evidence consistently
demonstrates that people with long-
term conditions are two to three times
more likely to experience mental
health problems than the general
population….”
Naylor, Parsonage, McDaid, Knapp, Fossey, & Galea,
(2012). Long-Term Conditions and Mental Health: The
Cost of Co-Morbidities
NIHR CLAHRC North Thames
When Mental Illness Occurs in
the Context of Chronic Illness…
Recovery from the physical condition is
impeded.
Pain can become more difficult to
control.
Increase in psychosomatic symptoms.
Confidence to participate in
rehabilitation programmes is reduced.
Source: Academy of Medical Royal Colleges (July 2009)
NIHR CLAHRC North Thames
Increased Focus on Mental
Healthcare…
NIHR CLAHRC North Thames
Young People Poorly Understood…
“… we have remarkably little
understanding of how the functional needs
of the young change across childhood,
through adolescence, let alone how young
people respond to such changes or how
they can best be supported.”
Sawyer, Drew, Yeo, & Britto (2007). Adolescents with a
chronic condition: challenges living, challenges
treating. The Lancet
NIHR CLAHRC North Thames
Existing Evidence…
2007 United Kingdom National Survey of
Children’s Mental Health and Wellbeing
(e.g. Perry-Langdon, 2008)
Physical illness one of the major predictors
of mental health outcomes
However, no information gathered on onset,
severity or chronicity
NIHR CLAHRC North Thames
Existing Evidence …
Lavigne and Faier-Routman (1992)
“The major contribution of understanding of the
adjustment of children with chronic disorder…”
(Wallander, 1998)
Increase in:
Emotional Symptomatology
Behavioural symptomatology
Overall Adjustment Problems
NIHR CLAHRC North Thames
Existing Evidence…
Series of meta-analyses by Pinquart & Shen
(2011)
Young People with chronic illness rated as having
relatively higher levels of:
Anxiety (Pinquart & Shen, 2011a)
Depression (Pinquart & Shen, 2011b)
Conduct-related Issues (Pinquart & Shen, 2011c)
NIHR CLAHRC North Thames
However, there were limitations…
Assumption of Common Outcomes of
Chronic Illness
Focus on Relative Levels of Mental
Illness Symptoms
NIHR CLAHRC North Thames
This Systematic Review…
Specific Focus on:
• Prevalence of Mental Health
Disorders
• Inter-Condition Variations
NIHR CLAHRC North Thames
Eligibility Criteria…
I. Original Study measuring any mental health
outcome in a sample aged between birth and
19 years living with any condition that could be
defined as chronic under Department of Health
guidelines
II. Studies must have had a comparative group
III. Examinations must have been conducted in
the year 2000 or later
NIHR CLAHRC North Thames
Search
Search Terms:
“chronic illness” OR “chronic disease” OR “long term physical” OR
asthma OR diabetes OR “musculoskeletal disorder” OR epilepsy OR
anaemia OR anemia
AND
“conduct disorder” OR “conduct problem” OR emotional and behav*
difficulties OR emotional and behav* problems OR “mental health” OR
depress* OR anxiety OR internali* AND externali*
Age Group: 0-19 Years/Child and Adolescent
Timespan: Year 2000 Onwards
Language: English
Document Type: Journal Article
NIHR CLAHRC North Thames
Search Process
NIHR CLAHRC North Thames
Breakdown of Eligible Studies
0 20 40 60 80 100 120 140
Single Studies
Non-Alcoholic Fatty Liver Disease
Haemophilia
Chronic Kidney Disease
Inflammatory Bowel Disease
Juvenile Arthritis
Thalassemia
Sickle Cell Disease
Comparative Studies
Non-Categorical Study of Chronic Illness
Diabetes
Asthma
Epilepsy and other Neurological Conditions
No. of Studies
NIHR CLAHRC North Thames
Quality Ranking
Newcastle-Ottawa Quality Assessment Scale
for Cohort Studies
Preference Given To:
• Longitudinal Studies, with appropriate
adjustments for confounding factors
• Representative exposed samples and
comparative controls
• Measures with Minimal Subjectivity
NIHR CLAHRC North Thames
Results Broken into Three Sections
1. Studies of Individual Diagnostic
Categories (n=220)
2. Studies that Studied Chronic Illness Non-
Categorically (n=26)
3. Comparative Studies (n=9)
NIHR CLAHRC North Thames
Studies of Individual Diagnostic
Categories
Epilepsy and other Neurological
Disorders
- Clear increase in Prevalence of Mental
Health Disorders
- Mainly a Function of Neurobiological
Functioning
NIHR CLAHRC North Thames
Studies of Individual Diagnostic
Categories
Condition
Increased
Prevalence of
Emotional
Disorders
Increased
Prevalence of
Behavioural
Disorders
Key Moderating
Factors
Asthma Unexamined • Gender
• Socio-Economic
Status
• Severe, On-going
Symptoms
• Comorbid Conduct
Disorder
Diabetes ?
(Trends,
Prevalence not
examined)
• Glycaemic Control
• Functional
Impairment
• Family Climate
• Age
NIHR CLAHRC North Thames
Studies of Individual Diagnostic
Categories
Condition
Increased
Prevalence of
Emotional
Disorders
Increased
Prevalence of
Behavioural
Disorders
Key Moderating
Factors
Sickle Cell
Disease
X X • Gender
• Low Family Income
• Frequent Painful
Crisis
Thalassemia Severe Symptoms
Juvenile Arthritis X X Active Symptoms
Inflammatory
Bowel Disease
?
(Clinical
Significance not
examined)
X Adolescent Onset
Haemophilia X
(Trend)
X Severe Symptoms
NIHR CLAHRC North Thames
Studies of Individual Diagnostic
Categories
Condition
Increased
Prevalence of
Emotional
Disorders
Increased
Prevalence of
Behavioural
Disorders
Key Moderating
Factors
Chronic Kidney
Disease
X X Dialysis
(Emotional
Symptoms Only)
Non-Alcoholic
Fatty Liver
Disease
?
(Clinical
Significance not
Examined)
X BMI (Conflicting
Evidence)
NIHR CLAHRC North Thames
Condition
Increased
Prevalence of
Emotional
Disorders
Increased
Prevalence of
Behavioural
Disorders
Key Moderating
Factors
Cystic Fibrosis X X Socio-Economic Status
Epidermolysis Bullosa X X -
Oesophageal Atresia X X -
Familial Mediterranean
Fever
(Depression Only)
Unknown -
Juvenile Fibromyalgia
Syndrome
X
(Trend)
X -
Lupus X X -
Primary Ciliary
Dyskinesia
X X -
Eosinophil-Associated
Gastrointestinal Disorders?
(Mother’s Ratings Only)
X -
Studies of Individual Diagnostic
Categories
NIHR CLAHRC North Thames
Studies of Individual Diagnostic
Categories
Conclusions:
• Mental Health Outcomes are Diverse
• Severity within Conditions may be
Important Moderating Factor
Needed: - Longitudinal Data
- Representative Samples
- Adjustment for Confounding Factors
NIHR CLAHRC North Thames
Non-Categorical Examinations of
Chronic Illness
Note: Significant Variations in Definitions of
Chronic Illness
Conclusions:
I. Increased Prevalence of Emotional and
Behavioural Disorders – HOWEVER, Inter-
Disease Variation
II. Functional Impairments, rather than
severity, key moderating factor
III. Role of Socio-Economic Variables
NIHR CLAHRC North Thames
Non-Categorical Examinations of
Chronic Illness
Limitations:
- Cross-Sectional Data
- Lack of Objective Physical Health
Indicators
- Issues Regarding Measures of Mental
Health
NIHR CLAHRC North Thames
Comparative Studies
Severe Quality Issues
- Explanatory Value of at least 5/9 studies could be
viewed as extremely compromised
Supported Link with Psychological
Adjustment
Supported Inter-Disease Variations
Suggested Role of BMI
NIHR CLAHRC North Thames
Overall Conclusions
• Consistent Evidence of Variations in
Mental Health Outcomes
• Severity within Conditions could be
Important Moderating Factor
• Suggested Role of Socio-Economic
Factors and Obesity
NIHR CLAHRC North Thames
Significant Limitations
• Small Quantity of Studies
• Lack of Longitudinal Measurement
• Bias Within Mental Health Measures
• Lack of Representative Samples
Thank You
Acknowledgements:
Professor Stephen Stansfeld (Wolfson
Institute of Preventive Medicine)
Dr. Jessica Deighton (Anna Freud Centre)
Further Information: [email protected]