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ORIGINAL ARTICLE
The transition from youth to adult mental
health services and the economic impact
on youth and their families
Healthcare Management Forum
1-6
ª 2017 The Canadian College of
Health Leaders. All rights reserved.
Reprints and permission:
sagepub.com/journalsPermissions.nav
DOI: 10.1177/0840470417709579
journals.sagepub.com/home/hmf
Neil G. Barr, BA, MSc1; Christopher J. Longo, BA, MSc, PhD2;
Mark G. Embrett, BSc, MAHSR, PhD3; Gillian M. Mulvale, BA, MA, PhD2;
Tram Nguyen, BSc, MSc, PhD4,5,6; and Glen E. Randall, BA, MA, MBA, PhD2
Abstract
The transition from Child and Adolescent Mental Health Services (CAMHS) to Adult Mental Health Services (AMHS) can be
challenging for youth, their families, and healthcare providers. The purpose of this study was to identify, summarize, and assess
evidence found in scholarly literature regarding the economic impact on youth and their families during the transition from
CAMHS to AMHS. Relevant studies were identified through a search of 7 electronic platforms. The search identified 829 articles;
5 of which met all inclusion criteria. Evidence from the included studies suggests that, when continuity of care is lacking, transitions
from CAMHS to AMHS have substantial impacts on the financial demands of youth and their families. These demands are due to
increases in the cost of care, loss of employment income and productivity, and changes in insurance coverage. However, there
remains limited information in this area, which highlights the need for further research.
Introduction
The transition from Child and Adolescent Mental Health
Services (CAMHS) to Adult Mental Health Services (AMHS)
can be challenging for youth, their families, and health providers. When youth transition from CAMHS to AMHS, continuity of care is often lacking.1,2 Consequently, various
programs and services have been developed and implemented
internationally to address this challenge. While some of these
initiatives are designed to improve healthcare transitions, others aim to deal with broader components of youth needs such as
housing, vocational support, education, and finances.3 However, literature reviews related to so effectiveness of these
programs and services have shown few, if any, well-designed
evaluations.4-6 Even less well described in the literature is the
financial impact on youth and their families during the transition from CAMHS to AMHS. Sources of financial impact may
include time off from work; increased expenses; and lack of, or
changes to, service coverage under public and private insurance plans.
The purpose of this study was to identify, summarize, and
assess evidence found in scholarly literature regarding the
economic impact on youth and their families during the transition from CAMHS to AMHS.
adolescence (eg, adolescent, pediatric/paediatric, teen), and
financial impact (eg, out-of-pocket costs, expenditures).
To be included in the study, articles needed to (1) be published in an English language peer-reviewed journal between
January 1996 and January 2016, (2) focus on children/adolescents with mental health disorders, and (3) discuss the financial
impact (defined above) of transitions to adult services on youth
and their families. Titles and abstracts of the articles identified
through the search were reviewed by 2 authors; 4 authors
independently reviewed the full-text of remaining articles to
determine if they met all inclusion criteria for the study. The
authors discussed any discrepancies until agreement was
reached. References of the included studies were reviewed to
identify additional studies.
Included studies were assessed for their methodological
quality using Kmet and colleagues’8 tool for evaluating primary research papers using qualitative and/or quantitative
methods. Scores can range from 0 to 1, with higher scores
indicating greater quality. Two authors independently assessed
1
2
3
4
Methods
5
The Preferred Reporting Items for Systematic Reviews and
Meta-Analyses7 was used as a guide for conducting this study
and reporting the results. Studies were identified through a
search of 7 electronic platforms: CINAHL, Embase, HealthSTAR, MEDLINE, ProQuest, PsycINFO, and Web of Science.
Keywords related to mental health (eg, mental disorder,
mental illness), transitions (eg, continuity of care, transition),
6
Faculty of Health Sciences, McMaster University, Hamilton, Ontario, Canada.
DeGroote School of Business, Health Policy and Management Area,
McMaster University, Hamilton, Ontario, Canada.
Precision for Medicine, Oakland, CA, USA.
School of Rehabilitation Science, McMaster University, Hamilton, Ontario,
Canada.
CanChild Centre for Childhood Disability Research, McMaster University,
Hamilton, Ontario, Canada.
School of Epidemiology, Public Health and Preventive Medicine, University of
Ottawa, Ottawa, Ontario, Canada.
Corresponding author:
Neil G. Barr, Faculty of Health Sciences, McMaster University, Hamilton,
Ontario, Canada.
E-mail: barrn@mcmaster.ca
2
each article; any discrepancies in scores were resolved through
discussion. The following data were extracted from the
included articles: authors/study, demographics, objectives and
study design, and major findings (see Table 1).
Results
The search identified 829 articles. After title and abstract
review (including the removal of duplicates), 57 articles
remained for full-text review. Four articles met all inclusion
criteria. One additional article was found after reviewing the
references of the 4 included studies (see Figure 1 for a flow
chart of the search results). All 5 articles used quantitative
methods (surveys and secondary analyses of administrative
databases). Four studies were conducted in the United States,9-12
and 1 study was conducted in the United Kingdom.13 Participants consisted of youth with intellectual disabilities or
challenging behaviour (including mental health difficulties);
youth and young adults with disabilities and those receiving
social assistance (including those with mental health issues or
disorders); and youth and adults with autism (some with
mental health conditions/psychiatric disorders). A brief
description of each article is presented in the paragraphs that
follow (see Table 1 for more information on each study,
including the quality scores).
Hemmeter et al.9—This United States–based study provided
information on characteristics of children and youth on Supplemental Security Income (SSI) and their transition to social
assistance as adults. Results of 97,106 child SSI recipients
showed that once individuals reach 19 years-of-age, SSI coverage, as a group, decreases after controlling for disease
severity and duration of illness. This effect is larger for those
with limited education and other social indicators. It was also
noted that those on SSI who use more health and community
services are more likely to remain on SSI as adults.
Callahan and Cooper10—This United States based study examined rates of insurance coverage for 5,170 young adults aged 16-25
years (by comparing those with disabilities and those without,
including those with mental health disorders). It was noted that
transition to adulthood was associated with an increase in the percentage of those who are uninsured. No sub-analysis of those with
mental health issues was undertaken, but it was stated that no significant differences between subgroups existed, with 48% of the
sample having learning or mental health disorders.
Cidav et al.11—This United States based study examined
differences across age categories for health service use and
expenditures for individuals with autism, with a high percentage
having mental health co-morbidities especially in the older age
categories. The data for 94,201 children and youth between
3 and 20 years-of-age indicated that the use of institution-based
care (eg, hospital, long-term care) increased with age, but
community-based services (eg, occupational therapy, speech
therapy, family therapy) declined. The authors also noted that
youth out-of-pocket costs were not included, suggesting private
versus public service use is not captured in this examination
of costs.
Healthcare Management Forum
Ganz12—This United States based study examined age-specific
and lifetime incremental societal costs of autism. The study indicated that lost productivity (of both individuals with autism and
their parents) and adult care are the largest components of costs.
These costs vary over time with a drop in healthcare usage during
transition to adulthood followed by a large spike in early adulthood,
mainly related to direct non-medical and indirect (lost productivity)
costs.
Barron et al.13—This United Kingdom based study examined the resource use/cost of care of youth in transition with
intellectual disability or challenging behaviour. This study of
27 youth participants aged 16-18 years indicated an average
weekly cost for all services of £2,543, with 66% of the cost
related to informal care, as many caregivers did not work or had
given up work as a result of their child’s illness (12 cases).
Discussion
This systematic review identified 5 studies that offer insight
related to the economic impact of transitioning from CAMHS
to AMHS on youth and their families including, but not limited
to, informal support by unpaid caregivers, increases in the cost
of care, loss of employment income and productivity, and
changes in insurance coverage. Overall, evidence from the
included studies suggests that transitions from CAMHS to
AMHS have a substantial impact on the financial demands of
youth and their families. In the sections that follow, we discuss
our findings and some of the broader implications.
Insurance coverage and SSI
Lost employment income and the increased cost of care—
related to lack of either public or private insurance coverage—
are considerable sources of financial impact. This finding is
consistent with transition age patients with other health conditions and diseases.14-16 As youth transition into adulthood,
they are more likely to be uninsured.10 This comes at a time
when many services are at their most expensive (eg, long-term
care, outpatient care, psychotropic medications),11 perhaps due
to condition severity increasing with age.17 Complicating
matters is the finding that youth with mental health disorders
are less likely to be employed than youth without such disorders and, as a result, are less likely to have employmentbased health insurance, which may limit their ability to
receive some adult services.10 In addition, youth with mental
disorders are less likely to receive SSI as they become adults,9
presenting further challenges. On the other hand, these circumstances appear to occur at a time when there may be an
“ageing-out” process, whereby the likelihood of using many
services declines.11
Multimorbidity
Many of the individuals with mental health disorders in the
included studies had other chronic conditions, such as intellectual and developmental disabilities. Given this multimorbidity, it is difficult to distinguish between the financial
Barr, Longo, Embrett, Mulvale, Nguyen and Randall
3
Table 1. Article summaries
Authors/study Demographics
Objectives and study design
Major findings
Hospital-based, community-based, and
informal/family care were prevalent.
Average total weekly cost for all services
was £2,543; 66% of which was related to
informal care and 22% for education.
Twelve individuals had given up work to
provide care. Twenty-two carers had
additional caring roles.
More complex cases were not
associated with higher cost care (with
the exception of the level of intellectual
disability).
Young adults with disabilities were
To compare the continuity of insurance
United States.
Callahan and
Youth (n ¼ 5,170) aged 16-25 yrs. coverage for young adults with and without significantly less likely to have private
Cooper
health insurance coverage but
disabilities over 36 mo.
with disabilities including mental
(2007)
significantly more likely to have public
Secondary analysis using data from the
Quality score: disorders.
health insurance coverage (compared to
2001 Survey of Income Program and
0.84
those without disabilities) at the start of
Participation.
the study.
At the beginning of the study, 22% of the
young adults with disabilities were
uninsured. Over the 36-mo. study period,
56% of the young adults with disability
reported gaps in insurance coverage
(average of 15 mo. uninsured).
The proportion of youth who were
uninsured did not significantly differ by
disability status.
Significant differences in coverage were
based on age:
Aged 16-18 yrs.: 5% uninsured at the start
of study; 46% reporting a gap in coverage
over 36 mo.
Aged 19-25 yrs.: 30% uninsured at the start
of study; *60% reporting a gap in coverage
over 36 mo.
To examine differences by age in service Ageing was significantly related to higher
United States.
Cidav et al.
Youth (n ¼ 94,201) aged 3-20 yrs. use and expenditures (for 1 yr. in a national use/costs for institution-based care (eg,
(2013)
long-term care, respite services).
public health insurance system).
Quality score: with autism (some with mental
Ageing was also significantly related to
Secondary analysis using data from the
health conditions/psychiatric
0.76
2005 Medicaid Analytic Extract data files. lower use/costs for community-based
diagnosis).
services (eg, occupational/physical therapy,
speech therapy, family therapy).
There may be an “ageing-out” process for
aged 17-20 yrs. whereby the likelihood of
using many services (and thus
expenditures) declines.
Ganz (2007)
For each person, the lifetime
To describe the age-specific and lifetime
United States.
Quality score: Youth and adults with autism (some incremental societal costs of autism.
incremental societal cost of autism is
0.73
Literature review and data analysis from $3.2 million.
with mental health conditions).
MEPS and NHIS between 1997 and 2000. Lost productivity (of both individuals
with autism and their parents) and adult
care are the largest components of
costs.
Costs over the lifespan vary by age and
cost category (eg, drugs, behaviour
therapy, home improvements, special
education).
Barron et al.
(2013)
Quality score:
0.78
United Kingdom (London).
Youth (n ¼ 27) aged 16-18 yrs. with
intellectual disabilities or challenging
behaviour (including mental health
difficulties).
To examine socio-demographic and clinical
characteristics, service use, and associated
costs.
A survey “tool kit” measured mental
status, challenging behaviour, service use,
and informal support by unpaid carers in
the previous 6 mo.
(continued)
4
Healthcare Management Forum
Table 1. (continued)
Authors/study Demographics
Hemmeter
et al. (2009)
Quality score:
0.93
United States.
Youth and young adults (n ¼ 97,106)
receiving social assistance (including
those with mental health issues).
Objectives and study design
Major findings
To examine the differences in youth and
adult SSI participation as a function of
impairment status.
Analysis of linked 2001-2002 NSCF survey
and SSA administrative data.
Youth with behavioural and mental
disorders (other than mental retardation)
are far less likely to receive SSI at age
19 yrs.
Non-health factors—particularly
education, employment, and social
indicators—influence the likelihood that a
child SSI recipient receives adult SSI after
the age of 18 yrs.
Abbreviations: MEPS, Medical Expenditure Panel Survey; mo, months; NHIS, National Health Interview Survey; NSCF, National Survey of SSI Children and
Families; SSA, Social Security Administration; SSI, Supplementary Security Income.
Search results
(n = 829)
Excluded on title & abstract
review
(n = 743)
Duplicates excluded
(n = 29)
Full-text review
(n = 57)
Studies excluded
(n = 53)
Additions from included
studies references
(n = 1)
Included studies
(n = 5)
all quantitative
Figure 1. Flow chart of the search results.
impact of mental healthcare services and other healthcare
services. In this regard, the costs and financial burden reported
in these studies are likely overestimated compared to those
examining mental health conditions in isolation. However, the
often complex presentation of mental health conditions with
other chronic conditions suggests that these costs may be a
reasonably accurate estimate of those faced by youth and their
families. In addition, most of the studies identified relied on
database reviews that did not capture the financial impacts on
family members, which may lead to an underestimation of the
overall financial burden.
payer systems, such as Canada and the United Kingdom,
where publicly funded hospital and physician services are
available, psychological services and prescription medications
are often not covered through government health insurance
plans.18 There may also be significant wait times for CAMHS
in such systems.19 Moreover, even within a single healthcare
system, the extent to which there is more or less continuity of
care provided during program-specific transitions can be
expected to have a substantial influence on the financial burden
associated with a transition. This suggests that future research
should take into consideration elements of specific programs
that have a bearing on continuity of care.
Varying healthcare programs and systems
Four of the 5 included studies were United States based where,
on average, a higher proportion of the health costs are borne by
patients and their families directly as compared to those in
single-payer healthcare systems. However, even in single-
Implications for health leaders
From an administrative standpoint, ensuring that mechanisms
exist to enhance continuity of care is paramount. As discussed,
when youth and their families are not adequately supported
Barr, Longo, Embrett, Mulvale, Nguyen and Randall
(ie, there is a disruption in care), financial burden is likely to
increase. Furthermore, such disruptions can lead to greater use
of services, such as visits to emergency departments, which
increases overall health system costs.20 A prominent challenge
in developing reform efforts, as this study has revealed, is the
lack of information on the total financial burden and how many
youth forego services due to cost. This suggests the need for
management to create strategies geared toward improving data
collection at the micro, meso, and macro levels. In the absence
of such information, attempts to enhance continuity of care are
likely to be unsuccessful. In this vein, better communication
(data sharing) and coordination across organizations, fostered
by opportunities for joint planning,20 should be a key component of any strategy.
Limitations
Although this review used a systematic approach following
established guidelines and a comprehensive approach was
taken (ie, numerous databases were used and studies were not
excluded based on their design), some limitations warrant
mention. Firstly, the surveys used in the included studies were
self-report, which suggests a potential for recall bias. Secondly,
given that the included studies were cross-sectional, the conclusions drawn regarding increases or decreases in expenditures associated with ageing may be confounded by cohort
effects. Thirdly, most of the studies consisted of conducting
secondary analyses on information gathered from databases.
As a result, there may be unmeasured (or uncontrolled) variables that may have an impact on the magnitude of financial
burden, such as the severity of illness. In this regard, it seems
more appropriate to treat the findings from these studies as
“hypothesis generating” rather than evidence of an effect.
Fourthly, there were no explicit data on youth/family out-ofpocket costs. Are out-of-pocket costs uncommon or are youth/
families choosing to forego services due to these costs? Abilityto-pay and income support are likely to influence mental health
service use that is not publicly funded, but in our review, such
data are lacking. Finally, the focus of this systematic review
was on academic, peer-reviewed literature. Other sources of
information, such as grey literature, may have revealed additional insights.
Conclusion
There is a paucity of academic literature examining the
financial impact of transitions from CAMHS to AMHS on
youth and their families. Although the data are sparse, this
review suggests that the transition process can result in added
financial pressures due to the need for more expensive services
at this time, a decreased probability of private health insurance
coverage or supplemental income, and time off from work.
However, the magnitude of these pressures is not known. In the
broader transitions literature (ie, not exclusive to mental
health), programs have been inconsistently evaluated in terms
of cost.21 Although many healthcare provider organizations
have been working toward minimizing the negative impacts of
5
transitioning from CAMHS to AMHS, the focus of many of
these efforts has been on minimizing emotional and clinical
impacts rather than financial burden. However, as organizations enhance continuity of care, there will also be associated
reductions in financial burdens to youth and their families. For
organizations where continuity of care remains a challenge,
policies that offer some form of support to youth and their
families to help alleviate the associated financial burdens
during this time may be warranted.
Authors’ note
All authors were involved in (1) the conception and design of the
study, acquisition of data, and analysis/interpretation of data, (2) drafting the article or revising it critically for important intellectual content,
and (3) final approval of the version to be submitted. The views
expressed in this article are the views of the authors and should not
be taken to represent the views of the Government of Ontario.
Funding
This study was funded by the Government of Ontario through a Ministry of Health and Long-Term Care Health System Research Fund
grant entitled “Harnessing Evidence and Values for Health System
Excellence.”
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Healthcare Management Forum
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