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: firstname.lastname@example.org 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.” References 1. McGorry PD, Purcell R, Hickie IB, Jorm AF. Investing in youth mental health is a best buy. Med J Aust. 2007;187(7):S5-S7. 2. Paul M, Ford T, Kramer T, Islam Z, Harley K, Singh SP. Transfers and transitions between child and adult mental health services. Br J Psychiatry. 2013;54:s36-s40. 3. McGorry P, Bates T, Birchwood M. Designing youth mental health services for the 21st century: examples from Australia, Ireland and the UK. Br J Psychiatry. 2013;54:s30-s35. 4. Paul M, Street C, Wheeler N, Singh SP. Transition to adult services for young people with mental health needs: a systematic review. Clin Child Psychol Psychiatry. 2015;20(3):436-457. 5. Embrett MG, Randall GE, Longo CJ, Nguyen T, Mulvale G. Effectiveness of health system services and programs for youth to adult transitions in mental healthcare: a systematic review of academic literature. Adm Policy Ment Health. 2016;43(2):259-269. 6. Di Rezze B, Nguyen T, Mulvale G, Barr NG, Longo CJ, Randall GE. A scoping review of evaluated interventions addressing developmental transitions for youth with mental health disorders. Child Care Health Dev. 2016;42(2):176-187. 7. Moher D, Liberati A, Tetzlaff J, Altman DG; PRISMA Group. Preferred reporting items for systematic reviews and metaanalyses: the PRISMA statement. Ann Intern Med. 2009;151(4): 264-269. 8. Kmet LM, Lee RC, Cook LS. Standard Quality Assessment Criteria for Evaluating Primary Research Papers From a Variety of Fields. Edmonton, Canada: Alberta Heritage Foundation for Medical Research; 2004. HTA Initiative #13. 9. Hemmeter J, Kauff J, Wittenburg D. Changing circumstances: experiences of child SSI recipients before and after their age-18 redetermination of adult benefits. J Vocat Rehab. 2009;30(3): 201-221. 6 10. Callahan ST, Cooper WO. Continuity of health insurance coverage among young adults with disabilities. Pediatrics. 2007; 119(6):1175-1180. 11. Cidav Z, Lawer L, Marcus SC, Mandell DS. Age-related variation in health service use and associated expenditures among children with autism. J Autism Dev Disord. 2013;43(4):924-993. 12. Ganz ML. The lifetime distribution of the incremental societal costs of autism. Arch Pediatr Adolesc Med. 2007;161(4):343-349. 13. Barron DA, Molosankwe I, Romeo R, Hassiotis A. Urban adolescents with intellectual disability and challenging behavior: costs and characteristics during transition to adult services. Health Soc Care Community. 2013;21(3):283-292. 14. Reiss JG, Gibson RW, Walker LR. Healthcare transition: youth, family, and provider perspectives. Pediatrics. 2005;115(1):112-120. 15. Longo CJ, Deber R, Fitch M, Williams AP, D’Souza D. An examination of cancer patients’ monthly “out-of-pocket” costs in Ontario. Eur J Cancer Care. 2007;16(6):500-507. 16. Longo CJ, Fitch M, Deber RB, Williams AP. Financial and family burden associated with cancer treatment in Ontario. Support Care Cancer. 2006;14(11):1077-1085. Healthcare Management Forum 17. Seltzer MM, Shattuck P, Abbeduto L, Greenberg JS. Trajectory of development in adolescents and adults with autism. Ment Retard Dev Disabil Res Rev. 2004;10(4):234-247. 18. Mulvale G, Hurley J. Insurance coverage and the treatment of mental illness effect on medication and provider use. J Mental Health Policy Econ. 2008;11(4):177-199. 19. Kowalewski K, McLennan JD, McGrath PJ. A preliminary investigation of wait times for child and adolescent mental health services in Canada. J Can Acad Child Adolesc Psychiatry. 2011; 20(2):112-119. 20. Randall GE, Mulvale GM, Wakefield PA, et al. Mapping the Policy to Practice Landscape for Youth Mental Health in Ontario: A Report from the “Youth to Adult Transitions in Health Care— the Case of Mental Health Services in Ontario” Research Team. Hamilton, Ontario, Canada: McMaster University; 2016. Available at: http://youthtransitions.degroote.mcmaster.ca. Accessed March 31, 2017. 21. Prior M, McManus M, White P, Davidson L. Measuring the “triple aim” in transition care: a systematic review. Pediatrics. 2013;134(6):e1648-e1661.