Hospital-based Comprehensive Care Programs for Children with Special Health Care Needs (CSHCN): A Systematic Review

Keeping Current. © E. Cohen, V. Jovcevska, D.Z. Kuo, & S. Mahant, 2011

Who are Children with Special Health Care Needs?


of all children are recognized as Children with Special Health Care Needs (CSHCN)

Children with Special Health Care Needs (CSHCN) are those children "who have or are at increased risk for a chronic physical, developmental, behavioural, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally." This is the most common way of talking about childhood chronic conditions.1 CSHCN represent approximately 13-19% of all children, apart from the 'at risk' group2 who are known to be at increased risk of hospitalization, admission to intensive care, school absences, frequent medical errors,3 poor care coordination, and overwhelming challenges for their families.

What is meant by 'hospital-based comprehensive care models' ?

Programmatic models for CSHCN can be divided into:

  1. those with a primary focus on care coordination in the community, and
  2. those with a primary focus of care coordination in a specialized institution, usually a hospital.

A number of community-based models have been described, including the Medical Home, 4, 5, 6 hospital-to-medical home transitions, 7 and home care. 8-10 However, because of the frequent contact of CSHCN with hospitals, 11 several hospital-based comprehensive care programs have been created. These have the potential benefits of having expert providers, one-stop shopping, and more efficient services. This way of providing services has become increasingly popular, particularly for CSHCN who frequently use hospital clinic and inpatient services for much of their health care delivery.12, 13

Why did we do this study?

Comprehensive hospital-based programs for CSHCN aim to:

  • streamline care,
  • improve health outcomes, and
  • support families and primary care providers.

However, we still know very little about the impact of hospital-based programs that are meant to provide comprehensive care for CSHCN.

What was done?

We conducted a systematic review of the published literature. A systematic review involves finding and reviewing all the articles in which people report what they have been studying in order to look for patterns. The literature search yielded 2621 potential titles and abstracts. Of these 35 articles reporting on 33 unique programs were included in the detailed review. References from these articles were also reviewed and experts were consulted for additional studies.

For the purpose of this study, we included reports of models of services that specifically focus on care coordination for a broad set of health needs. We were also interested in programs where care was delivered by a single clinician or team who actively offered multiple care services over time, and in appropriate settings (including hospital and home).

The outcomes found in the articles were categorized according to specific quality of care aims as described by the Institute of Medicine. 

In this approach high quality care is defined as that which is:

  1. efficient (in how it utilizes resources);
  2. effective (in improving health or functioning of patients, including reducing the need for contact with the health care system);
  3. safe (reducing medical mistakes and deaths);
  4. patient-centred (focusing on the patient's experience of illness and health care and on the systems that work or fail to work to meet individual patients' needs) or family-centred (considering the needs of the whole family);
  5. timely (minimizing wait times and other delays); and
  6. equitable (fairly distributing health care resources).14

What did we find?

The evidence showing that comprehensive hospital-based programs improve the quality of care for CSHCN is generally positive; however, it is limited primarily to studies of children with specific conditions (e.g. single disease) rather than to groups of children who have many different and complex health problems. Also, most of the studies did not measure child outcomes well enough in terms of health care quality, and most had relatively weak study methods. Therefore there is only limited evidence to support the value of hospital-based comprehensive care programs for CSHCN, particularly for children who have a complexity of needs rather than a single condition such as sickle cell or diabetes.

What's next?

In recent years, there have been important developments in clinical care for CSHCN including:

  1. The emergence of hospital-based programs for special populations of CSHCN;
  2. Controversy about whether community-based or hospital-based providers are better at leading the care of a variety of chronic conditions of childhood;
  3. Challenges about how to best promote co-management and collaborative care that involves coordination between community and specialist providers, and
  4. Questions as to how to pay for care co-ordination activities.

We believe that despite a lot of writing about the topic, we still know too little about the best models of care for CSHCN. This will be particularly important as more comprehensive programs of care for CSHCN are created through new resources (e.g. Ministries of Health, insurance companies, etc.) However, additional high quality evidence, based on studies with appropriate comparative groups and using the 'right' outcomes, is still needed if we are to determine the impact of hospital-based comprehensive care programs.

For more information about this study:

Cohen, E., Jovcevska, V., Kuo, D.Z., & Mahant, S. (2011). Hospital-based comprehensive care programs for Children with Special Health Care Needs: A systematic review. Archives of Pediatrics & Adolescent Medicine, 165(6), 554-561.

Contact: Eyal Cohen MD, MSc, FRCP(C)


We are grateful to the Pediatric Consultants Partnership Creative Professional Activities Grant and the Norman Saunders Complex Care Initiative at the Hospital for Sick Children for funding this study.

  • Click here for list of references

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    2. Bethell CD, Read D, Blumberg SJ, Newacheck PW. (2008). What is the prevalence of children with special health care needs? Toward an understanding of variations in findings and methods across three national surveys. Maternal and Child Health Journal, 12(1), 1-14.

    3. Sacchetti A, Sacchetti C, Carraccio C, Gerardi M. (2000). The potential for errors in children with special health care needs. Academic Emergency Medicine, 7(11), 1330-1333.

    4. Cooley WC, McAllister JW. (2004). Building medical homes: improvement strategies in primary care for children with special health care needs. Pediatrics, 113(5 Suppl), 1499-1506.

    5. Cooley WC. (2004). Providing a primary care medical home for children and youth with cerebral palsy. Pediatrics, 114(4), 1106-1113.

    6. Cooley WC. (2004). Redefining primary pediatric care for children with special health care needs: the primary care medical home. Current Opinions in Pediatrics, 16(6), 689-692.

    7. Kelly A, Golnik A, Cady R. (2008). A medical home center: specializing in the care of children with special health care needs of high intensity. Maternal and Child Health Journal, 12(5), 633-640.

    8. Stein RE, Jessop DJ. (1984). Does pediatric home care make a difference for children with chronic illness? Findings from the Pediatric Ambulatory Care Treatment Study. Pediatrics, 73(6), 845-853.

    9. Jessop DJ, Stein RE. (1991). Who benefits from a pediatric home care program? Pediatrics, 88(3), 497-505.

    10. Jessop DJ, Stein RE. (1994). Providing comprehensive health care to children with chronic illness. Pediatrics, 93(4), 602-607.

    11. Newacheck PW, Halfon N. (1998). Prevalence and impact of disabling chronic conditions in childhood. American Journal of Public Health, 88(4), 610-617.

    12. Simon TD, Berry J, Feudtner C, et al. (2010). Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics, 126(4), 647-655.

    13. Burns KH, Casey PH, Lyle RE, Bird TM, Fussell JJ, Robbins JM. (2010). Increasing Prevalence of Medically Complex Children in US Hospitals. Pediatrics, 126(4), 638-646.

    14. Institute of Medicine (2001). Envisioning the National Health Care Quality Report. Washington, D.C.: National Academy Press.