Providing Care for Medically Complex Children with Special Healthcare Needs

January 2015, Vol 3, No 1 - Inside Pediatric Health
Stacie Lampkin, PharmD, BCACP, AE-C

Medically complex children with special healthcare needs (CSHCN) are often described as having at least 1 chronic condition resulting in high family-identified service needs, functional limitations, which usually require medical equipment, functional disabilities, the involvement of multiple subspecialists, and increased use of healthcare services.1,2

This subgroup consists of patients with multiple diagnoses such as neuromuscular disorders, cardiac conditions, congenital or genetic defects, mental retardation, emotional problems, seizure disorders, autism, and cerebral palsy.1,3 Approximately 69% of these patients require technology assistance, such as a gastrostomy tube, cerebrospinal fluid shunt, and tracheostomy tube, that could impact medication delivery.3

In addition, CSHCN are frequently taking 8 to 10 prescription medications, and this number increases to approximately 20 as medical complexity increases.4-6 These children require high levels of specialized care and substantially influence healthcare expenditures, even though they only make up 0.4% of all children in the United States.1,4

Currently, there are no studies assessing the impact of community pharmacists on medically complex CSHCN, but because of their numerous medications and complexity of care, it is logical that pharmacists can substantially impact these children and their families. Community pharmacists and retail clinicians can play an essential role in centralizing care and should strive to provide all medications for CSHCN, as these patients often have multiple providers prescribing medications. However, when encountering medically complex CSHCN, pharmacists and retail clinicians must be aware and willing to take on the challenges of assessing, dispensing, and counseling on uncommon medication regimens for less common disease states.

Unfortunately, a survey of pharmacists found that the less common a condition, the more likely pharmacists were to respond that they did not believe they had the knowledge and expertise to make recommendations for that condition.7

Assessing Medication Regimens
Assessing medications—prescrip­tion, herbal, or over-the-counter (OTC)—for medically complex CSHCN is similar to assessing those of the general pediatric population, but requires additional attention and considerations.8,9 This subgroup of the population is at increased risk for adverse drug events and medication errors because of the unique medication regimens used to treat multiple comorbid conditions, differences in pharmacokinetics, weight or body surface area impacting patient-specific dosing calculations, variations in delivery methods, and off-label medication use.8-11 The goal of assessment should be to determine the appropriate medication use with maximal benefits and decreased side effects.

It is necessary to understand how the child’s disease states and medical equipment can impact medication pharmacokinetics and dosing. For example, if a patient has medication administered via the jejunal part of a gastrojejunostomy tube in the small intestine, medications that are absorbed in the stomach will have minimal to no effect.12 With regard to dosing considerations, obtaining an accurate weight and calculating weight-based dosing is of the utmost importance.8-11 A recent survey of community pharmacists found that it was uncommon for weight-based doses to be checked for appropriateness, and even more uncommon for a patient’s weight to be obtained if it is not provided.10 This result is alarming: if a weight is not provided, a standard weight for that age and gender should never be assumed.

A portion of medically complex CSHCN—such as premature infants or children who do not thrive—may fall outside the average weight range for their age or gender. Furthermore, older teenagers with various syndromes or genetic anomalies may still use pediatric weight-based dosing, even though most older teenagers typically reach adult dosing. Another important consideration is checking for drug interactions, therapeutic duplications, and omissions. Above and beyond their primary care providers, these children see numerous specialists and transition through various healthcare settings, such as during emergency department visits or inpatient hospitalizations, which may alter medication regimens.13

Challenges for Dispensing Medications
Pediatric patients often require medications that must be extemporaneously compounded by a pharmacist if a suitable formulation is not available.8,9 This is especially true for medically complex CSHCN, because they often have additional factors impacting medication administration such as gastrostomy tubes, or disorders that make medication administration difficult.

Unfortunately, several medication dosage forms are not readily compounded by community pharmacies, despite the fact that these recipes have stability data that can be found in references such as the Pediatric & Neonatal Dosage Handbook14 or Pediatric Drug Formulations.15 Pharmacies that do provide a specific medication may require caregivers to obtain them at multiple locations. This, combined with the involvement of multiple prescribers, would make it difficult to assess medication regimens as described above. Therefore, it would be in the best interest of the child for the pharmacist to find innovative ways to aid caregivers in obtaining needed medications at 1 location. An added benefit is that “parents who need such specialized services will drive long distances to patronize the pharmacy, creating a loyal base of customers who tend to use the pharmacy repeatedly for many years,” according to researchers.9

Two other dispensing-related considerations are ensuring that medications are labeled for use in school, and helping families obtain OTC products. Frequently, medically complex CSHCN require supplements or OTC products. Prescribers may be unaware whether a medication is covered by insurance or if there is a high cost associated with a specific product. Families of patients in this subgroup already have high financial burdens, so it would be beneficial to help find and recommend the cheapest alternatives.1

Counseling Considerations
Counseling and education should be directed toward both the child and their caregiver. Generally, it is recommended to tailor information to the developmental stage of the child.8,9 Although this holds true for medically complex CSHCN, most of these children have developmental delays. Therefore, know­ing the child’s cognitive function and establishing rapport with the family will help determine how to provide education and counseling to meet the family’s needs.

All counseling sessions should first assess the family’s understanding of the purpose of the medication.16 Medications are commonly prescribed off-label or for less common uses. It would be disconcerting to counsel a family about a medication for an indication that the child does not exhibit. For instance, clonidine, which is typically a blood pressure medication, may be used to treat sleep or behavioral disturbances such as aggression. When discussing side effects, be aware that medically complex CSHCN will likely be unable to communicate signs and symptoms associated with an adverse effect. Thus, education should include methods to monitor side effects in an effort to prevent concerned caregivers from avoiding a needed medication.

Lastly, medication administration errors by caregivers are common.11 For that reason, it is important to provide proper education on administration techniques and appropriate measuring devices to caregivers and children.8,9 Administration techniques may vary depending on the location of administration and dosage form. If a child is to receive a capsule through a gastrostomy tube, it would be essential to ensure a caregiver is comfortable opening up the capsule, mixing it in with the recommended amount of water, and drawing the mixture up into a syringe for proper administration.

Closing Remarks
Based on experience working with this population, participating in the care of medically complex CSHCN is not easy. In addition to the factors discussed, it may be difficult to find required and comprehensive information in standard pharmacy references and medication databases. As medication experts, it is recommended to consider and become well informed about alternative uses for medications prior to consulting with the prescribing physician. Community pharmacists may also be relied on to provide recommendations, especially in cases where alternative medication delivery routes are required.

Nevertheless, being involved with medication assessment, dispensing, and counseling for medically complex CSHCN is a necessary undertaking for pharmacists, as families of this subgroup have a high care burden, numerous unmet needs, and immeasurable day-to-day challenges.1,17 Unmet needs that have been reported include dental care, therapy services, genetic counseling, home health services, and medications.1,17 Community pharmacists and retail clinics can positively impact this unmet need, and the reward will be enhanced care for the patient and immense appreciation from the child with medically complex healthcare needs and his or her family.


  1. Kuo DZ, Cohen E, Agrawal R, et al. A national profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med. 2011;165:1020-1026.
  2. Cohen E, Kuo DZ, Agrawal R, et al. Children with medical complexity: an emerging population for clinical and research initiatives. Pediatrics. 2011;127:529-538.
  3. Berry JG, Agrawal R, Kuo DZ, et al. Characteristics of hospitalizations for patients who use a structured clinical care program for children with medical complexity. J Pediatr. 2011;159:284-290.
  4. Newacheck PW, Kim SE. A national profile of health care utilization and expenditures for children with special health care needs. Arch Pediatr Adolesc Med. 2005;159:10-17.
  5. Fiks AG, Mayne S, Localio AR, et al. Shared decision-making and health care expenditures among children with special health care needs. Pediatrics. 2012;129:99-107.
  6. Mathematica Policy Research, Inc. Prescription drugs for children with special health care needs in commercial managed care: patterns of use and cost, 1999-2001. Published January 2004. Accessed October 29, 2014.
  7. Munzenberger PJ, Thomas RL, Edwin SB, et al. Pharmacists’ perceived knowledge and expertise in selected pediatric topics. J Pediatr Pharmacol Ther. 2011;16:47-54.
  8. Benavides S, Huynh D, Morgan J, et al. Approach to the pediatric prescription in a community pharmacy. J Pediatr Pharmacol Ther. 2011;16:298-307.
  9. Dundee FD, Dundee DM, Noday DM. Pediatric counseling and medication management services: opportunities for community pharmacists. J Am Pharm Assoc. 2002;42:556-566.
  10. Condren ME, Desselle SP. The fate of pediatric prescriptions in community pharmacies [published online ahead of print September 3, 2013]. J Patient Saf. doi:10.1097/PTS.0b013e3182948a7d.
  11. Agency for Healthcare Research and Quality. Patient Safety Primers: Medication Errors. Updated October 2012. Accessed October 29, 2014.
  12. Williams NT. Medication administration through enteral feeding tubes. Am J Health Syst Pharm. 2008;65:2347-2357.
  13. Stone BL, Boehme S, Mundorff MB, et al. Hospital admission medication reconciliation in medically complex children: an observational study. Arch Dis Child. 2010;95:250-255.
  14. Taketomo CK, Hodding JH, Kraus DM. Pediatric & Neonatal Dosage Handbook. 21st ed. Hudson, OH: Lexi-Comp, Inc; 2014-2015.
  15. Nahata MC, Pai VB, Hipple TF. Pediatric Drug Formulations. 5th ed. Cincinnati, OH: Harvey Whitney Books; 2004.
  16. American Pharmacists Association. The art of patient counseling 2015. Accessed October 29, 2014.
  17. Miller JE, Nugent CN, Gaboda D, et al. Reasons for unmet need for child and family health services among children with special health care needs with and without medical homes. PLoS One. 2013;8:e82570.

Stakeholder Perspective
A Rewarding Challenge

Dr Lampkin's article is thorough in explaining the challenges faced by pharmacists when filling medications for medically complex children with special healthcare needs. The same is true for the physician when tasked with prescribing medications for various medical conditions in one patient—trying to limit adverse effects while maximizing the patient's health. It is evident that the partnership between physician and pharmacist is a vital one, with both relying on each other's expertise to reach the common goal of enhancing care for our patients and their families.

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