Challenges Following Hospital Discharge for Children With Medical Complexity

This single-center, prospective study used postdischarge phone calls to identify and address hospital-to-home transition challenges. Eligible patients and families were discharged from our multidisciplinary inpatient complex care team⁷  between May and November 2018 (Fig 1). Patients met criteria for this team if they were technology dependent, required 3 or more active consults during admission, or were followed by our outpatient complex care medical home or hospice care team.

To identify challenges, we created a phone call script that was based on a previously published predischarge needs assessment.⁶  Dichotomous and open-ended questions elicited challenges in key discharge coordination areas including health status, medications, home care needs, medical supplies and/or equipment, and follow-up appointments (Supplemental Table 4). The script was refined via discussions with our multidisciplinary complex care colleagues and pilot testing with families. We defined the postdischarge period as the week after hospital discharge. Inpatient complex care team advanced practice registered nurses (APRNs) completed the phone calls and recorded details in the electronic health record. APRNs attempted to contact families at least 24 hours after discharge; each family was called up to 3 times before considering a family “no contact.” Efforts were made to address challenges with assistance from multidisciplinary team members (eg, pharmacist to help resolve medication challenges).

At the time of study enrollment, the electronic health record was reviewed to gather information regarding patient demographics and clinical characteristics including complex chronic conditions and technology dependence.^8,9  Two study members (A.L. and A.M.) independently described calls in which a challenge was identified, categorized the challenge, and assessed whether challenges were addressed. A third reviewer (J.T.) arbitrated disagreements.

Categorical variables were summarized by using counts and frequencies; continuous variables were summarized by using medians and interquartile ranges (IQRs). Descriptive statistics were used to enumerate the number of discrete challenges identified, calculate the proportion of challenges identified in each category, and examine the proportion of challenges addressed (by the multidisciplinary team and/or families). Our institutional review board reviewed and approved this study.

Sixty-seven discharge calls were completed (63% call completion rate) (Fig 1, Table 1). Twenty-nine (43%) completed calls occurred within 24 to 72 hours of discharge; the remaining 38 (57%) occurred 72 hours to 1 week after discharge.

Challenges were identified in 69% of the 67 completed calls. A total of 90 discrete challenges were identified given that 37% of calls endorsed >1 challenge. Seventy-nine percent of identified challenges were addressed, with 27% mitigated by families themselves (Tables 2 and 3).

The most common challenges involved medical signs and/or symptoms (27%; n = 24) including secretion management, feeding regimen, and seizures. All medical challenges were addressed, with families addressing 21% (n = 5) themselves. Although caregivers identified ongoing symptoms after discharge, they were not necessarily alarmed by these changes from baseline level of health. Many caregivers noted overall improvement despite having continued symptoms. In only 1 instance did a call that elicited a medical concern result in readmission.

Twenty-one percent (n = 19) of challenges were related to follow-up appointments. Seventy-nine percent of these families (n = 15) had not yet called to schedule a follow-up appointment (eg, because of the quantity of appointments), 16% (n = 3) were awaiting a return call from the provider’s office, and 5% (n = 1) reported transportation needs.

Medication challenges comprised 20% (n = 18) of total challenges. Specific challenges included not having all required medicines, difficulties with insurance, dosage confusion, or incorrect storage. Of note, patients had a median of 21 (IQR 13–29) medications at time of discharge.

Home nursing challenges (17%; n = 15) included staffing availability for approved hours or initiating care with a home nursing company. Although our team care manager (CM) was contacted in 2 instances, we were unable to definitively remediate any of these access-related home nursing challenges because of nursing shortages.

Medical supplies and equipment issues, primarily related to needing supplies or equipment (eg, gastrostomy tubes, tracheostomy ties), comprised 14% (n = 13) of challenges. The CM often helped address these challenges.

The 30-day readmission rate was 27% during the study period, which is not significantly changed when compared to the baseline readmission rate of 22% (P = .19) for our complex care service 6 months before initiation of the study.

At our institution, we are fortunate to have a multidisciplinary inpatient complex care team that coordinates efforts toward successful hospital-to-home transitions for CMC. However, the majority of families identified postdischarge challenges. Challenges varied in scope, yet many could have important sequelae in the postdischarge period. These challenges are likely a reflection of the complex medical needs of CMC. We were struck by the resourcefulness of families in troubleshooting challenges.

A prospective study by Wells et al¹⁰  in which home nursing visits to identify discharge challenges for CMC were completed within 72 hours of discharge similarly found that caregivers faced postdischarge challenges related to medical concerns, medications, nursing, and medical equipment. This study also took steps toward resolving challenges. Although phone calls may be less sensitive than home nursing visits in detecting challenges, our study provides a potentially more feasible and sustainable method for assessing postdischarge challenges.

In their quasi-experimental study, Heath et al¹¹  explored the impact of phone calls within 72 hours of discharge on pediatric readmission rates. Phone calls assessed for challenges related to the patient’s health status, medication concerns, durable medical equipment, and follow-up appointments. However, the patients were not necessarily medically complex, and more than half of the challenges discovered by Heath et al¹¹  were medication related. Although this study found improvements in 30-day readmission rates, readmission rates in our study remained unchanged and consistent with previously published readmission rates for CMC.¹² 

The most commonly identified challenges in our postdischarge calls were related to health status. This may suggest that patients are discharged once improved to an acceptable level of health, agreed on by the medical team and caregivers, rather than a complete return to baseline health. Furthermore, ongoing or new symptoms noted as a challenge during the phone call did not always lead to caregiver concern. This may represent the variability in caregiver experiences, support systems, or coping strategies that result in different reactions to similar challenges. Clinicians should take this into account when providing discharge counseling.

Lack of home nursing was another commonly identified challenge. Home nursing is a critical element for a safe hospital-to-home transition for technology-dependent patients.^13,14  This highlights the disparity between essential needs of the growing number of CMC and our current health care system, reflecting nationwide trends related to limited available workforce providing quality home care.^13,15–18 

Many challenges had already been addressed by the caregiver at the time of the postdischarge call. This underscores the resourcefulness and ability to navigate the complex health care system that caregivers of CMC develop through their experience with their children. Desai et al⁵  identified similar findings in a qualitative study exploring the needs of caregivers and patients with varying medical complexity during hospital-to-home transitions. Health care self-efficacy arose as a central domain, with caregivers describing themselves as the individual solely responsible for caring for their child after discharge.⁵ 

This study is not without limitations. Although our study population embodies the demographics of patients admitted to our inpatient complex care service, we recognize that as a single-center study, it may not accurately reflect the population at other institutions. Given this convenience sample, this work may not be generalizable to other sites without a similar inpatient complex care model; however, our hope is that identified themes stimulate consideration from all inpatient providers caring for CMC, regardless if a specific team or structure exists. Variability in call timing is another potential limitation; phone calls made shortly after discharge may not be fully inclusive of all potential challenges, whereas families called 3 to 7 days after discharge may not have reported issues already identified and self-resolved. We should consider respondent selection bias, as 63% of eligible caregivers completed postdischarge calls. Although likely multifactorial, caregivers may have answered more readily knowing the call purpose and the potential that our team could assist them. Lastly, calls were attempted to only 75% of eligible patients and only included English-speaking patients because of a limitation of our study design; APRNs were asked to complete calls during busy clinical shifts without dedicated time.

In future work, we hope to identify patient and family characteristics that may indicate higher risk of postdischarge challenges, such as limited English proficiency, as well as assess the effect of postdischarge phone calls on reuse of health services and other outcomes important to patients and families. We plan to translate our findings back to patient care through improved discharge planning, such as codesigning discharge planning tools with our families of CMC.

Our findings emphasize that the growing population of CMC have needs, both in the hospital and at home, that are at times challenging to accommodate in our current health care system.¹⁷  Given CMC’s significant health care use, it is imperative that health care providers continue to pursue safe and efficient hospital-to-home transitions and that our health care system adapts to accommodate this important cohort of patients.

We thank the hospital medicine advanced practice nurses who assisted in making discharge phone calls (Heather Darrell, Melissa Forton, Randi Mullaney, Michelle Pennington, Angela Younts), as well as multidisciplinary team members Suzan DeCicca, MSW, LSW; Deborah Hafley, RN; Owen Densel, RD; and Sarah Stiehl, PharmD, BCPPS, for their contributions in helping families navigate postdischarge challenges.