Feasibility and preliminary outcomes of an integrated pediatric sickle cell disease and pulmonary care clinic for children with sickle cell disease

Abstract

Background: In children with sickle cell disease (SCD), comorbid asthma is associated with increased disease severity and morbidity, but it remains underdiagnosed and optimal management paradigms are not well defined. The purpose of this study was to determine the feasibility and preliminary outcomes of an integrated pediatric SCD and pulmonary care clinic in children with SCD. Methods: We implemented a pre-post quality improvement (QI) project in our pediatric hematology clinic between 2017 and 2019. Guided by the chronic care model, patients who were ages 2-18 years, diagnosed with SCD and suspected pulmonary comorbidities, received care in an interdisciplinary clinic. We examined feasibility and compared clinical outcomes to 24 months prior (2015-2017) to the implementation of the integrated care model. Results: Twenty-four patients were included in the QI project: 88% (n = 21) received pulmonary function testing, 92% (n = 22) were diagnosed with asthma, and 33% (n = 8) with obstructive sleep apnea. Adherence to pulmonary appointments was increased by 81% (mean difference [MD] = 1.3, 95% confidence interval [CI] = 0.71-1.92; P < .001). Unplanned acute health care utilization was reduced by 59% (MD = 2.9, 95% CI = 1.14-4.69; P < .01) and packed red blood cell transfusion was reduced by 81% (MD = 1.38, 95% CI = 0.71-2.04; P < .001). Conclusion: Asthma is prevalent in children with SCD, and interdisciplinary clinics can improve access to subspecialty pulmonary care and reduce unplanned acute care. Additional patients and a longer follow-up period are required to determine the true treatment effect.

Integrated care for children living with complex care needs: an evolutionary concept analysis

“…Step 5: Identify implications and ideas for further development of concept a specific integrated model of care [3,15,17,18,[21][22][23][24][25][26][27][28][29]. Models of care described were chosen specifically to suit the study population and included 'integrated behavioural model' [15,17], 'family integrated care model' [24][25][26], 'integrated clinic model' [27], 'integrated practice model' [23], 'integrated complex care model' [3], 'integrated care model' [22,28], 'Children's Treatment Network' [18], 'The Paediatric Perioperative Surgical Home model' [21], and 'collaborative practice model' [29]. The variation in the terminology highlights how the focus of integrated care has developed and changed over time.…”

“…In the majority of studies, this was achieved through the establishment of shared care or treatment plans with close input from the family and medical team [17,18,22,23,[28][29][30]. There was a strong focus on promoting parental autonomy and empowerment by allowing parents to contribute towards the decisionmaking processes regarding their child's condition [3,24,27,32], and in some cases, parents were given permission to attend medical rounds alongside the healthcare team [24]. Typically, families were involved in every step of developing shared care plans, and collaboration between family and HCPs was commonly used to set goals of care to meet their child's needs.…”

“…Typically, families were involved in every step of developing shared care plans, and collaboration between family and HCPs was commonly used to set goals of care to meet their child's needs. In four studies, education was key to enhancing family involvement, with educational sessions or written information provided to family members and children with advice and information on how to manage their care needs [24,25,27,32]. Furthermore, giving the family access to unrestricted and 24-7 specialist advice and guidance from HCPs when at home was considered an integral part of an integrated care programme [5].…”

“…Integrated 'joint-care clinics' were commonly referred to and involved the integration of staff from two existing hospital departments to provide integrated care for the child at their visit. Departments that delivered integrated care through joint care clinics included maternity and neonatal [26], renal [16], critical care and neurotrauma [28], and pulmonology and haematology [27]. Children were seen by multiple specialists during their appointments or concurrently to address other health care needs and screen for common comorbidities related to their specific condition.…”

“…A strong body of evidence shows that the lack of integration within healthcare systems results in decreased quality of life for children with CCNs [3,24,25,27]. There is considerable disconnect described in the literature between services for children within the community and across different disciplines, and a lack of flexibility which can result in discontinued care [15,23,37].…”