Clinical Care Strategies That Support Parents of Children With Complex Chronic Conditions

Multiple chronic conditions (MCC) are one of today’s most pressing healthcare concerns, affecting 25% of all Americans and 75% of older Americans. Clinical care for individuals with MCC is often complex, condition-centric, and poorly coordinated across multiple specialties and healthcare services. There is an urgent need for innovative patient-centered research and intervention development to address the unique needs of the growing population of individuals with MCC. In this commentary, we describe innovative methods and strategies to conduct patient-centered MCC research guided by the goals and objectives in the Department of Health and Human Services MCC Strategic Framework. We describe methods to (1) increase the external validity of trials for individuals with MCC; (2) study MCC epidemiology; (3) engage clinicians, communities, and patients into MCC research; and (4) address health equity to eliminate disparities.

Palliative care and complex chronic conditions since the perspective of healthcare professionals

European Journal of Public Health ◽

10.1093/eurpub/ckaa166.1095 ◽

2020 ◽

Vol 30 (Supplement_5) ◽

Author(s):

A Doñate-Martínez ◽

L Llop ◽

J Garcés

Keyword(s):

Primary Care ◽

Palliative Care ◽

Early Identification ◽

Chronic Conditions ◽

Healthcare Professionals ◽

Care Pathway ◽

Holistic View ◽

Complex Chronic Conditions ◽

Symptom Intensity

Abstract Background According to the WHO, palliative care (PC) is applicable early in the course of illness together with other curative therapies. Early PC has demonstrated beneficial effects on quality of life and symptom intensity among cancer patients. However, PC is not as early integrated on the care pathway of complex chronic conditions (CCC). This abstract presents barriers and needs identified to effectively implement early PC on CCC performed under the EU-funded InAdvance project (ref.: 825750). Methods Semi-structured interviews were performed with 16 healthcare professionals (HPs) from primary care and hospital settings working with older patients with CCC in Valencia (Spain). Results Interviews reported that main needs identified to provide early PC are: (a) coordinated strategies between multi-setting HPs to an early identification of CCC patients in need of PC; (b) adequate resources to attend patients' PC needs from a holistic view, i.e. psychosocial and spiritual needs; and (c) early integration of basic PC at primary care teams. The main barriers identified were: (a) stereotypes associated to the traditional PC approach; (b) poor knowledge from HPs of the PC holistic approach; and (c) lack of specific protocols or pathways for CCC in need of PC. Conclusions Specific skills and resources are the most relevant needs to effectively provide early PC among patients with CCC. First, it is urgent to demystify the negative culture-related vision of PC that is commonly associated to sedation and last days of a person's life. Also, multidisciplinary HPs require specific training to identify and provide early PC tailored to CCC. And, it is required a strategic and multi-setting organizational approach with fluent information flow and coordinated roles. Key messages Healthcare expenditure would be considerably reduced, especially at hospital and emergency units, with an early identification of patients with CCC in need of PC. Empowering primary HPs in PC would improve the quality of care of patients with CCC.

PCATS: Pediatric Care Across Transitions of Service. Caring for Pediatric Patients with Complex Chronic Conditions

Archives of Physical Medicine and Rehabilitation ◽

10.1016/j.apmr.2017.09.097 ◽

2017 ◽

Vol 98 (12) ◽

pp. e179

Author(s):

Amy Hiller ◽

Erika Erlandson

Keyword(s):

Chronic Conditions ◽

Pediatric Patients ◽

Pediatric Care ◽

Complex Chronic Conditions

A study of paediatric patients with complex chronic conditions admitted to a paediatric department over a 12 month period

Anales de Pediatría (English Edition) ◽

10.1016/j.anpede.2020.07.022 ◽

2021 ◽

Author(s):

Daniel Penela-Sánchez ◽

Sílvia Ricart ◽

Nereida Vidiella ◽

Juan José García-García

Keyword(s):

Chronic Conditions ◽

Complex Chronic Conditions ◽

Paediatric Patients ◽

Paediatric Department

Outpatient Follow-up Care After Hospital Discharge of Children With Complex Chronic Conditions at a Rural Tertiary Care Hospital

Clinical Pediatrics ◽

10.1177/00099228211047242 ◽

2021 ◽

pp. 000992282110472

Author(s):

Andrew Brown ◽

Mary Quaile ◽

Hannah Morris ◽

Dmitry Tumin ◽

Clayten L. Parker ◽

...

Keyword(s):

Intensive Care Unit ◽

Intensive Care ◽

Hospital Discharge ◽

Care Coordination ◽

Chronic Conditions ◽

Tertiary Care ◽

Care Hospital ◽

Icu Admission ◽

Complex Chronic Conditions

Objective To determine factors associated with completion of recommended outpatient follow-up visits in children with complex chronic conditions (CCCs) following hospital discharge. Methods We retrospectively identified children aged 1 to 17 years diagnosed with a CCC who were discharged from our rural tertiary care children’s hospital between 2017 and 2018 with a diagnosis meeting published CCC criteria. Patients discharged from the neonatal intensive care unit and patients enrolled in a care coordination program for technology-dependent children were excluded. Results Of 113 eligible patients, 77 (68%) had outpatient follow-up consistent with discharge instructions. Intensive care unit (ICU) admission ( P = .020) and prolonged length of stay ( P = .004) were associated with decreased likelihood of completing recommended follow-up. Conclusions Among children with CCCs who were not already enrolled in a care coordination program, ICU admission was associated with increased risk of not completing recommended outpatient follow-up. This population could be targeted for expanded care coordination efforts.

A Scoping Review and Thematic Classification of Patient Complexity: Offering a Unifying Framework

Journal of Comorbidity ◽

10.15256/joc.2012.2.15 ◽

2012 ◽

Vol 2 (1) ◽

pp. 1-9 ◽

Cited By ~ 66

Author(s):

Alexis K. Schaink ◽

Kerry Kuluski ◽

Renée F. Lyons ◽

Martin Fortin ◽

Alejandro R. Jadad ◽

...

Keyword(s):

Scoping Review ◽

Chronic Conditions ◽

Modern Medicine ◽

Complex Chronic Conditions ◽

Health And Social Care ◽

Payment Schemes ◽

Important Health ◽

The Face ◽

Patient Complexity ◽

Important Health Issue

The path to improving healthcare quality for individuals with complex health conditions is complicated by a lack of common understanding of complexity. Modern medicine, together with social and environmental factors, has extended life, leading to a growing population of patients with chronic conditions. In many cases, there are social and psychological factors that impact treatment, health outcomes, and quality of life. This is the face of complexity. Care challenges, burden, and cost have positioned complexity as an important health issue. Complex chronic conditions are now being discussed by clinicians, researchers, and policy-makers around such issues as quantification, payment schemes, transitions, management models, clinical practice, and improved patient experience. We conducted a scoping review of the literature for definitions and descriptions of complexity. We provide an overview of complex chronic conditions, and what is known about complexity, and describe variations in how it is understood. We developed a Complexity Framework from these findings to guide our approach to understanding patient complexity. It is critical to use common vernacular and conceptualization of complexity to improve service and outcomes for patients with complex chronic conditions. Many questions still persist about how to develop this work with a health and social care lens; our framework offers a foundation to structure thinking about complex patients. Further insight into patient complexity can inform treatment models and goals of care, and identify required services and barriers to the management of complexity.