Anticipatory Guidance on the Risks for Unfavorable Outcomes among Children with Medical Complexity

Edwards, Jeffrey D.

doi:10.1016/j.jpeds.2016.10.020

Cited by 12 publications

(9 citation statements)

References 43 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…These data can improve clinicians’ ability to provide anticipatory guidance to families on the likelihood and timing of possible outcomes of children who are initiated on long‐term, non‐invasive respiratory support for chronic respiratory failure . For example, families of younger children or those with static encephalopathy should have more intensive counseling about their likely higher risk of eventually not being able to be supported non‐invasively.…”

Section: Discussionmentioning

confidence: 99%

A multi‐institutional analysis of children on long‐term non‐invasive respiratory support and their outcomes

Koncicki

Zachariah

Lucas

et al. 2018

Pediatric Pulmonology

Self Cite

View full text Add to dashboard Cite

show abstract

Section: Discussionmentioning

confidence: 99%

A multi‐institutional analysis of children on long‐term non‐invasive respiratory support and their outcomes

Koncicki

Zachariah

Lucas

et al. 2018

Pediatric Pulmonology

Self Cite

View full text Add to dashboard Cite

show abstract

“…Such readmissions may increase as the number of children with CCC grows. Appreciating which patients are more likely to experience readmission could be helpful in providing tailored anticipatory guidance about repeated illness and readmission risks to families (31), as well as concentrate resource planning and efforts to mitigate preventable readmissions (32). For instance, high-risk patients might be kept in the PICU longer to ensure clinical stability, transferred to intermediate care, or provided more intense disposition planning and outpatient follow-up.…”

Section: Discussionmentioning

confidence: 99%

Repeated Critical Illness and Unplanned Readmissions Within 1 Year to PICUs*

Edwards

Lucas

Boscardin

et al. 2017

Critical Care Medicine

Self Cite

View full text Add to dashboard Cite

Objectives To determine the incidence of unplanned readmissions to pediatric intensive care units (PICUs) within one year and examine risk factors associated with repeated readmission. Design, Settings, & Patients Retrospective cohort study of 93,379 patients discharged between 2009 and 2010 from 76 North American PICUs. Measurements Outcomes of index admissions and unplanned readmissions were compared. Timing of readmissions and variation of proportion of readmissions across sites were examined. Cumulative incidence curves for readmission were constructed. Time-to-event analyses were performed to examine factors associated with readmission within one year and to estimate their hazard ratios (HR). Main Results Eleven percent (10,233) of patients had 15,625 unplanned readmissions within one year to the same PICU; 3.4% had two or more readmissions. Readmissions had significantly higher PICU mortality and longer PICU length of stay, compared to index admissions (4.0% versus 2.5%, and 2.5 versus 1.6 days, all P<0.001). Median time to readmission was 30 days for all readmissions; 3.5 days for readmissions during the same hospitalization; and 66 days for different hospitalizations. Time-to-event analyses showed that having more complex chronic conditions (CCCs) was associated with earlier readmission—adjusted HR 2.9 for one CCC; HR 4.8 for two CCC; HR 9.6 for three or more CCC, all P<0.001 compared no CCC). Most specific CCC conferred a greater risk of readmission, and some had considerably higher risk than others. Conclusions Unplanned readmissions occurred in a sizable minority of PICU patients. Patients with CCCs and particular conditions were at much higher risk for readmission.

show abstract

“…Providing clearer formal information channels, realistic expectations about living with a chronic cardiac condition and strategies for self-management may empower patients and parents leading to better coping and adaptation [ 33 ]. Structures and resources for emotional and psychological support are necessary as parents frequently feel vulnerable and powerless during their child’s illness [ 34 ].…”

Section: Discussionmentioning

confidence: 99%

Exploring the influence of socio-cultural factors and environmental resources on the health related quality of life of children and adolescents after congenital heart disease surgery: parental perspectives from a low middle income country

Ladak

Gallagher

Hasan

et al. 2020

J Patient Rep Outcomes

View full text Add to dashboard Cite

Background: Health related quality of life (HRQOL) is an important indicator of long-term well-being, influenced by environmental factors such as family, culture, societal norms and available resources. This study aimed to explore parental perspectives on the influence of socio-cultural factors and environmental resources on the HRQOL of children and adolescents after congenital heart disease (CHD) surgery. Methods: Using a descriptive, qualitative design, semi-structured interviews of children/adolescents who had CHD surgery in this low-middle income country (LMIC) were collected between July to December 2017. There were 20 families enrolled, which included 18 parent dyads (mother and father) and two single mothers, making a total of 38 participants. Initial inductive analysis was further refined using the Social Ecological Model as an analytic lens. Results: At the intrapersonal level, unrealistic expectations of surgery, residual CHD symptoms and difficulty maintaining educational progress were of great concern. There were low levels of health literacy and understanding about CHD among family and friends, however, strong kinship ties were an important resource at the interpersonal level. These families lived in poverty and mothers often carried the sole burden of care for their sick children. At the institutional level, there were unclear expectations of the child's needs at school, and parents had poor access to psychological, family-planning and genetic counselling, and poor access to CHD education resources. At a sociocultural level, religion and trust in God were important coping factors, however, CHD was a gendered experience with particular concerns around scarring and the marriageability of girls. Parents noted the deficit of antenatal and specialist CHD services and felt the consequence of a lack of a universal health care system at the public policy level.

show abstract

Anticipatory Guidance on the Risks for Unfavorable Outcomes among Children with Medical Complexity

Cited by 12 publications

References 43 publications

A multi‐institutional analysis of children on long‐term non‐invasive respiratory support and their outcomes

A multi‐institutional analysis of children on long‐term non‐invasive respiratory support and their outcomes

Repeated Critical Illness and Unplanned Readmissions Within 1 Year to PICUs*

Exploring the influence of socio-cultural factors and environmental resources on the health related quality of life of children and adolescents after congenital heart disease surgery: parental perspectives from a low middle income country

Contact Info

Product

Resources

About