Supplementary Table 5. Outcomes and definitions included in Round 2 of the Delphi survey.
Global Outcome and Definition Specific Outcome Specific Outcome Definition Emotional Health and Function
General effects on the critically ill child's mental health, emotional experiences and functioning.
This includes but is not limited to: mood and feelings of joy, anger, hope, fear, and sadness;
ability to identify and express feelings; and diagnoses or symptoms of anxiety, depression, and post-traumatic stress disorder.
Mood and Feelings A critically ill child's positive (e.g., joy or happiness) or negative (e.g., sadness, fear) views and feelings about himself/herself and the ability to manage his/her feelings and mood.
Behavior and Temperament A critically ill child's ability to regulate his or her own behavior at an age-appropriate level.
Sense of Control A critically ill child's belief of the level of control they have over his/her current and future health compared to external factors that control their health.
Meaning and Purpose The critically ill child's sense that life has purpose and there are good reasons for living, including hopefulness, optimism, goal-directedness, and feelings that one’s life has worth.
Post-Traumatic Stress A critically ill child's response to a traumatic event including his/her ability to regulate negative thoughts, feelings, arousal and reactive symptoms, and fear/anxiety of medical encounters.
Family Function
General effects on the family
members’ (parents/legal guardians, siblings, and significant others) emotional, social, physical and financial health and ability to recover and adapt to the critically ill child returning home.
Parent/Legal Guardian Emotional Function
Impact of critical illness on parent/legal guardian's mental health, emotional experiences and
functioning. This includes but is not limited to mood and feelings of joy and anger, fear; ability to identify and express feelings and diagnoses or symptoms of anxiety, depression and post-traumatic stress.
Parent/Legal Guardian Physical Function
Impact of critical illness on parent/legal guardian's ability to support essential activities necessary to maintain health and well-being in addition to nonessential activities that impact the quality of life.
Parent/Legal Guardian Social Function Impact of critical illness on parent/legal guardian's ability to reintegrate into their social network.
Parent/Legal Guardian Cognitive Function
Impact of critical illness on parent/legal guardian's ability to take in information. This may involve the ability to communicate with others or to focus on and remember information.
Parent/Legal Guardian Overall Health The overall impact of the child's critical illness on the parent/legal guardian's physical, social, emotional, and cognitive function including activities of daily living, sleep and pain.
Parent/Legal Guardian Employment and Career
Impact on parents/legal guardians' employment status and career and the choices made to care for critically ill child (e.g., paid/unpaid leave of absence, taking time off for medical appointments, shortening work day, taking a new position to accommodate child's needs or resigning from employment position to care full time for child).
Financial Stress Impact of the child's critical illness on family's ability to meet current and concerns related to future financial obligations that affect child's medical care and other family expenses.
Sibling Emotional Function Impact of critical illness on sibling's mental health, emotional experiences and functioning. This includes but is not limited to mood and feelings of joy and anger, fear; ability to identify and express feelings and diagnoses or symptoms of anxiety, depression and post-traumatic stress.
Sibling Physical Function Impact of critical illness on sibling's ability to support essential activities necessary to maintain health and well-being in addition to nonessential activities that impact the quality of life.
Sibling Social Function Impact of critical illness on sibling's ability to reintegrate into their social network.
Sibling Cognitive Function Impact of critical illness on sibling’s ability to take in information. This may involve the ability to communicate with others or to focus on and remember information.
Sibling Overall Health The overall impact of the child's critical illness on the sibling's physical, social, emotional, and cognitive function including activities of daily living, sleep and pain.
Home Situation Impact of the child's critical illness on families' ability to successfully adapt and incorporate changes to family activities, schedules, new medical equipment to accommodate the child returning home with impairments.
Family Relationships Impact on family relationships related to the child's critical illness hospitalization and return home (could be positive or negative and includes parents/legal guardians' separation and divorce).
Parent/Legal Guardian Quality of Life A measure of how a child's critical illness affects their parent/legal guardian's health, perception of life, satisfaction, or enjoyment.
Sibling Quality of Life A measure of how a child's critical illness affects their siblings' health, perception of life, school performance, satisfaction, or enjoyment.
Family Quality of Life A measure of how a child's critical illness affects the family's perception of life, satisfaction, or enjoyment.
Health Care Utilization Post-Discharge ED Visits The child's use of the Emergency Department for a health problem whether or not it is related to the
General use of a variety of health care services by the critically ill child and family to improve or maintain child's emotional, physical, and cognitive functions.
child's critical illness.
Hospital/ICU Readmission Readmission to the hospital or ICU for a health problem whether or not it is related to the child's critical illness.
Outpatient Health Maintenance Healthcare related testing, therapies, or visits not conducted during a hospital admission (e.g., visits to primary care provider office, care at school, home visits, or visits with community outreach programs) New Technological Supports
(Tracheostomy, Gastrostomy Tube, Oxygen, etc.)
The child's use of medical devices to maintain body functions necessary to sustain life after a critical illness.
Cost of Care The cost or charges of the child's care to providers, payors, society, and entities other than the family.
Burden of Health Maintenance The ability of and mental/emotional toll on the family to obtain access to care and keep up with the number and complexity of therapies, appointments, and medications for care of the critically ill child.
Physical Function
General ability of the critically ill child's body to support movement, strength, and age- appropriate functions related to
essential activities necessary to maintain health and well-being in addition to nonessential activities that impact the quality of life.
Medical Frailty The critically ill child's worsening cycle of negative energy balance and diminished strength and tolerance for exertion that increases susceptibility to chronic disease and disability. Often characterized by muscle wasting and weakness, slow walking speed, reduced energy expenditure, fatigue, weight loss,
exhaustion, diminished physical activity and in some cases cognitive decline.
Appearance Factors outwardly affecting (positive or negative) the way the critically ill child looks (e.g. balding, crutches, scar, limp, and new medical aids/devices).
Sensory Functions Functions related to how the critically ill child senses the external environment (e.g. hearing, vision, touch).
Organ Function Function as measured by medical tests, calculations, or tools used to diagnose the severity, duration, and number of organ or system dysfunctions of the critically ill child (e.g. Pulmonary Function Tests, Pediatric Logistic Organ Dysfunction score, Proulx Multiple Organ Dysfunction Criteria).
Physical Mobility The critically ill child's activities of physical mobility (e.g. getting out of a bed/chair, running, picking up objects).
Social Function
The critically ill child’s ability to reintegrate into their familial and social network and school environment, including peer relationships and community. The impact of PICU hospitalization on the critically ill child’s capacity for social development.
Development and Maintenance of Self- Esteem
The critically ill child's process of establishing their self-worth or confidence in their abilities.
Child Peer Relationships Impact of critical illness on the critically ill child's peer relationships.
School or Work Attendance, Learning, and Performance
The critically ill child's ability to attend, learn, and complete school or work assignments at developmentally or grade appropriate level.
Child Participation The impact of critical illness on the child's ability to participate or engage in age appropriate activities.
Cognitive Function
General skills related to how the critically ill child takes in information, thinks, learns, and interacts with the world around them. They may involve the ability to communicate with others or to focus on, think about, and remember information.
These skills typically advance over time as children develop.
Intelligence Impact of critical illness on the child's capacity for learning, reasoning, understanding, and similar forms of mental activity.
Memory Impact of critical illness on the child's mental capacity or faculty of retaining and reviving facts, events, impressions, or of recalling or recognizing previous experiences.
Attention Impact of critical illness on the child's act or faculty of attending, especially by directing the mind to an object.
Executive Function Impact of critical illness on the child's group of complex mental processes and cognitive abilities (e.g., working memory, impulse inhibition, and reasoning) that control the skills (e.g., organizing tasks, remembering details, managing time, and solving problems) required for the child's goal-directed behavior.
Communication Impact of critical illness on the child's ability to process information exchanged between individuals through a common system of symbols, signs, or behavior.
Visual Spatial Ability or Construction Impact of critical illness on the child's ability to understand, reason, and remember the spatial relations among objects or space.
Overall Health
The overall impact of the child's critical illness on their physical, social, emotional, and cognitive function including activities of daily living, sleep and pain.
Sleep Impact of critical illness on the child's sleep quality and quantity.
Pain A range of physical or emotional distress experienced by the critically ill child due to pain from the critical illness.
Fatigue A critically ill child's range of emotional, physical, cognitive, or social symptoms, from mild feelings of tiredness to an overwhelming, debilitating, and sustained sense of exhaustion.
Activities of Daily Living The critically ill child's cognitive and physical capacity to perform age and developmentally appropriate functional activities of daily living (e.g. eating, bathing, dressing, toileting, transferring and maintaining continence).
Child's Self-Care and Well-Being A critically ill child and family's deliberate activities and support conducted to protect and advocate for the child's mental, emotional and physical health. Includes activities to enhance child's emotional well-being and support resilience, reduce stress and anxiety and promotes child's satisfaction with life and positive functioning.
Trajectory of Recovery The impact of critical illness on child's ability to regain cognitive, physical, and other functions over time including ongoing symptoms that impede function and ability to live independently in the future.
Overall Development The impact of critical illness on the child's development and adaptations in function and growth. Refers to age appropriate behaviors that child needs to develop to function well in daily life. Adaptive behaviors are the skills needed to perform the activities of daily living.
Survival The critically ill child's ability to survive to an expected or determined endpoint.
Child Quality of Life A comprehensive measure of how the critically ill child's health affects his/her perception of life satisfaction or enjoyment.
New Medical Conditions or Diseases The impact of the critical illness on a child’s susceptibility to experiencing new medical conditions or diseases (e.g., seizures and epilepsy).
Hospital Discharge Disposition Location of critically ill child after discharge from hospital (e.g., home unassisted, home with home care, skilled nursing facility, or rehabilitation center).
