Table 3 Phenomena covered by the identified PROMs (n = 80)

Adverse events/ side effects

2

Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE); study specific [79]

Anger (co-occurring symptoms)

1

Patient-Reported Outcomes Measurement Information System (PROMIS) pediatric Anger

Anxiety symptoms

3

McMurtry Faces Anxiety Scale; Patient-Reported Outcomes Measurement Information System (PROMIS) Anxiety; Screen for Anxiety Related Emotional Disorders (SCARED)

Anxiety and depressive symptoms

2

Hospital Anxiety and Depression Scale (HADS); Patient-Reported Outcomes Measurement Information System (PROMIS) depressive symptoms

Anxiety and pain intensity

1

Children’s Anxiety and Pain Scale (CAPS)

Benefit (and burden)

2

Benefit and Burden Scale for Children; Benefit Finding Scale for Children (BFSC)

Comfort

3

Children’s comfort Daisies; Children’s Comfort Line Visual Analog Scale; Children’s Comfort 1-item

Depressive symptoms

1

Children’s Depression Inventory (CDI)

Distress

2

Distress Thermometer (DT); Kessler 6 Psychological Distress Scale (K-6)

Dyspnea

1

Dalhousie Dyspnea Scale

Fatigue

2

Childhood Fatigue Scale; Patient-Reported Outcomes Measurement Information System (PROMIS) fatigue

Health status

2

Child health status; study specific [100]

Health-related quality of life (HRQL) generic

4

Children’s Health Questionnaire; Kidscreen-52; PedsQL core; TNO-AZL questionnaire for children’s health-related quality of life (HRQL)

HRQL disease specific

6

PedsQL Brain Tumor Scale; PedsQL Cancer Module; PedsQL End-Stage Renal Disease (ESRD); PedsQL Fatigue Scale; PedsQL Neuromuscular Module; Quality of Life for Primary Ciliary Dyskinesia (QOL-PCD)

HRQL and symptoms

1

PediQuest (PQ) with PedsQL and Memorial Symptom Assessment Scale (MSAS)

Hope

1

Snyder Hope Scale

Life threat

1

Study specific [104]

Mobility

1

Patient-Reported Outcomes Measurement Information System (PROMIS) mobility

Multidimensional

1

Patient-Reported Outcomes Measurement Information System (PROMIS) profile

Nausea

1

Baxter Retching Faces (BARF)

Pain

6

Brief Pain Inventory (BPI); Childhood Health Assessment Questionnaire Pain (CHAQ-pain); Face, Legs, Activity, Cry, Consolability Healthcare Personnel (FLACC HCP); Faces pain scale; Patient-Reported Outcomes Measurement Information System (PROMIS) Health Assessment Pain; Wong-Baker Faces

Pain, agitation, and sedation

1

Nurse-Documented Neonatal Pain, Agitation and Sedation Scale (N-PASS)

Pain characteristics and management

1

Study specific [48]

Pain and distress

1

COMFORT-B scale

Pain intensity

1

Patient-Reported Outcomes Measurement Information System (PROMIS) pain intensity

Pain interference

1

Patient-Reported Outcomes Measurement Information System (PROMIS) pain interference

Pain location

1

Body outline

Palliative outcomes

1

Children’s Palliative Outcome Scale (CPOS)

Posttraumatic stress disorder reaction

1

Posttraumatic Stress Disorder Reaction Index (PTSDI)

Psychological stress

1

PROMIS Pediatric Psychological Stress

QOL

7

Generic Children's QOL Measure (GCQ); General Health Assessment for Children (GHAC); Inventory for the Assessment of the QOL in children and adolescents (ILK); Pediatric Advanced Care-Quality of Life Scale (PAC-QoL); Scheduled evaluation of individual quality of life (SEIQoL); Short-Form-36 (SF-36); Vécu et Santé Perçue de l’Adolescent et l’Enfant (VSP-A)

QOL disease specific

3

Preschool Pediatric Cardiac Quality of Life Inventory; Sinus and Nasal Quality of Life Survey (SN-5); COPD assessment test (CAT)

Resilience

1

Connor Davidson Resilience Scale (CDRISC-10)

Suffering

1

Study specific [51]

Symptoms (physical and psychological)

7

ePROtect; Memorial Symptom Assessment Scale (MSAS); PediQuest Memorial Symptom Assessment Scale (PQ-MSAS); study specific [84, 117, 124]; Symptom Screening in Pediatrics Tool (SSpedi)

Symptoms (psychological)

1

Brief symptom inventory

Symptoms and suffering

3

Study specific for infants [45]; study specific [80]; study specific [106]

Symptoms at end of life

1

Study specific [97]

Symptoms related to therapy

1

Therapy-Related Symptom Checklist (TRSC);

Well-being

2

Nurse Perceptions of Infant Well-Being Survey; “To lose a child”;