Table 1 Overview of outcomes, measurements and data collection time points

  Caregiver QOL

Quality of Life in Life Threatening Illness–Family Carer Version (QOLLTI-F): 16 items [27]

State of carer, patient wellbeing, quality of care, outlook, environment, finances, and relationships

Baseline at study entry and dynamically after that. Self-report. Mothers, fathers

  Child’s QOL

DISABKIDS Chronic Generic Measure - DCGM-37: 37 items [28]

Mental, social, and physical, based on the WHO conceptualisation of health-related QOL.

Baseline at study entry and dynamically after that. Self-report (7 years and older) or proxy report (parent).

  Child’s symptoms

Memorial Symptom Assessment Scale (MSAS): 30 or 8 items (depending on child’s age) [29, 30]

Prevalence, severity, distress

  Siblings QOL

KIDSSCREEN-27: 27 items [31]

Physical well-being, psychological well-being, autonomy & parent relation, peers & social support, school environment

Baseline at study entry and dynamically after that. Self-report (8 years and older)

  Professional’s QOL

Professional QOL (ProQOL): 30 items [32]

Compassion satisfaction, compassion fatigue, i.e. burnout and work-related secondary trauma

Cross-sectional. Self-report. HCPs not specialised in PPC but involved in direct patient care of PPC patients.

  Grief processes

Würzburger Trauerinventar” (WüTi): 24 items [33]

Acute emotional and cognitive impairments, general personal development/growth, feelings of guilt and self-reproaches, increase of sensitivity/empathy for others, closeness to the late person

1 month after the child’s death and three-monthly after that. Self-report. Mothers, fathers

  Parental QOL

The WHO Quality of Life (WHOQOL-BREF): 26 items [34]

Physical, psychological, social relationships, environment

  Siblings QOL

KIDSSCREEN-27: 27 items [31]

Physical well-being, psychological well-being, autonomy & parent relation, peers & social support, school environment

1 month after the sibling’s death and three-monthly after that. Self-report (8 years and older).

 Sense of coherence (SOC)

Family Sense of Coherence (FSOC): 26 items [21]

Comprehensibility, manageability, meaningfulness

Cross-sectional at study enrolment. Structured interview. Mothers, fathers

 Family hardiness (FH)

Family Hardiness Index (FHI): 20 items [22]

Commitment (internal strengths and cooperativeness), challenge (resourcefulness and willingness to learn), control (sense of having control over life circumstances)

Cross-sectional at study enrolment. Structured interview. Mothers, fathers

 Healthcare resource utilisation

Routine data

Number of hospital admissions including number of emergency and/or outpatient consultations and number of admissions to a paediatric intensive care unit (PICU), number of resuscitations, number of invasive procedures e.g. surgery and imaging requiring sedation, total length of hospital stay (LOS) per admission, number of days receiving professional community home care services

Chart review, continuously during the child’s PC phase.

 Place of death

Routine data

PICU, hospital ward, home, and other

Chart review at time of death

 Economic analysis

Routine data

Household data

Costs related to healthcare resources utilised

Effective costs charged and paid by formal payers

Direct and indirect health-related household expenditures: Out of pocket payments, changes in employment status and income, financial support

Cost data retrieved from hospitals and formal payers for the time of study participation.

Baseline at study entry and dynamically after that. Self-report. Mothers, fathers

 Introduction of SPPC and Validation of the PaPaS-Scale

Paediatric Palliative Screening Scale (PaPaS-Scale): 11 items [25]

Trajectory of disease and impact on daily activities of the child, expected outcome of treatment directed at the disease and burden of treatment, symptom and problem burden, preferences/needs of patient or parents / preferences of HCPs, estimated life expectancy

Cross-sectional for each family and child older than 1 year of age at study entry.

 Professional Quality of Life

ProQOL Version 5: 30 items [35]

Compassion fatigue, i.e. burnout and secondary traumatic stress, and compassion satisfaction

Cross-sectional. Self-report. HCPs not specialised in PPC and involved in direct care of PPC or end-of-life patients.