Quality of End-of-Life Care for Children With Cancer

Trial statusRecruiting
Trial phaseNot listed
Trial typeObservational
Biological sexAll
Age18+
SponsorChildren's Oncology Group

About this trial

This study examines the role of access to care, patient/family interactions with the healthcare system, and stress in explaining variations in quality of end of life care. The data collected from this study may help researchers develop a model for identifying patients at risk of low quality end of life care as well as recommendations for potential future interventions.

Eligibility criteria

This trial accepts healthy volunteers

Qualifiers

Must be deceased

< 18 years old at time of death

Diagnosed with any oncologic condition

History of enrollment on Stratum 1 of APEC14B1, Project:EveryChild

Disqualifiers

None

Trial population

Bereaved parents of an eligible deceased COG registered index child patient previously enrolled on Stratum 1 of APEC14B1, Project:EveryChild

Trial design

Design model

Other

Time perspective

Other

Treatments tested in this trial

  • Non-Interventional Study

    Other intervention

    Non-interventional study

Treatment groups

2,425 Participants
are divided into 2 treatment groups
Group A: Observational part 11 intervention
Group B: Observational part 21 intervention

Trial outcomes

Primary outcomes

1

Quality of end of life (EOL) care

Is a composite measure evaluated as the percent of applicable measures with high-quality care for each patient. For each child, will calculate the percent of measures applicable to that patient for which they met the criteria for high-quality care. Of note, not all measures will apply to every patient (e.g., assessment of sibling support will only apply to those with siblings). EOL quality will be treated as a continuous variable and will be modeled using linear mixed effects models with COG site included as a random effect. Models will be adjusted for key demographic (child: death age, race, ethnicity, insurance, biologic sex; parent: age, race, ethnicity, relationship to child, biologic sex) and clinical factors (cancer diagnosis, time from diagnosis to death, relapse status, clinical trial enrollment, cause of death, palliative care team at primary treatment site).

Time frame
Up to study completion, an average of 4 years

Secondary outcomes

Other outcomes

Sponsors and contacts

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