Adolescent Loss: The Impact of Loss on Adolescent Oncology Patients
13 Years
21 Years
Both
Adolescent Oncology Patients
Trial Information
Adolescent Loss: The Impact of Loss on Adolescent Oncology Patients
All participants will be assessed once and asked to complete a bereavement questionnaire
quantifying the losses they have experienced. All participants will be screened for
depression/anxiety as well as life outlook using validated tools. Patients who identify
that they have experienced the loss of someone significant in their life on the bereavement
questionnaire will continue with the study and complete a battery of validated psychological
inventories as described below. They will be asked to identify their most significant loss
in regards to completion of the remainder of the questionnaire. Parents will complete
demographic information, the bereavement questionnaire, and complete inventories of family
coping / cohesion regardless of child's responses to bereavement questionnaire.
Primary Objectives:
- Estimate the prevalence of loss, with particular interest in the extent of peer loss,
in adolescent oncology patients who have been on therapy ≥ 12 months ( ≥ 6 months if
progressive or refractory disease) or off therapy for ≤ 3 years.
- Describe the impact of loss on adolescent oncology patients by focusing on coping
efficacy, psychological distress, meaning-making, and complicated bereavement.
Secondary Objective:
- Describe parental knowledge of losses experienced by an adolescent child who has
recently undergone therapy.
Inclusion Criteria:
- Age 13-21 inclusive at time of study enrollment
- English speaking
- Research participant carries a diagnosis of a malignancy (or serious non-malignant
disorder requiring HSCT) >12 months.
- Research participant carries a diagnosis of a malignancy (or serious non-malignant
disorder requiring HSCT) for >6 months and <12 months but has evidence of
refractory/progressive disease.
- Patients who have completed cancer-directed therapy >36 months ago are not eligible.
(Note: Allogenic transplant recipients will be considered "off-therapy" 1 year after
HSCT.)
- No known history of significant cognitive deficits (i.e. with major impairments) that
would preclude completion of study measures; not meant to exclude research
participants with mild learning problems.
- Research participant and 1 parent willing to participate and provide consent/assent
according to institutional guidelines. Parent may decline to participate in parental
inventories, but consent to adolescent participation.
Exclusion Criteria:
- Less than 13-years of age at completion of therapy.
- Patients on hospice who are without scheduled follow-up at St. Jude Children's
Research Hospital (SJCRH)
- "Observation" patients. Patients that are being followed by imaging due to previous
identification of an atypical lesion on radiographic imaging not identified to have a
specific diagnosis.
Type of Study:
Observational
Study Design:
Observational Model: Case-Only, Time Perspective: Prospective
Outcome Measure:
Number of participants who have experienced the death of a friend or relative by type of loss.
Outcome Description:
The prevalence of loss among the participants will be calculated. The type of losses will be described.
Outcome Time Frame:
Once on Day 1
Safety Issue:
No
Principal Investigator
Liza Johnson, MD,MPH
Investigator Role:
Principal Investigator
Investigator Affiliation:
St. Jude Children's Research Hospital
Authority:
United States: Institutional Review Board
Study ID:
ALOSS
NCT ID:
NCT01473862
Start Date:
January 2012
Completion Date:
June 2013
Related Keywords:
- Adolescent Oncology Patients
- adolescent
- bereavement
- cancer
- coping skills
Name | Location |
|---|---|
| St. Jude Children's Research Hospital | Memphis, Tennessee 38105-2794 |
