Care Plans for Cancer Predisposition

Children's Hospital of Philadelphia164 enrolled

Overview

Develop and evaluate acceptability, feasibility, and preliminary efficacy of digital care plan and accompanying text message reminders for children and adolescents with a known Cancer Predisposition Syndromes (CPS).

As over 15% of pediatric cancers are associated with a cancer predisposition, it is increasingly becoming standard of care for children with cancer, as well as those with suspected hereditary risk, to be evaluated for germline cancer predisposition. Unfortunately, the increase in pediatric genetic testing has exceeded the pace of research supporting effective cancer surveillance in positive cases. Additionally, guidelines for cancer predisposition management are not easily accessed or understood by families; thus, there is often a disconnect between the understanding and retention of such information relayed to families. In this study, Investigators will develop and evaluate the acceptability, feasibility, and preliminary efficacy of digital care plans for Cancer Predisposition Syndromes (CPS) with accompanying text message reminders for children and adolescents with a known CPS. Digital care plans and text messages will be created for 10 common CPS. Investigators will use a quasi-experimental design with pre and post testing of the same cohort, before and after delivery of care plan and accompanying messages. To evaluate the impact of the digital care plans, Investigators will compare assessments of the same cohorts at 3 and 6 months time points.

Study Type

INTERVENTIONAL

Allocation

Purpose

SUPPORTIVE_CARE

Masking

NONE

Enrollment

164

Conditions

Genetic Predisposition

Interventions

Digital Care PlansOTHER

Investigators will develop digital care plans for 10 common Cancer Predisposition Syndromes for patients diagnosed within 3 years.

Eligibility

Sex: ALLMin age: 12 Years

Medical Language ↔ Plain English

Inclusion Criteria: Parents 1. Parent or Legal Guardian of a patient with a known cancer predisposition syndrome diagnosed within the last 5 years 2. Received care at the Cancer Predisposition clinic at the Children's Hospital of Philadelphia (CHOP), or other medical institutions (does not need to be receiving follow-up care at CHOP) 3. Appropriate to approach per oncology team/cancer predisposition team 4. No cognitive impairment limiting ability to complete measures 5. Ability to read and speak English fluently Adolescent/Young Adult (AYA) probands 1. Child proband with a known cancer predisposition syndrome diagnosed within the last 5 years 2. Ages 12+ 3. Received care at the Cancer Predisposition clinic at the Children's Hospital of Philadelphia (CHOP), or other medical institutions (does not need to be receiving follow-up care at CHOP) 4. Appropriate to approach per oncology team/cancer predisposition team 5. No cognitive impairment limiting ability to complete measures 6. Ability to read and speak English fluently Exclusion Criteria: * Not meeting any of inclusion criteria

Locations (1)

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, United States

Outcomes

Primary Outcomes

Change in Knowledge Score of participating family members

Change in knowledge score for participating family members will be measured by participants completion of electronic questionnaires administered via REDCap. The change in the mean and standard deviation will be assessed at 3 months and 6 months. A higher score indicates greater knowledge of care plans content.

Time frame: 3 months and 6 months after receipt of digital care plan

Secondary Outcomes

Acceptability of use of digital care plans for CPS for participating family members

Acceptability will be measured by participants completion of electronic questionnaires administered via REDCap. Acceptability ratings will be documented with standard descriptive statistics such as means and frequencies. A higher score indicates indicates higher satisfaction, perceived appropriateness, positive effect, demand, and potential for future use.

Time frame: 3 months after receipt of digital care plan

Feasibility of use of digital care plans for CPS for patients diagnosed within 5 years

Feasibility will be assessed with absence of technical difficulties allowing the Clinical Research Coordinator (CRC) to create care plan in under 15 minutes in a busy clinical setting.

Time frame: Up to 6 months after receipt of digital care plan

Satisfaction with decision to have germline testing

Satisfaction with decision to have germline testing will be measured by participants completion of electronic questionnaires administered via REDCap. The change in the mean and standard deviation will be assessed at 3 months and 6 months and compared to baseline. A higher score indicates greater satisfaction with decision to have child genetically tested.

Time frame: Up to 6 months after receipt of digital care plan

Change in cancer-related anxiety

Data from ClinicalTrials.gov

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