ACCESS (Access for Cancer Caregivers for Education and Support for Shared Decision Making)

NCT02929108 | Completed Results

• 2 other identifiers: 20062705R01CA203999
• Study Type: interventional
• Target: 489
• Locations: 1 country
• Sites: 3

Brief Summary

The project will test the effect of educating and supporting family caregivers of hospice cancer patients on their active participation in shared decision making in the plan of care for their patients.

Conditions

Cancer; Pain

Keywords

hospice; caregiver

Outcome Measures

Primary Outcomes (1)

• Change in Generalized Anxiety Disorder- 7

  A screening tool to quantify participant's anxiety. The scale ranges from 0-21. A higher score indicates a higher level of anxiety.

  Upon enrollment, 14 days, 28 days, 60 days and 90 days

Secondary Outcomes (8)

• Change in Family Pain Questionnaire - Experience

  Upon enrollment and 28 days

• Change in Family Pain Questionnaire - Knowledge

  Upon enrollment and 28 days

• Change in Caregiver Quality of Life

  Upon enrollment, 14 days, 28 days, 60 days and 90 days

• Perceived Involvement of Care Scale

  Upon enrollment, 14 days, 28 days, and 90 days

• Public Health Questionnaire (PHQ 9)

  Upon enrollment, 14 days, 28 days, 60 days, and 90 days

Study Arms (3)

Enhanced Usual Care

NO INTERVENTION

The family caregivers in his group will receive usual hospice care which has been enhanced as the staff have been trained in shared decision making.

Facebook

EXPERIMENTAL

The family caregivers in this group only participates in the Facebook groups, not in the shared decision making

Behavioral: Facebook

ACCESS

EXPERIMENTAL

The family caregivers in this group participates in Facebook and web conferencing for shared decision making

Behavioral: Facebook; Behavioral: ACCESS

Interventions

Facebook BEHAVIORAL

Participants will be enrolled in a Secret Facebook group for social support and education

ACCESS; Facebook

ACCESS BEHAVIORAL

Intervention will have two components. 1. Participants will be enrolled in a Secret Facebook group for social support and education 2. Participants will use web conferencing technology to participate in their interdisciplinary team meeting

ACCESS

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)

You may qualify if:

• Is caregiving for a patient enrolled in the participating hospice
• Over 18 years of age
• Is caregiving for a patient with a diagnosis of cancer
• Willing to have a Facebook account and post at least 1x per week if in intervention group

You may not qualify if:

• No one under the age of 18
• Is caregiving for a patient enrolled in hospice agencies other than those participating in the study
• Unwilling to participate in social media
• Is caregiving for a patient with a diagnosis other than cancer
• Is caregiving for a patient with a life expectancy of less than 2 weeks

Sponsors & Collaborators

• Washington University School of Medicine: lead
• National Cancer Institute (NCI): collaborator

Study Sites (3)

Hospice Compassus

Columbia, Missouri, 64503, United States

Location

CrossRoads Hospice

Kansas City, Missouri, 64055, United States

Location

Barnes Jewish Hospice

St Louis, Missouri, 63114, United States

Location

Related Publications (3)

• Parker Oliver D, Demiris G, Washington KT, Pitzer K, Ulrich C. The Effect of Digital Literacy on Participation in Social Media Clinical Trials in Cancer: Tailoring an Informed Consent Process. Telemed J E Health. 2022 Mar 21;28(11):1682-9. doi: 10.1089/tmj.2021.0555. Online ahead of print.

  PMID: 35324322 DERIVED

• Oliver DP, Washington KT, Pitzer K, Popejoy L, White P, Wallace AS, Grimsley A, Demiris G. Mixed methods analysis of hospice staff perceptions and shared decision making practices in hospice. Support Care Cancer. 2022 Mar;30(3):2679-2691. doi: 10.1007/s00520-021-06631-w. Epub 2021 Nov 25.

  PMID: 34825279 DERIVED

• Starr LT, Bullock K, Washington K, Aryal S, Parker Oliver D, Demiris G. Anxiety, Depression, Quality of Life, Caregiver Burden, and Perceptions of Caregiver-Centered Communication among Black and White Hospice Family Caregivers. J Palliat Med. 2022 Apr;25(4):596-605. doi: 10.1089/jpm.2021.0302. Epub 2021 Nov 18.

  PMID: 34793244 DERIVED

Related Links

• Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine

MeSH Terms

Conditions

Neoplasms; Pain

Condition Hierarchy (Ancestors)

Neurologic Manifestations; Signs and Symptoms; Pathological Conditions, Signs and Symptoms

Results Point of Contact

• Title: Debra Oliver, Ph.D.
• Organization: Washington University School of Medicine

oliverd@wustl.edu

314-747-5361

Study Officials

• Debra Oliver, PhD

  Washington University School of Medicine

  PRINCIPAL INVESTIGATOR

Publication Agreements

• PI is Sponsor Employee: Yes

Study Design

• Study Type: interventional
• Phase: not applicable
• Allocation: RANDOMIZED
• Masking: NONE
• Purpose: SUPPORTIVE CARE
• Intervention Model: PARALLEL
• Sponsor Type: OTHER
• Responsible Party: PRINCIPAL INVESTIGATOR
• PI Title: Professor

Model Details: A pragmatic cluster randomized controlled trial will randomly assign hospice sites (cluster) to 2 of 3 groups: 1) Enhanced usual care 2) Enhanced usual care and private Facebook group 3) Enhanced usual care, private Facebook group, and ACCESS. Each hospice site (cluster) will go through 2 arms of the intervention but the family caregiver participants will only complete one arm.

Study Record Dates

• First Submitted: October 6, 2016
• First Posted: October 10, 2016
• Study Start: April 1, 2017
• Primary Completion: November 22, 2021
• Study Completion: November 22, 2021
• Last Updated: April 20, 2023
• Results First Posted: April 20, 2023

Record last verified: 2023-03

Data Sharing

• IPD Sharing: Will not share

Locations

US (3)