Improving Cancer Family Caregivers' Knowledge and Communication About Care Options

NCT ID: NCT02616107

Last Updated: 2017-03-07

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

COMPLETED

Clinical Phase

NA

Total Enrollment

35 participants

Study Classification

INTERVENTIONAL

Study Start Date

2014-07-31

Study Completion Date

2017-01-31

Brief Summary

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The purpose of this two-year mixed methods study is to develop and test an intervention to improve cancer family caregivers' knowledge of care options (curative, palliative, and hospice care) and goals of care communication as part of a self-management (SM) training program.

The two specific aims of this project are to:

1. Develop a psycho-educational intervention called Managing Cancer Care: A Caregiver's Guide (MCC-CG), for family caregivers of patients with breast cancer to increase knowledge of care options, goals of care communication, and other SM skills.
2. Evaluate the feasibility and preliminary efficacy of the MCC-CG in a pilot randomized controlled trial compared with an attention-control condition (symptom management education) on knowledge of care options, goals of care communication, and other key SM skills (engagement in SM, management of transitions and uncertainty, increasing self-efficacy, appropriate use of health care resources).

Detailed Description

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The investigators will address and accomplish aim 1 by taking the following steps:

1. Conduct development focus groups with family caregivers of women with breast cancer.
2. Develop the MCC-CG intervention prototype.
3. Conduct feedback focus groups with family caregivers to evaluate the prototype.
4. Revise the MCC-CG.

To address and accomplish aim 2, the investigators will do the following:

1. Conduct a pilot RCT to evaluate the feasibility of recruiting and retaining a sample of family caregivers.
2. Assess the initial efficacy of the MCC-CG to improve knowledge of care options, goals of care communication, and other SM skills.
3. Estimate power and determine the best measures for a large RCT testing the MCC-PT and MCC-CG together.

Conditions

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Family Caregivers

Study Design

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Allocation Method

RANDOMIZED

Intervention Model

PARALLEL

Primary Study Purpose

SUPPORTIVE_CARE

Blinding Strategy

SINGLE

Participants

Study Groups

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Intervention

Family caregivers of breast cancer patients who consent to participate in the study have a 50/50 chance of being randomized to the intervention group and will receive the booklet, Managing Cancer Care: A Caregiver's Guide (MCC-CG) (N=18)

Group Type EXPERIMENTAL

Managing Cancer Care: A Caregiver's Guide

Intervention Type OTHER

MCC-CG is a set of 7 printed modules including information about caregiver-nominated SM topics, conversation starters to facilitate communication with patients and providers, and links to caregiver resources. The modules are as follows:

1. Becoming a Cancer Caregiver \[role, changes, challenges, adjusting, self-care\]
2. Basics of Cancer Caregiving \[physical, functional, emotional, social, \& spiritual support; treatment timeline worksheet\]
3. Caregiver's Role in Managing Patient Care \[who/what is involved; health care professionals worksheet\]
4. Managing Cancer Symptoms and Side Effects \[common symptoms/side effects; maintaining health; nutrition \& exercise; medication management worksheet\]
5. Care Options: \[information on curative, palliative and hospice care\]
6. Talking About Goals of Care \[information on goals of care conversations\]
7. Managing Transitions \[defining transitions, transition examples, helping yourself and patient to manage transitions; transitions worksheet\]

Control

Family caregivers of breast cancer patients who consent to participate in the study have a 50/50 chance of being randomized to the control group and will receive the Symptom Management Toolkit (N=17)

Group Type ACTIVE_COMPARATOR

Symptom Management Toolkit

Intervention Type OTHER

Along with an overview of symptom management, the Toolkit provides concise information on commonly experienced symptoms, including fatigue, alopecia, cognitive dysfunction, nausea and vomiting, and sleep problems, among others. Each chapter uses a question-and-answer format to cover the topics of who is most likely to experience the symptom, when and why the symptom may occur, how the symptom can be managed, and when to call a provider. Drs. Schulman-Green and McCorkle have previously tested the Symptom Toolkit in an attention-control group.

Interventions

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Managing Cancer Care: A Caregiver's Guide

MCC-CG is a set of 7 printed modules including information about caregiver-nominated SM topics, conversation starters to facilitate communication with patients and providers, and links to caregiver resources. The modules are as follows:

1. Becoming a Cancer Caregiver \[role, changes, challenges, adjusting, self-care\]
2. Basics of Cancer Caregiving \[physical, functional, emotional, social, \& spiritual support; treatment timeline worksheet\]
3. Caregiver's Role in Managing Patient Care \[who/what is involved; health care professionals worksheet\]
4. Managing Cancer Symptoms and Side Effects \[common symptoms/side effects; maintaining health; nutrition \& exercise; medication management worksheet\]
5. Care Options: \[information on curative, palliative and hospice care\]
6. Talking About Goals of Care \[information on goals of care conversations\]
7. Managing Transitions \[defining transitions, transition examples, helping yourself and patient to manage transitions; transitions worksheet\]

Intervention Type OTHER

Symptom Management Toolkit

Along with an overview of symptom management, the Toolkit provides concise information on commonly experienced symptoms, including fatigue, alopecia, cognitive dysfunction, nausea and vomiting, and sleep problems, among others. Each chapter uses a question-and-answer format to cover the topics of who is most likely to experience the symptom, when and why the symptom may occur, how the symptom can be managed, and when to call a provider. Drs. Schulman-Green and McCorkle have previously tested the Symptom Toolkit in an attention-control group.

Intervention Type OTHER

Other Intervention Names

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MCC-CG

Eligibility Criteria

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Inclusion Criteria

* A family member of an individual with any stage of breast cancer receiving curative, palliative, or hospice care
* Aged 18+
* English speaking
* Live in Connecticut
* The patient for whom the participant is a caregiver has a six-month prognosis
Minimum Eligible Age

18 Years

Maximum Eligible Age

110 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Icahn School of Medicine at Mount Sinai

OTHER

Sponsor Role collaborator

Yale University

OTHER

Sponsor Role lead

Responsible Party

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Dena-Schulman-Green

Research Scientist

Responsibility Role PRINCIPAL_INVESTIGATOR

Principal Investigators

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Dena J Schulman-Green, PhD

Role: PRINCIPAL_INVESTIGATOR

Yale School of Nursing

Locations

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Smilow Cancer Hospital

New Haven, Connecticut, United States

Site Status

Countries

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United States

References

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McCorkle R, Ercolano E, Lazenby M, Schulman-Green D, Schilling LS, Lorig K, Wagner EH. Self-management: Enabling and empowering patients living with cancer as a chronic illness. CA Cancer J Clin. 2011 Jan-Feb;61(1):50-62. doi: 10.3322/caac.20093. Epub 2011 Jan 4.

Reference Type BACKGROUND
PMID: 21205833 (View on PubMed)

Schulman-Green D, Ercolano E, Jeon S, Dixon J. Validation of the knowledge of care options instrument to measure knowledge of curative, palliative, and hospice care. J Palliat Med. 2012 Oct;15(10):1091-9. doi: 10.1089/jpm.2011.0514. Epub 2012 Jun 13.

Reference Type BACKGROUND
PMID: 22694739 (View on PubMed)

Schulman-Green D, Jaser S, Martin F, Alonzo A, Grey M, McCorkle R, Redeker NS, Reynolds N, Whittemore R. Processes of self-management in chronic illness. J Nurs Scholarsh. 2012 Jun;44(2):136-44. doi: 10.1111/j.1547-5069.2012.01444.x. Epub 2012 May 2.

Reference Type BACKGROUND
PMID: 22551013 (View on PubMed)

Grey M, Schulman-Green D, Knafl K, Reynolds NR. A revised Self- and Family Management Framework. Nurs Outlook. 2015 Mar-Apr;63(2):162-70. doi: 10.1016/j.outlook.2014.10.003. Epub 2014 Oct 15.

Reference Type BACKGROUND
PMID: 25771190 (View on PubMed)

Schulman-Green D, Jeon S. Printed guide improves knowledge of curative, palliative, and hospice care among women with metastatic breast cancer. Support Care Cancer. 2013 Oct;21(10):2651-3. doi: 10.1007/s00520-013-1864-x. Epub 2013 Jun 1. No abstract available.

Reference Type BACKGROUND
PMID: 23729228 (View on PubMed)

Schulman-Green D, Jeon S. Managing Cancer Care: a psycho-educational intervention to improve knowledge of care options and breast cancer self-management. Psychooncology. 2017 Feb;26(2):173-181. doi: 10.1002/pon.4013. Epub 2015 Nov 4.

Reference Type BACKGROUND
PMID: 26537980 (View on PubMed)

Hinchey J, Goldberg J, Linsky S, Linsky R, Jeon S, Schulman-Green D. Knowledge of Cancer Stage among Women with Nonmetastatic Breast Cancer. J Palliat Med. 2016 Mar;19(3):314-7. doi: 10.1089/jpm.2015.0133. Epub 2016 Feb 8.

Reference Type BACKGROUND
PMID: 26855201 (View on PubMed)

Schulman-Green D, Linsky S, Blatt L, Jeuland J, Kapo J, Jeon S. Improving Breast Cancer Family Caregivers' Palliative Care Literacy: A Pilot Randomized Trial. J Fam Nurs. 2023 Feb;29(1):99-114. doi: 10.1177/10748407221099541. Epub 2022 Jun 7.

Reference Type DERIVED
PMID: 35670155 (View on PubMed)

Other Identifiers

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1407014318

Identifier Type: -

Identifier Source: org_study_id

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