Improving End of Life Care in Head and Neck Cancer

The purpose of this study is to improve the quality of care provided for head and neck cancer patients. By better understanding the end of life experiences of dying patients and their families, the investigators hope to better anticipate and improve upon the experiences of future patients and their families.

Study Overview

• Status: Terminated
• Conditions: The Families or Next of Kin of Patients Treated at MSKCC for Non-cutaneous Squamous Cell Carcinomas of the; Upper Aerodigestive Tract
• Intervention / Treatment: Behavioral: The The Family Assessment of Treatment at the End of life (FATE ) survey

• Study Type: Observational
• Enrollment (Actual): 2

Contacts and Locations

Study Locations

• United States
  • New York
    • New York, New York, United States, 10065-0009
      • Memorial Sloan Kettering Cancer Center

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: 21 years and older (Adult, Older Adult)
• Accepts Healthy Volunteers: Yes
• Genders Eligible for Study: All

• Sampling Method: Non-Probability Sample

Study Population

Deceased Head and Neck Surgery patients will be queried from Dataline and screened for eligibility. Interviews with family members and next of kin of deceased patients treated at MSKCC for noncutaneous squamous cell carcinomas of the upper aerodigestive tract will be conducted via telephone, employing the survey instruments.

Description

Inclusion Criteria:

• Head and neck cancer patients who received their treatment at MSKCC who have died of noncutaneous squamous cell carcinomas of the upper aerodigestive tract and for whom family / next of kin contact information is available.
• Time of patient death must have been at least 6 months ago and no more than 4 years ago
• Patient age at time of death must be over 21 years of age.
• Those interviewed must be English-fluent.

Exclusion Criteria:

• Non-English speaking interviewees
• Next-of-kin who reported being unfamiliar with care received during the last month of life
• Next-of-kin who did not identify themselves as one of the patient's primary social supports during the last month of life
• Next-of-kin who were not physically present with the deceased at least once during the last week of his/her life
• Next-of-kin under age 21

Study Plan

How is the study designed?

Number of groups / cohorts

1

Cohorts and Interventions

Group / Cohort

Intervention / Treatment

families or next-of-kin of deceased patients; The families of deceased patients treated at MSKCC for non-cutaneous squamous cell carcinomas of the upper aerodigestive tract for whom contact information is available will be recruited by mail and by phone.

Behavioral: The The Family Assessment of Treatment at the End of life (FATE ) survey; Study candidates will be contacted by mail with an initial contact letter with information explaining the study, and then will receive a follow-up phone call to discuss their participation in the study no later than 1 month following the posting of the initial contact letter. If a family member or next-of-kin chooses to participate, verbal informed consent will be obtained over the phone and a one-time telephone interview will be conducted.

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
quality of care received by patients	To determine the perception of the family members of the quality of care received by patients with aerodigestive mucosal squamous cell carcinoma of the head and neck at the end of their lives. A survey will be administered to the families and next-of-kin of deceased patients. A recently validated survey instrument, the Family Assessment of Treatment at the End of life (FATE), is designed to assess treatment at the end of life based upon the responses of family members of the deceased (Finlay, Shreve et al. 2008).	1 year

Secondary Outcome Measures

Outcome Measure	Measure Description	Time Frame
quality of death outcomes	To identify specific risk factors or interventions that might predict certain quality of death outcomes. A survey will be administered to the families and next-of-kin of deceased patients.A recently validated survey instrument, the Family Assessment of Treatment at the End of life (FATE), is designed to assess treatment at the end of life based upon the responses of family members of the deceased (Finlay, Shreve et al. 2008).	1 year
awareness among caregivers	To raise awareness among caregivers of the perspectives of family members of deceased patients, and of risk factors that might predict patient quality of death. This survey will be administered to the families and next-of-kin of deceased patients. A recently validated survey instrument, the Family Assessment of Treatment at the End of life (FATE), is designed to assess treatment at the end of life based upon the responses of family members of the deceased (Finlay, Shreve et al. 2008).	1 year

Collaborators and Investigators

• Sponsor: Memorial Sloan Kettering Cancer Center

Publications and helpful links

Helpful Links

• Memorial Sloan Kettering Cancer Center

Study record dates

Study Major Dates

• Study Start: June 1, 2012
• Primary Completion (Actual): June 1, 2014
• Study Completion (Actual): June 1, 2014

Study Registration Dates

• First Submitted: June 29, 2012
• First Submitted That Met QC Criteria: July 3, 2012
• First Posted (Estimate): July 4, 2012

Study Record Updates

• Last Update Posted (Estimate): March 6, 2015
• Last Update Submitted That Met QC Criteria: March 4, 2015
• Last Verified: March 1, 2015

More Information

Terms related to this study

• Keywords: 12-136
• Additional Relevant MeSH Terms: Pathologic Processes; Neoplasms; Neoplasms by Site; Head and Neck Neoplasms; Death
• Other Study ID Numbers: 12-136