Improving End of Life Care in Head and Neck Cancer

This study has been terminated.
(Lack of accrual)
Sponsor:
Information provided by (Responsible Party):
Memorial Sloan-Kettering Cancer Center
ClinicalTrials.gov Identifier:
NCT01632969
First received: June 29, 2012
Last updated: December 18, 2013
Last verified: December 2013
  Purpose

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.


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

Study Type: Observational
Study Design: Observational Model: Family-Based
Time Perspective: Retrospective
Official Title: Improving End of Life Care in Head and Neck Cancer

Resource links provided by NLM:


Further study details as provided by Memorial Sloan-Kettering Cancer Center:

Primary Outcome Measures:
  • quality of care received by patients [ Time Frame: 1 year ] [ Designated as safety issue: No ]
    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).


Secondary Outcome Measures:
  • quality of death outcomes [ Time Frame: 1 year ] [ Designated as safety issue: No ]
    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).

  • awareness among caregivers [ Time Frame: 1 year ] [ Designated as safety issue: No ]
    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).


Enrollment: 2
Study Start Date: June 2012
Estimated Study Completion Date: June 2014
Estimated Primary Completion Date: June 2014 (Final data collection date for primary outcome measure)
Groups/Cohorts Assigned Interventions
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.

  Eligibility

Ages Eligible for Study:   21 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   Yes
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.

Criteria

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
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its ClinicalTrials.gov identifier: NCT01632969

Locations
United States, New York
Memorial Sloan-Kettering Cancer Center
New York, New York, United States, 10065-0009
Sponsors and Collaborators
Memorial Sloan-Kettering Cancer Center
Investigators
Principal Investigator: Snehal Patel, MD Memorial Sloan-Kettering Cancer Center
  More Information

Additional Information:
No publications provided

Responsible Party: Memorial Sloan-Kettering Cancer Center
ClinicalTrials.gov Identifier: NCT01632969     History of Changes
Other Study ID Numbers: 12-136
Study First Received: June 29, 2012
Last Updated: December 18, 2013
Health Authority: United States: Institutional Review Board

Keywords provided by Memorial Sloan-Kettering Cancer Center:
12-136

Additional relevant MeSH terms:
Carcinoma
Carcinoma, Squamous Cell
Head and Neck Neoplasms
Neoplasms, Glandular and Epithelial
Neoplasms by Histologic Type
Neoplasms
Neoplasms, Squamous Cell
Neoplasms by Site

ClinicalTrials.gov processed this record on July 22, 2014