Improving End of Life Care in Head and Neck Cancer

Study Overview
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Brief Summary
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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.

Official Title
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Improving End of Life Care in Head and Neck Cancer

Conditions
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The Families or Next of Kin of Patients Treated at MSKCC for Non-cutaneous Squamous Cell Carcinomas of the, Upper Aerodigestive Tract

Intervention / Treatment
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* Behavioral: The The Family Assessment of Treatment at the End of life (FATE ) survey


Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 21 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| families or next-of-kin of deceased patients<br>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<br>* 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.<br>|

What is the study measuring?
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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 | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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12-136