Background:
Discussing end-of-life (EoL) care is very challenging for young adults (YA) living with a life-threatening disease.
While many helpful documents exist to facilitate EoL conversations with adults, few resources exist to aid YA in understanding and accepting their changing physical, emotional and social needs when treatment is no longer effective.
Between 2007-2011, the Pediatric Oncology Branch (07-C-0085) explored the helpfulness of Five Wishes with adolescents and young adults living with HIV or advanced cancer. This research led to the development of a new advance care planning (ACP) guide, Voicing My CHOiCES (VMC). However, Voicing My CHOiCES has not been empirically examined in its completed form.
Objectives:
To determine the perceived helpfulness of VMC.
To determine whether engaging in advanced care planning using VMC is associated with reduced anxiety, improved social support, increased acceptance of illness, and/or improved communication about ACP with family, friends, and/or health care providers.
To assess the helpfulness of the changes made to the original VMC as compared to the revised VMC document.
Eligibility:
Patient Participants:
Age: 18 through 39 years
Known cancer or other chronic illness and enrolled on an NIH protocol or treated at one of the participating sites.
No prior experience using Voicing My CHOiCES
Participants enrolled to assess the helpfulness of changes made to original VMC must be English speaking.
Patients and family/friend and health care providers must be English or Spanish speaking.
Design:
Each subject will complete a baseline assessment of their anxiety pertaining to advance care planning, quality of social support, acceptance of illness, and quality of communication with family, friends and health care providers. They will be asked to review the advance care planning document, Voicing My CHOiCES , and to comment on each section as to whether it can provide an opportunity to address ACP needs for themselves and for other YA their age living with a serious illness. They will also assess whether revisions are needed to the document.
To obtain the perspectives of different YA, the initial study arm included 200 participants, 27 YA who were living independently, 42 YA who have a child(ren) of their own, and 81 YA who neither lived independently or had child(ren). In addition, up to 50 family/friends and health care providers of the participants participated in the follow up assessment. Arm 2 will include up to 80 participants recruited, at the Clinical Center, The Johns Hopkins Hospital, and Rhode Island Hospital (Lifespan) to compare the original Voicing My CHOiCES to the revised document. A total of up to 280 individuals may participate in this study.
A 1-month pre-post design will be used to assess the utility of the document, anxiety, quality of social support, acceptance of illness, communication about EoL planning, and whether the patient participant has shared any of the work completed in the document with a family member, friend, or health care provider.
If the participant had shared the ACP preferences that were documented in Voicing My CHOiCES with a family member or friend, and had consented for us to contact that person, we will obtain the family member or friend s consent and complete a brief interview assessing the helpfulness and limitations of Voicing My CHOiCES for ACP. If the participant had shared the ACP preferences that were documented in Voicing My CHOiCES with their health care provider and had consented for us to talk with that health care provider, a brief interview assessing the helpfulness and limitations of Voicing My CHOiCES for end-of-life planning and whether any changes in the participants health care was made in response to Voicing My CHOiCES , will be documented.
