An Exploratory Study of the Use of Five Wishes as a Tool for Advanced Care Planning in Young Adults With Metastatic, Recurrent, or Progressive Cancer or HIV Infection
Condition: Neoplasms
MeSH terms: HIV Infections
Study type: Observational

Summary: 
      Background:

        -  Few resources exist for helping adolescents and young adults with cancer or HIV disease
           understand their changing physical, emotional and social needs when treatment is no
           longer effective.

        -  An advance directive document called Five Wishes has had particular success with the
           adult population because of the consideration of personal, emotional and spiritual needs
           in addition to medical and legal concerns.

      Objectives:

      -To learn which questions in Five Wishes are useful for adolescents and young adults and to
      then create a new document that reflects the issues they feel are most appropriate for people
      with cancer or HIV disease.

      Eligibility:

      -Adolescents and young adults 16 to 30 years of age with advanced cancer or HIV disease
      acquired perinatally or early in life and enrolled in an active NIH treatment protocol.

      Design:

        -  Stage 1: Participants go through each question in Five Wishes and respond to whether
           they feel the questions are useful.

        -  Stage 2: Participants are asked to compare each question from Five Wishes to a newly
           developed document based on the feedback received during first stage of the study.

        -  Participants are enrolled for either Stage 1 or Stage 2 depending on the date they enter
           the study.
    

Detailed description: 
      Background:

        -  Discussing end of life (EoL) care with adolescents and young adults can be one of the
           most difficult aspects of living with a life threatening disease.

        -  Few established resources exist to aid this population in accepting and understanding
           their changing physical, emotional and social needs when treatment is no longer
           effective. Standards in palliative care suggest that discussion of end of life issues be
           routine and commence soon after diagnosis.

        -  While many helpful documents exist to facilitate such conversations with adults, few
           address the particular concerns and needs of adolescents and young adults.

        -  One advance directive (AD) document, Five Wishes, has had particular success with the
           adult population because of the consideration of 'personal, emotional and spiritual
           needs' in addition to medical and legal concerns.

      Objective:

        -  To determine if adolescents and young adults living with advanced cancer or HIV disease
           feel that an AD document, such as Five Wishes, is useful in addressing end of life
           issues.

        -  To develop and perform a pilot evaluation of a modified age-appropriate advance care
           planning tool for young adults and adolescents based on Five Wishes that reflects the
           participants opinions on which questions they feel are most useful and additional items
           that might be helpful.

      Eligibility:

        -  Age: 16 to 30 years

        -  Known metastatic, progressive or recurrent cancer or HIV disease acquired perinatally or
           early in life and enrolled in an active NIH treatment protocol.

      Design:

      -A descriptive study of attitudes of young adults (16-30 years) with cancer or HIV disease
      concerning the questions contained in the AD document Five Wishes as well as a comparison
      between Five Wishes and a modified version of that document.
    

Time perspective: Prospective
Keywords: End-of-Life; Advance Directive; Pediatric Cancer; Adolescents; Young Adults