Literature DB >> 35876450

Voicing their choices: Advance care planning with adolescents and young adults with cancer and other serious conditions.

Lori Wiener1, Sima Bedoya1, Haven Battles1, Leonard Sender2, Keri Zabokrtsky2, Kristine A Donovan3, Lora M A Thompson3, Barbara B Lubrano di Ciccone3, Margarita Bobonis Babilonia3, Karen Fasciano4, Paige Malinowski4, Maureen Lyon5, Jessica Thompkins5, Corey Heath6, Denise Velazquez7, Karen Long-Traynor7, Abigail Fry1, Maryland Pao8.   

Abstract

OBJECTIVES: To determine whether engaging in advance care planning (ACP) using a formal tool, Voicing My CHOiCES (VMC), would alleviate adolescent and young adults (AYAs) anxiety surrounding ACP and increase social support and communication about end-of-life care preferences with family members and health care providers (HCPs).
METHODS: A total of 149 AYAs aged 18-39 years receiving cancer-directed therapy or treatment for another chronic medical illness were enrolled at seven US sites. Baseline data included prior ACP communication with family members and HCPs and measures of generalized anxiety, ACP anxiety, and social support. Participants critically reviewed each page of VMC and then completed three pages of the document. ACP anxiety was measured again immediately after the completion of VMC pages. One month later, participants repeated anxiety and social support measures and were asked if they shared what they had completed in VMC with a family member or HCP.
RESULTS: At baseline, 50.3% of participants reported that they previously had a conversation about EoL preferences with a family member; 19.5% with an HCP. One month later, 65.1% had subsequently shared what they wrote in VMC with a family member; 8.9% shared with an HCP. Most (88.6%) reported they would not have had this conversation if not participating in the study. No significant changes occurred in social support. There was an immediate drop in anxiety about EoL planning after reviewing VMC which persisted at 1 month. Generalized anxiety was also significantly lower 1 month after reviewing VMC. SIGNIFICANCE OF
RESULTS: Having a document specifically created for AYAs to guide ACP planning can decrease anxiety and increase communication with family members but not necessarily with HCPs. Future research should examine ways ACP can be introduced more consistently to this young population to allow their preferences for care to be heard, respected, and honored, particularly by their healthcare providers.

Entities:  

Keywords:  Adolescents and young adults; Advance care planning; Communication; End of life; Voicing my choices

Mesh:

Year:  2022        PMID: 35876450      PMCID: PMC9315053          DOI: 10.1017/S1478951521001462

Source DB:  PubMed          Journal:  Palliat Support Care        ISSN: 1478-9515


  74 in total

1.  Mind the child: using interactive technology to improve child involvement in decision making about life-limiting illness.

Authors:  Raymond C Barfield; Debra Brandon; Julie Thompson; Nichol Harris; Michael Schmidt; Sharron Docherty
Journal:  Am J Bioeth       Date:  2010-04       Impact factor: 11.229

Review 2.  Palliative Care as a Standard of Care in Pediatric Oncology.

Authors:  Meaghann S Weaver; Katherine E Heinze; Katherine P Kelly; Lori Wiener; Robert L Casey; Cynthia J Bell; Joanne Wolfe; Amy M Garee; Anne Watson; Pamela S Hinds
Journal:  Pediatr Blood Cancer       Date:  2015-12       Impact factor: 3.167

Review 3.  Breast cancer in adolescents and young adults: a review with a focus on biology.

Authors:  Jill R Tichy; Elgene Lim; Carey K Anders
Journal:  J Natl Compr Canc Netw       Date:  2013-09-01       Impact factor: 11.908

4.  Regret and unfinished business in parents bereaved by cancer: A mixed methods study.

Authors:  Wendy G Lichtenthal; Kailey E Roberts; Corinne Catarozoli; Elizabeth Schofield; Jason M Holland; Justin J Fogarty; Taylor C Coats; Lamia P Barakat; Justin N Baker; Tara M Brinkman; Robert A Neimeyer; Holly G Prigerson; Talia Zaider; William Breitbart; Lori Wiener
Journal:  Palliat Med       Date:  2020-02-05       Impact factor: 4.762

5.  A brief measure for assessing generalized anxiety disorder: the GAD-7.

Authors:  Robert L Spitzer; Kurt Kroenke; Janet B W Williams; Bernd Löwe
Journal:  Arch Intern Med       Date:  2006-05-22

6.  Attitudes of adolescent cancer survivors toward end-of-life decisions for minors.

Authors:  Geert Pousset; Johan Bilsen; Joke De Wilde; Yves Benoit; Joris Verlooy; An Bomans; Luc Deliens; Freddy Mortier
Journal:  Pediatrics       Date:  2009-12       Impact factor: 7.124

7.  Weaver et al's Response to Morrison: Advance Directives/Care Planning: Clear, Simple, and Wrong (DOI: 10.1089/jpm.2020.0272).

Authors:  Meaghann S Weaver; Lori Wiener; Shana Jacobs; Cynthia J Bell; Vanessa Madrigal; Kim Mooney-Doyle; Maureen E Lyon
Journal:  J Palliat Med       Date:  2020-08-31       Impact factor: 2.947

8.  Palliative care for adolescents and young adults with cancer.

Authors:  Abby R Rosenberg; Joanne Wolfe
Journal:  Clin Oncol Adolesc Young Adults       Date:  2013-03-24

9.  Connecting with healthcare providers at diagnosis: adolescent/young adult cancer survivors' perspectives.

Authors:  Celeste R Phillips; Joan E Haase; Marion E Broome; Janet S Carpenter; Richard M Frankel
Journal:  Int J Qual Stud Health Well-being       Date:  2017-12

10.  Actual and Missed Opportunities for End-of-Life Care Discussions With Oncology Patients: A Qualitative Study.

Authors:  Kristin E Knutzen; Olivia A Sacks; Olivia C Brody-Bizar; Genevra F Murray; Raina H Jain; Lindsay A Holdcroft; Shama S Alam; Matthew A Liu; Kathryn I Pollak; James A Tulsky; Amber E Barnato
Journal:  JAMA Netw Open       Date:  2021-06-01
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