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Current measures of distress may not account for what's most important in existential care interventions: Results of the outlook trial

Published online by Cambridge University Press:  05 November 2020

Karen E. Steinhauser Open the ORCID record for Karen E. Steinhauser [Opens in a new window] ,
Karen M. Stechuchak ,
Katherine Ramos ,
Joseph Winger Open the ORCID record for Joseph Winger [Opens in a new window] ,
James A. Tulsky  and
Maren K. Olsen
Karen E. Steinhauser*
Affiliation:
Center of Innovation to Accelerate Discovery and Practice Transformation (ADAPT), Durham, VA Department of Population Health Sciences, Duke University, Durham, NC Department of Medicine, Duke University, Durham, NC Division of General Internal Medicine, Division of Palliative Care, Duke University, Durham, NC Center for the Study of Aging and Human Development, Duke University, Durham, NC
Karen M. Stechuchak
Affiliation:
Center of Innovation to Accelerate Discovery and Practice Transformation (ADAPT), Durham, VA
Katherine Ramos
Affiliation:
Center of Innovation to Accelerate Discovery and Practice Transformation (ADAPT), Durham, VA Department of Psychiatry and Behavioral Sciences, Duke University, Durham, NC
Joseph Winger
Affiliation:
Department of Psychiatry and Behavioral Sciences, Duke University, Durham, NC
James A. Tulsky
Affiliation:
Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, Boston, MA Division of Palliative Medicine, Department of Medicine, Brigham and Women's Hospital, Boston, MA
Maren K. Olsen
Affiliation:
Center of Innovation to Accelerate Discovery and Practice Transformation (ADAPT), Durham, VA Division of General Internal Medicine, Division of Palliative Care, Duke University, Durham, NC Department of Biostatistics and Bioinformatics, Duke University, Durham, NC
*
Author Correspondence: Karen E. Steinhauser, Departments of Population Health Sciences and Medicine, 200 Morris Street, 3320 Durham, NC 27701, USA. E-mail: [email protected]
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Abstract

Objective

Compare the efficacy of two interventions addressing emotional and existential well-being in early life-limiting illness.

Method

Primary trial analysis (n = 135) included patients with advanced cancer, congestive heart failure, or end-stage renal disease; Arm 1 received the Outlook intervention, addressing issues of life completion and preparation, and Arm 2 received relaxation meditation (RM). Primary outcomes at five weeks (primary endpoint) and seven weeks (secondary): completion and preparation (QUAL-E); secondary outcomes: anxiety (POMS) quality of life (FACT-G) and spiritual well-being (FACIT-Sp) subscales of faith, meaning, and peace.

Results

Average age was 62; 56% were post-high school-educated, 54% were married, 52% white, 44% female, and 70% had a cancer diagnosis. At baseline, participants demonstrated low levels of anxiety (<5 on POMS subscale) and depression (<10 on CESD) relative to population norms. Results of the primary analysis revealed no significant differences in mean Preparation by treatment arm at five weeks (14.4 Outlook vs. 14.8 RM; between-group difference −0.4 [95% CI, −1.6, 0.8], p = 0.49) or seven weeks (15.2 vs.15.4; between-group difference −0.2 [95% CI, −1.5, 1.0], p = 0.73). There were also no significant differences in mean Life Completion by treatment arm between five weeks (26.6 Outlook vs. 26.3 RM; between-group difference 0.2 [95% CI, −1.2, 1.7], p = 0.76) or seven weeks (26.5 vs. 27.5; between-group difference −1.0 [95% CI, −2.7, 0.7], p = 0.23). Compared to RM, Outlook participants did not have significant differences over time in the secondary outcomes of overall quality of life, anxiety, depression, FACT-G subscales, and FACIT-Sp subscales.

Discussion

In early-stage life-limiting illness, Outlook did not demonstrate a significant difference in primary or secondary outcomes relative to RM. Results underscore the importance of pre-screening for distress. Qualitatively, Outlook participants were able to express suppressed emotions, place illness context, reflect on adaptations, and strengthen identity. Screening for distress and identifying specified measures of distress, beyond anxiety and depression, is essential in our ability to adequately assess the multi-dimensional mechanisms that decrease existential suffering.

Keywords

Existential needsRandomized trialSpiritual care
Type
Original Article
Information
Palliative & Supportive Care , Volume 18 , Issue 6 , December 2020 , pp. 648 - 657
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Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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References

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