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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: karen.steinhauser@duke.edu
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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

REFERENCES

Bailey, DE Jr., Steinhauser, K, Hendrix, C, et al. (2011) Pairing self-management with palliative care: Intervening in life-limiting illness. Journal of Nursing and Healthcare of Chronic Illness 3(1), 1–3. doi:10.1111/j.1752-9824.2011.01083.x.CrossRefGoogle ScholarPubMed
Breitbart, W (2002) Spirituality and meaning in supportive care: Spirituality- and meaning-centered group psychotherapy interventions in advanced cancer. Support Care Cancer 10(4), 272–280. doi:10.1007/s005200100289.CrossRefGoogle ScholarPubMed
Breitbart, W, Rosenfeld, B, Gibson, C, et al. (2010) Meaning-centered group psychotherapy for patients with advanced cancer: A pilot randomized controlled trial. Psycho-Oncology 19(1), 21–28. doi:10.1002/pon.1556.CrossRefGoogle ScholarPubMed
Breitbart, W, Poppito, S, Rosenfeld, B, et al. (2012) Pilot randomized controlled trial of individual meaning-centered psychotherapy for patients with advanced cancer. Journal of Clinical Oncology 30(12), 1304–1309. doi:10.1200/JCO.2011.36.2517.CrossRefGoogle ScholarPubMed
Breitbart, W, Rosenfeld, B, Pessin, H, et al. (2015) Meaning-centered group psychotherapy: An effective intervention for improving psychological well-being in patients with advanced cancer. Journal of Clinical Oncology 33(7), 749–754. doi:10.1200/JCO.2014.57.2198.CrossRefGoogle ScholarPubMed
Breitbart, W, Pessin, H, Rosenfeld, B, et al. (2018) Individual meaning-centered psychotherapy for the treatment of psychological and existential distress: A randomized controlled trial in patients with advanced cancer. Cancer 124(15), 3231–3239. doi:10.1002/cncr.31539.CrossRefGoogle ScholarPubMed
Cella, DF, Tulsky, DS, Gray, G, et al. (1993) The Functional Assessment of Cancer Therapy scale: Development and validation of the general measure. Journal of Clinical Oncology 11(3), 570–579.CrossRefGoogle ScholarPubMed
Chochinov, HM (2002) Dignity-conserving care – A new model for palliative care: Helping the patient feel valued. JAMA 287(17), 2253–2260.CrossRefGoogle Scholar
Chochinov, HM, Hack, T, Hassard, T, et al. (2005) Dignity therapy: A novel psychotherapeutic intervention for patients near the end of life. Journal of Clinical Oncology 23(24), 5520–5525.CrossRefGoogle ScholarPubMed
Chochinov, HM, Kristjanson, LJ, Breitbart, W, et al. (2011) Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: A randomised controlled trial. Lancet Oncology 12(8), 753–762. doi:10.1016/S1470-2045(11)70153-X.CrossRefGoogle ScholarPubMed
Frankl, V (1985) Man's Search for Meaning. New York: Simon and Schuster.Google Scholar
Fulton, JJ, Newins, AR, Porter, LS, et al. (2018) Psychotherapy targeting depression and anxiety for use in palliative care: A meta-analysis. Journal of Palliative Medicine 21(7), 1024–1037. doi:10.1089/jpm.2017.0576.CrossRefGoogle ScholarPubMed
Kavalieratos, D, Gelfman, LP, Tycon, LE, et al. (2017) Palliative care in heart failure: Rationale, evidence, and future priorities. Journal of the American College of Cardiology 70(15), 1919–1930. doi:10.1016/j.jacc.2017.08.036.CrossRefGoogle ScholarPubMed
Olsen, MK, Stechuchak, KM and Steinhauser, KS (2019) Using two small clinical trials to illustrate validation of qualitative treatment-subgroup effects via interaction trees. Contemporary Clinical Trials Communications. doi: 10.1016/j.conctc.2019.100372.CrossRefGoogle Scholar
Peterman, AH, Fitchett, G, Brady, MJ, et al. (2002) Measuring spiritual well-being in people with cancer: The functional assessment of chronic illness therapy–Spiritual Well-being Scale (FACIT-Sp). Annals of Behavioral Medicine 24(1), 49–58.CrossRefGoogle Scholar
Roberts, RE and Vernon, SW (1983) The Center for Epidemiologic Studies Depression Scale: Its use in a community sample. American Journal of Psychiatry 140(1), 41–46. doi:10.1176/ajp.140.1.41.Google Scholar
Shacham, S (1983) A shortened version of the Profile of Mood States. Journal of Personality Assessment 47(3), 305–306. doi:10.1207/s15327752jpa4703_14.CrossRefGoogle ScholarPubMed
Steinhauser, KE, Clipp, EC, McNeilly, M, et al. (2000a) In search of a good death: Observations of patients, families, and providers. Annals of Internal Medicine 132(10), 825–832.CrossRefGoogle Scholar
Steinhauser, KE, Christakis, NA, Clipp, EC, et al. (2000b) Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA 284(19), 2476–2482.CrossRefGoogle Scholar
Steinhauser, KE, Bosworth, HB, Clipp, EC, et al. (2002) Initial assessment of a new instrument to measure quality of life at the end of life. Journal of Palliative Medicine 5(6), 829–841.CrossRefGoogle ScholarPubMed
Steinhauser, KE, Clipp, EC, Bosworth, HB, et al. (2004) Measuring quality of life at the end of life: Validation of the QUAL-E. Palliative & Supportive Care 2(1), 3–14.CrossRefGoogle ScholarPubMed
Steinhauser, KE, Clipp, EC, Hays, JC, et al. (2006) Identifying, recruiting, and retaining seriously-ill patients and their caregivers in longitudinal research. Palliative Medicine 20(8), 745–754.CrossRefGoogle ScholarPubMed
Steinhauser, KE, Alexander, SC, Byock, IR, et al. (2008) Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? A pilot randomized control trial. Journal of Palliative Medicine 11(9), 1234–1240.CrossRefGoogle ScholarPubMed
Steinhauser, KE, Alexander, S, Olsen, MK, et al. (2017) Addressing patient emotional and existential needs during serious illness: Results of the outlook randomized controlled trial. Journal of Pain and Symptom Management 54(6), 898–908. doi:10.1016/j.jpainsymman.2017.06.003.CrossRefGoogle ScholarPubMed
Underwood, LG and Teresi, JA (1999) The daily spiritual experience scale: Development, theoretical description, reliability, exploratory factor analysis, and preliminary construct validity using health-related data. Annals of Behavioral Medicine 24(1), 22–33.CrossRefGoogle Scholar
Winger, JG, Ramos, K, Steinhauser, KE, et al. (2020) Enhancing meaning in the face of advanced cancer and pain: Qualitative evaluation of a meaning-centered psychosocial pain management intervention. Palliative & Supportive Care, 1–8. doi:10.1017/S1478951520000115.Google ScholarPubMed