Development of a Prognostic Awareness Impact Scale for Patients with Advanced Cancer
(2022) In Journal of Palliative Medicine 25(3). p.445-454- Abstract
Background: No reliable instruments exist to measure prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer. Methods: We developed the Prognostic Awareness Impact Scale (PAIS) using a qualitative approach. During phase 1, we convened a working group with a transdisciplinary team of clinicians from oncology (n = 2), psychology (n = 2), psychiatry (n = 1), palliative care (n = 3), and survey development (n = 1) to identify key domains of PAIS. Using a consensus-driven process, the team generated an item bank for each domain. During phase 2, we conducted cognitive interviews with 39 patients with advanced cancer to assess the understandability of the PAIS. Results: The working group developed a... (More)
Background: No reliable instruments exist to measure prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer. Methods: We developed the Prognostic Awareness Impact Scale (PAIS) using a qualitative approach. During phase 1, we convened a working group with a transdisciplinary team of clinicians from oncology (n = 2), psychology (n = 2), psychiatry (n = 1), palliative care (n = 3), and survey development (n = 1) to identify key domains of PAIS. Using a consensus-driven process, the team generated an item bank for each domain. During phase 2, we conducted cognitive interviews with 39 patients with advanced cancer to assess the understandability of the PAIS. Results: The working group developed a conceptual framework for PAIS, identifying three domains: (1) cognitive understanding of prognosis (capacity to understand intellectually one's prognosis), (2) emotional coping (capacity to process prognostic uncertainty and terminal prognosis), and (3) adaptive response (capacity to use prognostic awareness to inform life decisions). Cognitive interviews revealed that patients had an accurate understanding of most PAIS items. Patients reported difficulty with binary response options for questions pertaining to emotional coping. They expressed difficulty answering numerous questions regarding their cognitive understanding of their prognosis. We revised the PAIS by (1) replacing binary response options with ordinal agreement scales; and (2) reducing the number of items focused on cognitive understanding of prognosis. Conclusion: We developed a conceptual framework to capture prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer using the PAIS. Future work should focus on validating the PAIS by testing its psychometric properties.
(Less)
- author
- publishing date
- 2022-03
- type
- Contribution to journal
- publication status
- published
- keywords
- advanced cancer, prognostic awareness, prognostic impact
- in
- Journal of Palliative Medicine
- volume
- 25
- issue
- 3
- pages
- 445 - 454
- publisher
- Mary Ann Liebert, Inc.
- external identifiers
-
- pmid:34637630
- scopus:85125553132
- ISSN
- 1096-6218
- DOI
- 10.1089/jpm.2021.0238
- language
- English
- LU publication?
- no
- additional info
- Publisher Copyright: © 2022, Mary Ann Liebert, Inc., publishers 2022.
- id
- 51d47f50-2dee-4836-a7d0-cc1c5411caad
- date added to LUP
- 2023-04-18 11:12:58
- date last changed
- 2024-06-15 01:57:56
@article{51d47f50-2dee-4836-a7d0-cc1c5411caad,
abstract = {{<p>Background: No reliable instruments exist to measure prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer. Methods: We developed the Prognostic Awareness Impact Scale (PAIS) using a qualitative approach. During phase 1, we convened a working group with a transdisciplinary team of clinicians from oncology (n = 2), psychology (n = 2), psychiatry (n = 1), palliative care (n = 3), and survey development (n = 1) to identify key domains of PAIS. Using a consensus-driven process, the team generated an item bank for each domain. During phase 2, we conducted cognitive interviews with 39 patients with advanced cancer to assess the understandability of the PAIS. Results: The working group developed a conceptual framework for PAIS, identifying three domains: (1) cognitive understanding of prognosis (capacity to understand intellectually one's prognosis), (2) emotional coping (capacity to process prognostic uncertainty and terminal prognosis), and (3) adaptive response (capacity to use prognostic awareness to inform life decisions). Cognitive interviews revealed that patients had an accurate understanding of most PAIS items. Patients reported difficulty with binary response options for questions pertaining to emotional coping. They expressed difficulty answering numerous questions regarding their cognitive understanding of their prognosis. We revised the PAIS by (1) replacing binary response options with ordinal agreement scales; and (2) reducing the number of items focused on cognitive understanding of prognosis. Conclusion: We developed a conceptual framework to capture prognostic awareness and its psychological and behavioral impacts for patients with advanced cancer using the PAIS. Future work should focus on validating the PAIS by testing its psychometric properties.</p>}},
author = {{Brenner, Keri and Greer, Joseph A. and Jackson, Vicki and Park, Elyse and Wright, Emily and Jacobsen, Juliet and Topping, Carlisle and Jagielo, Annemarie and Elyze, Madeleine and Sereno, Isabella and Temel, Jennifer S. and El-Jawahri, Areej}},
issn = {{1096-6218}},
keywords = {{advanced cancer; prognostic awareness; prognostic impact}},
language = {{eng}},
number = {{3}},
pages = {{445--454}},
publisher = {{Mary Ann Liebert, Inc.}},
series = {{Journal of Palliative Medicine}},
title = {{Development of a Prognostic Awareness Impact Scale for Patients with Advanced Cancer}},
url = {{http://dx.doi.org/10.1089/jpm.2021.0238}},
doi = {{10.1089/jpm.2021.0238}},
volume = {{25}},
year = {{2022}},
}