Development of a Prognostic Awareness Impact Scale for Patients with Advanced Cancer

Brenner, Keri; Greer, Joseph A.; Jackson, Vicki A.; Park, Elyse R.; Wright, Emily; Jacobsen, Juliet; Topping, Carlisle E.W.; Jagielo, Annemarie D.; Elyze, Madeleine; Sereno, Isabella; Temel, Jennifer S.; El‐Jawahri, Areej

doi:10.1089/jpm.2021.0238

Cited by 16 publications

(13 citation statements)

References 47 publications

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“…Despite these benefits to the patient, concerns regarding the potential negative psychological consequences following prognostic disclosure have been raised, 5 with research indicating that PA can be associated with worse patient outcomes, including anxiety, 6 depression, 7 and spiritual 8 well‐being. These results can be generally understood to be in line with the conceptual framework provided by the Prognostic Awareness Impact Scale (PAIS), which posits that prognostically aware patients, if they do not have appropriate adaptive mechanisms, can suffer negative psychological consequences 9 . However, the majority of these studies have been cross‐sectional—little literature has examined how PA can change over time and how this evolution is associated with patient psychological and spiritual well‐being.…”

Section: Introductionsupporting

confidence: 54%

Prognostic awareness and its association with health outcomes in the last year of life

Özdemir

Chaudhry

et al. 2022

Cancer Medicine

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Section: Introductionsupporting

confidence: 54%

Prognostic awareness and its association with health outcomes in the last year of life

Özdemir

Chaudhry

et al. 2022

Cancer Medicine

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“…33,34 It is also possible that patients and caregivers may not interpret the terms "curable" and "terminal" similarly to clinicians, and that may reflect the limitation of our capacity to measure prognostic perceptions in this population. 35,36 The discrepancy between hearing the patients' cancer is incurable and reporting that the patient's disease is curable may also reflect cognitive dissonance and the internal conflict that caregivers experience as they process their loved ones' prognosis but still hope for a possibility of a cure. 35 Our current approach to evaluating prognostic perceptions does not take into account the potential role of cognitive dissonance in affecting caregivers' survey responses.…”

Section: Discussionmentioning

confidence: 99%

Quality of life, psychological distress, and prognostic perceptions in caregivers of patients with multiple myeloma

et al. 2022

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Although caregivers of patients with multiple myeloma (MM) play a critical role in supporting their loved ones throughout the illness course, studies examining caregiver quality of life (QOL), psychological distress, and prognostic awareness are lacking. We conducted a cross-sectional, multisite study of patients undergoing treatment with MM and their caregivers. Eligible caregivers were enrolled to 1 of 3 cohorts based on lines of therapy. Caregivers completed validated questionnaires to assess their QOL, psychological distress, and perceptions of prognosis. We enrolled 127 caregivers of patients with MM (newly diagnosed [n = 43], 2-3 lines of therapy [n = 40], and ≥4 lines of therapy [n = 44]). Caregiver QOL and psychological distress did not differ by line of therapy. The rate of clinically significant anxiety, depression, and posttraumatic stress disorder symptoms were 44.1% (56/127), 15.8% (20/127), and 24.4% (31/127), respectively. When examined in dyads, caregivers reported higher rates of clinically significant anxiety (44.4% [55/124] vs 22.5% [28/124]) compared with patients with MM. Most caregivers (84.2%, 101/120) reported that the oncologist had informed them that the patient’s cancer was incurable; however, only 50.9% (58/114) and 53.6% (59/110) of caregivers acknowledged the patient’s cancer was terminal and incurable, respectively. Caregivers of patients undergoing treatment for MM experience substantial psychological distress across the disease continuum, particularly anxiety. The majority of caregivers of patients with MM report that knowing the patient’s prognosis is extremely important and report that the oncologist told them that the patient was incurable. Nevertheless, a significant portion of caregivers believe that the patient’s MM is curable.

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“…The PAIS is a 34-item questionnaire that measures three domains: cognitive understanding of prognosis, emotional coping with prognosis, and adaptive response (i.e., the capacity to use prognostic awareness to inform life decisions). 29 The cognitive understanding domain consists of two items including a question asking patients if their oncologist had said that their cancer was curable ("yes", "no", or "My oncologist has not said whether my cancer is curable") and a question asking patients to report the likelihood that they would be cured of their cancer, assessed on a 7-point scale (extremely likely or >90% chance of cure, to no chance of cure or 0% chance of cure). The emotional coping domain consists of eight items, with a score range of 0-24, with higher scores indicating better emotional coping with prognosis.…”

Section: Perception Of Prognosismentioning

confidence: 99%

“…We measured study participants' perception of their prognosis using the Prognostic Awareness Impact Scale (PAIS), a novel tool undergoing validation that uniquely evaluates prognostic awareness as a multidimensional construct. The PAIS is a 34‐item questionnaire that measures three domains: cognitive understanding of prognosis, emotional coping with prognosis, and adaptive response (i.e., the capacity to use prognostic awareness to inform life decisions) 29 . The cognitive understanding domain consists of two items including a question asking patients if their oncologist had said that their cancer was curable (“yes”, “no”, or “My oncologist has not said whether my cancer is curable”) and a question asking patients to report the likelihood that they would be cured of their cancer, assessed on a 7‐point scale (extremely likely or >90% chance of cure, to no chance of cure or 0% chance of cure).…”

Section: Introductionmentioning

confidence: 99%

Perception of prognosis, quality of life, and distress in patients receiving chimeric antigen receptor T‐cell therapy

Dhawale

Johnson

Gaballa

et al. 2022

Cancer

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Background Chimeric antigen receptor (CAR) T‐cell is potentially curative therapy for patients with hematologic malignancies but can cause life‐threatening toxicities. Data on perceptions of prognosis and psychological distress are lacking. Methods The authors conducted a cross‐sectional study of patients receiving CAR‐T. Before hospitalization for CAR‐T, patients completed assessments of quality of life (QOL) (Functional Assessment of Cancer Therapy‐General), anxiety and depression symptoms (Hospital Anxiety and Depression Scale) and post‐traumatic stress disorder symptoms (Post‐Traumatic Stress Checklist). Patients also completed the Prognostic Awareness Impact Scale (PAIS), which measures three domains: cognitive understanding of prognosis, emotional coping with prognosis, and adaptive response. Results A total of 71.8% (102 of 142) of eligible patients were enrolled. A total of 34% of patients reported that their oncologist said their cancer is curable and 64% reported there was >50% chance of cure. Overall, 26%, 30%, and 21% of patients reported clinically significant depression, anxiety, and posttraumatic stress disorder (PTSD) symptoms, respectively. We found no association between patients' cognitive understanding of prognosis and QOL or mood. Higher emotional coping with prognosis was associated with better QOL (Β = 0.72; SE = 0.10; p = <.001) and lower depression (Β = −0.17; SE = 0.02; p = <.001), anxiety (Β = −0.21; SE = 0.02; p = <.001), and PTSD (Β = −0.43; SE = 0.06; p = <.001) symptoms. Higher adaptive response was associated with better QOL (Β = 0.19; SE = 0.09; p = .028) and lower depression (Β = −0.05; SE = 0.02; p = .023), anxiety (Β = −0.09; SE = 0.02; p = <.001), and PTSD (Β = −0.19; SE = 0.05; p = <.001) symptoms. Conclusions Patients undergoing CAR‐T report overly optimistic perception of their prognosis and have high rates of psychological distress. Higher emotional coping with prognosis and adaptive response were associated with better QOL and less psychological distress, underscoring the need to develop interventions to promote coping with this treatment. Plain language summary Patients undergoing chimeric antigen receptor T‐cell therapy experience report overly optimistic perceptions of their prognosis and have high rates of psychological distress. Notably, higher emotional coping with prognosis and adaptive response were associated with better quality of life and less psychological distress.

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Development of a Prognostic Awareness Impact Scale for Patients with Advanced Cancer

Cited by 16 publications

References 47 publications

Prognostic awareness and its association with health outcomes in the last year of life

Prognostic awareness and its association with health outcomes in the last year of life

Quality of life, psychological distress, and prognostic perceptions in caregivers of patients with multiple myeloma

Perception of prognosis, quality of life, and distress in patients receiving chimeric antigen receptor T‐cell therapy

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