How patients with advanced cancer conceptualize prognosis: A phenomenological qualitative inquiry.

BACKGROUND: Despite the importance of accurate prognostic understanding in patients with advanced cancer, there is little consensus around how to conceptualize and measure the multidimensional construct. Most studies focus on single aspects of prognostic understanding (e.g., curability) that clinicians have identified as important; no previous research has asked patients how they define "prognosis." AIM: The present study examined how patients with advanced cancer conceptualize their "prognosis." It also explored how patients assigned value to prognostic information and the impact of prognosis on life perspectives. DESIGN: A phenomenological approach was used to analyze semi-structured interviews with individuals with advanced cancer to examine how patients define prognosis. SETTING/PARTICIPANTS: English and Spanish-speaking patients with advanced cancer (N = 29) were recruited from ambulatory clinics at a comprehensive cancer center in New York City. RESULTS: To conceptualize prognosis, patients focused on concrete medical data, anticipated survival and quality of life, impact on meaningful life events, uncertainty, and physician affect. They discussed the importance of maintaining normalcy despite prognosis, knowledge as a form of coping, information reframing, and altered decision-making as means of coping with prognostic information. CONCLUSIONS: Given the range of ways patients define prognosis and assign value to prognostic information, clinicians should incorporate a thorough assessment of patient information preferences, values, and coping styles when engaging in end-of-life discussions. Trainings should emphasize the importance of nonverbal cues (i.e., affect management, body language) in prognostic disclosure.

Measuring a Patient's understanding of their prognosis: An exploratory analysis.

OBJECTIVE: In patients with cancer across the illness trajectory, treatment decisions are often influenced by one's perception of their prognosis (i.e., curability of disease, life expectancy, quality of life). However, research on how patients understand their prognosis (i.e., prognostic understanding) has been limited by simplistic measurement tools that fail to capture the complexity of the construct. This study describes the initial development of a measure of prognostic understanding: the Prognostic Understanding Perceptions Scale (PUPS) for use in patients with advanced cancer. METHOD: An initial pool of 16 candidate items were developed through semi-structured interviews with 15 experts (oncology, psycho-oncology and palliative care professionals) and 30 advanced cancer patients. We investigated the dimensionality, internal item structure, item difficulty and item discrimination of the item pool using exploratory factor analysis (EFA), classical test theory (CTT) and item response theory (IRT) analyses. Convergent and divergent validity were based on correlations between PUPS, terminal illness acknowledgement, and self-report measures of depression, anxiety, hopelessness, and death acceptance. RESULTS: The final measure was comprised of nine items encompassing three factors (perceived curability, illness trajectory, treatment options), yielding strong psychometric properties. CONCLUSION: These results provide preliminarily support for PUPS as a multifaceted measure of prognostic understanding developed for use in patients with advanced cancer. Preliminary findings also highlight the potential utility of the PUPS for clinical settings, as a means of enhancing communication between patients and physicians.

Coping with glioblastoma: prognostic communication and prognostic understanding among patients with recurrent glioblastoma, caregivers, and oncologists.

PURPOSE: Glioblastoma (GBM) is a devastating neuro-oncologic disease with invariably poor prognosis. Despite this, research shows patients have unrealistic perceptions of their prognosis, which may relate in part to communication patterns between patients, caregivers and oncologists. The purpose of this study was to examine communication processes and goals among patients, caregivers, and oncologists to elucidate drivers of prognostic understanding (PU) in the context of recurrent GBM. METHODS: This was a prospective, multi-center study enrolling adult patients with GBM, caregivers, and oncologists, who independently reported the content of a specific discussion involving the disclosure of GBM recurrence. Communication processes and goals were characterized for each participant, and concordance between all dyads and patient-caregiver-oncologist triads were calculated. RESULTS: Seventeen patient, caregiver, and oncologist triads were analyzed. At the individual level, three (17.6%) patients and 8 (47.1%) caregivers reported having discussed prognosis during the clinical encounter, as compared to ten oncologists (58.8%). Seven patients (41.2%) and 5 caregivers (29.4%), versus thirteen oncologists (76.5%) reported ever discussing prognosis or life expectancy at previous appointments. Generally, patient-caregiver concordance (i.e., both answered the same) regarding communication goals and processes was low. Triads showed limited concordant responses in discussing curability (n = 5), prognosis (n = 4), end-of-life treatment goals (n = 4), and ever discussing prognosis (n = 3). CONCLUSION: Patients, caregivers and oncologists had discordant views regarding communication processes and prognostic goals, even when recalling a single discussion. This study highlights the importance of clear and frequent communication about prognosis, and the need for further research on communication and PU in the neuro-oncology setting.

Reconciling the prospect of disease progression with goals and expectations: Development and validation of a measurement model in advanced cancer.

OBJECTIVE: Among patients living with advanced, life-limiting illness, reconciling the prospect of disease progression with future goals and expectations is a key psychological task, integral to treatment decision-making and emotional well-being. To date, this psychological process remains poorly understood with no available measurement tools. The present paper develops and validates a measurement model for operationalizing this psychological process. METHODS: In Phase 1, concept elicitation interviews were conducted among Stage IV lung, gastrointestinal, and gynecologic cancer patients, their caregivers, and experts (N = 19), to further develop our conceptual framework centered on assimilation and accommodation coping. In Phase 2, draft self-report items of common assimilation and accommodation coping strategies were evaluated via patient cognitive interviews (N = 11). RESULTS: Phase 1 interviews identified several coping strategies, some of which aimed to reduce the perceived likelihood of disease progression (assimilation), and others aimed to integrate the likelihood into new goals and expectations (accommodation). The coping strategies appeared to manifest in patients' daily lives, and integrally related to their emotional well-being and how they think about treatments. Phase 2 cognitive interviews identified items to remove and modify, resulting in a 31-item measure assessing 10 assimilation and accommodation coping strategies. CONCLUSIONS: The present work derived a content-valid measure of the psychological process by which patients reconcile the prospect of disease progression with their goals and expectations. Further psychometric validation and use of the scale could identify intervention targets for enhancing patient decision-making and well-being.

Implementation of a Meaning-Centered Psychotherapy training (MCPT) program for oncology clinicians: a qualitative analysis of facilitators and barriers.

The Meaning-Centered Psychotherapy training program (MCPT) is a multimodal, intensive, in-person program that trains cancer care providers in the evidence-based psychosocial treatment Meaning-Centered Psychotherapy (MCP). This analysis aimed to identify barriers and facilitators to clinical implementation (CI) at 1 year post-training. Trainee feedback regarding CI was collected via a mixed-methods questionnaire, including rating the ease of CI and free-text response identifying facilitators and barriers to CI. Descriptive statistics and thematic content analysis of follow-up data from the first five MCPT training cohorts (n = 55) were performed to assess CI and its facilitators and barriers. One third of participants indicated that it was at least somewhat difficult to implement MCP in clinical practice. Trainee-identified facilitators and barriers to CI were characterized within four main categories: program, patient, treatment, and institution. Within each of these factors, clinicians reported a variety of components that contributed to or hindered their ability to implement MCP. MCPT itself was reported as a facilitator. Patient access and interest were simultaneously identified as facilitators for some and barriers for others. Some trainees found the MCP treatment structure helpful in addressing important patient psychosocial needs, while others felt it was too restrictive. Institutional support played an important role in whether trainees felt hindered or helped to implement MCP. These initial results provide important insight into the program's strengths and have fostered improvements to the MCPT program to better facilitate CI. Further study of MCPT CI is warranted, and theme refinement will be possible with a larger sample.

Acute Cancer Cognitive Therapy Online Training Program: Feasibility and Impact on Clinician Knowledge Uptake.

The delivery of psychosocial support to patients and families is challenging in the acute cancer setting. To meet their needs, we developed Acute Cancer Cognitive Therapy (ACCT), an approach that applies traditional cognitive therapy (CT) techniques to this setting. We assessed the feasibility and impact of a six-hour web-based ACCT training for professionals working in psychosocial oncology. Learners were recruited in person at psycho-oncology lectures, workshops, and conferences and through social media channels. One hundred and thirty professionals completed the application, and 46 learners completed all training requirements. Descriptive statistics were used to characterize the sample of applicants and learners, and a paired-samples t-test compared learners' scores on pre-and-post assessments of ACCT knowledge. Learners were predominantly female (n = 40, 86.9%), white (n = 42, 91.3%), and trained in the disciplines of social work (n = 17, 36.9%) or psychology (n = 17, 36.9%). Post-training scores were significantly higher than baseline, averaging a 19.78-point increase. These results support the feasibility and positive impact of using this web-based training to teach ACCT. Future studies will evaluate alternative approaches to retention, multi-cultural applicability, broader dissemination and the extent and durability of skill acquisition using multimodal longitudinal models of assessment.

Health Information Preferences and Curability Beliefs Among Patients With Advanced Cancer.

CONTEXT: Accurate prognostic understanding is associated with increased advance care planning, symptom control, and patient autonomy in oncology. The impact of prognostic understanding on patients' health information preferences (HIPs) and prognostic information preferences is unknown and has important implications for health care communication. OBJECTIVES: The present study characterized the HIPs of patients with advanced cancer; examined differences in HIPs between patients with varying curability beliefs; and identified differences in the characteristics and psychological well-being of patients with varying curability beliefs. METHODS: This cross-sectional study used a secondary data analysis of baseline data (prerandomization) for patients enrolled in a large randomized controlled psychotherapy trial. 206 participants were recruited from outpatient clinics at a single facility. Inclusion criteria included: 18 years and older; English speaking, Stage IV solid tumor cancer, and Distress Thermometer score of ≥4. RESULTS: Most participants preferred as many details as possible about their diagnosis and treatment (69.4%; n = 143), and the likely outcome of their disease (72.3%; n = 149). Most participants accurately described their cancer as unlikely curable or incurable (62.6%; n = 129). There were no significant differences in HIPs based on level of prognostic understanding. Poorer prognostic understanding was associated with religiosity and better quality of life and existential well-being. CONCLUSION: In the present study, prognostic understanding (i.e., curability beliefs) was not associated with HIPs. Therefore, oncology clinicians must individually and interatively evaluate patients' interest and preferences for receiving information. Future research should further clarify preferences for the framing and content of prognostic information from providers and improve the measurement of prognostic understanding to facilitate patient-centered end-of-life care.

The unique burden of rare cancer caregiving: caregivers of patients with Erdheim-Chester disease.

Research examining the experience of informal caregivers (ICs) for patients with rare cancers is limited. This was a mixed-methods pilot study of 14 ICs for patients with Erdheim-Chester disease (ECD), an ultra-rare neoplasm. Participants were predominantly female and over half provided at least 60% of their loved one's care. Participants completed measures of the impact of caregiving, caregiver burden, unmet needs, quality of life, anxiety, and depression. Participants reported substantial impact of caregiving, including limiting (50%) or discontinuing (21%) paid employment, and exhausting financial savings (43%). ICs reported a moderate level of burden with five (38%) reporting risk for burnout. While participants reported anxiety (64%) and depression (14%), their overall quality of life was favorable. Semi-structured interviews highlighted factors related to the distress and isolation of navigating a rare cancer. ECD ICs report burden and distress shaped by the experience of providing care for a patient with a rare cancer.