Association of Prognostic Understanding With Health Care Use Among Older Adults With Advanced Cancer

Loh, Kah Poh; Seplaki, Christopher L.; Sanapala, Chandrika; Yousefi‐Nooraie, Reza; Lund, Jennifer L.; Epstein, Ronald M.; Duberstein, Paul R.; Flannery, Marie; Culakova, Eva; Xu, Huiwen; McHugh, Colin; Klepin, Heidi D.; Lin, Po‐Ju; Watson, Erin; Grossman, Valerie Aarne; Liu, Jane Jijun; Geer, Jodi; O’Rourke, Mark Allen; Mustian, Karen M.; Mohile, Supriya G.

doi:10.1001/jamanetworkopen.2022.0018

Cited by 20 publications

(10 citation statements)

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“…36 In addition, prognostic discordance regarding curability and life expectancy estimates occurred in 60% and 72% of the dyads respectively, with patients estimating a higher chance of curability and greater life expectancy than their oncologists. 36…”

Section: Discussionmentioning

confidence: 98%

Perceptions of prognosis and end-of-life care outcomes in patients with advanced lung and gastrointestinal cancer

et al. 2023

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Background: Many patients with advanced cancer have misperceptions of their prognosis, which may impact end-of-life decision-making. Data regarding associations between prognostic perceptions over time and end-of-life care outcomes are lacking. Aim: To describe patients’ perceptions of their prognosis with advanced cancer and examine associations between these perceptions and end-of-life care outcomes. Design: Secondary analysis of longitudinal data from a randomized controlled trial of a palliative care intervention for patients with newly diagnosed incurable cancer. Setting/Participants: Conducted at an outpatient cancer center in the northeastern United States and patients were within 8 weeks of a diagnosis with incurable lung or non-colorectal gastrointestinal cancer. Results: We enrolled 350 patients in the parent trial, of which 80.5% (281/350) died during the study period. Overall, 59.4% (164/276) of patients reported they were terminally ill, and 66.1% (154/233) reported that their cancer was likely curable at the assessment closest to death. Patient acknowledgment of terminal illness was only associated with lower risk of hospitalizations in the last 30 days of life (OR = 0.52, p = 0.025). Patients who reported their cancer as likely curable were less likely to utilize hospice (OR = 0.25, p = 0.002) or die at home (OR = 0.56, p = 0.043), and they were more likely to be hospitalized in the last 30 days of life (OR = 2.28, p = 0.011). Conclusions: Patients’ perceptions of their prognosis are associated with important end-of-life care outcomes. Interventions are needed to enhance patients’ perceptions of their prognosis and optimize their end-of-life care.

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Section: Discussionmentioning

confidence: 98%

Perceptions of prognosis and end-of-life care outcomes in patients with advanced lung and gastrointestinal cancer

et al. 2023

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“…Finally, caregivers can face a number of challenges when trying to support patient treatment decision‐making, particularly understanding the patient's physical condition and quality of life. Studies have shown the benefits of prognostic disclosure discussions, 22,23 hence clinicians should seek to initiate and conduct conversations with patients and families about prognosis and the likely course of the cancer trajectory. A growing body of resources is available to facilitate training in these conversation skills 24,25 …”

Section: Discussionmentioning

confidence: 99%

Family caregiver roles and challenges in assisting patients with cancer treatment decision‐making: Analysis of data from a national survey

Dionne‐Odom

Kent

Rocque

et al. 2023

Health Expectations

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BackgroundWe aimed to describe the roles and challenges of family caregivers involved in patients' cancer treatment decision‐making.MethodsFamily caregiver‐reported data were analyzed from a national survey conducted in the United States by CancerCare® (2/2021–7/2021). Four select‐all‐that‐apply caregiver roles were explored: (1) observer (patient as primary decision‐maker); (2) primary decision‐maker; (3) shared decision‐maker with patient and (4) decision delegated to healthcare team. Roles were compared across five treatment decisions: where to get treatment, the treatment plan, second opinions, beginning treatment and stopping treatment. Ten challenges faced by caregivers (e.g., information, cost, treatment understanding) were then examined. χ2 and regression analyses were used to assess associations between roles, decision areas, challenges and caregiver sociodemographics.ResultsOf 2703 caregiver respondents, 87.6% reported involvement in patient decisions about cancer treatment, including 1661 who responded to a subsection further detailing their roles and challenges with specific treatment decisions. Amongst these 1661 caregivers, 22.2% reported an observing role, 21.3% a primary decision‐making role, 53.9% a shared decision‐making role and 18.1% a role delegating decisions to the healthcare team. Most caregivers (60.4%) faced ≥1 challenge, the most frequent being not knowing how treatments would affect the patient's physical condition (24.8%) and quality of life (23.2%). In multivariable models, being Hispanic/Latino/a was the strongest predictor of facing at least one challenge (b = −0.581, Wald = 10.69, p < .01).ConclusionsMost caregivers were involved in patients' cancer treatment decisions. The major challenge was not understanding how treatments would impact patients' physical health and quality of life. Challenges may be more commonly faced by Hispanic/Latino/a caregivers.Patient or Public ContributionThe CancerCare® survey was developed in partnership with caregiving services and research experts to describe the role of cancer family caregivers in patient decision‐making and assess their needs for support. All survey items were reviewed by a CancerCare advisory board that included five professional patient advocates and piloted by a CancerCare social worker and other staff who provide counselling to cancer caregivers.

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“…Results indicate that while ACP may not necessarily change patient’s end-of-life trajectory or their end-of-life care, nor does it facilitate end-of-life care consistent with their preferences, it does positively influence their interactions with the healthcare system and with their caregivers. Given that many seriously ill patients and their caregivers do not understand enough about their (patients’) illness and are ill-prepared to make in-the-moment end-of-life decisions,172 173 ACP’s impact on improving communication cannot be considered trivial. ACP should thus not be considered a magic bullet for improving patient’s end-of-life care and reducing end of life healthcare costs, but instead should be considered as a means of facilitating a shared understanding between patients, surrogates and healthcare providers of what matters most to patients, preparing patients and caregivers for the difficult end-of-life decision-making, improving their communication with each other and with their healthcare providers, thereby humanising our healthcare systems.…”

Section: Discussionmentioning

confidence: 99%

What is the evidence for efficacy of advance care planning in improving patient outcomes? A systematic review of randomised controlled trials

2022

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ObjectivesTo conduct an up-to-date systematic review of all randomised controlled trials assessing efficacy of advance care planning (ACP) in improving patient outcomes, healthcare use/costs and documentation.DesignNarrative synthesis conducted for randomised controlled trials. We searched electronic databases (MEDLINE/PubMed, Embase and Cochrane databases) for English-language randomised or cluster randomised controlled trials on 11 May 2020 and updated it on 12 May 2021 using the same search strategy. Two reviewers independently extracted data and assessed methodological quality. Disagreements were resolved by consensus or a third reviewer.ResultsWe reviewed 132 eligible trials published between 1992 and May 2021; 64% were high-quality. We categorised study outcomes as patient (distal and proximal), healthcare use and process outcomes. There was mixed evidence that ACP interventions improved distal patient outcomes including end-of-life care consistent with preferences (25%; 3/12 with improvement), quality of life (0/14 studies), mental health (21%; 4/19) and home deaths (25%; 1/4), or that it reduced healthcare use/costs (18%; 4/22 studies). However, we found more consistent evidence that ACP interventions improve proximal patient outcomes including quality of patient–physician communication (68%; 13/19), preference for comfort care (70%; 16/23), decisional conflict (64%; 9/14) and patient-caregiver congruence in preference (82%; 18/22) and that it improved ACP documentation (a process outcome; 63%; 34/54).ConclusionThis review provides the most comprehensive evidence to date regarding the efficacy of ACP on key patient outcomes and healthcare use/costs. Findings suggest a need to rethink the main purpose and outcomes of ACP.PROSPERO registration numberCRD42020184080.

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Association of Prognostic Understanding With Health Care Use Among Older Adults With Advanced Cancer

Cited by 20 publications

References 54 publications

Perceptions of prognosis and end-of-life care outcomes in patients with advanced lung and gastrointestinal cancer

Perceptions of prognosis and end-of-life care outcomes in patients with advanced lung and gastrointestinal cancer

Family caregiver roles and challenges in assisting patients with cancer treatment decision‐making: Analysis of data from a national survey

What is the evidence for efficacy of advance care planning in improving patient outcomes? A systematic review of randomised controlled trials

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