The Effect of Disclosing Life Expectancy Information on Patients' Prognostic Understanding: Secondary Outcomes From a Multicenter Randomized Trial of a Palliative Chemotherapy Educational Intervention

Enzinger, Andrea C.; Uno, Hajime; McCleary, Nadine Jackson; Frank, Elizabeth; Sanoff, Hanna K.; Loon, Katherine Van; Matin, Khalid; Bullock, Andrea J.; Cronin, Christine; Bagley, Janet; Schrag, Deborah

doi:10.1016/j.jpainsymman.2020.07.025

Cited by 8 publications

(8 citation statements)

References 50 publications

(54 reference statements)

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“…Regulatory approval of an apparently effective new treatment is an important source of hope for patients with cancer. A major body of research shows that many patients with cancer, particularly those with advanced disease, misunderstand the purpose of drug treatment and overestimate the benefits 383940417071727374757677. When patients have unrealistic expectations of the benefits from treatment and misplaced confidence in the strength of study findings underlying approvals, informed decision making is undermined.…”

Section: Discussionmentioning

confidence: 99%

Communication of anticancer drug benefits and related uncertainties to patients and clinicians: document analysis of regulated information on prescription drugs in Europe

Davis

Wagner

Salcher‐Konrad

et al. 2023

BMJ

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ObjectiveTo evaluate the frequency with which relevant and accurate information about the benefits and related uncertainties of anticancer drugs are communicated to patients and clinicians in regulated information sources in Europe.DesignDocument content analysis.SettingEuropean Medicines Agency.ParticipantsAnticancer drugs granted a first marketing authorisation by the European Medicines Agency, 2017-19.Main outcome measuresWhether written information on a product addressed patients’ commonly asked questions about: who and what the drug is used for; how the drug was studied; types of drug benefit expected; and the extent of weak, uncertain, or missing evidence for drug benefits. Information on drug benefits in written sources for clinicians (summaries of product characteristics), patients (patient information leaflets), and the public (public summaries) was compared with information reported in regulatory assessment documents (European public assessment reports).Results29 anticancer drugs that received a first marketing authorisation for 32 separate cancer indications in 2017-19 were included. General information about the drug (including information on approved indications and how the drug works) was frequently reported across regulated information sources aimed at both clinicians and patients. Nearly all summaries of product characteristics communicated full information to clinicians about the number and design of the main studies, the control arm (if any), study sample size, and primary measures of drug benefit. None of the patient information leaflets communicated information to patients about how drugs were studied. 31 (97%) summaries of product characteristics and 25 (78%) public summaries contained information about drug benefits that was accurate and consistent with information in regulatory assessment documents. The presence or absence of evidence that a drug extended survival was reported in 23 (72%) summaries of product characteristics and four (13%) public summaries. None of the patient information leaflets communicated information about the drug benefits that patients might expect based on study findings. Scientific concerns about the reliability of evidence on drug benefits, which were raised by European regulatory assessors for almost all drugs in the study sample, were rarely communicated to clinicians, patients, or the public.ConclusionsThe findings of this study highlight the need to improve the communication of the benefits and related uncertainties of anticancer drugs in regulated information sources in Europe to support evidence informed decision making by patients and their clinicians.

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Section: Discussionmentioning

confidence: 99%

Communication of anticancer drug benefits and related uncertainties to patients and clinicians: document analysis of regulated information on prescription drugs in Europe

Davis

Wagner

Salcher‐Konrad

et al. 2023

BMJ

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“…Two recent studies shed light on the issue. A recent randomised trial examined whether providing patients with life expectancy information had an effect on patients' expectations (Enzinger et al, 2021). They found that patient prognostic expectations did not change.…”

Section: Discussionmentioning

confidence: 99%

Routine follow‐up care for head and neck cancer after curative treatment: A 3‐year experience of measuring patients' self‐reported needs, preferences, quality of life and attitudes towards follow‐up

Brennan

Hall

Yoo

et al. 2022

European J Cancer Care

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Objective To evaluate and describe attitudes, quality of life (Qol), needs and preferences of patients with head and neck cancer after 3 years of follow‐up care. Methods This is an exploratory prospective study of recurrence‐free patients. Survey results were compared between 1‐, 2‐ and 3‐year post‐treatment and by disease characteristics. Results A total of 116 patients were included with 46% oropharyngeal cancer, 66% early stage disease and 41% having had surgery. After 3 years, most patients reported good to excellent health (88%), however expressed uncertainty regarding recurrence (66%), multiple needs (information on prognosis 91%, long‐term sequalae 72%) and wanted to continue with follow‐up (96%). Few changes were observed over time, with exceptions. Patients with more advanced disease, oral cancer or who had surgery experienced declining Qol (p < 0.050). Women experienced improvements in Qol domains (pain p = 0.028, speech p = 0.009) over time. Attitudes towards communication with oncologists demonstrated improved patient comfort (p = 0.044) over the 3 years; however, patients' beliefs about their prognosis did not (71% vs. 73% vs. 77% did not believe they were cured, p = 0.581). Conclusion Although patients' needs, preferences and attitudes towards follow‐up did not change drastically, important needs persist. This work supports identifying individual patient needs and the challenges in addressing prognostic expectations.

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“…[23][24][25] There are a number of factors that could influence patient perceptions, 16,26 and prior research has even demonstrated that receiving life expectancy statistics does not impact patients' prognostic expectations. 27 Additionally, patients with earlier-stage disease who receive adjuvant chemotherapy may have a better understanding than those who do not, perhaps because oncologists may spend more time to explicitly review the goals of treatment. When oncologists recommend adjuvant chemotherapy for the aim, but not guarantee, of eradicating any residual micro-metastatic disease, this may lead patients to an accurate understanding of Responses to these questions were recorded on a 0-10 Likert Scale, along with an option for indicating "did not discuss."…”

Section: Discussionmentioning

confidence: 99%

“…Yet, it is understandably human for patients to feel this way, especially as drug development continues and as newer therapies reinvigorate optimism for tumor response 23–25 . There are a number of factors that could influence patient perceptions, 16,26 and prior research has even demonstrated that receiving life expectancy statistics does not impact patients' prognostic expectations 27 . Additionally, patients with earlier‐stage disease who receive adjuvant chemotherapy may have a better understanding than those who do not, perhaps because oncologists may spend more time to explicitly review the goals of treatment.…”

Section: Discussionmentioning

confidence: 99%

Accuracy of curability expectations in patients with gastrointestinal cancers

et al. 2022

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Background Assessment of illness and treatment understanding among cancer patients has largely focused on those with advanced disease. Less is known about patient expectations at earlier stages of cancer and potential modifiers of accurate understanding. Methods We assessed accuracy of cure expectations in patients across all stages with gastrointestinal (GI) cancers. Accuracy was determined by independent reviews of patient health records by oncologists on the investigative team. Impact on cure accuracy of selected clinical variables and health‐information preferences was analyzed. Results Hundred and thirty five patients were included for analysis, with 100% interrater agreement for accuracy between oncologist reviewers. Sixety five patients (48%) had accurate cure expectations from their cancer treatment. Accuracy was lower in Stage IV versus Stage I–III disease (35% vs. 63%, p < 0.01), lower in unresectable versus resectable disease (35% vs. 67%, p < 0.01), and higher in patients with early‐stage disease who received adjuvant chemotherapy versus those who did not (78% vs. 53%, p = 0.04). Accuracy did not differ by health‐information preferences and remained stable over time. Of 63 patients who died, baseline accuracy differed by location of death ( p = 0.03), with greater accuracy in those who died with home hospice (56%). Accuracy was lower in those who were hospitalized in the last 30 days of life versus those who were not (25% vs. 59%, p = 0.01). Conclusions Inaccurate cure expectations are prevalent across all stages of GI cancers, but particularly among those with metastatic or unresectable disease. High‐quality, iterative communication strategies may facilitate patient illness and treatment understanding throughout the disease course.

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The Effect of Disclosing Life Expectancy Information on Patients' Prognostic Understanding: Secondary Outcomes From a Multicenter Randomized Trial of a Palliative Chemotherapy Educational Intervention

Cited by 8 publications

References 50 publications

Communication of anticancer drug benefits and related uncertainties to patients and clinicians: document analysis of regulated information on prescription drugs in Europe

Communication of anticancer drug benefits and related uncertainties to patients and clinicians: document analysis of regulated information on prescription drugs in Europe

Routine follow‐up care for head and neck cancer after curative treatment: A 3‐year experience of measuring patients' self‐reported needs, preferences, quality of life and attitudes towards follow‐up

Accuracy of curability expectations in patients with gastrointestinal cancers

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