Dataset Information

Patient-Caregiver Dyads' Prognostic Information Preferences and Perceptions in Advanced Cancer.

ABSTRACT:

Context

Prognostic information is considered important for advanced cancer patients and primary informal caregivers to prepare for the end of life. Little is known about discordance in patients' and caregivers' prognostic information preferences and prognostic perceptions, while such discordance complicates adaptive dyadic coping, clinical interactions and care plans.

Objectives

To investigate the extent of patient-caregiver discordance in prognostic information preferences and perceptions, and the factors associated with discordant prognostic perceptions.

Methods

We conducted secondary analyses of a cross-sectional study (PROSPECT, 2019-2021). Advanced cancer patients (median overall survival ≤12 months) from seven Dutch hospitals and caregivers completed structured surveys (n = 412 dyads).

Results

Seven percent of patient-caregiver dyads had discordant information preferences regarding the likelihood of cure; 24%-25% had discordant information preferences regarding mortality risk (5/2/1 year). Seventeen percent of dyads had discordant perceptions of the likelihood of cure; 12%-25% had discordant perceptions of mortality risk (5/2/1 year). Dyads with discordant prognostic information preferences (P < 0.05) and dyads in which patients reported better physical functioning (P < 0.01) were significantly more likely to perceive the one-year mortality risk discordantly.

Conclusion

Physicians should be sensitive to discordant prognostic information preferences and prognostic perceptions among patient-caregiver dyads in advanced cancer care.

SUBMITTER: van der Velden NCA

PROVIDER: S-EPMC10285690 | biostudies-literature | 2023 May

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Patient-Caregiver Dyads' Prognostic Information Preferences and Perceptions in Advanced Cancer.

van der Velden Naomi C A NCA Smets Ellen M A EMA Hagedoorn Mariët M Applebaum Allison J AJ Onwuteaka-Philipsen Bregje D BD van Laarhoven Hanneke W M HWM Henselmans Inge I

Journal of pain and symptom management 20230131 5

<h4>Context</h4>Prognostic information is considered important for advanced cancer patients and primary informal caregivers to prepare for the end of life. Little is known about discordance in patients' and caregivers' prognostic information preferences and prognostic perceptions, while such discordance complicates adaptive dyadic coping, clinical interactions and care plans.<h4>Objectives</h4>To investigate the extent of patient-caregiver discordance in prognostic information preferences and pe ...[more]

PMID: 36731806

Similar Datasets

Project description:BackgroundIn 2022, it was estimated that more than 80,000 new cases of bladder cancer (BC) were diagnosed in the United States, 12% of which were locally advanced or metastatic BC (advanced BC). These forms of cancer are aggressive and have a poor prognosis, with a 5-year survival rate of 7.7% for metastatic BC. Despite recent therapeutic advances for advanced BC, little is known about patient and caregiver perceptions of different systemic treatments. To further explore this topic, social media can be used to collect the perceptions of patients and caregivers when they discuss their experiences on forums and online communities.ObjectiveThe aim of this study was to assess patient and caregiver perceptions of chemotherapy and immunotherapy for treating advanced BC from social media-posted data.MethodsPublic posts on social media in the United States between January 2015 and April 2021 from patients with advanced BC and their caregivers were collected. The posts included in this analysis were geolocalized to the United States; collected from publicly available domains and sites, including social media sites such as Twitter and forums such as patient association forums; and were written in English. Posts mentioning any line of chemotherapy or immunotherapy were qualitatively analyzed by two researchers to classify perceptions of treatments (positive, negative, mixed, or without perception).ResultsA total of 80 posts by 69 patients and 142 posts by 127 caregivers mentioning chemotherapy, and 42 posts by 31 patients and 35 posts by 32 caregivers mentioning immunotherapy were included for analysis. These posts were retrieved from 39 public social media sites. Among patients with advanced BC and their caregivers, treatment perceptions of chemotherapy were more negative (36%) than positive (7%). Most of the patients' posts (71%) mentioned chemotherapy factually without expressing a perception of the treatment. The caregivers' perceptions of treatment were negative in 44%, mixed in 8%, and positive in 7% of posts. In combined patient and caregiver posts, immunotherapy was perceived positively in 47% of posts and negatively in 22% of posts. Caregivers also posted more negative perceptions (37%) of immunotherapy than patients (9%). Negative perceptions of both chemotherapy and immunotherapy were mainly due to side effects and perceived lack of effectiveness.ConclusionsDespite chemotherapy being standard first-line therapy for advanced BC, negative perceptions were identified on social media, particularly among caregivers. Addressing these negative perceptions of treatment may improve treatment adoption. Strengthening support for patients receiving chemotherapy and their caregivers to help them manage side effects and understand the role of chemotherapy in the treatment of advanced BC would potentially enable a more positive experience.

Project description:ContextAccurate 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.ObjectivesThe 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.MethodsThis 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.ResultsMost 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.ConclusionIn 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.

Dataset Information

Patient-Caregiver Dyads' Prognostic Information Preferences and Perceptions in Advanced Cancer.

Context

Objectives

Methods

Results

Conclusion

Publications

Patient-Caregiver Dyads' Prognostic Information Preferences and Perceptions in Advanced Cancer.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets