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To Tell or Not to Tell: Exploring the Preferences and Attitudes of Patients and Family Caregivers on Disclosure of a Cancer-Related Diagnosis and Prognosis

Publication: Journal of Global Oncology

Abstract

Purpose

To understand the preferences and attitudes of patients and family caregivers on disclosure of cancer diagnosis and prognosis in an Indian setting.

Methods

Overall, 250 adult patients with cancer and 250 family caregivers attending the outpatients of a tertiary cancer hospital for the first time were recruited purposively. The mean ages of patients and caregivers were 49.9 years (range, 23-80 years) and 37.9 years (range, 19-67 years), respectively. Separately, they completed prevalidated, close-ended preference questions and were interviewed for open-ended attitude questions.

Results

A total of 250 adult patients (response rate, 47.17% overall, 73.2% in men, and 26.8% in women) and 250 family caregivers (response rate, 40.65% overall, 84.0% in men, and 16.0% in women) participated. Significant differences were observed in the preference to full disclosure of the name of illness between patients (81.2%) and caregivers (34.0%) and with the expected length of survival between patients (72.8%) and caregivers (8.8%; P < .001). The patients felt that knowing a diagnosis and prognosis may help them be prepared, plan additional treatment, anticipate complications, and plan for future and family. The caregivers felt that patients knowing a diagnosis and prognosis may negatively affect the future course of illness and cause patients to experience stress, depression, loss of hope, and confidence.

Conclusion

Patients with cancer preferred full disclosure of their diagnoses and prognoses, whereas the family caregivers preferred nondisclosure of the same to their patients. This novel information obtained through a large study with varied participants from different parts of the country will help formulate communication strategies for cancer care.

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Authors retain all rights in any data supplements associated with their articles

The ideas and opinions expressed in this Data Supplement do not necessarily reflect those of the American Society of Clinical Oncology (ASCO). The mention of any product, service, or therapy in this Data Supplement should not be construed as an endorsement of the products mentioned. It is the responsibility of the treating physician or other health care provider, relying on independent experience and knowledge of the patient, to determine drug dosages and the best treatment for the patient. Readers are advised to check the appropriate medical literature and the product information currently provided by the manufacturer of each drug to be administered to verify approved uses, the dosage, method, and duration of administration, or contraindications. Readers are also encouraged to contact the manufacturer with questions about the features or limitations of any products. ASCO and JGO assume no responsibility for any injury or damage to persons or property arising out of or related to any use of the material contained in this publication or to any errors or omissions. Readers should contact the corresponding author with any comments related to Data Supplement materials.

Authors' Disclosures of Potential Conflicts of Interest

The following represents disclosure information provided by authors of this manuscript. All relationships are considered compensated unless otherwise noted. Relationships are self-held unless noted. I = Immediate Family Member, Inst = My Institution. Relationships may not relate to the subject matter of this manuscript. For more information about ASCO's conflict of interest policy, please refer to www.asco.org/rwc or ascopubs.org/jgo/site/misc/authors.html.
Open Payments is a public database containing information reported by companies about payments made to US-licensed physicians (Open Payments).
No potential conflicts of interest were reported.

Information & Authors

Information

Published In

Journal of Global Oncology
Pages: 1 - 12
PubMed: 31770048

History

Published online: November 26, 2019

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Authors

Affiliations

Arunangshu Ghoshal, MD
Tata Memorial Centre, Mumbai, India
Naveen Salins, MD [email protected]
Kasturba Medical College, Manipal, India
Anuja Damani, MD
Tata Memorial Centre, Mumbai, India
Jayeeta Chowdhury, MPH
India Health Fund, Tata Trusts, Mumbai, India
Arundhati Chitre, MSc
Ramniranjan Jhunjhunwala College of Arts, Science, and Commerce, Mumbai, India
Mary Ann Muckaden, MD, MSc
Tata Memorial Centre, Mumbai, India
Jayita Deodhar, MD, DNB, MRCPsych
Tata Memorial Centre, Mumbai, India
Rajendra Badwe, MS
Tata Memorial Centre, Mumbai, India

Notes

Naveen Salins, MD, Department of Palliative Medicine and Supportive Care, Manipal Comprehensive Cancer Care Centre, Kasturba Medical College, Manipal Academy of Higher Education, Manipal 576104, Karnataka, India; e-mail: [email protected].

Author Contributions

Conception and design: All authors
Collection and assembly of data: Arunangshu Ghoshal, Naveen Salins, Anuja Damani, Mary Ann Muckaden
Data analysis and interpretation: Arunangshu Ghoshal, Naveen Salins, Arundhati Chitre, Mary Ann Muckaden, Rajendra Badwe
Provision of study material or patients: Arunangshu Ghoshal, Naveen Salins, Arundhati Chitre, Mary Ann Muckaden
Administrative support: Arunangshu Ghoshal, Naveen Salins, Jayeeta Chowdhury, Mary Ann Muckaden, Rajendra Badwe
Financial support: Arunangshu Ghoshal, Naveen Salins, Mary Ann Muckaden, Rajendra Badwe
Manuscript writing: All authors
Final approval of manuscript: All authors
Agree to be accountable for all aspects of the work: All authors

Funding Information

Supported by the Tata Memorial Hospital.

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Arunangshu Ghoshal, Naveen Salins, Anuja Damani, Jayeeta Chowdhury, Arundhati Chitre, Mary Ann Muckaden, Jayita Deodhar, Rajendra Badwe
Journal of Global Oncology 2019 :5, 1-12

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