Health Information Wanted and Obtained from Doctors/nurses: a Comparison of Chinese Cancer Patients and Family Caregivers

Overview

Journal Support Care Cancer

Specialties Critical Care
Oncology

Date 2015 Apr 10

PMID 25855039

Citations 5

Authors

Bo Xie

Zhaohui Su

Yihao Liu

Mo Wang

Ming Zhang

Affiliations

Soon will be listed here.

Abstract

Purpose: To assess and compare health information wanted and obtained from doctors/nurses by Chinese cancer patients and family caregivers.

Research Questions: (1) What are the instrument's psychometrics in Chinese cancer patients and family caregivers? (2) How might Chinese cancer patients and family caregivers differ in the amount of different types of health information they want to have? and (3) How might Chinese cancer patients and family caregivers differ in the amount of different types of information they were able to obtain from doctors/nurses?

Methods: This was a cross-sectional study using a paper-pen questionnaire. A total of 198 participants (79 cancer patients; 119 family caregivers) from a general hospital in Sichuan, China completed the instrument in March 2014.

Results: The instrument has excellent reliability and validity. Participants wanted to have a wide range of health information, including but not limited to information about diagnosis or treatment. Across all types of information, participants obtained from doctors/nurses significantly less than what they wanted. The discrepancy between information wanted and obtained varied across different types of information. The discrepancy was largest for information about complementary and alternative medicine (CAM) and psychosocial aspects and smallest for information about diagnosis and self-care. Patients and caregivers did not differ in the amount of different types of information they wanted or obtained from medical professionals.

Conclusions: There is a great need for providing more information to both patients and their families, particularly information about CAM and psychosocial aspects.

Citing Articles

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Employment changes among Chinese family caregivers of long-term cancer survivors.

Liu S, Su M, Yao N, Zhang N, Wang J, Anderson R BMC Public Health. 2020; 20(1):1787.

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Xie B, Champion J, Kwak J, Fleischmann K J Med Internet Res. 2018; 20(12):e11682.

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Xie B, Su Z, Liu Y, Wang M, Zhang M Health Expect. 2016; 20(4):665-674.

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Nie L, Xie B, Yang Y, Shan Y Telemed J E Health. 2016; 22(7):614-9.

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References

Chen W, Zheng R, Zhang S, Zhao P, Zeng H, Zou X . Annual report on status of cancer in China, 2010. Chin J Cancer Res. 2014; 26(1):48-58. PMC: 3937758. DOI: 10.3978/j.issn.1000-9604.2014.01.08. View

Ende J, Kazis L, Ash A, Moskowitz M . Measuring patients' desire for autonomy: decision making and information-seeking preferences among medical patients. J Gen Intern Med. 1989; 4(1):23-30. DOI: 10.1007/BF02596485. View

Nilchaikovit T, Hill J, Holland J . The effects of culture on illness behavior and medical care. Asian and American differences. Gen Hosp Psychiatry. 1993; 15(1):41-50. DOI: 10.1016/0163-8343(93)90090-b. View

Jiang Y, Liu C, Li J, Huang M, Yao W, Zhang R . Different attitudes of Chinese patients and their families toward truth telling of different stages of cancer. Psychooncology. 2007; 16(10):928-36. DOI: 10.1002/pon.1156. View

Leydon G, Boulton M, Moynihan C, Jones A, Mossman J, Boudioni M . Cancer patients' information needs and information seeking behaviour: in depth interview study. BMJ. 2000; 320(7239):909-13. PMC: 27332. DOI: 10.1136/bmj.320.7239.909. View

Tang S, Liu T, Lai M, Liu L, Chen C, Koong S . Congruence of knowledge, experiences, and preferences for disclosure of diagnosis and prognosis between terminally-ill cancer patients and their family caregivers in Taiwan. Cancer Invest. 2006; 24(4):360-6. DOI: 10.1080/07357900600705284. View

Henderson A, Chien W . Information needs of Hong Kong Chinese patients undergoing surgery. J Clin Nurs. 2004; 13(8):960-6. DOI: 10.1111/j.1365-2702.2004.01004.x. View

Laine C, Davidoff F, Lewis C, Nelson E, Nelson E, Kessler R . Important elements of outpatient care: a comparison of patients' and physicians' opinions. Ann Intern Med. 1996; 125(8):640-5. DOI: 10.7326/0003-4819-125-8-199610150-00003. View

Xie B . Older adults' health information wants in the internet age: implications for patient-provider relationships. J Health Commun. 2009; 14(6):510-24. DOI: 10.1080/10810730903089614. View

10.

Lee Y, Francis K, Walker J, Lee S . What are the information needs of Chinese breast cancer patients receiving chemotherapy?. Eur J Oncol Nurs. 2004; 8(3):224-33. DOI: 10.1016/j.ejon.2003.12.006. View

11.

Xie B, Wang M, Feldman R, Zhou L . Internet use frequency and patient-centered care: measuring patient preferences for participation using the health information wants questionnaire. J Med Internet Res. 2013; 15(7):e132. PMC: 3714005. DOI: 10.2196/jmir.2615. View

12.

Dai Q . Informed consent in China: status quo and its future. Med Law Int. 2004; 6(1):53-71. DOI: 10.1177/096853320300600104. View

13.

Heisler M, Vijan S, Anderson R, Ubel P, Bernstein S, Hofer T . When do patients and their physicians agree on diabetes treatment goals and strategies, and what difference does it make?. J Gen Intern Med. 2003; 18(11):893-902. PMC: 1494939. DOI: 10.1046/j.1525-1497.2003.21132.x. View

14.

Noone I, Crowe M, Pillay I, OKeeffe S . Telling the truth about cancer: views of elderly patients and their relatives. Ir Med J. 2000; 93(4):104-5. View

15.

Xie B, Wang M, Feldman R, Zhou L . Exploring older and younger adults' preferences for health information and participation in decision making using the Health Information Wants Questionnaire (HIWQ). Health Expect. 2012; 17(6):795-808. PMC: 5060927. DOI: 10.1111/j.1369-7625.2012.00804.x. View

16.

Mystakidou K, Parpa E, Tsilila E, Katsouda E, Vlahos L . Cancer information disclosure in different cultural contexts. Support Care Cancer. 2004; 12(3):147-54. DOI: 10.1007/s00520-003-0552-7. View

17.

Echlin K, Rees C . Information needs and information-seeking behaviors of men with prostate cancer and their partners: a review of the literature. Cancer Nurs. 2002; 25(1):35-41. DOI: 10.1097/00002820-200202000-00008. View

18.

So W, Chan C, Choi K, Wan R, Mak S, Chair S . Perceived unmet needs and health-related quality of life of Chinese cancer survivors at 1 year after treatment. Cancer Nurs. 2012; 36(3):E23-32. DOI: 10.1097/NCC.0b013e318263f28e. View

19.

Charles C, Gafni A, Whelan T . Decision-making in the physician-patient encounter: revisiting the shared treatment decision-making model. Soc Sci Med. 1999; 49(5):651-61. DOI: 10.1016/s0277-9536(99)00145-8. View

20.

Epstein R, Alper B, Quill T . Communicating evidence for participatory decision making. JAMA. 2004; 291(19):2359-66. DOI: 10.1001/jama.291.19.2359. View