abstract:Preferences for Genetic Testing to Identify Hereditary Colorectal Cancer: Perspectives of High-Risk Patients, Community Members, and Clinicians

"...Among community members and patients, the most frequently discussed considerations were the personal impact of GT and family impact, respectively. Among physicians, the most frequently discussed topic was the characteristics of genomic services (e.g., test invasiveness); among genetic counselors, the most frequently discussed topic was evidence and recommendations. A variety of test characteristics were important in decision making about GT. High-risk patients, community members, and health care providers had different priorities. Health care professionals should be aware of differences between their own considerations about GT and those that are important to patients."

Association Between a Name Change from Palliative to Supportive Care and the Timing of Patient Referrals -- The Oncologist

"....Because of the nature of our institution as a comprehensive cancer center
with a large patient volume, the results might not be generalizable to smaller cancer centers and oncology programs in other areas. However, the findings 
of our study regarding a higher overall number of referrals and earlier
referrals in the outpatient setting confirm the findings of our previous
survey study on the attitudes and beliefs of medical oncologists and
midlevel providers regarding the term palliative care. We believe
that these findings and the difference in referral pattern after the
name change are not center specific but rather reflect perceptions
among health care professionals in the U.S. regarding the strong
associations among palliative care, hospice, and end of life."


Conclusion The name change to supportive care was associated with more inpatient referrals and earlier referrals in the outpatient setting. The outpatient setting facilitates earlier access to supportive/palliative care and should be established in more centers.

full free access: A review and characterization of the various perceptions of quality cancer care - Jnl Cancer

"...Patient Perspectives

Thirteen studies reported patient perceptions of quality cancer care from >9000 patients (Table 1). Five of those 13 studies enrolled exclusively patients with breast cancer (N = 1039), whereas 1 study enrolled only patients with colorectal cancer (N = 1067). Four studies included 6905 patients with any cancer or with 1 of several kinds of cancer.

When information was difficult to obtain, trust was limited, or care was not well coordinated, patients experienced reduced quality of care.

 

Patient characteristics associated with unfavorable perceptions of care quality

Three studies identified patient and clinical characteristics that were associated with unfavorable perceptions of quality care. These characteristics included factors related to health status, type of treatment, living conditions, and sociodemographic characteristics of the patients, including age, income level, ethnicity, and language spoken (Table 3)....."

Australian women's awareness of ovarian cancer symptoms, risk and protective factors and estimates of own risk - abstract

Blogger's Note: similar studies and public polls over the past few years, irrespective of country, have noted the same results. As in the past, the conclusion/s beg many questions regarding not only funding/donations but the reality of existing campaigns.

 

Australian women's awareness of ovarian cancer symptoms, risk and protective factors, and estimates of own risk.

Jones SC, Magee CA, Francis J, Luxford K, Gregory P, Zorbas H, Iverson DC.

Centre for Health Initiatives, University of Wollongong, Wollongong, 2522, Australia, sandraj@uow.edu.au.

Abstract

OBJECTIVE: To examine Australian women's perceived risk of ovarian cancer, reasons for perceived risk levels, and knowledge of ovarian cancer symptoms at two timepoints (2003 and 2007).
METHODS: A computer-assisted telephone (CATI) survey of 2,954 Australian women with no history of ovarian cancer was conducted.
RESULTS: Approximately 60% of women perceived their risk of ovarian cancer was similar to other women of their age; 10% indicated an increased risk, and 30% indicated a lower risk. These figures were similar in 2003 and 2007. Logistic regression found that lower income, increased age, being born overseas, and being retired were significantly associated with lower perceived risk (accounted for only 7.5% of the variance). Common reasons for higher perceived risk included family history of ovarian/other cancers, increasing age, and having had other types of cancer or health problems. Reasons for lower than average risk included absence of family history, having a hysterectomy, and having regular Pap smears (indicating confusion between ovarian and cervical cancer). There appeared to be substantial confusion in women's understanding of ovarian cancer symptoms; this was similar in 2003 and 2007.
CONCLUSION: The observed misperceptions and confusion regarding ovarian cancer symptoms and risk factors suggest ongoing public education campaigns are needed to improve knowledge and awareness.

A whisper-game perspective on the family communication of DNA-test results: a retrospective study on the communication process of BRCA1/2-test results

"...Unclassified-variants were most frequently misinterpreted by probands and relatives, and had the largest differences between probands' and relatives' perceptions...."

How well can a screening test predict disease risk? « Genomes Unzipped

abstract: Patients' perceptions of communication with the health care team during chemotherapy for the first recurrence of ovarian cancer

Public Perceptions of Ethical Issues Regarding Adult Predictive Genetic Testing

"Audience members emphasized public education and access to information regarding potential choices, which was different from the emphasis on informed consent and other ethical issues prominent in the literature. Members of the general public emphasized ethical issues that were different than those identified by experts and patients. It is essential that members of the public be included in complex and controversial public policy decisions."