A limited number of studies have examined the involvement of spouses in the decision-making process for genetic testing as well as impact of the actual testing. This report presents data from 40 women with a personal history of breast and/or ovarian cancer who were considering genetic testing for BRCA1 and BRCA2 and their spouses. We examined knowledge and attitudes regarding genetic testing for breast cancer susceptibility, perceptions of the likelihood that their wives (the women) had a BRCA1 or BRCA2 mutation, pros and cons of genetic testing, spouses' satisfaction with their involvement in the decision-making process and additional resources they would find helpful. Knowledge about cancer genetics and genetic testing for BRCA1 and BCA2 was limited among both women and their spouses. Up to one-third of spouses indicated that they would like to avail themselves of additional sources of information about BRCA1 and BRCA2 testing. Most spouses indicated that they thought their wives had a mutation in BRCA1 or BRCA2 and that their wives' breast cancers would recur. Pros of genetic testing were emphasized more than cons among both parties. Overall, spouses were satisfied with their role in the decision-making process. Future interventions to improve the decision-making process regarding genetic testing for breast cancer susceptibility should be undertaken.
IMPORTANCE Body image-related distress (BID) is common among head and neck cancer (HNC) survivors and associated with significant morbidity. Risk factors for HNC-related BID remain poorly characterized because prior research has used outcome measures that fail to fully capture BID as experienced by HNC survivors.OBJECTIVE To assess the association of demographic and oncologic characteristics with HNC-related BID using the Inventory to Measure and Assess imaGe disturbancE-Head & Neck (IMAGE-HN), a validated, multidomain, patient-reported outcome measure of HNC-related BID. DESIGN, SETTING, AND PARTICIPANTSThis cross-sectional study assessed 301 adult survivors of surgically managed HNC at 4 academic medical centers. MAIN OUTCOMES AND MEASURESThe primary outcome measure was IMAGE-HN scores, for which higher scores reflect more severe HNC-related BID. Multivariable linear regression analyses were performed to evaluate the association of patient characteristics with IMAGE-HN global and 4 subdomain (other-oriented appearance concerns, personal dissatisfaction with appearance, distress with functional impairments, and social avoidance) scores. RESULTSOf the 301 participants (212 [70.4%] male; mean [SD] age, 65.3 [11.7] years), 181 (60.1%) underwent free flap reconstruction. Graduation from college (β = −9.6; 95% CI, −17.5 to −1.7) or graduate school (β = −12.6; 95% CI, −21.2 to −3.8) was associated with lower IMAGE-HN social avoidance scores compared with less than a high school education.
Objective: The Inventory to Measure and Assess imaGe disturbance – Head and Neck (IMAGE-HN) is a validated patient-reported outcome measure of head and neck cancer-related body image-related distress (BID). However, the IMAGE-HN score corresponding to clinically relevant BID is unknown. The study objective is to determine the IMAGE-HN cutoff score that identifies head and neck cancer patients with clinically relevant BID.Methods: We conducted a cross-sectional study at six academic medical centers. Individuals ≥18 years old with a history of head and neck cancer treated with definitive intent were included. The primary outcome measure was the IMAGE-HN. A Receiver Operating Characteristic curve analysis was performed to identify the IMAGE-HN score that maximized sensitivity and specificity relative to a Body Image Scale score of ≥10 (which indicates clinically relevant BID in a general oncology population). To confirm the validity of the IMAGE-HN cutoff score, we compared the severity of depressive [Patient Health Questionnaire-9 (PHQ-9)] and anxiety symptoms [Generalized Anxiety Disorder-7 (GAD-7)], and quality of life [University of Washington-QOL (UW-QOL)] in patients with IMAGE-HN scores above and below the cutoff.Results: Of the 250 patients, 70.4% were male and the mean age was 62.3 years. An IMAGE-HN score of ≥22 was the optimal cutoff score relative to a Body Image Scale score of ≥10 and represents a clinically relevant level of head and neck cancer-related BID. Relative to those with an IMAGE-HN score of <22, patients with IMAGE-HN scores of ≥22 had a clinically meaningful increase in symptoms of depression (mean PHQ-9 score difference = 5.8) and anxiety (mean GAD-7 score difference = 4.1) as well as worse physical (mean UW-QOL score difference = 18.9) and social-emotional QOL (mean UW-QOL score difference = 21.5). Using an IMAGE-HN cutoff score ≥22, 28% of patients had clinically relevant BID.Conclusion: An IMAGE-HN score of ≥22 identifies patients with clinically relevant head and neck cancer-related BID. This score may be used to detect patients who could benefit from strategies to manage their distress, select patients for studies evaluating interventions to manage head and neck cancer-related BID, and improve our understanding of the underlying epidemiology of the disorder.
Background: Black men are disproportionately impacted by prostate cancer (PrCa). Current guidelines recommend that all men make informed decisions about whether to be screened for PrCa. Little is known about the barriers and facilitators of informed decision-making (IDM) about PrCa screening in Black men.Methods: We conducted focus groups with a convenience sample of Black men aged 55 to 69 years from a primary care practice (n = 21). Template analysis was used to evaluate themes related to barriers and facilitators of IDM about PrCa screening.Results: IDM was impacted by external factors, intrinsic factors, and personal beliefs about PrCa screening. Family, friends, and clinicians played a paramount role in shaping attitudes about PrCa screening. Distrust of the medical community impaired IDM, and lack of clinician communication about PrCa screening further engendered mistrust. Participants felt they lacked adequate knowledge to make an informed decision about PrCa screening. Identified areas to promote IDM included education on racial disparities, education that screening is a personal choice, and differentiating PrCa screening from colon cancer screening.Conclusions: Our results indicate that Black men may lack the prerequisite information to make informed decisions about PrCa screening, which is notable in light of known PrCa racial disparities. Clinicians can play an important role in facilitating IDM through fostering discussions about the benefits and risks of PrCa screening and educating Black men about racial disparities.
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