Although guidelines recommend in-person counseling before BRCA1/BRCA2 gene testing, genetic counseling is increasingly offered by telephone. As genomic testing becomes more common, evaluating ...alternative delivery approaches becomes increasingly salient. We tested whether telephone delivery of BRCA1/2 genetic counseling was noninferior to in-person delivery.
Participants (women age 21 to 85 years who did not have newly diagnosed or metastatic cancer and lived within a study site catchment area) were randomly assigned to usual care (UC; n = 334) or telephone counseling (TC; n = 335). UC participants received in-person pre- and post-test counseling; TC participants completed all counseling by telephone. Primary outcomes were knowledge, satisfaction, decision conflict, distress, and quality of life; secondary outcomes were equivalence of BRCA1/2 test uptake and costs of delivering TC versus UC.
TC was noninferior to UC on all primary outcomes. At 2 weeks after pretest counseling, knowledge (d = 0.03; lower bound of 97.5% CI, -0.61), perceived stress (d = -0.12; upper bound of 97.5% CI, 0.21), and satisfaction (d = -0.16; lower bound of 97.5% CI, -0.70) had group differences and confidence intervals that did not cross their 1-point noninferiority limits. Decision conflict (d = 1.1; upper bound of 97.5% CI, 3.3) and cancer distress (d = -1.6; upper bound of 97.5% CI, 0.27) did not cross their 4-point noninferiority limit. Results were comparable at 3 months. TC was not equivalent to UC on BRCA1/2 test uptake (UC, 90.1%; TC, 84.2%). TC yielded cost savings of $114 per patient.
Genetic counseling can be effectively and efficiently delivered via telephone to increase access and decrease costs.
South Asians are a rapidly growing population in the United States. Breast cancer is a major concern among South Asian American women, who are an understudied population. We established the South ...Asian Breast Cancer (SABCa) study in New Jersey during early 2020 to gain insights into their breast cancer-related health attitudes. Shortly after we started planning for the study, the COVID-19 disease spread throughout the world. In this paper, we describe our experiences and lessons learned from recruiting study participants by partnering with New Jersey's community organizations during the COVID-19 pandemic. We used a cross-sectional design. We contacted 12 community organizations and 7 (58%) disseminated our study information. However, these organizations became considerably busy with pandemic-related needs. Therefore, we had to pivot to alternative recruitment strategies through community radio, Rutgers Cancer Institute of New Jersey's Community Outreach and Engagement Program, and Rutgers Cooperative Extension's community health programs. We recruited participants through these alternative strategies, obtained written informed consent, and collected demographic information using a structured survey. Twenty five women expressed interest in the study, of which 22 (88%) participated. Nine (41%) participants learned about the study through the radio, 5 (23%) through these participants, 1 (4.5%) through a non-radio community organization, and 7 (32%) through community health programs. Two (9%) participants heard about the study from their spouse. All participants were born outside the US, their average age was 52.4 years (range: 39-72 years), and they have lived in the US for an average of 26 years (range: 5-51 years). Pivoting to alternative strategies were crucial for successful recruitment. Findings suggest the significant potential of broadcast media for community-based recruitment. Family dynamics and the community's trust in our partners also encouraged participation. Such strategies must be considered when working with understudied populations.
Celotno besedilo
Dostopno za:
DOBA, IZUM, KILJ, NUK, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK
Introduction: DNA sequencing advances through next-generation sequencing (NGS) and several practice changing events, have led to shifting paradigms for inherited cancer predisposition testing. These ...changes necessitated a means by which to maximize health benefits without unnecessarily inflating healthcare costs and exacerbating health disparities.
Areas covered: NGS-based tests encompass multi-gene panel tests, whole exome sequencing, and whole genome sequencing, all of which test for multiple genes simultaneously, compared to prior sequencing practices through which testing was performed sequentially for one or two genes. Taking an ecological approach, this article synthesizes the current literature to consider the broad impact of these advances from the individual patient-, interpersonal-, organizational-, community- and policy-levels. Furthermore, the authors describe how multi-level factors that impact genetic testing and follow-up care reveal great potential to widen existing health disparities if these issues are not addressed.
Expert commentary: As we consider ways to maximize patient benefit from testing in a cost effective manner, it is important to consider perspectives from multiple levels. This information is needed to guide the development of interventions such that the promise of genomic testing may be realized by all populations, regardless of race, ethnicity and ability to pay.
Rutgers Cancer Institute of New Jersey (New Brunswick, NJ) is committed to providing cancer prevention education, outreach, and clinical services in our catchment area (CA). Our approach to cancer ...prevention includes ongoing surveillance to better understand the CA cancer burden and opportunities for intervention, leveraging community partnerships, and vigorously engaging diverse communities to understand and address their needs. This approach considers individual, sociocultural, environmental, biologic, system, and policy-level factors with an equity lens. Rutgers Cancer Institute has had substantial impact on cancer prevention (risk reduction, screening, and early detection) over the past five years, including the development of a CA data dashboard advancing implementation of evidence-based cancer control actions by leveraging 357 healthcare and community partners (with 522 partner sites). Furthermore, we provided professional education (attendance 19,397), technical assistance to community organizations (1,875 support sessions), educational outreach for community members (87,000+ through direct education), facilitated access to preventive services (e.g., 60,000+ screenings resulting in the detection of >2,000 malignant and premalignant lesions), contributed to advances in health policy and population-level improvements in risk reduction behaviors, screening, and incidence. With longer-term data, we will assess the impact of our cancer prevention efforts on cancer incidence, downward shifts in stage at diagnosis, mortality, and disparities.
Abstract
Background
Black patients with cancer are less likely to receive precision cancer treatments than White patients and are underrepresented in clinical trials. To address these disparities, ...the study aimed to develop and pilot‐test a digital intervention to improve Black patients’ knowledge about precision oncology and clinical trials, empower patients to increase relevant discussion, and promote informed decision‐making.
Methods
A community‐engaged approach, including a Community Advisory Board and two rounds of key informant interviews with Black patients with cancer, their relatives, and providers (
n
= 48) was used to develop and refine the multimedia digital intervention. Thematic analysis was conducted for qualitative data. The intervention was then pilot‐tested with 30 Black patients with cancer to assess feasibility, acceptability, appropriateness, knowledge, decision self‐efficacy, and patient empowerment; Wilcoxon matched pairs signed‐rank test was used to analyze quantitative data.
Results
The digital tool was found to be feasible, acceptable, and culturally appropriate. Key informants shared their preferences and recommendations for the digital intervention and helped improve cultural appropriateness through user and usability testing. In the pilot test, appreciable improvement was found in participants’ knowledge about precision oncology (z = –2.04,
p
= .052), knowledge about clinical trials (z = –3.14,
p
= .001), and decisional self‐efficacy for targeted/immune therapy (z = –1.96,
p
= .0495).
Conclusions
The digital intervention could be a promising interactive decision‐support tool for increasing Black patients’ participation in clinical trials and receipt of precision treatments, including immunotherapy. Its use in clinical practice may reduce disparities in oncology care and research.
Plain Language Summary
We developed a digital interactive decision support tool for Black patients with cancer by convening a Community Advisory Board and conducting interviews with Black patients with cancer, their relatives, and providers.
We then pilot‐tested the intervention with newly diagnosed Black patients with cancer and found appreciable improvement in participants’ knowledge about precision oncology, knowledge about clinical trials, and confidence in making decisions for targeted/immune therapy.
Our digital tool has great potential to be an affordable and scalable solution for empowering and educating Black patients with cancer to help them make informed decisions about precision oncology and clinical trials and ultimately reducing racial disparities.
We developed and pilot‐tested a digital intervention to promote informed decision‐making regarding precision oncology and clinical trial participation among Black patients with cancer. Key informant interviews and pilot‐testing suggest that the intervention could be a promising interactive decision‐support tool.
Cancer survivors increasingly report financial hardship as a consequence of the high cost of cancer care, yet the financial experience of rural cancer survivors remains largely unstudied. The purpose ...of this study was to investigate potential rural disparities in the likelihood of financial hardship and nonadherence to surveillance colonoscopy.
Individuals diagnosed with localized or regional colorectal cancer between 2004 and 2012 were ascertained by the population-based New Mexico Tumor Registry. Participants completed a mailed questionnaire or telephone survey about their colorectal cancer survivorship experience, including treatment-related financial hardship and receipt of surveillance colonoscopy. Multivariable logistic regression was used to estimate adjusted odds ratios (ORs) and 95% confidence intervals (CIs).
Compared with urban colorectal cancer survivors (
= 168), rural colorectal cancer survivors (
= 109) were slightly older; more likely to be married (65% vs. 59%) and have an annual income <$30,000 (37% vs. 27%); and less likely to be employed (35% vs. 41%), have a college degree (28% vs. 38%), or a high level of health literacy (39% vs. 51%). Rural survivors were twice as likely as urban survivors to report treatment-related financial hardship (OR, 1.86; 95% CI, 1.06-3.28) and nonadherence to surveillance colonoscopy guidelines (OR, 2.28; 95% CI, 1.07-4.85). In addition, financial hardship was independently associated with nonadherence to surveillance colonoscopy (OR, 2.17; 95% CI, 1.01-4.85).
Substantial rural disparities in the likelihood of financial hardship and nonadherence to surveillance colonoscopy exist.
Treatment-related financial hardship among rural colorectal cancer survivors may negatively affect adherence to guideline-recommended follow-up care.
The current article details a position statement and recommendations for future research and practice on planning and implementation intentions in health contexts endorsed by the Synergy Expert ...Group. The group comprised world-leading researchers in health and social psychology and behavioural medicine who convened to discuss priority issues in planning interventions in health contexts and develop a set of recommendations for future research and practice. The expert group adopted a nominal groups approach and voting system to elicit and structure priority issues in planning interventions and implementation intentions research. Forty-two priority issues identified in initial discussions were further condensed to 18 key issues, including definitions of planning and implementation intentions and 17 priority research areas. Each issue was subjected to voting for consensus among group members and formed the basis of the position statement and recommendations. Specifically, the expert group endorsed statements and recommendations in the following areas: generic definition of planning and specific definition of implementation intentions, recommendations for better testing of mechanisms, guidance on testing the effects of moderators of planning interventions, recommendations on the social aspects of planning interventions, identification of the preconditions that moderate effectiveness of planning interventions and recommendations for research on how people use plans.
Breast cancer incidence is increasing among Asian Indian and Pakistani women living in the United States. We examined the characteristics of breast cancer in Asian Indian and Pakistani American ...(AIPA) and non‐Hispanic white (NHW) women using data from the surveillance, epidemiology and end results (SEER) program. Breast cancer incidence rates were estimated via segmented Poisson regression using data between 1990 and 2014 from SEER 9 registries, including New Jersey and California. Disease characteristics, treatment and survival information between 2000 and 2016 for 4900 AIPA and 482 250 NHW cases diagnosed after age 18 were obtained from SEER 18 registries and compared using descriptive analyses and multivariable competing risk proportional hazards regression. Breast cancer incidence was lower in AIPA than NHW women, increased with age and the rate of increase declined after age of 46 years. AIPA women were diagnosed at significantly younger age (mean (SD) = 54.5 (13.3) years) than NHW women (mean (SD) = 62 (14) years, P < .0001) and were more likely than NHW cases (P < .0001) to have regional or distant stage, higher grade, estrogen receptor‐negative, progesterone receptor‐negative, triple‐negative or human epidermal growth factor receptor 2‐enriched tumors, subcutaneous or total mastectomy, and lower cumulative incidence of death due to breast cancer (hazard ratio = 0.79, 95% CI: 0.72‐0.86, P < .0001). AIPA had shorter median follow‐up (52 months) than NHW cases (77 months). Breast cancer in AIPA women has unique characteristics that need to be further studied along with a comprehensive evaluation of their follow‐up patterns.
What's new?
While breast cancer incidence among Asian Indian and Pakistani American (AIPA) women is increasing, incidence patterns and breast cancer survival in this population remain understudied. Here, analyses of data for 1990‐2014 in the SEER database show that breast cancer incidence among AIPA women increased with age, though the rate of increase declined after age 46. Relative to non‐Hispanic white women, AIPA women were younger at diagnosis and exhibited more aggressive clinical‐pathological characteristics but had shorter median follow‐up time and lower disease‐specific mortality. Comprehensive studies of breast cancer risk factors in AIPA women and their follow‐up care are warranted.
CONTEXT About 2% of all colorectal cancer occurs in the context of the autosomal dominantly inherited Lynch syndrome, which is due to mutations in mismatch repair genes. Potential risk-reducing ...interventions are recommended for individuals known to have these mutations. OBJECTIVES To review cancer risks and data on screening efficacy in the context of Lynch syndrome (hereditary nonpolyposis colorectal cancer) and to provide recommendations for clinical management for affected families, based on available evidence and expert opinion. DATA SOURCES AND STUDY SELECTION A systematic literature search using PubMed and the Cochrane Database of Systematic Reviews, reference list review of retrieved articles, manual searches of relevant articles, and direct communication with other researchers in the field. Search terms included hereditary non-polyposis colon cancer, Lynch syndrome, microsatellite instability, mismatch repair genes, and terms related to the biology of Lynch syndrome. Only peer-reviewed, full-text, English-language articles concerning human subjects published between January 1, 1996, and February 2006 were included. The US Preventive Services Task Force's 2-tier system was adapted to describe the quality of evidence and to assign strength to the recommendations for each guideline. EVIDENCE SYNTHESIS The evidence supports colonoscopic surveillance for individuals with Lynch syndrome, although the optimal age at initiation and frequency of examinations is unresolved. Colonoscopy is recommended every 1 to 2 years starting at ages 20 to 25 years (age 30 years for those with MSH6 mutations), or 10 years younger than the youngest age of the person diagnosed in the family. While fully acknowledging absence of demonstrated efficacy, the following are also recommended annually: endometrial sampling and transvaginal ultrasound of the uterus and ovaries (ages 30-35 years); urinalysis with cytology (ages 25-35 years); history, examination, review of systems, education and genetic counseling regarding Lynch syndrome (age 21 years). Regular colonoscopy was favored for at-risk persons without colorectal neoplasia. For individuals who will undergo surgical resection of a colon cancer, subtotal colectomy is favored. Evidence supports the efficacy of prophylactic hysterectomy and oophorectomy. CONCLUSIONS The past 10 years have seen major advances in the understanding of Lynch syndrome. Current recommendations regarding cancer screening and prevention require careful consultation between clinicians, clinical cancer genetic services, and well-informed patients.
The ongoing integration of cancer genomic testing into routine clinical care has led to increased demand for cancer genetic services. To meet this demand, there is an urgent need to enhance the ...accessibility and reach of such services, while ensuring comparable care delivery outcomes. This randomized trial compared 1-year outcomes for telephone genetic counseling with in-person counseling among women at risk of hereditary breast and/or ovarian cancer living in geographically diverse areas.
Using population-based sampling, women at increased risk of hereditary breast and/or ovarian cancer were randomly assigned to in-person (n = 495) or telephone genetic counseling (n = 493). One-sided 97.5% CIs were used to estimate the noninferiority effects of telephone counseling on 1-year psychosocial, decision-making, and quality-of-life outcomes. Differences in test-uptake proportions for determining equivalency of a 10% prespecified margin were evaluated by 95% CIs.
At the 1-year follow-up, telephone counseling was noninferior to in-person counseling for all psychosocial and informed decision-making outcomes: anxiety (difference d, 0.08; upper bound 97.5% CI, 0.45), cancer-specific distress (d, 0.66; upper bound 97.5% CI, 2.28), perceived personal control (d, -0.01; lower bound 97.5% CI, -0.06), and decisional conflict (d, -0.12; upper bound 97.5% CI, 2.03). Test uptake was lower for telephone counseling (27.9%) than in-person counseling (37.3%), with the difference of 9.4% (95% CI, 2.2% to 16.8%). Uptake was appreciably higher for rural compared with urban dwellers in both counseling arms.
Although telephone counseling led to lower testing uptake, our findings suggest that telephone counseling can be effectively used to increase reach and access without long-term adverse psychosocial consequences. Further work is needed to determine long-term adherence to risk management guidelines and effective strategies to boost utilization of primary and secondary preventive strategies.
PDF
