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Improving our model of cascade testing for hereditary cancer risk by leveraging patient peer support: a concept report.

ABSTRACT: Consensus and evidence suggest that cascade testing is critical to achieve the promise of cancer genetic testing. However, barriers to cascade testing include effective family communication of genetic risk information and family members' ability to cope with genetic risk. These barriers are further complicated by the developmental needs of unaffected family members during critical windows for family communication and adaptation. Peer support could address these barriers. We provide two illustrative examples of ongoing BRCA1/2-related clinical trials that apply a peer support model to improve family communication and functioning. Peer support can augment currently available genetic services to facilitate adjustment to and effective use of cancer genetic risk information. Importantly, this scalable approach can address the presence of cancer risk within families across multiple developmental stages. This applies a family-centered perspective that accommodates all potentially at-risk relatives. This peer support model can be further applied to emerging topics in clinical genetics to expand reach and impact.

SUBMITTER: O'Neill SC

PROVIDER: S-EPMC8474818 | biostudies-literature | 2021 Sep

REPOSITORIES: biostudies-literature

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Improving our model of cascade testing for hereditary cancer risk by leveraging patient peer support: a concept report.

O'Neill Suzanne C SC Hamilton Jada G JG Conley Claire C CC Peshkin Beth N BN Sacca Rosalba R McDonnell Glynnis A GA Isaacs Claudine C Robson Mark E ME Tercyak Kenneth P KP

Hereditary cancer in clinical practice 20210926 1

Consensus and evidence suggest that cascade testing is critical to achieve the promise of cancer genetic testing. However, barriers to cascade testing include effective family communication of genetic risk information and family members' ability to cope with genetic risk. These barriers are further complicated by the developmental needs of unaffected family members during critical windows for family communication and adaptation. Peer support could address these barriers. We provide two illustrat ...[more]

PMID: 34565430

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Project description:BackgroundOnline peer support forums require oversight to ensure they remain safe and therapeutic. As online communities grow, they place a greater burden on their human moderators, which increases the likelihood that people at risk may be overlooked. This study evaluated the potential for machine learning to assist online peer support by directing moderators' attention where it is most needed.ObjectiveThis study aimed to evaluate the accuracy of an automated triage system and the extent to which it influences moderator behavior.MethodsA machine learning classifier was trained to prioritize forum messages as green, amber, red, or crisis depending on how urgently they require attention from a moderator. This was then launched as a set of widgets injected into a popular online peer support forum hosted by ReachOut.com, an Australian Web-based youth mental health service that aims to intervene early in the onset of mental health problems in young people. The accuracy of the system was evaluated using a holdout test set of manually prioritized messages. The impact on moderator behavior was measured as response ratio and response latency, that is, the proportion of messages that receive at least one reply from a moderator and how long it took for these replies to be made. These measures were compared across 3 periods: before launch, after an informal launch, and after a formal launch accompanied by training.ResultsThe algorithm achieved 84% f-measure in identifying content that required a moderator response. Between prelaunch and post-training periods, response ratios increased by 0.9, 4.4, and 10.5 percentage points for messages labelled as crisis, red, and green, respectively, but decreased by 5.0 percentage points for amber messages. Logistic regression indicated that the triage system was a significant contributor to response ratios for green, amber, and red messages, but not for crisis messages. Response latency was significantly reduced (P<.001), between the same periods, by factors of 80%, 80%, 77%, and 12% for crisis, red, amber, and green messages, respectively. Regression analysis indicated that the triage system made a significant and unique contribution to reducing the time taken to respond to green, amber, and red messages, but not to crisis messages, after accounting for moderator and community activity.ConclusionsThe triage system was generally accurate, and moderators were largely in agreement with how messages were prioritized. It had a modest effect on response ratios, primarily because moderators were already more likely to respond to high priority content before the introduction of triage. However, it significantly and substantially reduced the time taken for moderators to respond to prioritized content. Further evaluations are needed to assess the impact of mistakes made by the triage algorithm and how changes to moderator responsiveness impact the well-being of forum members.

Project description:Hereditary cancer syndromes constitute approximately 10% of all cancers. Cascade testing involves testing of at-risk relatives to determine if they carry the familial pathogenic variant. Despite growing efforts targeted at improving cascade testing uptake, current literature continues to reflect poor rates of uptake, typically below 30%. This study aims to systematically review current literature on intervention strategies to improve cascade testing, assess the quality of intervention descriptions and evaluate the implementation outcomes of listed interventions. We searched major databases using keywords and subject heading of "cascade testing". Interventions proposed in each study were classified according to the Effective Practice and Organization of Care (EPOC) taxonomy. Quality of intervention description was assessed using the TIDieR checklist, and evaluation of implementation outcomes was performed using Proctor's Implementation Outcomes Framework. Improvements in rates of genetic testing uptake was seen in interventions across the different EPOC taxonomy strategies. The average TIDieR score was 7.3 out of 12. Items least reported include modifications (18.5%), plans to assess fidelity/adherence (7.4%) and actual assessment of fidelity/adherence (7.4%). An average of 2.9 out of 8 aspects of implementation outcomes were examined. The most poorly reported outcomes were cost, fidelity and sustainability, with only 3.7% of studies reporting them. Most interventions have demonstrated success in improving cascade testing uptake. Uptake of cascade testing was highest with delivery arrangement (68%). However, the quality of description of interventions and assessment of implementation outcomes are often suboptimal, hindering their replication and implementation downstream. Therefore, further adoption of standardized guidelines in reporting of interventions and formal assessment of implementation outcomes may help promote translation of these interventions into routine practice.

Project description:ImportancePatients treated in emergency departments (EDs) for opioid overdose often need drug treatment yet are rarely linked to services after discharge. Emergency department-based peer support is a promising approach for promoting treatment linkage, but evidence of its effectiveness is lacking.ObjectiveTo examine the association of the Opioid Overdose Recovery Program (OORP), an ED peer recovery support service, with postdischarge addiction treatment initiation, repeat overdose, and acute care utilization.Design, setting, and participantsThis intention-to-treat retrospective cohort study used 2014 to 2020 New Jersey Medicaid data for Medicaid enrollees aged 18 to 64 years who were treated for nonfatal opioid overdose from January 2015 to June 2020 at 70 New Jersey acute care hospitals. Data were analyzed from August 2022 to November 2023.ExposureHospital OORP implementation.Main outcomes and measuresThe primary outcome was medication for opioid use disorder (MOUD) initiation within 60 days of discharge. Secondary outcomes included psychosocial treatment initiation, medically treated drug overdoses, and all-cause acute care visits after discharge. An event study design was used to compare 180-day outcomes between patients treated in OORP hospitals and those treated in non-OORP hospitals. Analyses adjusted for patient demographics, comorbidities, and prior service use and for community-level sociodemographics and drug treatment access.ResultsA total of 12 046 individuals were included in the study (62.0% male). Preimplementation outcome trends were similar for patients treated in OORP and non-OORP hospitals. Implementation of the OORP was associated with an increase of 0.034 (95% CI, 0.004-0.064) in the probability of 60-day MOUD initiation in the half-year after implementation, representing a 45% increase above the preimplementation mean probability of 0.075 (95% CI, 0.066-0.084). Program implementation was associated with fewer repeat medically treated overdoses 4 half-years (-0.086; 95% CI, -0.154 to -0.018) and 5 half-years (-0.106; 95% CI, -0.184 to -0.028) after implementation. Results differed slightly depending on the reference period used, and hospital-specific models showed substantial heterogeneity in program outcomes across facilities.Conclusions and relevanceIn this cohort study of patients treated for opioid overdose, OORP implementation was associated with an increase in MOUD initiation and a decrease in repeat medically treated overdoses. The large variation in outcomes across hospitals suggests that treatment effects were heterogeneous and may depend on factors such as implementation success, program embeddedness, and availability of other hospital- and community-based OUD services.

Project description:Breast, colorectal, ovarian, and endometrial cancers constitute approximately 30% of newly diagnosed cancer cases in Switzerland and affect more than 12,000 individuals annually. Several hundred of these patients are likely to carry known genetic mutations associated with HBOC or LS. Genetic testing for hereditary susceptibility to cancer can prevent many cancer deaths through early identification and engagement in high-risk management care that involves intensive surveillance, chemoprevention and/or prophylactic surgery. However, current rates of genetic testing indicate that many Swiss mutation carriers and their family members do not use cancer genetic services (counseling and/or testing), either due to lack of coordination of care or due to lack of communication about the mutation among family members. Cascade screening identifies and tests family members of a known mutation carrier. It determines whether asymptomatic family members are carriers of the identified mutation and proposes management options to reduce harmful outcomes. Robust evidence of basic science and descriptive population-based studies in Switzerland support the necessity of cascade screening for HBOC and LS. However, translation of this knowledge into public health interventions is lacking. Specific Aims of the CASCADE study are: 1. Survey Index Patients diagnosed with HBOC or LS from clinic-based genetic testing records and determine their cancer status and surveillance practices; needs for coordination of medical care; psychosocial needs; patient-provider and patient-family communication needs; quality of life; willingness to serve as advocates for cancer genetic services for blood relatives. 2. Survey first- and second-degree relatives, and first cousins identified from pedigrees and/or family history records of HBOC and LS Index Patients and determine their cancer and mutation status; cancer surveillance practices; needs for coordination of medical care; barriers and facilitators to using cancer genetic services; psychosocial needs; patient-provider and patient-family communication needs; quality of life; willingness to participate in a study designed to increase use of cancer genetic services. 3. Explore the influence of patient-provider communication about genetic cancer risk on patient-family communication and the acceptability of a family-based communication, coping, and decision support intervention with focus group(s) of mutation carriers and blood relatives.

Dataset Information

Improving our model of cascade testing for hereditary cancer risk by leveraging patient peer support: a concept report.

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Improving our model of cascade testing for hereditary cancer risk by leveraging patient peer support: a concept report.

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