Table 1 Performance objectives, state outcome measures, and their data sources for genomic services
From: Proposed outcomes measures for state public health genomic programs
Outcome category | Performance objective | State outcome measure | Data source |
|---|---|---|---|
1. Top-priority outcomes all states are encouraged to pursue: | |||
Access to services | |||
Increase the proportion of women with a family history of HBOC/LS who receive genetic counseling (reworded version of HP2020 objective) | Number of women with a family history of HBOC/LS who receive genetic counseling | National Health Interview Survey by CDC/NCHS; state BRFSS; state PRAMS cancer module; claims data | |
Increase the proportion of persons with newly diagnosed CRC who receive genetic testing to identify LS (or other familial CRC syndromes (HP2020 objective) | Number of persons with newly diagnosed CRC who receive genetic testing to identify LS (or familial CRC syndromes) | State cancer registries; SEER; state BRFSS | |
Health-care performance | |||
Increase the number of family members (per family) tested for HBOC/LS through cascade screening | Number of family members screened following identification of HBOC/LS mutations | Claims data; data collected from genetics providers in clinics across the state; number of single mutation tests ordered in state as reported by ~5 largest cancer genetic testing laboratories | |
2. Outcomes states can readily perform: | |||
Implementation feasibility | |||
Mechanisms exist for adequate billing and reimbursement of services | Number of health plans with existing reimbursement for services | CPT codes; payer policies; licensure data; hospital credentialing data | |
Hospitals have the infrastructure needed to conduct universal tumor screening (i.e., pathology, tracking, genetic counseling, and follow-up to ensure effectiveness) | Number of hospitals with the following infrastructure: pathology, tracking systems, counselors, follow-up procedures | Survey data | |
Implementation acceptability | |||
Increase the number of providers who are comfortable providing HBOC/LS screening services | Number of providers for each item | Survey data | |
Increase the number of providers who are willing to provide HBOC/LS screening services | Number of providers for each item | Survey data | |
Increase the number of providers who appropriately refer HBOC/LS at-risk families | Number of providers for each item | Survey data | |
Implementation sustainability | |||
Mechanisms for adequate billing and reimbursement of services are maintained over time | Description of existing mechanism for billing and reimbursement | CPT codes; payer policies; licensure data; hospital credentialing data | |
Training programs continue to recruit, train, and graduate genetic service providers | Number of training programs and numbers of applicants/graduates for each type of provider; number of slots being filled; types of applicants (i.e., diversity) | ABGC, ABMG, and ANCC data; training program data | |
Implementation uptake | |||
Increase the number of hospitals/institutions that have implemented tumor screening to identify LS | Number of hospitals | LSSN membership data; survey hospitals on current practices | |
Service safety | |||
Increase appropriate genetic counseling linked with HBOC/LS testing | Frequency of genetic counseling; frequency of HBOC/LS testing | ||
Reduce misinterpreted genetic test results | Quality control of interpreted tests | ||
Reduced inappropriate treatments (pharmacologic, surgical, or other) due to misinterpreted HBOC/LS genetic test results | Number of inappropriate treatments from quality control of interpreted tests | FDA guidelines for testing validity | |
Service timeliness | |||
People can access genetic services in a timely manner | Time from referral | Contact facilities and determine “3rd to available new” appt. times | |
Access to services | |||
Providers are available to perform genetic services including in rural and frontier areas | Number of providers across geographical areas | ABGC, ABMG, and ANCC credentialing and state licensing data | |
Increase the availability of telegenetic services (telemedicine) | Number of originating sites connected to a distant site | Regional telehealth offices | |
Lynch syndrome tumor screening adoption | |||
Increase the number of hospitals/institutions that have implemented tumor screening to identify LS | Number of hospitals/institutions offering tumor screening | LSSN membership data; survey hospitals on current practices | |
Health-care performance | |||
Increase the number of hospitals performing tumor screening that have a tracking system in place | Number of hospitals with a tracking system for tumor screening | LSSN; survey data | |
Public health infrastructure | |||
Increase state’s readiness to implement public health genetics programs | Level of readiness, including willingness and capacity to implement public health genetics | Survey states | |
States have access to reliable information/data to inform program planning and policy | Numbers and types of population-level data inclusive of genomics | BRFSS; cancer registry; Internet access to payer policies; other states’ public health genetics program activities and information | |
Increase partnerships with regional clinics, academic institutions, CDC-funded programs, state programs, nonprofits, insurance groups, and industry to ensure efforts are sustainable | Number of partnerships | Survey states | |
3. Outcomes states can readily perform if data sources are available: | |||
Service equity | |||
Decrease health inequalities (population subgroups who are more vulnerable than others due to social forces) regarding access to genetic testing/counseling | Number of genetic tests/counseling sessions by subgroup | Claims data; BRFSS | |
Access to services | |||
Increase the proportion of individuals diagnosed with potentially heritable cancers who undergo genetic testing | Number of individuals diagnosed with potentially heritable cancers who undergo genetic testing | State cancer registries; survey data | |
4. Aspirational outcomes: a | |||
Implementation feasibility | |||
Health-care providers receive initial training and periodic refresher training to diagnose, treat, and counsel families for HBOC/LS in accordance with the most current NCCN recommendations | Number or percentage of facilities offering initial training on NCCN guidelines for HBOC/LS; number or percentage of providers receiving initial training on NCCN guidelines for HBOC/LS; number of facilities offering periodic refresher training on NCCN guidelines | Training program data; reporting data indicating number of providers trained and efficacy of training on provider knowledge | |
Data sources exist to measure outcomes at multiple levels | Levels need to be identified to determine outcome measures | ||
Implementation penetration | |||
Increase the proportion of providers in rural and frontier areas that screen and refer patients for HBOC/LS | Number or percentage of providers delivering HBOC/LS screening; number of patients screened for HBOC/LS in rural and frontier counties; number who screen positive; percentage of population in rural and frontier areas screened | Survey systems/providers | |
Service efficiency | |||
Increase the proportion of clinics/hospitals/facilities using genetic laboratory utilization services to ensure the most appropriate genetic test(s) are ordered | Proportion of clinics/hospitals/facilities using genetic laboratory utilization services | Time-motion data; survey data; policy review findings | |
Service patient-centeredness | |||
Cancer patient treatment plans include genetic counseling at the time of diagnosis | Number or percentage of facilities that include genetic counseling in treatment plans for new patients; number of providers with additional genetic training; number of new providers with genetic fellowship | Survey or reporting from oncology programs | |
Client satisfaction | |||
Families receive written visit summary information, including risk assessment that can be shared with other family members | Number of facilities that have policies in place for written visit summaries; number of families who reported receiving materials; number or percentage of families who receive a visit summary and information they can share with families | Patient satisfaction surveys; site level policies | |
Increase the proportion of patients who report timely appointments for genetic counseling/testing | Number or percentage of patients who report good or very good levels of satisfaction | Patient satisfaction surveys | |
Client symptomatology | |||
Symptoms or complications from HBOC/LS are eliminated or decreased through early identification and treatment | Number of HBOC or LS associated cancers that are reported after known mutation identification | Chart review data | |
Access to services | |||
Increase number or percentage of women diagnosed at or below age 50 with breast cancer who undergo genetic risk assessment (per NCCN guidelines) | Number or percentage of women diagnosed at or below age 50 with breast cancer who undergo genetic risk assessment (per NCCN guidelines) | Claims data; national surveys | |
Lynch syndrome tumor screening reach | |||
Increase the number of tumors screened for LS at each institution | Number of tumors screened for LS by institution | LSSN membership data | |
All newly diagnosed patients with CRC are screened for LS | Number of CRC patients screened for LS | Proportion of patients diagnosed with CRC who have received screening | |
Health-care performance | |||
Decreased incidence of HBOC/LS | Incidence rate of HBOC/LS | Cancer registries; SEER; claims data | |
Decreased morbidity and mortality of HBOC and LS | Morbidity and mortality rate of HBOC and LS | Cancer registries; SEER; claims data | |
Public health infrastructure | |||
Initiate bidirectional reporting by identifying individuals at increased risk for hereditary cancer through personal history in cancer registry | Number of state cancer registries that offer bidirectional reporting; number of investigations conducted/year; number of hospital cancer registries that have the capacity for bidirectional reporting | Cancer registries | |
