A B S T R A C T PurposeImmunohistochemistry (IHC) for MLH1, MSH2, MSH6, and PMS2 protein expression and microsatellite instability (MSI) are well-established tools to screen for Lynch syndrome (LS). Although many cancer centers have adopted these tools as reflex LS screening after a colorectal cancer diagnosis, the standard of care has not been established, and no formal studies have described this practice in the United States. The purpose of this study was to describe prevalent practices regarding IHC/MSI reflex testing for LS in the United States and the subsequent follow-up of abnormal results. Materials and MethodsA 12-item survey was developed after interdisciplinary expert input. A letter of invitation, survey, and online-survey option were sent to a contact at each cancer program. A modified Dillman strategy was used to maximize the response rate. The sample included 39 National Cancer Institute-designated Comprehensive Cancer Centers (NCI-CCCs), 50 randomly selected American College of Surgeons-accredited Community Hospital Comprehensive Cancer Programs (COMPs), and 50 Community Hospital Cancer Programs (CHCPs). ResultsThe overall response rate was 50%. Seventy-one percent of NCI-CCCs, 36% of COMPs, and 15% of CHCPs were conducting reflex IHC/MSI for LS; 48% of the programs used IHC, 14% of the programs used MSI, and 38% of the programs used both IHC and MSI. One program used a presurgical information packet, four programs offered an opt-out option, and none of the programs required written consent. ConclusionAlthough most NCI-CCCs use reflex IHC/MSI to screen for LS, this practice is not well-adopted by community hospitals. These findings may indicate an emerging standard of care and diffusion from NCI-CCC to community cancer programs. Our findings also described an important trend away from requiring written patient consent for screening.

Background Individuals with ostomies experience extensive changes in health-related quality of life (HRQOL) and daily routine. Patients and families are typically forced to use trial-and-error to improve self-management. Methods This is a longitudinal one-group design pilot study of a five-session ostomy self-care curriculum based on the Chronic Care Model to improve HRQOL and self-management for cancer survivors with ostomies. Participants were surveyed to evaluate each session. Multiple instruments were administered to examine outcomes at baseline, post-intervention, and at six-month follow-up (Patient Activation Measure, Self-Efficacy, Hospital Anxiety and Depression Scale, Ways of Coping, Group Health Association of America Satisfaction with Ostomy Care Survey, and the City of Hope Quality of Life - Ostomy). Changes from pre- to post-intervention and pre-intervention to follow-up were evaluated with paired t-tests. Text responses were coded and evaluated for important themes and recommendations. Results Thirty-eight subjects participated in the study. Most had a history of rectal cancer (60.5%) or bladder cancer (28.9%). Participants rated the overall program high (4.4–4.8 on 5-point scale). Text feedback indicated that participants enjoyed the group forums, wanted more participants, and more hands-on training. Scores on multiple surveys were shown to be improved and sustained, including Patient Activation (p=0.0004), Self-Efficacy (p=0.006), Total HRQOL (p=0.01), physical well-being (p=0.005), and social well-being (p=0.002). Survivor anxiety was significantly reduced by follow-up (p=0.047). Conclusions This self-management ostomy program can help cancer survivors with ostomies adapt to their stoma. Initiating this program in the community setting would be beneficial to many cancer survivors.

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