Quality of life drives patients' preferences for secondary findings from genomic sequencing.

There is growing impetus to include measures of personal utility, the nonmedical value of information, in addition to clinical utility in health technology assessment (HTA) of genomic tests such as genomic sequencing (GS). However, personal utility and clinical utility are challenging to define and measure. This study aimed to explore what drives patients' preferences for hypothetically learning medically actionable and non-medically actionable secondary findings (SF), capturing clinical and personal utility; this may inform development of measures to evaluate patient outcomes following return of SF. Semi-structured interviews were conducted with adults with a personal or family cancer history participating in a trial of a decision aid for selection of SF from genomic sequencing (GS) ( www.GenomicsADvISER.com ). Interviews were analyzed thematically using constant comparison. Preserving health-related and non-health-related quality of life was an overarching motivator for both learning and not learning SF. Some participants perceived that learning SF would help them "have a good quality of life" through informing actions to maintain physical health or leading to psychological benefits such as emotional preparation for disease. Other participants preferred not to learn SF because results "could ruin your quality of life," such as by causing negative psychological impacts. Measuring health-related and non-health-related quality of life may capture outcomes related to clinical and personal utility of GS and SF, which have previously been challenging to measure. Without appropriate measures, generating and synthesizing evidence to evaluate genomic technologies such as GS will continue to be a challenge, and will undervalue potential benefits of GS and SF.

Demystifiying state health insurance marketplaces.

The state health insurance exchanges, mandated under the Patient Protection and Affordable Care Act, will impact how health care is delivered and reimbursed, and will touch the lives of nurses in all professional roles. The dynamics of how each model will operate within each state is currently a work in progress. Nurses have a tradition of providing voice and leadership in the health care reform arena from the unique position as both consumers and health care professionals. The time is right to contact state legislators and advocate for nurses to sit on the governing boards of the state health care exchanges. Communication between nurses in all states should be an ongoing dialogue through specialty and state nursing organizations to ensure nursing is aware of both issues and best practices nationwide.