Feasibility, acceptability, and limited efficacy of health system-led familial risk notification: protocol for a mixed-methods evaluation.

BACKGROUND: Genetic testing for pathogenic variants associated with hereditary breast and ovarian cancer risk can improve cancer outcomes through enhanced preventive care in both people with known variants and their biologic relatives. Cascade screening-the process of case-finding in relatives by notifying and inviting them to consider testing-currently relies on the patient to notify their own at-risk relatives. However, many of these relatives never learn they might be at risk. We developed and implemented a new health system-led familial genetic risk notification process where the care team offers to contact at-risk relatives directly. This protocol describes a study to assess the feasibility, acceptability, and limited efficacy of this intervention. METHODS: This feasibility study will use a single-arm, nonrandomized, mixed-methods prospective design. We will enroll two groups of participants: probands and relatives of probands. Eligible probands are currently enrolled Kaiser Permanente Washington (KPWA) members with an upcoming appointment for pre-test genetic counseling for hereditary Lynch syndrome, breast, or ovarian cancer. Eligible relatives, who do not have to be KPWA members, are first-and second-degree relatives of probands. During the appointment with the proband, the genetic counselor will determine whether the proband is appropriate for genetic testing and if so, which relatives might benefit from cascade testing. The genetic counselor then will offer to contact any or all identified relatives directly to discuss genetic risk and testing. The primary outcome of this study is the feasibility of the implemented familial notification process, which we will measure using quantitative and qualitative data on intervention reach, intervention acceptability, and limited efficacy. Analyses will be primarily descriptive and exploratory, with the intent of preparing for a future, larger trial of direct contact interventions. DISCUSSION: Our findings will provide new, foundational evidence for the creation of US-based familial notification systems that directly address logistical and ethical challenges while prioritizing the preferences of patients and families.

Approaches for implementing digital interventions for alcohol use disorders in primary care: A qualitative, user-centered design study.

Background: Digital interventions, such as smartphone apps, can be effective in treating alcohol use disorders (AUD). However, efforts to integrate digital interventions into primary care have been challenging. To inform successful implementation, we sought to understand how patients and clinicians preferred to use apps in routine primary care. Methods: This study combined user-centered design and qualitative research methods, interviewing 18 primary care patients with AUD and nine primary care clinicians on topics such as prior experiences with digital tools, and design preferences regarding approaches for offering apps for AUD in primary care. Interviews were recorded and transcribed for template analysis whereby a priori codes were based on interview topics and refined through iterative coding. New codes and cross-cutting themes emerged from the data. Results: Patient participants with AUD indicated they would be more likely to engage in treatment if primary care team members were involved in their use of apps. They also preferred to see clinicians "invested" and recommended that clinicians ask about app use and progress during follow-up appointments or check-ins. Clinician participants valued the opportunity to offer apps to their patients but noted that workflows would need to be tailored to individual patient needs. Time pressures, implementation complexity, and lack of appropriate staffing were cited as barriers. Clinicians proposed concrete solutions (e.g., education, tools, and staffing models) that could improve their ability to use apps within the constraints of primary care and suggested that some patients could potentially use apps without clinician support. Conclusions: A user-centered approach to engaging patients in digital alcohol interventions in primary care may require personalized support for both initiation and follow-up. Meeting patients' needs likely require increased staffing and efficient workflows in primary care. Health systems should consider offering multiple pathways for enrolling patients in apps to accommodate individual preferences and contextual barriers. Plain Language Summary: Healthcare systems have begun using app-based treatments to help patients manage their health conditions, including alcohol use disorders. Some apps have been tested in research studies and appear to be effective. However, it is difficult for healthcare teams to offer apps to patients. Clinicians must engage in new activities that they have not done before, such as "teaching" patients to use apps and checking in on their use of the apps. Identifying how to use apps in routine healthcare is critical to their successful implementation. This study interviewed 27 people, including healthcare providers and patients in primary care, to uncover the most optimal ways to offer apps to patients with alcohol use disorders. The interviews combined the use of qualitative research methods and user-centered design. Results suggest that to use to address alcohol use disorders, primary care teams should be prepared to offer personalized support to patients. Both patient and clinician interviewees said that the steps required to use apps must be intuitive and simple. Patients could gain more benefits if clinicians introduced the apps and guided patients to use them, as opposed to making apps available for patients to download and use on their own. However, the exact approach to offering apps would depend on a given patient's preferences and the extent that staffing was available in the clinic to support patients. Health systems should be prepared to offer and support patients in their use of apps, which should accommodate patient preferences and the constraints of the clinic.

Patient and Family Preferences on Health System-Led Direct Contact for Cascade Screening.

Health benefits to relatives of people at known genetic risk for hereditary cancer syndromes is key to realizing the promise of precision medicine. We conducted a qualitative study to design a patient- and family-centered program for direct contact of relatives to recommend cascade genetic testing. We conducted two rounds of data collection using focus groups followed by individual interviews with patients with HBOC or Lynch syndrome and a separate sample of people with a family history of hereditary cancers. Results indicate that U.S.-based health system-led direct contact of relatives is acceptable to patients and families, should take a programmatic approach, include consent of relatives before proband testing, complement to existing patient-mediated disclosure, and allow for relative control of information. Our findings suggest a set of requirements for U.S.-based direct contact programs that could ultimately benefit more relatives than current approaches.

Development of a Mobile Health Intervention with Personal Experiments for Smokers Who Are Ambivalent About Quitting: Formative Design and Testing.

BACKGROUND: The majority of cigarette smokers want to quit someday but are not ready to commit to long-term abstinence. However, available smoking cessation treatments are not well-suited to meet the needs of these ambivalent smokers. Low-cost, high-reach mobile health (mHealth) interventions may be a cost-efficient means of offering assistance to ambivalent smokers, yet there are currently no evidence-based options available for this group. OBJECTIVE: The aim of this study was to develop and preliminarily evaluate the core content for an mHealth program targeting adult smokers who are ambivalent about quitting. The core content consisted of a series of "personal experiments" similar to those tested as part of a counseling intervention in prior work, including brief cognitive or behavioral tasks designed to boost readiness for changing smoking behavior. METHODS: We conducted individual user interviews (N=3) to refine program content, and then conducted a one-arm pilot study (N=25) to assess user receptivity and the potential impact of the experiments on motivation and self-efficacy to quit or reduce smoking. RESULTS: In user interviews, participants liked the concept of the personal experiments. Participants in the pilot study found a medium-fidelity prototype to be highly acceptable. After watching a brief orientation video that explained how the program works, most participants (80%, 20/25) indicated that it sounded interesting, primarily because it did not require any commitment to quit. All participants (100%, 25/25) completed all 7 experiments, including a 24-hour quit attempt, although not all were able to refrain from smoking for a full day based on qualitative feedback on the experiment. The mean rating of usefulness of the overall program was 4.12 (SD 1.09) out of 5, and the average rating of the difficulty of the experiments was 2.16 (SD 1.18) out of 5. At the last assessment point, 92% (23/25) of the participants indicated that they were more interested in either quitting or cutting back than when they began the program, and 72% (18/25) said that if the program had included a free trial of nicotine replacement therapy, they would have used it to try to quit smoking. CONCLUSIONS: This formative work confirmed that ambivalent smokers are willing to use and will remain engaged with an mHealth intervention that employs the novel concept of personal experiments to enhance their motivation for and ability to quit smoking. The addition of action-oriented treatment (self-help and free nicotine replacement therapy, quitline referral) could further support users' efforts to stop smoking and remain quit.

Mobile Apps for Oral Health Promotion: Content Review and Heuristic Usability Analysis.

BACKGROUND: There has been an increase in consumer-facing mobile health (mHealth) apps in recent years. Prior reviews have characterized the availability, usability, or quality of popular mHealth apps targeting a range of health behaviors, but none has examined apps that promote better oral health care. Oral disease affects billions of people worldwide and mobile phone use is on the rise, so the market for well-designed and effective oral health apps is substantial. OBJECTIVE: We examined the content and usability of popular oral health promotion apps to better understand the current state of these self-help interventions and inform the need and opportunity for future app development. METHODS: Between February and March 2018, we identified oral health-focused apps that were designed for Android or iOS, available in English, and targeted adult consumers (as opposed to children or dental health professionals). The sample was limited to the most popular and highly rated apps on each platform. For each app reviewed, we assessed its basic descriptive characteristics (eg, platform, cost), evidence of a theoretical basis or empirical validation, key program functionality, and the extent to which the app addressed diet and tobacco and alcohol use as risk factors for oral disease. We characterized the framing (ie, gain vs loss) of all persuasive messaging and conducted a heuristic analysis to assess each app's usability as a persuasive health technology. RESULTS: Thirty-three apps were eligible for review based on the selection criteria. Two-thirds (22/33, 67%) were geared toward the general public as opposed to dental clinic patients, insurance plan members, or owners of specific electric toothbrushes. Most (31/33, 94%) were free to download, and a majority (19/33, 58%) were sponsored by software developers as opposed to oral health experts. None offered any theoretical basis for the content or had been empirically validated. Common program features included tools for tracking or reminding one to brush their teeth and assistance scheduling dental appointments. Nineteen apps (58%) included educational or persuasive content intended to influence oral health behavior. Only 32% (6/19) of these included a larger proportion of gain-framed than loss-framed messaging. Most of the apps did not mention diet, alcohol or tobacco-important risk factors for oral disease. Overall, the apps performed poorly on standard usability heuristics recommended for persuasive health technologies. CONCLUSIONS: The quality of the reviewed apps was generally poor. Important opportunities exist to develop oral health promotion apps that have theoretically grounded content, are empirically validated, and adhere to good design principles for persuasive health technologies.