A Web-based communication aid for patients with cancer: the CONNECT Study.

BACKGROUND: Cancer patients and their oncologists often report differing perceptions of consultation discussions and discordant expectations regarding treatment outcomes. CONNECT, a computer-based communication aid, was developed to improve communication between patients and oncologists. METHODS: CONNECT includes assessment of patient values, goals, and communication preferences; patient communication skills training; and a preconsultation physician summary report. CONNECT was tested in a 3-arm, prospective, randomized clinical trial. Prior to the initial medical oncology consultation, adult patients with advanced cancer were randomized to the following arms: 1) control; 2) CONNECT with physician summary; or 3) CONNECT without physician summary. Outcomes were assessed with postconsultation surveys. RESULTS: Of 743 patients randomized, 629 completed postconsultation surveys. Patients in the intervention arms (versus control) felt that the CONNECT program made treatment decisions easier to reach (P = .003) and helped them to be more satisfied with these decisions (P < .001). In addition, patients in the intervention arms reported higher levels of satisfaction with physician communication format (P = .026) and discussion regarding support services (P = .029) and quality of life concerns (P = .042). The physician summary did not impact outcomes. Patients with higher levels of education and poorer physical functioning experienced greater benefit from CONNECT. CONCLUSIONS: This prospective randomized clinical trial demonstrates that computer-based communication skills training can positively affect patient satisfaction with communication and decision-making. Measurable patient characteristics may be used to identify subgroups most likely to benefit from an intervention such as CONNECT.

Barriers to participation in cancer prevention clinical trials.

BACKGROUND: Cancer prevention clinical trials seek to enroll individuals at increased risk for cancer. Little is known about attitudes among physicians and at-risk individuals towards cancer prevention clinical trials. We sought to characterize barriers to prevention trial participation among medical oncologists and first-degree relatives of their patients. METHODS: Physician participants were practicing oncologists in Pennsylvania. Eligible first-degree participants were adult relatives of a cancer patient being treated by one of the study physicians. The influence of perceived psychosocial and practical barriers on level of willingness to participate in cancer prevention clinical trials was investigated. RESULTS: Response rate was low among physicians, 137/478 (29%), and modest among eligible first-degree relatives, 82/129 (64%). Lack of access to an eligible population for prevention clinical trials was the most commonly cited barrier to prevention clinical trials among oncologists. Nearly half (45%) of first-degree relatives had not heard of cancer prevention clinical trials, but 68% expressed interest in learning more, and 55% expressed willingness to participate. In the proportional odds model, greater information source seeking/responsiveness (i.e., interest in learning more about clinical prevention trials from more information sources) (p = 0.04), and having fewer psychosocial barriers (p = 0.02) were associated with a greater willingness to participate. CONCLUSIONS: Many individuals who may be at greater risk for developing cancer because of having a first-degree relative with cancer are unaware of the availability of clinical cancer prevention trials. Nonetheless, many perceive low personal risk associated with these studies, and are interested in learning more.

Using health communication best practices to develop a web-based provider-patient communication aid: the CONNECT study.

OBJECTIVE: Although there is broad consensus that careful content vetting and user testing is important in the development of technology-based educational interventions, often these steps are overlooked. This paper highlights the development of a theory-guided, web-based communication aid (CONNECT), designed to facilitate treatment decision-making among patients with advanced cancer. METHODS: The communication aid included an on-line survey, patient skills training module and an automated physician report. Development steps included: (1) evidence-based content development; (2) usability testing; (3) pilot testing; and (4) patient utilization and satisfaction. RESULTS: Usability testing identified some confusing directions and navigation for the on-line survey and validated the relevance of the "patient testimonials" in the skills module. Preliminary satisfaction from the implementation of the communication aid showed that 66% found the survey length reasonable and 70% found it helpful in talking with the physician. Seventy percent reported the skills module helpful and about half found it affected the consultation. CONCLUSION: Designing patient education interventions for translation into practice requires the integration of health communication best practice including user feedback along the developmental process. PRACTICE IMPLICATIONS: This developmental process can be translated to a broad array of community-based patient and provider educational interventions.

Application of best practice approaches for designing decision support tools: the preparatory education about clinical trials (PRE-ACT) study.

OBJECTIVE: This article describes the rigorous development process and initial feedback of the PRE-ACT (Preparatory Education About Clinical Trials) web-based- intervention designed to improve preparation for decision making in cancer clinical trials. METHODS: The multi-step process included stakeholder input, formative research, user testing and feedback. Diverse teams (researchers, advocates and developers) participated including content refinement, identification of actors, and development of video scripts. Patient feedback was provided in the final production period and through a vanguard group (N=100) from the randomized trial. RESULTS: Patients/advocates confirmed barriers to cancer clinical trial participation, including lack of awareness and knowledge, fear of side effects, logistical concerns, and mistrust. Patients indicated they liked the tool's user-friendly nature, the organized and comprehensive presentation of the subject matter, and the clarity of the videos. CONCLUSION: The development process serves as an example of operationalizing best practice approaches and highlights the value of a multi-disciplinary team to develop a theory-based, sophisticated tool that patients found useful in their decision making process. Practice implications Best practice approaches can be addressed and are important to ensure evidence-based tools that are of value to patients and supports the usefulness of a process map in the development of e-health tools.

Drug therapies for Parkinson's disease: A database analysis of patient compliance and persistence.

BACKGROUND: Evaluating medication adherence in Parkinson's disease (PD) is important to avoid erroneously attributing suboptimal patient outcomes from poor compliance to disease progression or adverse responses to medications. OBJECTIVE: This study of patients with PD who were new to PD drug therapy examined patient compliance and persistence, by drug, to provide a comprehensive investigation of medication-taking behavior in PD. METHODS: A retrospective analysis of patients receiving a new PD drug between March 1 and May 31, 2007, was conducted, using the IMS Health longitudinal prescription database, which contains ∼50% of all retail prescriptions and <150 million patients in the United States. Patients were considered to have received a new PD drug if they initiated PD therapy for the first time, added adjunctive PD therapy, or switched one PD drug for another. Patients were categorized as naive to PD therapy (NT) or having prior PD therapy (PT), which included adjunctive use and switches. The PD medications evaluated were rasagiline, levodopa/carbidopa, levodopa/carbidopa/entacapone, the catechol-O-methyltransferase (COMT) inhibitors (entacapone and tolcapone), pramipexole, ropinirole, and selegiline. The study consisted of a 12-month look-back period (during which patients were required to be active in the database), a 3-month selection period (during which patients received their first prescription), and a 12-month observation period. Compliance was measured using the medication possession ratio (MPR; defined as the number of days' supply of medication divided by the number of available days of therapy, from first dispense date in the selection period to last dispense date in the observation period); noncompliance was defined as an MPR ≤80%. Persistence was measured as the duration (days) of uninterrupted therapy. RESULTS: A total of 29,682 patients with PD (19,673 NT, 10,009 PT) received a new PD drug and were analyzed. Of the 19,510 patients included in the compliance analysis, 10,438 (53.5%) had compliance rates >80% and 9072 (46.5%) were noncompliant. For all patients (NT and PT), compliance rates were significantly higher for patients taking rasagiline than for those taking other PD medications (all P < 0.001). For all patients, the highest mean number of persistent days of treatment (147.5) was reported for rasagiline, followed by levodopa/carbidopa/ entacapone (146.9); persistence for both of these drugs was significantly higher than that for the comparator medications (rasagiline vs levodopa/carbidopa, P = 0.002; rasagiline vs pramipexole, P = 0.003; rasagiline vs COMT inhibitors, ropinirole, and selegiline, all P < 0.001; levodopa/carbidopa/entacapone vs levodopa/carbidopa, P = 0.005; levodopa/carbidopa/entacapone vs pramipexole, P = 0.006; levodopa/carbidopa/entacapone vs COMT inhibitors, ropinirole, and selegiline, all P < 0.001). Almost half of the patients (13,103; 44.1%) remained on their PD medication ≥90 days. CONCLUSIONS: This study found a differential compliance and persistence across PD drug therapies. The compliance rate for rasagiline was significantly higher than that for all of the other PD medications. In addition, rasagiline and levodopa/carbidopa/entacapone were associated with significantly higher persistence rates than were the other PD medications.

Complementary and alternative medicine (CAM) and supportive care in cancer: a synopsis of research perspectives and contributions by an interdisciplinary team.

GOALS OF WORK: The purpose of this short review is to provide a commonly accepted definition of complementary and alternative medicine (CAM), to illustrate the widespread use of CAM by people affected by cancer around the world, and to highlight the research contributions of the Cancer Complementary and Alternative Medicine (CCAM) research team and its colleagues. METHODS: Based on research conducted by CCAM and several European colleagues, a collection of articles was compiled, reviewed, and edited. MAIN RESULTS: CAM modalities play a role in supportive care and cancer. Because of the high CAM utilization, it is critical to help cancer patients make safe, informed, evidence-based decisions for their care. In addition, advances in research methodology, outcomes, and measurement in CAM studies are suggested to better account for individual and collective experiences. CONCLUSION: This special issue provides clinicians with a summary of information about CAM and perspectives for better responding to cancer patient's needs.

An Internet method to assess cancer patient information needs and enhance doctor-patient communication: a pilot study.

BACKGROUND: We previously reported that doctor-patient communication in the cancer context may be suboptimal. We therefore developed measures to assess patient communication preferences and established feasibility of an Internet-based intervention to improve communication. METHODS: Cancer patients completed an Internet-based survey about communication preferences, with a summary provided to the physician before the consultation. Patients completed a follow-up survey to assess consultation content and satisfaction. RESULTS: Study procedures were feasible, measures exhibited strong internal consistency, and patients expressed satisfaction with the intervention. CONCLUSION: The Internet offers an opportunity to assess patient preferences and prompt physicians about individual patient informational needs prior to the clinical encounter.

Barriers to clinical trial participation as perceived by oncologists and patients.

Although clinical trial research is required for the development of improved treatment strategies, very few cancer patients participate in these studies. The purpose of this study was to describe psychosocial barriers to clinical trial participation among oncologists and their cancer patients. A survey was distributed to all medical oncologists in Pennsylvania and a subset of their patients. Relevant background information and assessment of practical and psychosocial barriers to clinical trial participation were assessed. Among 137 oncologists and 170 patients who completed the surveys, 84% of patients were aware of clinical trials, and oncologists and patients generally agreed that clinical trials are important to improving cancer treatment. However, oncologists and patients were more likely to consider clinical trials in advanced or refractory disease. When considering 7 potential barriers to clinical trials, random assignment and fear of receiving a placebo were ranked highly by both patients and oncologists. Patients identified fear of side effects as the greatest barrier to clinical trial participation, whereas oncologists ranked this psychosocial barrier as least important to their patients. Overall, the study found that although oncologists and patients are aware of clinical trials and have favorable attitudes toward them, psychosocial barriers exist for patients that may impact participation in clinical trials. Furthermore, important discrepancies exist between the perceptions of oncologists and those of patients regarding what the psychosocial barriers are. We concluded that characterizing oncologist and patient perceived barriers can help improve communication and decision making about clinical trials, such that participation may be optimized.