The use of patient and provider perspectives to develop a patient-oriented website for women diagnosed with breast cancer.

OBJECTIVE: Develop a patient education program that provides accurate and easy-to-understand information for newly diagnosed breast cancer patients. METHODS: To inform development of the patient education program, we conducted a longitudinal series of semi-structured interviews with 30 breast cancer patients as well as one-time interviews with 22 healthcare providers. Responses guided the study team's decisions regarding both form and content. RESULTS: We created a website (www.cancercarelinks.org) that reflects the needs expressed by patients and providers. The website is structured to answer six key questions that emerged in the interviews: What does my diagnosis mean? What will my treatment be like? Who will be involved with my treatment? What has treatment been like for others? How can I share my story with my family and friends? Where can I find more information and support? In a beta-test, 12 breast cancer patients rated the website as very clear, informative, trustworthy, useful, easy-to-understand, and easy to use. CONCLUSION: The emotional weight of a breast cancer diagnosis, coupled with the amount of disparate information available, can be overwhelming for patients. Providing clear, accurate, and tailored information is a way to meet information needs and allay fears that patients will receive "bad" information. PRACTICE IMPLICATIONS: Combining patient and provider input with the perspectives of a multidisciplinary team resulted in a promising patient education program for women diagnosed with breast cancer. The logic of this approach has implications for developing patient education programs for a variety of clinical contexts.

Randomized clinical trial of an Internet-based versus brief office intervention for adolescent smoking cessation.

OBJECTIVE: Evaluation of novel treatment delivery methods, such as the Internet are notably absent from the adolescent smoking treatment literature. METHODS: Adolescent smokers ages 11-18 years were randomized to a clinic-based, brief office intervention (BOI; N=69) consisting of four individual counseling sessions; or to Stomp Out Smokes (SOS), an Internet, home-based intervention (N=70). Adolescents in SOS had access to the SOS site for 24 weeks. RESULTS: The 30-day, point-prevalence smoking abstinence rates for BOI and SOS were 12% versus 6% at week 24 and 13% versus 6% at week 36, with no significant treatment differences. Among participants who continued to smoke, SOS was associated with a significantly greater reduction in average number of days smoked than BOI (P=0.006). The BOI was found to be feasible with high session attendance rates. SOS participants accessed the site a mean+/-S.D. of 6.8+/-7.1 days. SOS use dropped to less than one-third of participants by week 3. CONCLUSION: Additional research is needed to tap the potential capabilities of the Internet for adolescent smoking cessation using proactive, personalized, patient-education components. PRACTICE IMPLICATIONS: Augmenting the SOS type of intervention with more structured, personal and proactive patient-education components delivered in-person or by telephone or electronic mail is recommended.

Assessing the unmet information, support and care delivery needs of men with prostate cancer.

This study identified the key Unmet Needs of men with localized prostate cancer. A series of Nominal Groups were used to identify needs, from which a 135-item survey was developed to assess both the Importance and Unmet Need of each item. An Importance-Weighted Unmet Need score was calculated for each item, incorporating both the Importance and the degree to which the need was unmet. Surveys (n=500) were distributed in four geographically distinct areas, with a response rate of 46%. Respondents were 90% Caucasian, 80% married, with a mean age of 66 years, and mean education of 14 years. Care delivery needs were most important and least unmet, while Support needs were least important and most unmet. However, when degree to which needs were unmet was weighted by Importance, information needs had the highest Importance-Weighted Unmet Need scores. The greatest Unmet Needs for information were in knowledge of recurrence issues and in side effects of the illness and its treatment.

CHESS: 10 years of research and development in consumer health informatics for broad populations, including the underserved.

This paper reviews the research and development around a consumer health informatics system CHESS (The Comprehensive Health Enhancement Support System) developed and tested by the Center for Health Systems Research and Analysis at the University of Wisconsin. The review places particular emphasis on what has been found with regard to the acceptance and use of such systems by high risk and underserved groups.

Frequency and type of use of a home-based, Internet intervention for adolescent smoking cessation.

PURPOSE: The Internet offers a potential medium for delivering smoking cessation treatment to adolescents. However, few Internet-based cessation programs for adolescents have been evaluated. We describe adolescent use of a home-based Internet intervention to stop smoking (Stomp Out Smokes [SOS]) and explore baseline characteristics associated with SOS use. METHODS: Participants were 70 adolescent smokers aged 12-18 years (50% female, 90% Caucasian) randomized to receive the SOS intervention for 24 weeks as part of a larger clinical trial. SOS comprised 40 components, of which eight were primarily interactive (e.g., discussion support group, ask an expert, quit plan) and 32 were primarily informational (e.g., managing withdrawal, medications to stop smoking). SOS use data were captured electronically, including total logins to the site, and type of SOS components used defined by page hits on the interactive and information components. RESULTS: A total of 7,708 SOS website pages (6825 interactive and 883 informational) were accessed over the 24 weeks. The highest proportion of page hits was for the discussion support group (35%) and quit plan (30%). Interactive pages were significantly more likely to be used than informational pages (median 65 vs. 6, p < .001). Males accessed fewer interactive pages compared with females (p = .04). No other baseline characteristics were univariately associated with total logins or use of informational or interactive pages. CONCLUSIONS: Adolescent smokers most often used a discussion support group and other interactive Internet-based cessation components. Future studies designed to increase adolescent use, and efficacy of, Internet-based cessation programs are warranted.

Differences in adolescent smoker and nonsmoker perceptions of strategies that would help an adolescent quit smoking.

This study assessed adolescent smoker and nonsmoker perceptions of strategies that would help an adolescent smoker in his or her attempt to stop smoking. Surveys were distributed primarily in the schools at 4 geographic and ethnically diverse study sites. Respondents were 965 adolescents (49% female; 46% minority). Current smokers (n = 232) were asked to rate the extent to which they agreed or disagreed that supportive behaviors of friends and family, quitting strategies, or learning about quitting strategies would be helpful if they decided to quit. Nonsmokers (n = 733) were asked to indicate the degree to which they agreed or disagreed that these behaviors and strategies would be helpful if a friend decided to quit. Responses to each of the 33 attitude items were rated on a 5-point scale ranging from strongly disagree to strongly agree. Marked differences were observed between smokers and nonsmokers in the level of agreement on each item. In general, smokers reported far less enthusiasm for cessation strategies than nonsmokers. After adjusting for gender, age, and other covariates, smoking status was the strongest independent predictor of the number of items endorsed as agree or strongly agree. The results have implications for the design of peer-based and other interventions for adolescent smokers.