TY - JOUR AU - Papadakos, Janet AU - Trang, Aileen AU - Cyr, B. Alaina AU - Abdelmutti, Nazek AU - Giuliani, E. Meredith AU - Snow, Michelle AU - McCurdie, Tara AU - Pulandiran, Menaka AU - Urowitz, Sara AU - Wiljer, David PY - 2017/05/24 TI - Deconstructing Cancer Patient Information Seeking in a Consumer Health Library Toward Developing a Virtual Information Consult for Cancer Patients and Their Caregivers: A Qualitative, Instrumental Case Study JO - JMIR Cancer SP - e6 VL - 3 IS - 1 KW - patient education KW - information-seeking behavior KW - health literacy KW - Internet KW - consumer health information N2 - Background: Cancer patients and their caregivers want information about their disease and are interested in finding health information online. Despite the abundance of cancer information online, it is often fragmented, its quality is highly variable, and it can be difficult to navigate without expert-level knowledge of the cancer system. The Patient & Family Library at the Princess Margaret Cancer Centre offers a broad collection of high-quality cancer health information and staff are available to help patrons refine their questions and explore information needs that they may not have considered. Objective: The purpose of this research study was to deconstruct patrons? information-seeking behaviors in the library to assess the feasibility of replicating the services provided in the library through a Web app, extending the service beyond the walls of the cancer centre. The specific aims of this research were to understand (1) how patrons approach information seeking in the library (interface design), (2) how patrons communicate their informational needs (information categorization and metadata requirements), and (3) what resources are provided to address the patrons? information needs (collection development). Methods: We employed a qualitative, instrumental case study to deconstruct patrons? health information-seeking behavior. The study population included patients, the librarian, and library volunteers. Ethnographic observation was conducted at the library over 3 days and key informant interviews with library staff were conducted to address the first aim. A closed card-sorting activity was conducted to address the second aim and the library shift logs and Search Request Forms (SRFs) were reviewed to address the third aim. Results: A total of 55 interactions were recorded during the ethnographic observation and nine semistructured interviews were conducted during the key informant interviews. Seven library patron personas were identified: (1) Newbie, (2) Seasoned, (3) Direct, (4) Window Shopper, (5) Collector, (6) Information Seeker, and (7) Distressed. A total of 83 participants completed the closed card-sorting exercise. The participants? conceptual clusters within the similarity matrix overlapped with the groupings created by the librarian, with a few differences. A total of 161 entries in the library shift log and 65 SRFs were analyzed to determine what resources were given to patrons. Most resources that patrons received were available online (61%), although almost half of these required special access (47%). Conclusions: The study findings suggest it is possible to replicate library functions in a Web app with a few exceptions that cannot be replicated online. These elements include access to journal articles or other content behind paywalls and the librarian?s ability to encourage further discussion through empathy and active listening. Discussion with the librarian could serve to refine and predict needs through observing information seekers and to provide immediate connection to spiritual care and psychosocial support for patrons in distress. UR - http://cancer.jmir.org/2017/1/e6/ UR - http://dx.doi.org/10.2196/cancer.6933 UR - http://www.ncbi.nlm.nih.gov/pubmed/28539305 ID - info:doi/10.2196/cancer.6933 ER - TY - JOUR AU - Vollmer Dahlke, Deborah AU - Fair, Kayla AU - Hong, Alicia Yan AU - Kellstedt, Debra AU - Ory, G. Marcia PY - 2017/02/10 TI - Adolescent and Young Adult Cancer Survivorship Educational Programming: A Qualitative Evaluation JO - JMIR Cancer SP - e3 VL - 3 IS - 1 KW - cancer survivorship KW - adolescent and young adult KW - qualitative KW - mixed methods KW - evaluation N2 - Background: This program evaluation considers the need for increased professional and patient education for adolescent and young adult (AYA) cancer survivorship. Due to the high incidence of late effects of cancer treatment among AYA cancer survivors, knowledge sharing and communications are needed throughout the transition from cancer care into community care. AYA survivors are likely to need developmentally appropriate psychosocial care as well as extensive follow-on surveillance by physicians who are educated and aware of the likely chronic conditions and late effects that may occur in these patients. Objective: The objective of this study was to evaluate the outcomes of the After Cancer Care Ends, Survivorship Starts for Adolescent and Young Adults (ACCESS AYA) programming. The intent of the ACCESS AYA program was to build health literacy around AYA survivorship issues and to stimulate improved communications between survivors and health care providers. This paper addresses the central research question of ?How did the ACCESS AYA program increase health literacy, communications, and understanding among AYA survivors and providers?? Methods: The primarily qualitative evaluation included a brief introductory survey of participant awareness and effectiveness of the ACCESS AYA project serving as a recruitment tool. Survey respondents were invited to participate in in-depth interviews based on interview guides tailored to the different stakeholder groups. The evaluation used the Atlas Ti qualitative database and software for coding and key word analyses. Interrater reliability analyses were assessed using Cohen kappa analysis with Stata 12.1 (StataCorp LLC) software. Results: The key themes, which included survivor wellbeing, health care professional education, cancer advocates role and education, hospital and community-based resources, and the role of societal support, are presented in a concept map. The interrater reliability scores (ranging from 1 to minus 1) were .893 for first cycle coding and .784 for the second cycle. In the brief quantitative survey based on a scale of 1 to 5 with 5 as high, the 22 respondents rated their level of awareness of the project with a mean 3.2 (CI 3.02-3.45) and project effectiveness with a mean of 4 (CI 3.72-4.27). Conclusions: This study contributes to understanding of the ACCESS AYA survivor community in central Texas and the health care professionals and advocates who aid them in their efforts to a new normal life and wellbeing in their survivorship. The results of the evaluation highlight the need to continue to build both survivor and professional resources to address the unique impact of cancer on AYA cancer survivors. UR - http://cancer.jmir.org/2017/1/e3/ UR - http://dx.doi.org/10.2196/cancer.5821 UR - http://www.ncbi.nlm.nih.gov/pubmed/28410172 ID - info:doi/10.2196/cancer.5821 ER - TY - JOUR AU - Norquist, Josephine AU - Chirovsky, Diana AU - Munshi, Teja AU - Tolley, Chloe AU - Panter, Charlotte AU - Gater, Adam PY - 2017/05/12 TI - Assessing the Comparability of Paper and Electronic Versions of the EORTC QOL Module for Head and Neck Cancer: A Qualitative Study JO - JMIR Cancer SP - e7 VL - 3 IS - 1 KW - ePRO KW - comparability KW - EORTC QLQ-C30 KW - head and neck cancer KW - quality of life questionnaire N2 - Background: Patient-reported outcome (PRO) instruments are important tools for monitoring disease activity and response to treatment in clinical trials and clinical practice. In recent years, there have been movements away from traditional pen-and-paper PROs towards electronic administration. When using electronic PROs (ePROs), evidence that respondents complete ePROs in a similar way to their paper counterparts provides assurance that the two modes of administration are comparable or equivalent. The European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire-Core 30 item (EORTC QLQ-C30) and associated disease-specific modules are among the most widely used PROs in oncology. Although studies have evaluated the comparability and equivalence of electronic and original paper versions of the EORTC QLQ-C30, no such studies have been conducted to date for the head and neck cancer specific module (EORTC QLQ-H&N35). Objective: This study aimed to qualitatively assess the comparability of paper and electronic versions of the EORTC QLQ-H&N35. Methods: Ten head and neck cancer patients in the United States underwent structured cognitive debriefing and usability interviews. An open randomized crossover design was used in which participants completed the two modes of administration allocated in a randomized order. Using a ?think-aloud? process, participants were asked to speak their thoughts aloud while completing the EORTC QLQ-H&N35. They were thoroughly debriefed on their responses to determine consistency in interpretation and cognitive process when completing the instrument in both paper and electronic format. Results: Participants reported that the EORTC QLQ-H&N35 demonstrated excellent qualitative comparability between modes of administration. The proportion of noncomparable responses (ie, where the thought process used by participants for selecting responses appeared to be different) observed in the study was low (11/350 response pairs [35 items x 10 participants]; 3.1%). Evidence of noncomparability was observed for 9 of the 35 items of the EORTC QLQ-H&N35 and in no more than 2 participants per item. In addition, there were no apparent differences in level of comparability between individual participants or between modes of administration. Conclusions: Mode of administration does not affect participants? response to, or interpretation of, items in the EORTC QLQ-H&N35. The findings from this study add to the existing evidence supporting the use of electronic versions of the EORTC instruments when migrated to electronic platforms according to best practice guidelines. UR - http://cancer.jmir.org/2017/1/e7/ UR - http://dx.doi.org/10.2196/cancer.7202 UR - http://www.ncbi.nlm.nih.gov/pubmed/28500019 ID - info:doi/10.2196/cancer.7202 ER - TY - JOUR AU - Folta, Sara AU - Chang, Winnie AU - Hill, Rachel AU - Kelly, Michael AU - Meagher, Susan AU - Bowman, Paul W. AU - Zhang, Fang Fang PY - 2017/02/09 TI - Parent and Health Care Provider Perceptions for Development of a Web-Based Weight Management Program for Survivors of Pediatric Acute Lymphoblastic Leukemia: A Mixed Methods Study JO - JMIR Cancer SP - e2 VL - 3 IS - 1 KW - weight management KW - childhood cancer survivors KW - mixed methods N2 - Background: Survivors of pediatric acute lymphoblastic leukemia (ALL) may experience unhealthy weight gain during treatment, which has been associated with higher risk for chronic health issues. Objective: The purpose of this study was to obtain feedback on weight management in pediatric ALL survivors and on the content and implementation of a Web-based weight management program. Methods: Study participants included 54 parent survey respondents and 19 pediatric oncology professionals in 4 focus groups. Survey questions included report of child weight status and interest in participating in weight management programming at various time points. Pediatric oncology professionals were asked about the preferred topics and timing, as well as their role. Focus group data were analyzed by a multidisciplinary research team for common themes. Results: The mean age of survivors was 6.5 years. By parent report, 19% of children were overweight and 25% were obese. Preferred timing for weight management program participation was within 3 months of starting maintenance chemotherapy (23/53, 43%) or within 12 months after completion of all cancer treatments (18/53, 34%). Pediatric oncology professionals likewise considered the maintenance phase appropriate. They considered parenting to be an important topic to include and indicated that their most appropriate roles would be promotion and support. Conclusions: Parents and pediatric oncology professionals are interested in and supportive of early weight management in pediatric ALL survivors. Future research needs to identify strategies to integrate this into pediatric cancer care and to evaluate the feasibility and efficacy of these strategies. UR - http://cancer.jmir.org/2017/1/e2/ UR - http://dx.doi.org/10.2196/cancer.6680 UR - http://www.ncbi.nlm.nih.gov/pubmed/28410182 ID - info:doi/10.2196/cancer.6680 ER - TY - JOUR AU - Krebs, Paul AU - Shtaynberger, Jonathan AU - McCabe, Mary AU - Iocolano, Michelle AU - Williams, Katie AU - Shuk, Elyse AU - Ostroff, S. Jamie PY - 2017/03/01 TI - An eHealth Intervention to Increase Physical Activity and Healthy Eating in Older Adult Cancer Survivors: Summative Evaluation Results JO - JMIR Cancer SP - e4 VL - 3 IS - 1 KW - survivors KW - diet KW - food and nutrition KW - breast neoplasms KW - prostatic neoplasms KW - eHealth N2 - Background: A healthy lifestyle is associated with improved quality of life among cancer survivors, yet adherence to health behavior recommendations is low. Objective: This pilot trial developed and tested the feasibility of a tailored eHealth program to increase fruit and vegetable consumption and physical activity among older, long-term cancer survivors. Methods: American Cancer Society (ACS) guidelines for cancer survivors were translated into an interactive, tailored health behavior program on the basis of Social Cognitive Theory. Patients (N=86) with a history of breast (n=83) or prostate cancer (n=3) and less than 5 years from active treatment were randomized 1:1 to receive either provider advice, brief counseling, and the eHealth program (intervention) or advice and counseling alone (control). Primary outcomes were self-reported fruit and vegetable intake and physical activity. Results: About half (52.7%, 86/163) of the eligible patients consented to participate. The most common refusal reasons were lack of perceived time for the study (32/163) and lack of interest in changing health behaviors (29/163). Furthermore, 72% (23/32) of the intervention group reported using the program and most would recommend it to others (56%, 14/25). Qualitative results indicated that the intervention was highly acceptable for survivors. For behavioral outcomes, the intervention group reported increased fruit and vegetable consumption. Self-reported physical activity declined in both groups. Conclusions: The brief intervention showed promising results for increasing fruit and vegetable intake. Results and participant feedback suggest that providing the intervention in a mobile format with greater frequency of contact and more indepth information would strengthen treatment effects. UR - http://cancer.jmir.org/2017/1/e4/ UR - http://dx.doi.org/10.2196/cancer.6435 UR - http://www.ncbi.nlm.nih.gov/pubmed/28410171 ID - info:doi/10.2196/cancer.6435 ER - TY - JOUR AU - Van Blarigan, L. Erin AU - Kenfield, A. Stacey AU - Tantum, Lucy AU - Cadmus-Bertram, A. Lisa AU - Carroll, R. Peter AU - Chan, M. June PY - 2017/04/18 TI - The Fitbit One Physical Activity Tracker in Men With Prostate Cancer: Validation Study JO - JMIR Cancer SP - e5 VL - 3 IS - 1 KW - prostatic neoplasms KW - exercise N2 - Background: Physical activity after cancer diagnosis improves quality of life and may lengthen survival. However, objective data in cancer survivors are limited and no physical activity tracker has been validated for use in this population. Objective: The aim of this study was to validate the Fitbit One?s measures of physical activity over 7 days in free-living men with localized prostate cancer. Methods: We validated the Fitbit One against the gold-standard ActiGraph GT3X+ accelerometer in 22 prostate cancer survivors under free-living conditions for 7 days. We also compared these devices with the HJ-322U Tri-axis USB Omron pedometer and a physical activity diary. We used descriptive statistics (eg, mean, standard deviation, median, interquartile range) and boxplots to examine the distribution of average daily light, moderate, and vigorous physical activity and steps measured by each device and the diary. We used Pearson and Spearman rank correlation coefficients to compare measures of physical activity and steps between the devices and the diary. Results: On average, the men wore the devices for 5.8 days. The mean (SD) moderate-to-vigorous physical activity (MVPA; minutes/day) measured was 100 (48) via Fitbit, 51 (29) via ActiGraph, and 110 (78) via diary. The mean (SD) steps/day was 8724 (3535) via Fitbit, 8024 (3231) via ActiGraph, and 6399 (3476) via pedometer. Activity measures were well correlated between the Fitbit and ActiGraph: 0.85 for MPVA and 0.94 for steps (all P<.001). The Fitbit?s step measurements were well correlated with the pedometer (0.67, P=.001), and the Fitbit?s measure of MVPA was well correlated with self-reported activity in the diary (0.84; P<.001). Conclusions: Among prostate cancer survivors, the Fitbit One?s activity and step measurements were well correlated with the ActiGraph GT3X+ and Omron pedometer. However, the Fitbit One measured two times more MVPA on average compared with the ActiGraph. UR - http://cancer.jmir.org/2017/1/e5/ UR - http://dx.doi.org/10.2196/cancer.6935 UR - http://www.ncbi.nlm.nih.gov/pubmed/28420602 ID - info:doi/10.2196/cancer.6935 ER - TY - JOUR AU - Pereira-Azevedo, Nuno AU - Osório, Luís AU - Fraga, Avelino AU - Roobol, J. Monique PY - 2017/01/06 TI - Rotterdam Prostate Cancer Risk Calculator: Development and Usability Testing of the Mobile Phone App JO - JMIR Cancer SP - e1 VL - 3 IS - 1 KW - mHealth KW - prostate cancer KW - nomogram N2 - Background: The use of prostate cancer screening tools that take into account relevant prebiopsy information (ie, risk calculators) is recommended as a way of determining the risk of cancer and the subsequent need for a prostate biopsy. This has the potential to limit prostate cancer overdiagnosis and subsequent overtreatment. mHealth apps are gaining traction in urological practice and are used by both practitioners and patients for a variety of purposes. Objective: The impetus of the study was to design, develop, and assess a smartphone app for prostate cancer screening, based on the Rotterdam Prostate Cancer Risk Calculator (RPCRC). Methods: The results of the Rotterdam arm of the European Randomized Study of Screening for Prostate Cancer (ERSPC) study were used to elaborate several algorithms that allowed the risk of prostate cancer to be estimated. A step-by-step workflow was established to ensure that depending on the available clinical information the most complete risk model of the RPCRC was used. The user interface was designed and then the app was developed as a native app for iOS. The usability of the app was assessed using the Post-Study System Usability Questionnaire (PSSUQ) developed by IBM, in a group of 92 participants comprising urologists, general practitioners, and medical students. Results: A total of 11 questions were built into the app, and, depending on the answers, one of the different algorithms of the RPCRC could be used to predict the risk of prostate cancer and of clinically significant prostate cancer (Gleason score ?7 and clinical stage >T2b). The system usefulness, information quality, and interface quality scores were high?92% (27.7/30), 87% (26.2/30), and 89% (13.4/15), respectively. No usability problems were identified. Conclusions: The RPCRC app is helpful in predicting the risk of prostate cancer and, even more importantly, clinically significant prostate cancer. Its algorithms have been externally validated before and the usability score shows the app?s interface is well designed. Further usability testing is required in different populations to verify these results and ensure that it is easy to use, to warrant a broad appeal, and to provide better patient care. UR - http://cancer.jmir.org/2017/1/e1/ UR - http://dx.doi.org/10.2196/cancer.6750 UR - http://www.ncbi.nlm.nih.gov/pubmed/28410180 ID - info:doi/10.2196/cancer.6750 ER -