JMIR Publications

JMIR Cancer

Patient-Centered Innovations, Education and Technology for Cancer Care, Cancer Survivorship and Cancer Research

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Journal Description

JMIR Cancer (JC) is a new peer-reviewed journal with a focus on education, innovation and technology in cancer care, cancer survivorship and cancer research, as well as in participatory and patient-centred approaches. A sister journal of the Journal of Medical Internet Research (JMIR), a leading eHealth journal (Impact Factor 2015: 4.532), the scope of JC is broader and includes non-Internet approaches to improve cancer care and cancer research.

We invite submission of original research, viewpoints, reviews, tutorials, case studies, and non-conventional articles (e.g. open patient education material and software resources that are not yet evaluated but free for others to use/implement). 

In our "Patients' Corner", we invite patients and survivors to submit short essays and viewpoints on all aspects of cancer, but in particular suggestions on how to improve the health care system, and suggestions for new technologies, applications and approaches (no article processing fees).

JC is open access and all articles are published under a Creative Commons Attribution license. JC has been accepted for indexing in PubMed Central and Pubmed.

 

Recent Articles:

  • Doctor talking to young cancer patient. Photo credit: Alex E. Proimos. Image source: Flickr, URL: http://www.flickr.com/photos/34120957@N04/6870109454, licensed under Creative Commons NC 2.0.

    Adolescent and Young Adult Cancer Survivorship Educational Programming: A Qualitative Evaluation

    Abstract:

    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.

  • Child and mother visiting doctor. Photo credit: uwhealth. Image source: Flickr, Url: http://www.flickr.com/photos/33027884@N07/6842253071, licensed under Creative Commons NC ND 2.0.

    Parent and Health Care Provider Perceptions for Development of a Web-Based Weight Management Program for Survivors of Pediatric Acute Lymphoblastic Leukemia:...

    Abstract:

    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.

  • Rotterdam Prostate Cancer Risk Calculator. Image sourced and copyright owned by authors.

    Rotterdam Prostate Cancer Risk Calculator: Development and Usability Testing of the Mobile Phone App

    Abstract:

    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.

  • Drug safety. Image Source: https://pixabay.com/en/medications-cure-tablets-pharmacy-257344/. Author: Jarmoluk. Copyright: CC0 Public Domain.

    Clinical Trial Electronic Portals for Expedited Safety Reporting: Recommendations from the Clinical Trials Transformation Initiative Investigational New Drug...

    Abstract:

    Background: Use of electronic clinical trial portals has increased in recent years to assist with sponsor-investigator communication, safety reporting, and clinical trial management. Electronic portals can help reduce time and costs associated with processing paperwork and add security measures; however, there is a lack of information on clinical trial investigative staff’s perceived challenges and benefits of using portals. Objective: The Clinical Trials Transformation Initiative (CTTI) sought to (1) identify challenges to investigator receipt and management of investigational new drug (IND) safety reports at oncologic investigative sites and coordinating centers and (2) facilitate adoption of best practices for communicating and managing IND safety reports using electronic portals. Methods: CTTI, a public-private partnership to improve the conduct of clinical trials, distributed surveys and conducted interviews in an opinion-gathering effort to record investigator and research staff views on electronic portals in the context of the new safety reporting requirements described in the US Food and Drug Administration’s final rule (Code of Federal Regulations Title 21 Section 312). The project focused on receipt, management, and review of safety reports as opposed to the reporting of adverse events. Results: The top challenge investigators and staff identified in using individual sponsor portals was remembering several complex individual passwords to access each site. Also, certain tasks are time-consuming (eg, downloading reports) due to slow sites or difficulties associated with particular operating systems or software. To improve user experiences, respondents suggested that portals function independently of browsers and operating systems, have intuitive interfaces with easy navigation, and incorporate additional features that would allow users to filter, search, and batch safety reports. Conclusions: Results indicate that an ideal system for sharing expedited IND safety information is through a central portal used by all sponsors. Until this is feasible, electronic reporting portals should at least have consistent functionality. CTTI has issued recommendations to improve the quality and use of electronic portals.

  • Alcohol intake. Image source: https://pixabay.com/en/drink-party-club-night-night-club-654938/. Author: Designatic. Copyright: CC0 Public Domain.

    Alcohol Intake Among Breast Cancer Survivors: Change in Alcohol Use During a Weight Management Intervention

    Abstract:

    Background: Daily alcohol intake in quantities as small as half a drink/day significantly increases the risk of breast cancer recurrence for postmenopausal survivors. Interventions designed to modify alcohol use among survivors have not been studied; however, lifestyle interventions that target change in dietary intake may affect alcohol intake. Objective: To evaluate change in alcohol use during a weight loss intervention for obese, rural-dwelling breast cancer survivors. Methods: Data were derived from an 18-month trial that included a 6-month weight loss intervention delivered via group conference calls, followed by a 12-month randomized weight loss maintenance phase in which participants received continued group calls or mailed newsletters. Participants who reported regular alcohol use at baseline (N=37) were included in this study. Results: Mean daily alcohol intake significantly decreased from baseline to 6 months during the weight loss intervention (19.6-2.3 g; P=.001). Mean alcohol intake did not significantly increase (b=0.99, P=.12) during the weight loss maintenance phase (months 6-18) and did not depend on randomization group (b=0.32, P=.799). Conclusions: Findings provide preliminary evidence that a weight loss intervention may address obesity and alcohol use risk factors for cancer recurrence. Minimal mail-based contact post weight loss can maintain alcohol use reductions through 18 months, suggesting durability in these effects. These results highlight a possibility that lifestyle interventions for survivors may modify health behaviors that are not the main foci of an intervention but that coincide with intervention goals. Trial Registration: Clinicaltrials.gov NCT01441011; https://clinicaltrials.gov/ct2/show/NCT01441011 (Archived by WebCite at http://www.webcitation.org/6lsJ9dMa9)

  • CANKADO. Image sourced and copyright owned by authors.

    eHealth in Modern Patient-Caregiver Communication: High Rate of Acceptance Among Physicians for Additional Support of Breast Cancer Patients During Long-Term...

    Abstract:

    Background: Lack of adherence and compliance with drug regimens among breast cancer patients represent substantial problems in oral therapies, leading to significant impacts on mortality. Where other systems have failed, electronic health (eHealth) could be a possible solution to improve medication intake, along with the doctor-patient relationship. Initial results from studies concerning new interventions for therapy support are promising, but reports suggest that general acceptance of new treatment support tools is needed among patients and physicians alike. Objective: The aim of this study was to investigate the actual use of the Internet and other modern media among physicians involved in breast cancer treatment. Methods: Using a standardized questionnaire, actual utilization of new media among physicians was analyzed. Internet-related behaviors in private, as well as in business life, were investigated. Attention was focused on physicians’ opinions regarding modern eHealth tools and how patients could be best supported to enhance adherence. Results: A total of 120 physicians, all participating in breast cancer care, completed the questionnaire (median age 41 years). Almost all participants (99.2%, 119/120) used the Internet for general purposes and 98.3% (118/120) used it for medical issues as well. Virtually all medical professionals (99.2%, 119/120) reported that they owned a computer, while more recently invented technologies such as tablets and smartphones were owned by 31.9% (38/119) and 73.1% (87/119), respectively. The Internet was favored by 66.4% (79/119) of the physicians in our survey as a source for patient support; 71.2% (84/118) would also favor modern media for side effect registration. Based on our analysis, the most frequent Internet-utilizing physicians were characterized by age <60, worked in a hospital, and were employed as a junior physician. Conclusions: This study demonstrated a high usage of Internet-related technologies among physicians, indicating that the use of eHealth for advanced and individualized support in breast cancer care is a promising addition to treatment management. Such technologies have the potential to enhance adherence and compliance in therapy among cancer patients.

  • Image Source: Making Strides Against Breast Cancer balloon, copyright, Nesbitt_Photo.
http://tinyurl.com/hab8hcw, Licensed under Creative Commons Attribution cc-by 2.0 https://creativecommons.org/licenses/by/2.0/.

    EHealth Acceptance and New Media Preferences for Therapy Assistance Among Breast Cancer Patients

    Abstract:

    Background: Electronic health (eHealth) and mobile communication-based health care (mHealth) applications have been increasingly utilized in medicine over the last decade, and have facilitated improved adherence to therapy regimens in patients with chronic conditions. Due to the long duration of breast cancer therapy, and the long course of disease in metastatic breast cancer, a need for more intensified physician-patient communication has emerged. Various support mechanisms, including new media such as mHealth and eHealth, have been proposed for this purpose. Objective: The aim of this study was to analyze the correlation between sociodemographic factors, as well as health status of breast cancer patients, and their current utilization of new media, or their willingness to use Internet and mobile phone apps for improvement of therapy management. Methods: The survey for this study was conducted anonymously during the 2012 Mamazone Projekt Diplompatient meeting (Augsburg, Germany), which hosted approximately 375 participants per day. A total of 168 questionnaires were completed. The questionnaire aimed to assess sociodemographic status, disease patterns, and current use of new media (ie, Internet, mobile phone, and mobile phone apps) in breast cancer patients. Habits and frequency of use for these new technologies, as well as patients’ affinity towards eHealth and mHealth tools for therapy management improvement, were investigated. Results: Almost all participants used the Internet (95.8%, 161/168), with 91.5% (151/165) also utilizing this technology for health-related issues. Approximately 23% (38/168) of respondents owned a mobile phone. When asked about their preferences for therapy assistance, 67.3% (113/168) of respondents were interested in assistance via the Internet, 25.0% (42/168) via mobile phone, and 73.2% (123/168) via call center. Patients diagnosed with breast cancer <5 years before the survey were significantly more interested in a call center than patients diagnosed >5 years before survey participation. Conclusions: The vast majority of breast cancer patients accept the Internet for therapy assistance, which indicates that eHealth is a promising medium to improve patient-physician communication. Such technologies may improve individual disease management and ultimately lead to an enhanced adherence to therapy regimens.

  • Care Planning for Cancer Patients. Image source: https://www.pexels.com/photo/person-apple-laptop-notebook-157/. License: CC0 License.

    Comparing Web-Based Provider-Initiated and Patient-Initiated Survivorship Care Planning for Cancer Patients: A Randomized Controlled Trial

    Abstract:

    Background: Survivorship care plans (SCPs) are intended to facilitate communication and coordination between patients, oncologists, and primary care providers. Most SCP initiatives have focused on oncology providers initiating the SCP process, but time and resource barriers have limited uptake. Objective: This trial compares the feasibility and value of 2 Web-based SCP tools: provider-initiated versus patient-initiated. Methods: This mixed-methods study recruited clinicians from 2 academically-affiliated community oncology practices. Eligible patients were treated by a participating oncologist, had nonmetastatic cancer, completed acute treatment ≤ 2 months before enrollment, and had no evidence of disease. Patients were randomized 1:1 to either provider-initiated or patient-initiated SCPs—both are Web-based tools. We conducted qualitative interviews with providers at baseline and follow-up and with patients 2 months after enrollment. In addition, patients were administered the Preparing for Life as a (New) Survivor (PLANS) and Cancer Survivors’ Unmet Needs (CaSUN) surveys at baseline and 2 months. Results: A total of 40 providers were approached for the study, of whom 13 (33%) enrolled. Providers or clinic staff required researcher assistance to identify eligible patients; 41 patients were randomized, of whom 25 completed follow-up (61%; 13 provider-initiated, 12 patient-initiated). Of the 25, 11 (44%) had initiated the SCP; 5 (20%) provided the SCP to their primary care provider. On the Preparing for Life as a (New) Survivor and Cancer Survivors’ Unmet Needs, patients in both arms tended to report high knowledge and confidence and few unmet needs. In qualitative interviews, providers and patients discussed SCPs’ value. Conclusions: Regardless of patient- versus provider-initiated templates and the Web-based design of these tools, barriers to survivorship care planning persist. Further efforts should emphasize workflow functions for identifying and completing SCPs—regardless of the SCP form used. Trial Registration: ClinicalTrials.gov NCT02405819; https://clinicaltrials.gov/ct2/show/NCT02405819 (Archived by WebCite at http://www.webcitation.org/6jWqcWOvK)

  • Screenshot of the home page of our research Facebook profile.

    Like or Dislike? Impact of Facebook on Ewing Sarcoma Treatment

    Abstract:

    Background: An increasing number of patients are raising their voices in online forums to exchange health-related information. Facebook is the leading social media platform with more than 1 billion international daily users recorded in the summer of 2015. Facebook has a dynamic audience and is utilized in a number of ways, discussing medical issues being one of them. Ewing sarcoma mainly affects teenagers and young adults. Additionally, many individuals within this age group are regular users of Facebook. However, little is known about the impact of this modern way of communication via Web-based platforms on patients with Ewing sarcoma and their social environment. Objective: The aim of this study was to analyze and compare Ewing sarcoma patients’ and relatives’ behavior on Facebook to draw conclusions regarding the impact of Facebook on Ewing sarcoma treatment. Methods: We examined a Facebook group named “Ewing Sarcoma Awareness” that is used to exchange information for both patients and relatives regarding Ewing sarcoma. A self-designed questionnaire was used to compare patients’ and relatives’ answers. Additionally, we analyzed all processes (posts, likes, threads, links) in the group for 6 consecutive months. A total of 65 members of the Facebook group (26 patients, 39 relatives) out of 2227 international group members participated in our study. Results: More than 70% (46/65) of all participants reported that they use the group Ewing Sarcoma Awareness as a source of information about Ewing sarcoma. Of the participants, 89% (58/65) agreed on our scale from a little to a lot that being in contact with other affected people through the group makes it easier to handle the diagnosis. In this study, 20% (13/65) of all participants reported that the group affected their choice of treatment and 15% (10/65) of participants were influenced in the selection of their specialist. Regarding the recommendation of the Facebook group toward other people, significant differences (P=.003) were found comparing patients’ and relatives’ results. During the last 6 months most activities in the group concerned sharing destiny and handling the diagnosis. Conclusions: The Facebook group Ewing Sarcoma Awareness has a relevant impact on group members regarding their choice of treatment. Moreover, participants turn toward the group to receive mental and emotional support in everyday life. Statements made within the group are in part questionable from a medical point of view and the impact made by these statements on patients’ care requires further evaluation.

  • Computer and iPad. Image source: https://www.pexels.com/photo/notebook-working-macbook-technology-34125/.

    Online Social Engagement by Cancer Patients: A Clinic-Based Patient Survey

    Abstract:

    Background: The Internet is commonly used as a source of health information, but little is known about the Internet practices specific to cancer patients. Objective: To understand cancer patients’ use of the Internet as an informational resource and for social support. Methods: The researchers conducted a survey of 1282 patients at a comprehensive cancer center to assess frequency of Internet access and online behaviors. Results: Of the cancer patients surveyed, 1096 (85.49%) had Internet access; of those with Internet access, 953 (86.95%) reported going online at least weekly, and 747 (68.16%) reported daily online activity. Grouping Internet users by their level of online social engagement revealed that out of 1096 users, 331 (30.20%) had not sought out social connections online, 227 (20.71%) had read about experiences from other cancer patients, 410 (37.41%) had also written about their personal experiences, and 128 (11.68%) had participated in a formal online group for cancer patients. Increased online social engagement was associated with an increased perception that the Internet was useful for social support. Conclusions: Internet use among cancer patients was common, and most patients reported that they found useful information about their cancer diagnosis online. Cancer patients who actively posted or shared content perceived more social support from the Internet than those who used the Internet solely as an informational resource or to read about other cancer patients’ experiences. Physicians have a great opportunity to direct users to quality health information on the Web.

  • Source: http://tinyurl.com/j4dvbpc, CC0 Public Domain.

    Online Versus Telephone Methods to Recruit and Interview Older Gay and Bisexual Men Treated for Prostate Cancer: Findings from the Restore Study

    Abstract:

    Background: Recently, researchers have faced the challenge of conflicting recommendations for online versus traditional methods to recruit and interview older, sexual minority men. Older populations represent the cohort least likely to be online, necessitating the use of traditional research methods, such as telephone or in-person interviews. By contrast, gay and bisexual men represent a population of early adopters of new technology, both in general and for medical research. In a study of older gay and bisexual men with prostate cancer, we asked whether respondents preferred online versus offline methods for data collection. Given the paucity of research on how to recruit older gay and bisexual men in general, and older gay and bisexual men with prostate cancer in particular, we conducted an observational study to identify participant preferences when participating in research studies. Objective: To test online versus offline recruitment demographic data collection, and interview preferences of older gay and bisexual men with prostate cancer. Methods: Email blasts were sent from a website providing support services for gay and bisexual men with prostate cancer, supplemented with an email invitation from the web-host. All invitations provided information via the study website address and a toll-free telephone number. Study tasks included respondents being screened, giving informed consent, completing a short survey collecting demographic data, and a 60-75 minute telephone or Internet chat interview. All materials stressed that enrollees could participate in each task using either online methods or by telephone, whichever they preferred. Results: A total of 74 men were screened into the study, and 30 were interviewed. The average age of the participants was 63 years (standard deviation 6.9, range 48-75 years), with most residing in 14 American states, and one temporarily located overseas. For screening, consent, and the collection of demographic data, 97% (29/30) of the participants completed these tasks using online methods. For the interview, 97% (29/30) chose to be interviewed by telephone, rather than Internet chat. Conclusions: Older gay and bisexual men, when given choices, appear to prefer a mixed methods approach to qualitative investigations. For most aspects of the study, the older men chose online methods; the exception was the interview, in which case almost all preferred telephone. We speculate that a combination of the deeply personal nature of the topic (sexual effects of prostate cancer treatment), unfamiliarity with online chat, and possibly the subject burden involved in extensive typing contributed to the preference of telephone versus online chat. Recruitment of older men into this study showed good geographic diversity. We recommend that other qualitative researchers consider a mixed methods approach when recruiting older populations online.

  • Px Healthcare. Image sourced and copyright owned by authors Danny Young-Afat et al.

    Patients’ and Health Care Providers’ Opinions on a Supportive Health App During Breast Cancer Treatment: A Qualitative Evaluation

    Abstract:

    Background: Health apps are increasingly being used in clinical care and may hold significant theoretical potential. However, they are often implemented in clinical care before any research has been done to confirm actual benefits for patients, physicians, and researchers. Objective: This study aimed to explore experiences of patients and health care providers with the use of a supportive breast cancer app during the first 6 months following diagnosis, in terms of benefits for clinical practice and research purposes. Methods: Between June 2013 and April 2014, breast cancer patients of all ages were invited shortly after diagnosis to use a supportive breast cancer app, and were followed for 6 months. Patients were asked to use the app at their own convenience. In-depth interviews were conducted regularly with patients and their medical team (ie, physicians and nurses) to evaluate their experiences. Results: A total of 15 patients aged 30-63 years participated. The medical team consisted of 7 physicians and 3 specialized breast cancer nurses. Out of the 15 patients, 12 (80%) used the app to obtain information on breast cancer and treatment. A total of 11 out of 12 patients (92%) evaluated this information as useful. All 15 patients used the app to record consultations with practitioners, and 14 (93%) found this useful. Symptom registration was used by 8 out of 15 patients (53%), and was found useful by 4 out of these 8 patients (50%). Overall, 14 out of 15 patients (93%) would recommend the app to other patients. The app, in particular the recording function, was rated as useful by 9 out of 10 medical professionals (90%), and they reported that it did not increase consultation time. These 9 professionals would recommend the app to their patients. Conclusions: This evaluation of a supportive health app shows positive experiences among patients and their medical teams. Based on experiences in this study, patients may need to be actively encouraged to regularly register symptoms within health apps to generate sufficient patient-reported app data for use in clinical practice and scientific research.

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  • Toward Timely Data for Cancer Research: Assessment and Re-engineering of Cancer Reporting Process.

    Date Submitted: Feb 15, 2017

    Open Peer Review Period: Feb 16, 2017 - Apr 13, 2017

    Background: Cancer registries systematically collect cancer-related data to support cancer surveillance activities. However, cancer data is often unavailable for months to years after diagnosis, limit...

    Background: Cancer registries systematically collect cancer-related data to support cancer surveillance activities. However, cancer data is often unavailable for months to years after diagnosis, limiting its utility. Objective: The goal of this study is to identify the barriers to rapid cancer reporting and identify ways to shorten the turnaround time. Methods: Certified cancer registrars reporting to the Indiana state cancer registry participated in a semi-structured interview. Registrars were asked to describe the reporting process, estimate the duration of each step, and identify any barriers that may impact the reporting speed. Qualitative data analysis was performed with the intent of generating recommendations for workflow redesign. The existing and redesigned workflow were simulated for comparison. Results: Barriers to rapid reporting included access to medical records from multiple facilities and the waiting period from diagnosis to treatment. The redesigned workflow focused on facilitating data sharing between registrars and applying a more efficient queuing technique while registrars await the delivery of treatment. The simulation results demonstrated that our recommendations to reduce the waiting period and share information could potentially improve the average reporting speed by 87 days. Conclusions: Knowing the time elapsing at each step within the reporting process helps in prioritizing the needs and estimating the impact of future interventions. Where some previous studies focused on automating some of the cancer reporting activities, we anticipate much shorter reporting by leveraging health information technologies to target this waiting period.

  • Comparison of internet and telephone interventions for weight loss among cancer survivors: A randomize control trial and feasibility study

    Date Submitted: Jan 22, 2017

    Open Peer Review Period: Jan 22, 2017 - Mar 19, 2017

    Background: Weight loss interventions have been successfully delivered via several modalities, but recent research has focused on more disseminable and sustainable means such as telephone or internet-...

    Background: Weight loss interventions have been successfully delivered via several modalities, but recent research has focused on more disseminable and sustainable means such as telephone or internet-based platforms. Objective: The aim of this study was to compare an internet delivered weight loss intervention to a comparable telephone delivered weight loss intervention. Methods: This randomized pilot study examined the effects of 6-month telephone- and internet-delivered Social Cognitive Theory-based weight-loss interventions among 37 cancer survivors. Measures of body composition, physical activity, diet, and physical performance were the outcomes of interest. Results: Participants in the telephone intervention (n = 13) showed greater decreases in waist circumference (-0.75cm for telephone vs. -0.09cm for internet, P = .03) than the internet condition (n = 24) and several other outcomes trended in the same direction. Measures of engagement (e.g., number of telephone sessions completed and number of logins) suggest differences between groups which may account for difference in outcomes. Conclusions: Cancer survivors in the telephone group evidenced better health outcomes than the internet group. Group differences may be due to higher engagement in the telephone group. Incorporating a telephone-based component into existing weight loss programs for cancer survivors may help enhance the reach of the intervention while minimizing costs. More research is needed on how to combine internet and telephone weight loss intervention components so as to maximize engagement and outcomes. Clinical Trial: Registered with www.clinicaltrials.gov with the following identifier NCT01311856

  • The impact of participation in online cancer communities on patient reported outcomes. A systematic review.

    Date Submitted: Jan 12, 2017

    Open Peer Review Period: Jan 18, 2017 - Mar 15, 2017

    Background: The concept of ‘online community’ has developed in recent years as a result of improved technical possibilities. By participating, people gain insight into their illness and as members...

    Background: The concept of ‘online community’ has developed in recent years as a result of improved technical possibilities. By participating, people gain insight into their illness and as members they usually search for others in comparable circumstances. The effect of participating in online communities on different outcomes of interest, has increasingly been investigated. Objective: The objective of this study was to systematically review all available literature concerning changes in patient reported outcomes (PROs) when cancer patients participate in online communities and the characteristics of patients who report positive effects. Methods: A computerized search of the literature via PubMed and Science Direct was performed. Last search was april 2016. Articles were included with the the following terms: cancer, patients, support group, health communities, internet. Twentyone articles were selected and were subjected to a 11-item quality checklist independently by two investigators. Results: The methodological quality of the selected studies varied; 12 were of high quality, 8 adequate and only 1 of low quality. Respondents were mostly women with breast cancer with a mean age of 50. Patients who are active online were mostly younger and higher educated than the non-users. The investigated PROs ranged from screening for general wellbeing (i.e. mood or health) through depression, anxiety, quality of life and post-traumatic growth, to cancer-related concerns. The effects found - i.e. PRO improvements - were overall marginal, in most cases insignificant and sometimes contradictory. Conclusions: Discussion: The big problem for this kind of studies is the lack of methodological instruments for reliable measuring. Conclusion: Some patients need online communities or online interaction, but do not expect to measure effects in PROs. If cancer survivors want to meet other survivors and share information or get support, online communities are a trustful possibility to make this happen.

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