Dataset Information

Evolving Information Needs among Colon, Breast, and Prostate Cancer Survivors: Results from a Longitudinal Mixed-Effects Analysis.

ABSTRACT: This study describes how cancer survivors' information needs about recurrence, late effects, and family risks of cancer evolve over the course of their survivorship period.Three annual surveys were conducted from 2006 to 2008 in a cohort of Pennsylvania cancer survivors diagnosed with colon, breast, or prostate cancer in 2005 (round 1, N = 2,013; round 2, N = 1,293; round 3, N = 1,128). Outcomes were information seeking about five survivorship topics. Key predictors were survey round, cancer diagnosis, and the interaction between these variables. Mixed-effects logistic regression analyses were performed to predict information seeking about each topic, adjusting for demographic variables, clinical characteristics, and clustering of repeated observations within individuals.Information seeking about reducing risks of cancer recurrence was the most frequently reported topic across survivors and over time. Breast cancer survivors were more likely to seek about survivorship topics at round 1 compared with other survivors. In general, information seeking declined over time, but cancer-specific patterns emerged: the decline was sharpest for breast cancer survivors, whereas in later years female colon cancer survivors actually sought more information (about how to reduce the risk of family members getting colon cancer or a different cancer).Cancer survivors' information needs varied over time depending on the topic, and these trends differed by cancer type.Clinicians may need to intervene at distinct points during the survivorship period with information to address concerns about cancer recurrence, late effects, and family members' risks.

SUBMITTER: Tan AS

PROVIDER: S-EPMC4490951 | biostudies-literature | 2015 Jul

REPOSITORIES: biostudies-literature

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Evolving Information Needs among Colon, Breast, and Prostate Cancer Survivors: Results from a Longitudinal Mixed-Effects Analysis.

Tan Andy S L AS Nagler Rebekah H RH Hornik Robert C RC DeMichele Angela A

Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology 20150515 7

<h4>Background</h4>This study describes how cancer survivors' information needs about recurrence, late effects, and family risks of cancer evolve over the course of their survivorship period.<h4>Methods</h4>Three annual surveys were conducted from 2006 to 2008 in a cohort of Pennsylvania cancer survivors diagnosed with colon, breast, or prostate cancer in 2005 (round 1, N = 2,013; round 2, N = 1,293; round 3, N = 1,128). Outcomes were information seeking about five survivorship topics. Key predi ...[more]

PMID: 25979968

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Project description:BackgroundInternet and social media platforms offer insights into the lived experiences of survivors of cancer and their caregivers; however, the volume of narrative data available is often cumbersome for thorough analysis. Survivors of gynecological cancer have unique needs, such as those related to a genetic predisposition to future cancers, impact of cancer on sexual health, the advanced stage at which many are diagnosed, and the influx of new therapeutic approaches.ObjectiveThis study aimed to present a unique methodology to leverage large amounts of data from internet-based platforms for mixed methods analysis. We analyzed discussion board posts made by survivors of gynecological cancer on the American Cancer Society website with a particular interest in evaluating the psychosocial aspects of survivorship.MethodsAll posts from the ovarian, uterine, and gynecological cancers (other than ovarian and uterine) discussion boards on the American Cancer Society Cancer Survivors Network were included. Posts were web scraped using Python and organized by psychosocial themes described in the Quality of Cancer Survivorship Care Framework. Keywords related to each theme were generated and verified. Keywords identified posts related to the predetermined psychosocial themes. Quantitative analysis was completed using Python and R Foundation for Statistical Computing packages. Qualitative analysis was completed on a subset of posts as a proof of concept. Themes discovered through latent Dirichlet allocation (LDA), an unsupervised topic modeling technique, were assessed and compared with the predetermined themes of interest.ResultsA total of 125,498 posts made by 6436 survivors of gynecological cancer and caregivers between July 2000 and February 2020 were evaluated. Of the 125,489 posts, 23,458 (18.69%) were related to the psychosocial experience of cancer and were included in the mixed methods psychosocial analysis. Quantitative analysis (23,458 posts) revealed that survivors across all gynecological cancer discussion boards most frequently discussed the role of friends and family in care, as well as fatigue, the effect of cancer on interpersonal relationships, and health insurance status. Words related to psychosocial aspects of survivorship most often used in posts included "family," "hope," and "help." Qualitative analysis (20 of the 23,458 posts) similarly demonstrated that survivors frequently discussed coping strategies, distress and worry, the role of family and caregivers in their cancer care, and the toll of managing financial and insurance concerns. Using LDA, we discovered 8 themes, none of which were directly related to psychosocial aspects of survivorship. Of the 56 keywords identified by LDA, 2 (4%), "sleep" and "work," were included in the keyword list that we independently devised.ConclusionsWeb-based discussion platforms offer a great opportunity to learn about patient experiences of survivorship. Our novel methodology expedites the quantitative and qualitative analyses of such robust data, which may be used for additional patient populations.

Project description:BACKGROUND:Current medical professions involve an extensive knowledge of the latest validated scientific data to implement disease diagnosis, therapeutic strategies, and patient care. Although clinicians can refer to a growing number and type of information sources to keep current with new scientific achievements, there are still various concerns about medical information validity, quality, and applicability into clinical practice. Novel strategies are required to identify physicians' real-life needs with the final aim to improve modern medical information delivery. OBJECTIVE:Our research used an innovative tool to collect real-time physician queries in order to investigate information needs and seeking behavior of Italian neurologists treating patients with multiple sclerosis (MS) and migraine. METHODS:The study was designed as an exploratory mixed methods (ie, qualitative and quantitative) study involving 15 consecutive days of observation. A total of 50 neurologists (n=25 MS and n=25 migraine specialists) were recruited. Data were collected using an instant messaging mobile app designed for this research. At each information-seeking event, moderators triggered a computer-assisted personal interview including both semistructured interview and close-ended questions. Interactions and physician queries collected using the mobile app were coded into emerging themes by content analysis. RESULTS:Neurologist queries were relevant to the following major themes: therapy management (36/50, 71%) and drug-related information (34/50, 67%), followed by diagnostic strategies and procedures (21/50, 42%). Quantitative analysis indicated online resources were preferentially used by clinicians (48/50, 96%) compared with offline sources (24/50, 47%). A multichannel approach, in which both online and offline sources were consulted to meet the same need, was adopted in 33% (65/198) of information-seeking events. Neurologists more likely retrieved information from online relative to offline channels (F=1.7; P=.01). MS specialists were 53% more likely to engage in one information-seeking event compared with migraine neurologists (risk ratio 1.54; 95% CI 1.16-2.05). MS specialists tended to be more interested in patient-related content than migraine clinicians (28% [7/25] vs 10% [2/25], P=.06), who conversely more likely sought information concerning therapy management (85% [21/25] vs 60% [15/25], P=.05). Compared with MS clinicians, migraine specialists had a harder time finding the required information, either looking at online or offline channels (F=12.5; P=.01) and less frequently used offline channels (30% [8/25] vs 60% [15/25] of information-seeking events, P=.02). When multiple sources needed to be consulted to retrieve an information item, a reduced satisfaction rate was observed both among migraine and MS specialists (single source vs multiple sources P=.003). CONCLUSIONS:This study provides a detailed description of real-life seeking behavior, educational needs, and information sources adopted by Italian MS and migraine neurologists. Neurologist information needs and seeking behavior reflect the specific characteristics of the specialty area in which they operate. These findings suggest identification of time- and context-specific needs of clinicians is required to design an effective medical information strategy.

Project description:BackgroundPatient education materials given to breast cancer survivors may not be a good fit for their information needs. Needs may change over time, be forgotten, or be misreported, for a variety of reasons. An automated content analysis of survivors' postings to online health forums can identify expressed information needs over a span of time and be repeated regularly at low cost. Identifying these unmet needs can guide improvements to existing education materials and the creation of new resources.ObjectiveThe primary goals of this project are to assess the unmet information needs of breast cancer survivors from their own perspectives and to identify gaps between information needs and current education materials.MethodsThis approach employs computational methods for content modeling and supervised text classification to data from online health forums to identify explicit and implicit requests for health-related information. Potential gaps between needs and education materials are identified using techniques from information retrieval.ResultsWe provide a new taxonomy for the classification of sentences in online health forum data. 260 postings from two online health forums were selected, yielding 4179 sentences for coding. After annotation of data and training alternative one-versus-others classifiers, a random forest-based approach achieved F1 scores from 66% (Other, dataset2) to 90% (Medical, dataset1) on the primary information types. 136 expressions of need were used to generate queries to indexed education materials. Upon examination of the best two pages retrieved for each query, 12% (17/136) of queries were found to have relevant content by all coders, and 33% (45/136) were judged to have relevant content by at least one.ConclusionsText from online health forums can be analyzed effectively using automated methods. Our analysis confirms that breast cancer survivors have many information needs that are not covered by the written documents they typically receive, as our results suggest that at most a third of breast cancer survivors' questions would be addressed by the materials currently provided to them.

Project description:ImportanceThe 2-year ophthalmic sequelae of Ebola virus disease (EVD) in survivors of the 2013 to 2016 epidemic is unknown and may have public health implications for future outbreaks.ObjectiveTo assess the potential for uveitis recurrence, the behavior of dark without pressure, and visual outcomes in a cohort of Sierra Leonean survivors of EVD 2 years following the 2013 to 2016 Ebola epidemic.Design, setting, and participantsProspective, 1-year observational cohort study performed between 2016 and 2017 at 34 Military Hospital, Freetown, Sierra Leone. Participants included survivors of EVD who reported ocular symptoms since Ebola treatment unit discharge and were participants of a previous case-control study. Participants were invited for ophthalmic reexamination and finger-prick blood sampling for immunoglobulin G (IgG) to Toxoplasma gondii and HIV.ExposuresEbola virus disease.Main outcomes and measuresPrimary outcome measure: comparative ultra-widefield retinal imaging. Secondary outcome measures: visual acuity and detection of IgG to T gondii and HIV.ResultsOf 57 survivors of EVD who underwent repeated ophthalmic evaluation, 37 were women (64.9%). Mean (SD) age was 31.9 (11.1) years. Median interval between first and last examination was 370 days (interquartile range [IQR], 365-397.5 days), and median time from discharge to last examination was 779 days (IQR, 732-821 days). Fifteen eyes of 10 survivors (17.5%) had retinal lesions secondary to EVD. No new EVD-associated retinal lesions were observed. Two survivors (3.5%) developed new posterior uveitis resembling toxoplasmosis chorioretinitis and 41 (73%) were seropositive for T gondii IgG. Areas of dark without pressure were observed either confined to the perimeter of Ebola retinal lesions (n = 7) and non-Ebola lesions (n = 2), involving extensive retinal areas adjacent to Ebola retinal lesions (n = 4) and non-Ebola lesions (n = 2) or in isolation (n = 6). Both expansion and regression of areas of dark without pressure were observed over the study period. Best eye-presenting visual acuity had mild or no visual impairment in 55 survivors (96.4%) 2 years following discharge.Conclusions and relevanceVision was maintained in survivors of EVD 2 years following discharge. Evolving regions of dark without pressure may be associated with EVD retinal lesions and might suggest the presence of an ongoing intraretinal stimulus, which may be associated with infective etiology. Treatment strategies should account for the possibility of toxoplasmosis chorioretinitis recurrence within survivors of EVD.

Project description:BackgroundStatistical information (e.g., on long-term survival or side effects) may be valuable for healthcare providers to share with their patients to facilitate shared decision making on treatment options. In this pre-registered study, we assessed cancer survivors' need for generic (population-based) versus personalized (tailored towards patient/tumor characteristics) statistical information after their diagnosis. We examined how information coping style, subjective numeracy, and anxiety levels of survivors relate to these needs and identified statistical need profiles. Additionally, we qualitatively explored survivors' considerations for (not) wanting statistical information.MethodsCancer survivors' need for statistics regarding incidence, survival, recurrence, side effects and quality of life were assessed with an online questionnaire. For each of these topics, survivors were asked to think back to their first cancer diagnosis and to indicate their need for generic and personalized statistics on a 4-point scale ('not at all'- 'very much'). Associations between information coping style, subjective numeracy, and anxiety with need for generic and personalized statistics were examined with Pearson's correlations. Statistical need profiles were identified using latent class analysis. Considerations for (not) wanting statistics were analyzed qualitatively.ResultsOverall, cancer survivors (n = 174) had a higher need for personalized than for generic statistics (p < .001, d = 0.74). Need for personalized statistics was associated with higher subjective numeracy (r = .29) and an information-seeking coping style (r = .41). Three statistical need profiles were identified (1) a strong need for both generic and personalized statistics (34%), (2) a stronger need for personalized than for generic statistics (55%), and (3) a little need for both generic and personalized statistics (11%). Considerations for wanting personalized cancer statistics ranged from feelings of being in control to making better informed decisions about treatment. Considerations for not wanting statistics related to negative experience with statistics and to the unpredictability of future events for individual patients.ConclusionsIn light of the increased possibilities for using personalized statistics in clinical practice and decision aids, it appears that most cancer survivors want personalized statistical information during treatment decision-making. Subjective numeracy and information coping style seem important factors influencing this need. We encourage further development and implementation of data-driven personalized decision support technologies in oncological care to support patients in treatment decision making.

Dataset Information

Evolving Information Needs among Colon, Breast, and Prostate Cancer Survivors: Results from a Longitudinal Mixed-Effects Analysis.

Publications

Evolving Information Needs among Colon, Breast, and Prostate Cancer Survivors: Results from a Longitudinal Mixed-Effects Analysis.

Similar Datasets

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