Characterizing informational needs and information seeking behavior of patients with breast cancer.
Ontology highlight
ABSTRACT: Background
Appropriate information may facilitate adjustment to cancer diagnoses. Our study aims to characterize informational satisfaction in breast cancer patients and assess resources used by patients to gain information.Methods
Newly diagnosed Stage 0-III breast cancer patients seen at an academic medical center between May and September 2020 received questionnaires assessing information satisfaction. Patients indicated resources used to obtain information along with satisfaction with information received in various topics. A subset of questionnaire respondents completed semi-structured interviews.Results
Fifty-two (35 %) patients completed the questionnaire. Patients received information from physicians (96 %), the internet (81 %), nurses (79 %), and fellow breast cancer patients (54 %). Interview participants preferred receiving information from providers when making medical decisions but found patient forums and social media to be important adjuncts for receiving information.Conclusion
Patients are satisfied with information received about diagnosis and treatment, but finances, sexual health, and fertility are less frequently discussed.
SUBMITTER: Ludwigson A
PROVIDER: S-EPMC11376347 | biostudies-literature | 2024 Jan
REPOSITORIES: biostudies-literature
Publications
Characterizing informational needs and information seeking behavior of patients with breast cancer.
Ludwigson Abigail A Huynh Victoria V Vemuru Sudheer S Romandetti Karina K Fisher Christine C Coons Helen L HL Pettigrew Jessica J Hampanda Karen K Kaoutzanis Christodoulos C Ahrendt Gretchen G Afghahi Anosheh A Stewart Camille C Tevis Sarah S
American journal of surgery 20231008
<h4>Background</h4>Appropriate information may facilitate adjustment to cancer diagnoses. Our study aims to characterize informational satisfaction in breast cancer patients and assess resources used by patients to gain information.<h4>Methods</h4>Newly diagnosed Stage 0-III breast cancer patients seen at an academic medical center between May and September 2020 received questionnaires assessing information satisfaction. Patients indicated resources used to obtain information along with satisfac ...[more]
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| S-EPMC11697865 | biostudies-literature
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.
| S-EPMC7177431 | biostudies-literature
Project description:BackgroundGenetic testing, especially in pharmacogenomics, can have a major impact on patient care. However, most physicians do not feel that they have sufficient knowledge to apply pharmacogenomics to patient care. Online information resources can help address this gap. We investigated physicians' pharmacogenomics information needs and information-seeking behavior, in order to guide the design of pharmacogenomics information resources that effectively meet clinical information needs.MethodsWe performed a formative, mixed-method assessment of physicians' information-seeking process in three pharmacogenomics case vignettes. Interactions of 6 physicians' with online pharmacogenomics resources were recorded, transcribed, and analyzed for prominent themes. Quantitative data included information-seeking duration, page navigations, and number of searches entered.ResultsWe found that participants searched an average of 8 min per case vignette, spent less than 30 s reviewing specific content, and rarely refined search terms. Participants' information needs included a need for clinically meaningful descriptions of test interpretations, a molecular basis for the clinical effect of drug variation, information on the logistics of carrying out a genetic test (including questions related to cost, availability, test turn-around time, insurance coverage, and accessibility of expert support).Also, participants sought alternative therapies that would not require genetic testing.ConclusionThis study of pharmacogenomics information-seeking behavior indicates that content to support their information needs is dispersed and hard to find. Our results reveal a set of themes that information resources can use to help physicians find and apply pharmacogenomics information to the care of their patients.
| S-EPMC5540399 | biostudies-literature
Project description:ObjectiveThe aim of the study was to compare the informational needs of patients with ANCA-associated vasculitis (AAV).MethodsWe developed a Vasculitis Informational Needs Questionnaire that was distributed to members of Vasculitis UK (VUK) by mail and registrants of the Vasculitis Clinical Research Consortium (VCRC) online registry with self-reported AAV. Patients were asked to use a 5-point scale (1 = not important, 5 = extremely important) to rank aspects of information in the following domains: disease, investigations, medication, disease management and psychosocial care. The source and preferred method of educational delivery were recorded.ResultsThere were 314 VUK and 273 VCRC respondents. Respondents rated information on diagnosis, prognosis, investigations, treatment and side effects as extremely important. Information on patient support groups and psychosocial care was less important. There was no difference in the ratings of needs based on group, sex, age, disease duration, disease or method of questionnaire delivery. The most-preferred methods of providing information for both groups were by a doctor (with or without written material) or web based; educational courses and compact disc/digital video disc (CD/DVD) were the least-preferred methods.ConclusionThis study demonstrates that people with AAV seek specific information concerning their disease, treatment regimes and side effects and the results of investigations. Individuals preferred to receive this information from a doctor. Patients with AAV should be treated in a similar manner to patients with other chronic illnesses in which patient education is a fundamental part of care.
| S-EPMC4103516 | biostudies-literature
Project description:BackgroundBreast cancer has become one of the most frequently diagnosed carcinomas and the leading cause of cancer deaths. The substantial growth in the number of breast cancer patients has put great pressure on health services. Meanwhile, the information patients need has increased and become more complicated. Therefore, a comprehensive and in-depth understanding of their information needs is urgently needed to improve the quality of health care. However, previous studies related to the information needs of breast cancer patients have focused on different perspectives and have only contributed to individual results. A systematic review and synthesis of breast cancer patients' information needs is critical.ObjectiveThis paper aims to systematically identify, evaluate, and synthesize existing primary qualitative research on the information needs of breast cancer patients.MethodsWeb of Science, EBSCO, Scopus, ProQuest, PubMed, PsycINFO, The Cochrane Library, the Cumulative Index to Nursing and Allied Health Literature were searched on February 12 and July 9, 2019, to collect relevant studies. A Google Scholar search, interpersonal network recommendations, and reference chaining were also conducted. Eligible studies included qualitative or mixed-methods studies focusing on the information needs (across the cancer continuum) of breast cancer patients or their social networks. Subsequently, a Critical Appraisals Skills Programme checklist was used to assess the quality of included research. The results, findings, and discussions were extracted. Data analysis was guided by the theory-generating meta-synthesis and grounded theory approach.ResultsThree themes, 19 categories, and 55 concepts emerged: (1) incentives (physical abnormality, inquiry from others, subjective norm, and problems during appointments); (2) types of information needs (prevention, etiology, diagnosis, clinical manifestation, treatment, prognosis, impact and resumption of normal life, scientific research, and social assistance); (3) moderating variables (attitudes, health literacy, demographic characteristics, disease status, as well as political and cultural environment). The studies revealed that the information needs of breast cancer patients were triggered by different incentives. Subsequently, the patients sought a variety of information among different stages of the cancer journey. Five types of variables were also found to moderate the formation of information needs.ConclusionsThis study contributes to a thorough model of information needs among breast cancer patients and provides practical suggestions for health and information professionals.
| S-EPMC7420822 | biostudies-literature
Project description:ObjectivesThis study evaluated emotional, informational and instrumental support needs in patients with breast cancer who had undergone surgery, then identified the variables associated with those needs.DesignThis was a cross-sectional survey study.SettingQuestionnaires were distributed in tertiary hospitals in China between January 2018 and July 2020.ParticipantsWe recruited 477 eligible patients with breast cancer via convenience sampling. Due to exclusions for response errors, the final analysed sample included 461 participants (mean age of 50.9 years). Each completed a questionnaire consisting of a sociodemographic information component and three short forms from the Patient-Reported Outcome Measurement Information System (social relationships short forms, anxiety short form and depression short form). Subsequent analyses included the χ2 test, Pearson correlation and multivariate regression.ResultsThe T scores for informational support were lower than those for the reference group (general population), while those for emotional and informational support were average. Marital status, childbearing history, lifestyle, employment status, anxiety and depression levels were related to the scores for emotional, informational and instrumental support in this population. The regression analysis revealed that emotional support levels, instrumental support levels, marital status, employment status, anxiety and depression outcomes were predictors for informational support levels.ConclusionsInformational support should be specifically assessed and promoted among patients with breast cancer in general, while marital status, childbearing history, lifestyle, employment status, anxiety and depression levels should be evaluated when conducting interventions to promote emotional, informational and instrumental support for those who have undergone surgery. Early and regular screenings for high-risk patients will help nurses identify those who are likely to benefit from targeted preventive interventions aimed at emotional, informational and instrumental support issues.Trial registration numberChiCTR2000035439; ClinicalTrials.gov registry.
| S-EPMC8354258 | biostudies-literature
Project description:BackgroundAt present, the participation rate in cancer screening is still not ideal, and the lack of screening information or misunderstanding of information is an important factor hindering cancer screening behaviour. Therefore, a systematic synthesis of information needs related to cancer screening is critical.MethodsOn July 23, 2024, we searched the Cochrane Library, MEDLINE (Ovid), Embase, EBSCO, PsycINFO, Scopus, ProQuest, PubMed, Web of Science, and CINAHL to collect qualitative or mixed-methods studies on information needs of cancer screening. We also searched for grey literature on OpenGrey and Google websites. Data were synthesised using Sandelowski and Barroso's framework. A top-down approach was adopted to group and synthesise the encodes and then generate analytical themes.ResultsA total of 37 studies were included. The results of the analysis of cancer screening-related information needs content, cancer-specific information needs content, requirements and preferences for information, and associated factors of information-seeking behaviour were reported. Based on the event timeline, we summarised the information needs of the screening demand side into four themes. Their information needs focus on disease risk factors, signs and symptoms, the importance of screening, the benefits and harms of screening, the detailed screening process, and screening results and explanations. Regarding cancer-specific information needs content, we summarised the specific information needs of cervical, breast, colorectal, and lung cancer. By referring to relevant concepts in the Comprehensive Model of Information Seeking, we synthesised the requirements and preferences for information according to the themes of editorial tone, communication potential, recommended information channels, and recommended source place. The information-seeking behaviours of the screening demanders are mainly passive attention and active searching. The common factors leading to the passive attention of screening demanders are demographic factors and fear of cancer. The most common reason for them to actively search information is lack of information.ConclusionsThe list of information needs identified in this review can serve as a reference for health professionals and information service providers before carrying out screening-related work to help the cancer screening participants obtain valuable information.
| S-EPMC11684248 | biostudies-literature
Project description:BACKGROUND:People engage in health information-seeking online when experiencing unusual or unfamiliar bodily changes. It is not well understood how people consult the internet for health information after the onset of unfamiliar symptoms and before receiving a potential diagnosis and how online information-seeking can help people appraise their symptoms. This lack of evidence may be partly due to methodological limitations in capturing in real time the online information-seeking process. OBJECTIVE:We explored women's symptom attribution and online health information-seeking in response to a hypothetical and unfamiliar breast change suggestive of cancer (nipple rash). We also aimed to establish the feasibility of capturing in real time the online information-seeking process with a tool designed to track participant online searches and visited websites, the Vizzata browser tracker. METHODS:An online survey was completed by 56 cancer-free women (mean age 60.34 [SD 7.73] years) responding to a scenario asking them to imagine noticing a red scaly rash on the nipple. Participants were asked to make symptom attributions when presented with the scenario (T1) and again after seeking information online (T2). The online tracking tool, embedded in the survey, was used to capture in real time participant search terms and accessed websites. RESULTS:The tracking tool captured the search terms and accessed websites of most of the participants (46/56, 82%). For the rest (10/56, 18%), there was evidence of engagement in online information-seeking (eg, medical terminology and cancer attribution at T2) despite their searching activity not being recorded. A total of 25 participants considered cancer as a potential cause for the nipple rash at T1, yet only one of these used cancer as a search term. Most participants (40/46, 87%) used rash-related search terms, particularly nipple rash and rash on nipple. The majority (41/46, 89%) accessed websites containing breast cancer information, with the National Health Service webpage "Paget disease of the nipple" being the most visited one. At T2, after engaging in the internet search task, more participants attributed the nipple rash to breast cancer than at T1 (37/46, 66% vs 25/46, 45%), although a small number of participants (6/46) changed from making a cancer attribution at T1 to a noncancer one at T2. CONCLUSIONS:Making a cancer attribution for an unfamiliar breast change did not necessarily translate into cancer-termed searches. Equally, not all internet searches led to a cancer attribution. The findings suggest that online information-seeking may not necessarily help women who experience unfamiliar breast cancer symptoms understand their condition. Despite some technical issues, this study showed that it is feasible to use an online browser tracking tool to capture in real time information-seeking about unfamiliar symptoms.
| S-EPMC6381403 | biostudies-literature
Project description:PurposeTo investigate the informational gap and predictors of information-seeking behaviour amongst survivors to inform survivorship planning and supportive cancer services for the population.MethodsA national cross-sectional survey of breast and colorectal cancer survivors was conducted in 2020 using a representative sample of those diagnosed in 2015/2016 as recruited from Jordan's Cancer Registry (JCR). Participants responded to a 3-domain questionnaire: background information (9 items); information typologies (13 items) measured on a 5-point Likert scale (from very interested to extremely not interested); timing of developing the information needs (13 items) (ranging from immediately after diagnosis to after recurrence). Logistic regression was used to determine the independent association between demographics and information-seeking behaviour amongst survivors. The chi-square test was employed to examine the association between categorical variables. ANOVA was used to compare the means of interest in cancer-related information between more than two groups.ResultsResults show a relatively high overall information needs amongst survivors (3.68 ± 1.53). The most prevalent typologies were cancer staging (3.77 ± 1.593), treatment options (3.76 ± 1.55), and doctors' communications (3.73 ± 1.62). ANOVA revealed no statistically significant differences between cancer types. 55.8% of patients desired information immediately after diagnosis and 23.3% developed their needs within 2 months. There was a statistically significant difference across all information typologies and educational attainment, age groups, monthly income, and employment (P < 0.05). Age was the only independent predictor of high information requirements amongst cancer survivors.ConclusionSurvivors reported high cancer information needs, suggesting that they may have been under-informed. Effective health communication programmes should be implemented to meet the informational needs.
| S-EPMC9213385 | biostudies-literature
Project description:ObjectiveTo explore the need for information and what information was actually received following prenatal diagnosis of a congenital heart defect, in a country where termination of pregnancy beyond 22 weeks of gestation is not easily possible because of legal constraints.MethodsTwenty-six Swedish-speaking pregnant women (n = 14) and partners (n = 12) were consecutively recruited for semi-structured telephone interviews following the prenatal diagnosis of a congenital heart defect. Data were analyzed using content analysis.ResultsAlthough high satisfaction with the specialist information was described, the information was considered overwhelming and complex. Objective, honest, and detailed information about multiple subjects were needed, delivered repeatedly, and supplemented by written information/illustrations. Eighteen respondents had used the Internet to search for information and identified issues involving searching difficulties, low quality, and that it was too complex, insufficient, or unspecific. Those who terminated their pregnancy criticized that there was a lack of information about termination of pregnancy, both from health professionals and online sources, resulting in unanswered questions and unpreparedness.ConclusionIndividuals faced with a prenatal diagnosis of a congenital heart defect need individualized and repeated information. These needs are not all adequately met, as individuals are satisfied with the specialist consultation but left with unanswered questions regarding pregnancy termination. © 2016 John Wiley & Sons, Ltd.
| S-EPMC5074242 | biostudies-literature