A multi-institutional study of Internet utilization by radiation oncology patients

PURPOSE: Studies describing the use of the Internet by radiation oncology patients are lacking. This multi-institutional study of cancer patients presenting to academic (AC), community (CO), and veterans (VA) radiation oncology centers was designed to analyze the use of the Internet, demographic factors related to utilization, and barriers to access to the Internet. METHODS AND MATERIALS: A questionnaire evaluating the use of the Internet was administered to 921 consecutive patients presenting to radiation oncology centers at AC, CO, and VA medical centers. The study included 436 AC patients (47%), 284 CO patients (31%), and 201 VA patients (22%). A computer was available at home to 427 patients (46%), and 337 patients (37%) had E-mail access. The mean age of the patient population was 64 (range = 14-93). Males represented 70% of the patient population. The most common diagnoses included prostate cancer (33%), breast cancer (13%), and lung cancer (11%). RESULTS: Overall, 265/921 patients (29%) were using the Internet to find cancer-related information. The Internet was used by 42% of AC patients, 25% of CO patients, and only 5% of VA patients (p < 0.0001). A computer was available at home in 62% AC vs. 45% CO vs. 12% VA patients (p < 0.0001). Patients < 60 years were much more likely to use the Internet than older patients (p < 0.0001). Most of the Internet users considered the information either very reliable (22%) or somewhat reliable (70%). Unconventional medical therapies were purchased over the Internet by 12% of computer users. CONCLUSIONS: A significant number of cancer patients seen in radiation oncology departments at academic and community medical centers utilize the Internet to obtain information about cancer. Radiation oncologists must familiarize themselves with this resource because of the large number of patients using the Internet. Veterans lack the computerized access to this information and are thus underserved by this important resource.     

Use of information resources by patients with cancer and their companions

BACKGROUND: Use of the Internet is common among patients with cancer and their companions. However, little is known about patterns of use of print or telephone-based resources amidst growing Internet utilization, nor is it known whether different types of information are sought from electronic compared with print media. It is not clear as to whether patients and their companions differ in their patterns of content seeking. METHODS: A survey was developed to evaluate the use of electronic and nonelectronic informational resources by patients and their companions. During a 10-week period, this questionnaire was administered to 443 outpatients and 124 paired companions attending an urban academic cancer center. RESULTS: In this cohort, 64% of patients and 76% of companions were computer owners, with home Internet access indicated by 58% and 68%, respectively. Use of the Internet to obtain cancer-related information was reported by 44% of patients and 60% of companions. Print resources were used by 79% of patients and 83% of companions, with telephone resources used by 22% and 23%, respectively. The majority of Internet users also read print content (85%), whereas one-half of print users did not access data electronically (52%). Topic areas sought via print and the Internet were similar, with the exception of nutrition-related information, which was more commonly sought in print texts. There was a high rate of concordance between patient and companion use of both electronic and nonelectronic resources. CONCLUSIONS: Despite recent publicity and scrutiny focusing on the quality of Internet health care content, print products remain the most common source of information sought by patients with cancer. Future investigation should focus on the quality of print products used by patients.     

Internet use by cancer patients: should oncologists ‘prescribe’ accurate web sites in combination with chemotherapy? A survey in a Spanish cohort

BackgroundCancer patients search for information about prognosis and treatment. Internet has become a major source of medical information. Its impact on oncology patients is not well known.Patients and methodsThree hundred and eighty questionnaires were distributed to cancer patients and companions and 293 were returned. The type of information they obtained online, its usefulness, and its impact on the patient–physician relationship as well as other sources of searching were demanded. Student t-tests, chi-square tests, and multivariate regression logistic analysis were carried out.ResultsInternet use was low (27% patients, 58% relatives). Cancer-specific information was the principal research (41% and 70%). For 61% patients, the information had been useful. Information provided by clinicians was the primary reason to not use Internet (37% and 67%). Twenty-two percent patients discussed it with clinicians. Among other sources, health professional (62% and 51%) and printed materials (18% and 25%) were the most demanded.ConclusionsCancer patients and carers reported a low use of the Internet for searching medical information, although it helps patients to better cope with cancer. To discuss this information may strengthen the patient–physician relationship. Physicians should ensure that their patients receive reliable online information.     

Oncology Information System: A Qualitative Study of Users’ Requirements

Background: Cancer care is a complex care process and is associated with generating a variety of data during the care process. Therefore, it seems that designing and using information systems is necessary to enhance the accessibility, organization and management of cancer-related data. The aim of this study was to identify users’ requirements of an oncology information system (OIS). Methods: This was a qualitative study conducted in 2018. In depth semi-structured interviews were performed with clinicians and non-clinicians in five teaching hospitals to identify users’ requirements. Data were analyzed by using framework analysis. Results: The four themes emerged from data analysis included: a) methods of recording cancer data in the hospitals, b) required cancer data in different departments, c) comprehensive cancer care documentation, and d) required functions of an oncology information system. Conclusion: According to the results, currently, electronic documentation is less frequently used for cancer patients. Therefore, an extensive effort is needed to identify users’ requirements before designing and implementing an oncology information system. As multidisciplinary teams are involved in cancer care, all potential users and their requirements should be taken into account. Such a system can help to collect and use cancer data effectively.     

Providing internet lessons to oncology patients and family members: a shared project

The paper describes the steps in a pilot study taken to develop and evaluate an Internet intervention for cancer patients and family members. The intervention was a shared project of two hospital departments; a volunteer oncology support service, Hope & Cope, and the Health Services Library. Forty subjects were surveyed on their computer use and interest, and of these, half used the Internet to access health and medical information. Of the 40 subjects, 28 participated in an innovative, one-to-one teaching session with a medical librarian where they learned to access Internet sites to find information specific to their needs and subsequently be more confident in their perceived ability to evaluate the information received. Follow up interviews found that the sessions were well received and at two months follow-up the participants attributed their positive well being in large part to the intervention. Internet use by oncology patients and family members in conjunction with skilled help has the potential to contribute in a timely fashion to the well being of those with cancer.     

Cancer Patients and the Internet: a Survey Among German Cancer Patients

An increasing number of patients and relatives use the Internet to get additional or initial information about their disease. The aim of the study was to reevaluate the Internet usage among German cancer patients. Using a standardized questionnaire, we did an anonymous survey on patients attending a series of lectures on complementary medicine in 2014. We received 255 questionnaires. Nearly 80 % of the participants stated that they used the Internet to read up information about health or medicine issues. There was no significant difference regarding gender, age, or status (patient, current treatment/former treatment; relatives). Most users use the Internet in order to get additional information after a consultation with a physician (82.2 %). Important qualities from the view of the patient are a trustable source (65.3 %), information from experts (59.6 %), and actual information (52.8 %). There is an increasing number of patients in Germany looking for information in the Internet mostly in the intention of getting additional information. Yet, as the quality of information is heterogeneous, false information may lead to distrust in the doctor or wrong decision-making. Accordingly, organizations working on improving quality of cancer care should engage in conveying comprehensive and actual information adapted to the needs of patients. Physicians should know trustful websites for referral of patients.     

Virtual connections: Internet health care

Shortly before his death in 1995, Kenneth B. Schwartz, a cancer patient at Massachusetts General Hospital (MGH), founded The Kenneth B. Schwartz Center at MGH. The Schwartz Center is a nonprofit organization dedicated to supporting and advancing compassionate health care delivery that provides hope to the patient, support to caregivers, and encourages the healing process. The Center sponsors the Schwartz Center Rounds, a monthly multidisciplinary forum where caregivers reflect on important psychosocial issues faced by patients, their families, and their caregivers, and gain insight and support from fellow staff members. The 20th century success of the Internet is now translating into changes in 21st century medical practice. The changes brought about by the Internet have at once facilitated and complicated the practice of medicine. Physicians and patients are challenged to take advantage of the increased opportunities afforded by Internet access while being mindful of its drawbacks and the limitations to virtual communication. The case of Karen Parles, one of the authors, is presented. Karen developed locally advanced lung cancer and used the Internet to research her diagnosis. She found the information on lung cancer limited and confusing, and, in response, developed a website devoted to empowering lung cancer patients in their search for information and support (http://www.lungcanceronline.org). Here we discuss issues surrounding patients' use of the Internet for health information and communication with health care providers. The value of information-seeking as a coping mechanism is debated, and concerns are raised regarding confidentiality of electronic communications and the logistics of physicians adopting e-mail as a mechanism for communicating with patients.     

Primary Care Physician Perspectives on Caring for Adult Survivors of Hematologic Malignancies and Hematopoietic Cell Transplantation

BackgroundPrimary care physicians (PCPs) may face barriers to caring for hematologic malignancy and hematopoietic cell transplantation (HCT) survivors.MethodsA Web-based survey consisting of 40 questions and 2 case scenarios was administered to 302 PCPs at 2 large integrated health care systems. The questionnaire assessed perceived barriers to delivery of care to hematologic malignancy/HCT survivors, resources available to care for cancer survivors, practices for care coordination with hematologist-oncologists, and preferred models of care delivery.ResultsOverall response rate was 30% (n = 86). PCPs reported several barriers such as lack of resources to facilitate care (69%), lack of awareness of screening/prevention guidelines (55%) and psychosocial needs of survivors (65%), inadequate time (65%), and patient preference to follow up with their oncologists (66%). They expressed confidence in caring for general medical issues (84%) and general cancer screening (73%), but they preferred that oncologists manage cancer-related medical issues (42%) as well as screen for cancer recurrence (52%) and secondary cancers (55%). In multivariable analysis, PCPs who had previously cared for a large number of hematologic malignancy/HCT survivors and those with a longer time since graduation from medical school had greater confidence in managing cancer-related medical issues.ConclusionPCPs report several barriers in providing care to hematologic malignancy/HCT survivors. Clinical experience with this patient population is associated with greater confidence in providing survivorship care. Several barriers identified by PCPs in providing survivorship care to hematologic malignancy/HCT survivors are potentially addressable by education and clinical decision support tools and guidelines, thereby enhancing the patients’ clinical experience and care coordination with hematologist-oncologists.     

Doctor–Patient Communication About Cancer-Related Internet Information

This article explores the effect of doctor–patient communication about cancer-related Internet information on self-reported outcomes. Two hundred and thirty cancer patients and caregivers completed an online survey regarding their experiences searching for and discussing with their doctors cancer-related Internet information. Participants who assertively introduced the Internet information in a consultation were more likely to have their doctor agree with the information. When doctors showed interest and involvement and took the information seriously, participants were less likely to report a desire to change the doctor's response. Taking the information seriously was also associated with greater satisfaction. This preliminary evidence that the doctor's response is associated with patient outcomes indicates the potential for improving patient-centered communication. In an effort to maximize patient-centered communication, doctors should be encouraged to take their patients and the information they present seriously, as well as show their patients that they are interested and involved.     

Developing a useful,user‐friendly website for cancer patient follow‐up: users' perspectives on ease of access and usefulness

BARTLETT Y.K., SELBY D.L., NEWSHAM A., KEDING A., FORMAN D., BROWN J., VELIKOVA G. & WRIGHT P. (2012) European Journal of Cancer Care Developing a useful, user‐friendly website for cancer patient follow‐up: users' perspectives on ease of access and usefulness UK cancer survival has improved, leading to an increase in review patients and pressure on clinics. Use of the Internet for information exchange between patients and healthcare staff may provide a useful adjunct or alternative to traditional follow‐up. This study aimed to develop and evaluate a website for use in follow‐up cancer care in terms of usability, feasibility and acceptability. A website was developed and underwent iterative amendment following patient usability testing in focus groups. Patients on follow‐up completed a Computer and Internet Usage Questionnaire. Internet users consented to a randomised crossover study to complete paper and online questionnaires, browse the website and participate in a website evaluation interview. Patient website use was tracked. Usability: Website changes were made following patient testing (n= 21). Patients would have liked a ‘personalized’ website with links to their clinical team, out with the scope of this study. Feasibility: The majority of participants (65%) had Internet access. Age remained a differentiating factor. Acceptability: Final evaluation (n= 103) was positive although many would like to maintain face‐to‐face hospital contact. User involvement in website design can ensure patient needs are met. A website model for follow‐up will suit some patients but others will prefer clinical contact.     

Implementation of a web-based prostate cancer decision site

Carcinoma of the prostate is the most common form of cancer in males in the United States, second only to skin cancer. Recently, there has been increased public awareness of cancer-related diseases and specifically prostate cancer. As a result, more individuals are routinely screened and diagnosed with prostate cancer. When a man first discovers he has prostate cancer, he is faced with a multitude of questions. Health care providers realize in counseling patients that there is no single treatment choice best suited for every patient. Because of multiple treatment choices for prostate cancer and complex counseling needs due to a varied side effect profiles of the different options, the Internet may be an ideal tool to extend the health care provider. Furthermore, because men may be reluctant to discuss issues with the health care provider directly, the anonymity of the Internet may be of particular value in the disease. The Internet has created a massive body of information with an estimated 320 million Web sites. The provider can use the Internet as a patient educational tool thus affording the patient time to absorb sometimes complicated information. The Internet can help patients focus on specific aspects of their disease making the patient-provider encounter more productive and allow the patient to take an active role in the treatment decision-making process. More knowledgeable patients can make better decisions about treatment options and have more realistic expectations of their outcomes. We have developed an Internet-based decision for prostate cancer available to both patients and physicians.     

Potential Spillover Educational Effects of Cancer-Related Direct-to-Consumer Advertising on Cancer Patients’ Increased Information Seeking Behaviors: Results from a Cohort Study

Spillover effects of exposure to direct-to-consumer advertising (DTCA) of cancer treatments on patients’ general inquiry about their treatments and managing their illness are not well understood. This study examines the effects of cancer patients’ exposure to cancer-related DTCA on subsequent health information seeking behaviors from clinician and non-clinician sources (lay media and interpersonal contacts). Using a longitudinal survey design over 3 years, data was collected from cancer survivors diagnosed with colorectal, breast, or prostate cancer who were randomly sampled from the Pennsylvania Cancer Registry. Study outcome measures include patients’ information engagement with their clinicians and information seeking from non-medical sources about cancer treatment and quality of life issues, measured in the second survey. The predictor variable is the frequency of exposure to cancer-related DTCA since diagnosis, measured at the round 1 survey. The analyses utilized lagged-weighted multivariate regressions and adjusted for round 1 levels of patient–clinician engagement, information seeking from nonmedical sources, and confounders. Exposure to cancer-related DTCA is associated with increased levels of subsequent patient–clinician information engagement (B?=?.023, 95 % CI?=?.005–.040, p?=?.012), controlling for confounders. In comparison, exposure to DTCA is marginally significant in predicting health information seeking from non-clinician sources (B?=?.009, 95 % CI?=??.001–.018, p?=?.067). Cancer-related DTCA has potentially beneficial spillover effects on health information seeking behaviors among cancer patients. Exposure to DTCA predicts (a little) more patient engagement with their physicians.     

Web resources for patients with prostate cancer: a starting point

The information available on the World Wide Web is vast. Patients are becoming increasingly interested in resources available to them on the Internet for health and medical information. As the percentage of Americans with Internet access grows, health care providers are being asked by their patients to facilitate the search for quality information. This article provides the groundwork for urologists counseling their patients about Web-based information on prostate cancer. Internet sites that provide clear, in-depth information about symptoms and characteristics of prostate cancer, common tests performed, prevention, and treatment options are reviewed. Ten high-quality, patient-friendly Web sites that may be used as a resource for patients and physicians are presented.     

Assessing the role of evidence in patients' evaluation of complementary therapies: a quality study

BACKGROUND: Making the decision to use complementary and alternative medicine (CAM) for cancer treatment is difficult in light of the limited available evidence for these treatments. It is unclear how patients use evidence to make these decisions. OBJECTIVES: (1) Describe the type of information about CAM that cancer patients use in their decision making; (2) understand why certain types of information about CAM are accepted as evidence by cancer patients; and (3) explore the role of scientific evidence in treatment decision making. METHODS: A qualitative study design using in-depth semistructured interviews with cancer patients attending 4 conventional and integrative health care institutions in Alberta and British Columbia, Canada, was used. RESULTS: Twenty-seven patients were interviewed. Patients sought CAM information from a range of sources, including the Internet, health care providers, friends, relatives, and newspapers. Many expressed frustration about the overwhelming amount of available information and found it difficult to identify reliable information. Information was described as reliable if it supported them in arriving at a decision about CAM. Types of information participants identified included anecdotes, expert opinion, gut feeling, popular literature, scientific evidence, testimonials, advertising and trial and error. Profound differences were found between new CAM users, experienced CAM users, and users with late-stage cancer in type of information sought, the role of scientific evidence in decision making, and overall information needs. CONCLUSION: Although this was a relatively small qualitative study, the results suggest that (1) many patients do not value scientific evidence as highly as conventional providers and (2) it is important for clinicians and other information providers to be aware of the different types of information that patients seek out and access when making choices and decisions regarding CAM treatments and why they seek out these sources.     

Perceptions of cancer-related information among cancer survivors: a report from the American Cancer Society's Studies of Cancer Survivors

BACKGROUND.: Sources of cancer-related information are rapidly increasing, but little is known about whether the health information available to cancer survivors meets their needs. METHODS.: The authors surveyed 778 Massachusetts cancer survivors 3, 6, or 11 years after their diagnosis for 6 common cancers. They analyzed their views about 5 types of cancer-related information, the quality of that information, barriers to getting it, their experiences with physicians providing cancer care, and the quality of their cancer care. RESULTS.: Among 462 (61%) respondents who reported needing cancer information, many gave unfavorable ratings (fair or poor) of the quality of cancer information regarding cancer support groups (38%), long-term side effects (36%), experiences of other cancer patients (26%), and cancer physicians (26%). About 20% of respondents reported sometimes experiencing barriers to obtaining cancer information, although fewer than 10% usually or always experienced barriers. For both men and women, worse physical and mental functioning was associated with greater need for information, worse ratings of information quality, and more barriers to obtaining information (all P<.01). Cancer survivors who were black or had lower incomes reported more problems obtaining needed information, and younger women had greater information needs than older women (all P <.01). CONCLUSIONS.: Opportunities exist to improve the quality, content and delivery of cancer-related information to survivors, especially for those who are racial/ethnic minorities, have low incomes, or are in worse physical or mental health. Providing information more effectively to cancer survivors may improve their care and health outcomes. Cancer 2008. (c) 2008 American Cancer Society.     

Randomized, controlled trial of written emotional expression and benefit finding in breast cancer patients.

PURPOSE: Expressing emotions and finding benefits regarding stressful experiences have been associated in correlational research with positive adjustment. A randomized trial was performed to compare effects of experimentally induced written emotional disclosure and benefit finding with a control condition on physical and psychological adjustment to breast cancer and to test whether outcomes varied as a function of participants' cancer-related avoidance. PATIENTS AND METHODS: Early-stage breast cancer patients completing medical treatment were assigned randomly to write over four sessions about (1) their deepest thoughts and feelings regarding breast cancer (EMO group; n = 21), (2) positive thoughts and feelings regarding their experience with breast cancer (POS group; n = 21), or (3) facts of their breast cancer experience (CTL group; n = 18). Psychological (eg, distress) and physical (perceived somatic symptoms and medical appointments for cancer-related morbidities) outcomes were assessed at 1- and 3-month follow-ups. RESULTS: A significant condition x cancer-related avoidance interaction emerged on psychological outcomes; EMO writing was relatively effective for women low in avoidance, and induced POS writing was more useful for women high in avoidance. Significant effects of experimental condition emerged on self-reported somatic symptoms (P =.0183) and medical appointments for cancer-related morbidities (P =.0069). Compared with CTL participants at 3 months, the EMO group reported significantly decreased physical symptoms, and EMO and POS participants had significantly fewer medical appointments for cancer-related morbidities. CONCLUSION: Experimentally induced emotional expression and benefit finding regarding early-stage breast cancer reduced medical visits for cancer-related morbidities. Effects on psychological outcomes varied as a function of cancer-related avoidance.     

The Psychosocial Oncology Learning Assessment: A Province-Wide Survey of Cancer Care Providers’ Learning Needs

A psychosocial oncology learning needs assessment was developed and offered online to cancer care providers in a variety of settings across all health regions in British Columbia. The purpose was to better understand the psychosocial learning needs of cancer care providers and to use this knowledge to shape continuing education priorities. Respondents' preferred learning formats, access to technology and barriers to accessing psychosocial learning opportunities were also assessed. Cancer care providers including radiation therapists, social workers, dieticians, pharmacists, physicians and nurses in both community and agency settings were surveyed. Two hundred and sixty-seven people completed the survey. Key learning needs identified included cultural aspects of care, symptom management, treating the anxious patient, self-care for the professional, care of elderly patients, basic cancer-related medical issues surrounding care and ethics. Community respondents indicated more needs than agency respondents. On-site training was the most preferred learning format, and time constraints were the biggest barrier to accessing learning opportunities. Participants had access to technology. Next steps include conducting key informant and focus group interviews to determine if interest in a learning need is the same as a relevant knowledge and practice gap. This research suggests that cancer care providers are interested in learning more about the psychosocial issues related to cancer care.     

Not asking cancer patients about their preferences does make a difference. A cross‐sectional study examining cancer patients’ preferred and perceived role in decision‐making regarding their last important cancer treatment

We examined whether not having been asked by their clinicians about how involved cancer patients would like to be in their treatment decisions is related to discordance between patients’ preferred and perceived involvement in treatment decision‐making. This was a cross‐sectional survey of adult cancer patients recruited from five medical and radiation oncology outpatient clinics in Australia. Discordance of patients’ preferred and perceived decision‐making roles was assessed via an adapted version of the Control Preferences Scale. Logistic regression modelling was conducted to assess the relationship between role discordance and whether patients were not asked but wanted to be asked about how involved they would like to be in deciding on their treatment. Of 423 study participants, almost a third (n = 128, 31%) reported discordance between their preferred and perceived involvement in their treatment decisions. Of those reporting discordance, 72% (n = 92) were less involved than they would have liked to have been. Not being asked about their preferences for involvement in treatment decisions, despite wanting this, was associated with discordance between patients’ preferred and perceived involvement in treatment decision‐making (p < 0.04). To achieve patient‐centred care, it is vital that clinicians seek patients’ views about how involved they would like to be in deciding on their cancer treatment.     

Cancer care with informational technology

New innovations in clinical information technology have brought about changes in cancer care. The high-speed Internet provides an enormous real-time information exchange among physicians anywhere on earth. Computer-aided clinical decision support systems free up cancer experts in all stages of the cancer care continuum, including prevention, early detection, treatment and end-of-life care. Large registrations of cancer patients using the Internet enable us to construct large nationwide phenotypic and genotypic databases that allow clinicians to optimize individualized cancer treatment. Electronical medical records with an order-entry-system showing realtime clinical information provide safe, efficient and effective care. While new internet/intranet technologies reduce the inefficiencies of cancer care, the unintended consequences of the new informational technologies result in delivery of enormous unregulated clinical information, creating a digital divide between those using and not using the Internet, causing a decrease in communication.     

The Effect of Access to Information on Beliefs Surrounding Breast Cancer in South Africa

Breast cancer is the most common cancer affecting women in South Africa. There is little knowledge of beliefs to help identify key areas to improve support and education in this demographically and culturally diverse population. Women with a variety of demographic and socioeconomic characteristics accessing care for breast cancer were asked their agreement to statements of knowledge and beliefs about breast cancer. Of the 259 participants, positive statements of medical cure (87.9%) and family support (90.5%) were most commonly believed. Beliefs in faith-based cure and alternative treatments were also present (79.5 and 24.9%, respectively). Negative beliefs were initially more likely in black patients (RR: 11.57, 95%CI: 1.37–97.69) as was belief of cancer as a punishment (RR: 6.85, 95%CI: 1.41–33.21). However, in multivariate analysis adjusting for age, education and access to information (by newspaper, Internet and confidence in reading and writing), there was no difference between racial groups or hospital attended. Reading a newspaper or accessing the Internet was the most protective against belief that cancer was a punishment or curse (Internet use: aRR: 0.12, 95%CI: 0.02–0.99), belief in alternative methods of cure (newspaper use: aRR: 0.51, 95%CI: 0.27–0.96) and the negative beliefs of death and disfigurement (Internet use: aRR: 0.00, 95%CI: 0.00–0.00). Positive expressions of cure and beating cancer were found equally in all women. Attitudes and beliefs about cancer showed little independent demographic or socioeconomic variance. Negative beliefs were mitigated by access to information and confidence in literacy.