Design and implementation of an Internet-Based cancer risk assessment tool: Use over 10 years.

BACKGROUND: Prevention and early intervention can improve survival and quality of life across all cancers. Patient understanding of risk factors and associated actionable lifestyle changes and screening programs is not well understood by clinicians METHODS: An Internet-based tool, Reduce My Risk, was created in 2009 and made available on oncolink.org. Users voluntarily completed a survey regarding demographics and cancer risk factors, and received information about their cancer risk RESULTS: Twenty eight thousand and one surveys were completed from 2009 to 2019. Median age was 26 years (18-101); 60% were females, 87% lived in North America, and 37% had at least a bachelor's degree. Users reported on behavioral/ modifiable risk factors: 13% were current smokers, 52% were current consumers of alcohol, and 8% of those had ≥14 drinks/week. Body mass index (BMI) was ≥30 in 19%; 74% of all surveys reported dietary risks and 36% reported infrequent exercise. Excess UV exposure was reported by 19%. Among women, 36% reported performing breast self-examinations monthly, and 50% reported receiving clinician breast examinations at least once every 3 years. Sixty seven percent of men 55-75 years reported screening prostate specific antigen testing, with 50% receiving annual digital rectal examinations. Nonmodifiable risk factors included family cancer history (64%), genetic syndrome (3%), and cancer-predisposing health conditions (26%) CONCLUSIONS: Ninety-seven percent of users reported modifiable risk factors, and 60% reported ≥4 of these risk factors. Understanding detailed characteristics of a large number of respondents has the potential to improve educational interventions to reduce cancer risk through behavioral modification and cancer screening across the general public.

Psychosocial impact of the COVID-19 pandemic on cancer patients, survivors and caregivers.

Objective: This study aimed to increase understanding of the effects of the pandemic on cancer patients, survivors and caregivers.Methods: An Internet-based survey was accessed over 2 months by individuals diagnosed with cancer or caregivers (N = 281), with descriptive statistics and chi square analysis used to compare subsets.Results: Most participants reported social isolation (76%) and mental health impact (70%) since the beginning of the COVID19 pandemic; isolation appeared to correlate with mental health impact (p < .00001). Food insecurity and financial hardship correlated significantly with mental health impact; food insecurity also correlated with social isolation.Conclusions: Our findings suggest that mental health during the pandemic in the cancer population may be impacted by social isolation, financial stress, and food insecurity, as well as stress regarding accessing cancer treatments. Awareness by psychosocial healthcare providers of need for resources to support these hardships, as well as framework to identify them, are essential elements of cancer-related care.

Factors Influencing Delivery of Cancer Survivorship Care Plans: A National Patterns of Care Study.

Nearly half of all Americans will develop cancer at least once in their lifetime. Through improved screening and treatments, the number of cancer survivors is reaching all-time highs. However, survivorship care plans (SCPs) are inconsistently used, denying many survivors access to critical information. This study used 46,408 SCPs generated from 2007 to 2016 and applied machine learning to identify predictors of SCP creation, including cancer type, type of physician, and healthcare center where they received care, as well as regional variations in care plan creation. Identifying these disparities in SCP use is a critical first step in efforts toward expanding access to survivorship care planning. Using a convenience sample of survivors, it is possible to model the factors that predict generation of SCPs either by the survivor or by a healthcare provider. This study identifies several important disparities both survivor intrinsic such as cancer type, as well as treatment associated and geographic differences in SCP generation. Identifying these disparities at the national level across cancer types will allow for more targeted recommendations to improve SCP creation and dissemination in underserved groups.

Iterative Development of a Tailored mHealth Intervention for Adolescent and Young Adult Survivors of Childhood Cancer.

Objectives: Methods for developing mobile health (mHealth) interventions are not well described. To guide the development of future mHealth interventions, we describe the application of the agile science framework to iteratively develop a mHealth intervention for adolescent and young adult (AYA) survivors of childhood cancer. Methods: We created the AYA STEPS mobile app (AYA Self-management via Texting, Education, and Plans for Survivorship) by modifying and integrating two existing programs: an online survivorship care plan (SCP) generator and a text messaging self-management intervention for AYA off treatment. The iterative development process involved three stages of agile science: 1) Formative work, 2) Obtaining feedback about the first AYA STEPS prototype, and 3) Pilot testing and finalization of a prototype. We determined preferences of AYA stakeholders as well as discovered and addressed technology problems prior to beginning a subsequent randomized controlled trial. Results: AYA survivors reported that the app and the embedded tailored messages related to their health and SCP, were easy to use and generally satisfying and beneficial. Usage data supported that AYA were engaged in the app. Technology glitches were discovered in the pilot and addressed. Conclusions: The iterative development of AYA STEPS was essential for creating a consistent and acceptable end user experience. This study serves as one example of how behavioral scientists may apply agile science to their own mHealth research.

Patient-reported outcomes in head and neck cancer: prospective multi-institutional patient-reported toxicity.

PURPOSE: Head and neck cancer is occurring in an increasingly younger patient population, with treatment toxicity that can cause significant morbidity. Using a patient guided, Internet-based survivorship care plan program, we obtained and looked at patterns of patient-reported outcomes data from survivors seeking information after treatment for head and neck cancer. METHODS: The Internet-based OncoLife and LIVESTRONG Care Plan programs were employed, which design unique survivorship care plans based on patient-reported data. Care plans created for survivors of head and neck cancer were used in this evaluation. Demographics, treatment modality, and toxicity were included in this evaluation. Toxicity was further analyzed, grouped into system-based subsets. RESULTS: A total of 602 care plans were created from self-identified head and neck cancer survivors, from which patient-reported outcome data were attained. A majority of patients were Caucasian (96.2%) with median age at diagnosis of 55 years, living in suburban locations (39.9%), with ~50% receiving care within 20 miles of their residence. There was an equal distribution of education levels from high school only to graduate school. The majority of patients received care through cancer centers (96.7%), with a split between academic and non-academic centers. Ninety-three percent of patients had radiation therapy as part of their treatment modality, with 70.3% having chemotherapy and 60.1% having surgery. The most common system toxicities affected the oropharynx, followed by epithelium (skin/hair/nail), and then general global health. Specifically, the most common side effects were difficulty swallowing (61.5%) and changes in skin color/texture (49.7%). One third of patients experienced hearing/tinnitus/vertigo, xerostomia, loss of tissue flexibility, or fatigue. CONCLUSION: The current work demonstrates the ability to obtain patient-reported outcomes of head and neck cancer survivors through an Internet-based survivorship care plan program. For this group dysphagia and dermatitis were the most commonly reported toxicities, as was expected; however, global effects of therapy, such as fatigue, were also significant and should be addressed in future survivorship planning.

Identifying barriers to cancer survivors sharing their survivorship care plans with their healthcare provider.

PURPOSE: To understand what factors influence whether a cancer survivor will share their survivorship care plan (SCP) with their healthcare provider (HCP). METHODS: We used data from 3231 cancer survivors who utilized the OncoLink SCP resource between 2009 and 2016. Random forest and stepwise regression were used to identify predictors of SCP satisfaction and barriers to survivors sharing their care plans with their HCPs. RESULTS: Eighty-seven percent of users rated their satisfaction with their SCP as good or better; however, only 70% of survivors planned to share their SCP with their HCP. The most commonly reported reason for not sharing was a feeling that their HCP would not care. Self-reported satisfaction with their SCP was strongest predictor of whether a survivor would share their SCP. Gender, cancer status, number of chemotherapies received, and who was managing their healthcare were all associated with self-reported survivor satisfaction with their SCP. CONCLUSIONS: Survivor satisfaction with SCPs was high, but there was a disconnect in the number of satisfied survivors and the number of survivors planning to share their SCP with their HCP. To bridge this gap, additional prompts that HCPs are expecting this information should be added to the care plans. IMPLICATIONS FOR CANCER SURVIVORS: One of the primary functions of survivorship care plans is to improve communication between survivor and healthcare provider. While survivors are overwhelmingly satisfied with their SCP, additional steps are necessary to get survivors to share their SCP with their HCP.

Survivorship care planning in skin cancer: An unbiased statistical approach to identifying patterns of care-plan use.

BACKGROUND: Nearly 1 in 5 Americans will develop skin cancer, and as a result, survivors of skin cancer compose one of the largest groups of cancer survivors. Survivorship care plans (SCPs) are an important tool for improving patient outcomes and provide critical information to both survivors and health care professionals. Recent efforts have been made to expand SCP utilization; however, which patients currently receive SCPs is poorly understood. METHODS: This study used 596 individuals with a diagnosis of melanoma (n = 391) or nonmelanoma skin cancer (n = 205) who had used an Internet-based SCP tool from May 2010 to December 2016 to model the patient and provider characteristics that determine SCP utilization. RESULTS: Survivors were predominantly white (95.3%) and female (56.5%). Survivors who received a treatment summary were more likely to also receive an SCP. University and nonuniversity cancer centers used SCPs at a higher rate than other care settings. Survivors whose care was managed by a team rather than just an individual physician were also more likely to receive an SCP. Survivors older than 70 years at diagnosis were almost twice as likely to receive a plan as survivors who were diagnosed at a younger age. CONCLUSIONS: With a convenience sample of skin cancer survivors, it is possible to model factors that predict the receipt of SCPs. Important variables include the diagnosis age, treatment setting, physician type, and treatment-summary utilization. A closer examination of these variables identified several disparities in care-plan use and, therefore, opportunities to improve the distribution of SCPs. Further validation in additional cohorts of survivors is necessary to confirm these conclusions. Cancer 2018;124:183-91. © 2017 American Cancer Society.

Patient-Reported Survivorship Care Practices and Late Effects After Treatment of Hodgkin and Non-Hodgkin Lymphoma.

PURPOSE: Multimodal treatment of Hodgkin lymphoma (HL) and non-Hodgkin lymphoma (NHL) yields excellent outcomes; however, survivors are at risk of developing myriad late and long-term effects. METHODS: From a convenience sample of 964 survivors of HL (37%) and NHL (63%) using a publicly available Internet-based survivorship care plan (SCP) tool between 2011 and 2016, we examined patient-reported cancer care, toxicities, and survivorship care data. RESULTS: Of all survivors, 67% were female and 84% were white and 88% were free of cancer. Median age of diagnosis was 28 years for survivors of HL and 49 years for NHL. Many survivors reported treatment with chemotherapy (92%), surgery (52%), and/or radiation (41%), with most radiation delivered to chest/mantle fields (81%). Survivors reported a diversity of radiation- and chemotherapy-related sequelae, including thyroid dysfunction, speaking and/or swallowing changes, pulmonary fibrosis/pneumonitis, heart disease, chronic fatigue, neurocognitive decline, neuropathy, sexual changes, and secondary breast cancers. Few reported receipt of previous survivorship information. Most reported management/comanagement by an oncology specialist after active treatment; however, a shift to management by primary care provider alone was observed as a trend over time in follow-up. Sixty-six percent of users who responded to a follow-up survey reported that they intend to share the SCP with their health care team. CONCLUSION: Survivors of lymphoma, many of whom are free of disease, report a substantial burden of late and long-term adverse effects, suboptimal delivery of survivorship information, and transitions of care in follow-up in which fragmented systems and/or poor communication may contribute to unmet survivor needs. Multiple opportunities thus exist for which SCPs may be used to improve awareness regarding survivorship and associated adverse effects in addition to communicating follow-up care plans between survivors and treatment teams.

Survivorship after treatment of pancreatic cancer: insights via an Internet-based survivorship care plan tool.

Pancreatic cancer survivors face a unique set of challenges in survivorship, yet structured survivorship care planning is lacking in practice. Survivorship care plans (SCPs) are an essential part of quality cancer care and can facilitate the transition following active treatment; the use of SCPs in pancreatic cancer survivors, however, has not been explored. With a convenience sample of 117 pancreatic cancer survivors and proxies who used an Internet-based SCP tool, we examined treatment details, patient-reported outcomes, and survivorship practices. Thirty-one percent of survivors were 2 years or greater from diagnosis with a median current age of 62 years. Most patients had received multimodality therapy (67%): 68%, 86%, and 43% reported surgical intervention, intravenous chemotherapy, and radiation therapy for their pancreatic cancer, respectively. Survivors commonly reported fatigue, cognitive change, neuropathy, pancreatic insufficiency, and chronic radiation dermatitis related to treatment. Most survivors are managed (47%) or co-managed (35%) by an oncology specialist; however, this percentage decreases over time with consequent increase in management by primary care providers alone. Only 5% had previously been offered an SCP. Of the 24 users who responded to a follow-up satisfaction survey, 83% indicated they would share the SCP with their healthcare team although half of respondents felt it should include more information. In all, our results demonstrate that there is a population of pancreatic cancer survivors who exist and seek survivorship support although structured survivorship care planning is lacking in practice. SCPs have a potentially valuable role for these survivors via communication of treatment-related effects and coordination across multidisciplinary healthcare teams. Further development and evaluation of SCPs is needed for this underserved survivor population.

Survivorship and the chronic cancer patient: Patterns in treatment-related effects, follow-up care, and use of survivorship care plans.

BACKGROUND: The survivorship needs of patients living with chronic cancer (CC) and their use of survivorship care plans (SCPs) have been overlooked and underappreciated. METHODS: A convenience sample of 39,088 SCPs completed for cancer survivors with an Internet-based SCP tool was examined; it included 5847 CC survivors (15%; CC was defined as chronic leukemia and/or recurrent/metastatic cancer of another nature). Patient-reported treatment effects and follow-up care patterns were compared between CC survivors and survivors treated with curative intent (CI). Responses from a follow-up survey regarding SCP satisfaction and use were reviewed. RESULTS: CC survivors had greater odds of experiencing multiple treatment-related effects than survivors treated with CI; these effects included fatigue, cognitive changes, dyspnea, peripheral neuropathy, lymphedema, and erectile dysfunction. Nearly half of CC survivors were managed by an oncologist alone, and they were less likely than CI patients to be comanaged by a primary care provider and an oncologist. Fewer SCPs were generated by health care providers (HCPs) for CC survivors versus CI survivors. A smaller proportion of CC users versus CI users rated their experience and satisfaction with the SCP tool as very good or excellent, and CC users were less likely to share the HCP summary with their health care team. CONCLUSIONS: A substantial number of CC survivors, often considered incurable but treatable, seek survivorship support. Tools to facilitate participation, communication, and coordination of care are valuable for these patients, and future iterations of SCPs should be designed to address the particular circumstances of living with CC. Cancer 2017;123:4268-4276. © 2017 American Cancer Society.

Survivorship after lower gastrointestinal cancer: Patient-reported outcomes and planning for care.

BACKGROUND: There is significant need for quality follow-up care to optimize long-term outcomes for the growing population of lower gastrointestinal (GI) cancer survivors. Patient-reported outcomes (PROs) provide valuable information regarding late and long-term effects (LLTEs). METHODS: A convenience sample from 1129 colon, rectal, and anal cancer survivors (n = 792; 218, and 119, respectively) who participated in an Internet-based survivorship care plan (SCP) tool between May 2010 and October 2014 was used to examine patient-reported demographics, treatment, and toxicity data. Responses from a follow-up survey were reviewed. RESULTS: The median age of diagnosis was 51 years, and 81% of survivors were Caucasian. The most commonly reported LLTEs for all survivors were neuropathy, fatigue, cognitive changes, changes in GI function, urogenital and sexual dysfunction, and dermatologic effects. The prevalence of these effects varied with time since diagnosis, treatment modality, and treatment center. Individuals who had survived anal cancer reported a high prevalence of sexual dysfunction and radiation-induced dermatologic effects. Over 87% of users reported satisfaction levels of good to excellent using the SCP tool, and 69% reported that they intend to share the SCP with their health care team. CONCLUSIONS: For lower GI cancer survivors, it is feasible to obtain PROs from an Internet-based survivorship tool. Survivors report a wide spectrum of LLTEs, and these can be used to inform counseling at the time of diagnosis and to help anticipate and respond to disease-related and treatment-related sequelae during follow-up. The authors are among the first to report on PROs in anal cancer survivors. Further investigation on the impact of SCPs on health care communication and use is needed. Cancer 2017;123:1860-1868. © 2017 American Cancer Society.

Use of Survivorship Care Plans and Analysis of Patient-Reported Outcomes in Multinational Patients With Lung Cancer.

PURPOSE: Lung cancer is the leading cause of cancer death and is a significant source of morbidity. Patient-reported outcomes (PROs) have been shown to be prognostic for survival. We have analyzed emerging patterns of longitudinal PROs collected in the development of survivorship care plans (SCPs). METHODS: OncoLife and the LIVESTRONG Care Plans are Internet-based programs designed to generate unique SCPs. We selected SCPs from patients identifying as survivors of primary lung cancer. Patient-reported demographics and treatment and toxicity data were examined. Effects were categorized by the physiologic system that they affected. RESULTS: Six hundred eighty-nine plans were created for users self-identifying as survivors of primary lung cancer. Average time from diagnosis to reporting was 1.68 years (range, 0 to 24 years). Most were white (85.9%), well educated (61.1% "some college" or higher), and lived in the United States (90.7%). Patients underwent chemotherapy (75.8%), radiotherapy (54.7%), and surgery (54.4%). Neurocognitive symptoms (eg, fatigue, cognitive changes) were the most common (48.8%), especially among those receiving chemotherapy, followed by musculoskeletal/dermatologic symptoms (14.1%) and thoracic symptoms (13.5%). Only 11.2% were initially offered an SCP. Of those offered SCPs, 54.5% were offered by their health care provider, and most often were at a non-university-based cancer center (66.2%). CONCLUSION: For patients with lung cancer worldwide, it is feasible to obtain PROs and to create SCPs through an Internet-based program. As patients with lung cancer achieve improved survival, further attention should be paid to PROs. Surprisingly, neurocognitive symptoms seem to be the most common issues and therefore the most important to address. Increased effort should be made to provide SCPs, particularly in urban and university cancer center settings.

Feasibility Study of an Electronic Interface Between Internet-Based Survivorship Care Plans and Electronic Medical Records.

PURPOSE: Survivorship care plans (SCPs) are recommended for all cancer survivors. Myriad barriers to implementation exist. This study was performed to evaluate the feasibility of interface development between an SCP and an electronic medical record (EMR). METHODS: An information technology application was developed to extract data from the EMR in use at our center (Epic). Data were transferred to autopopulate an Internet-based tool for creation of SCPs (LIVESTRONG Care Plan) that had been previously used for the creation of more than 35,000 plans. RESULTS: Data (demographic characteristics, surgeries, chemotherapy drugs, radiation site) were extracted from the EMR and transferred to the care plan platform, without transfer of protected health information. Care plans were created and transferred back to the EMR. During clinical testing, SCPs were created by nurse practitioners during scheduled clinic visits for 146 sequential, eligible patients (67% breast cancer, 33% colorectal cancer). All patients received completed care for a single cancer diagnosis at our institution. All data points that were automatically populated were reviewed by practitioners, and missing/blank data fields were populated manually when necessary. Data entered into generated care plans were accurate in 97% of audited cases, and the process of care plan generation could be completed in < 1 minute. CONCLUSION: This is a feasible solution for the autopopulation of SCPs from the EMR. It represents a future methodology through which widespread implementation of SCPs may be undertaken. Future directions include further clinical testing, assessment of provider-perceived usefulness, and integration into routine clinical care.

Late effects in survivors of central nervous system tumors: reports by patients and proxies.

PURPOSE: With the 5-year survival of patients with brain tumors increasing as treatment modalities are optimized, there are a large number of brain cancer survivors who experience long-term sequelae of their treatment. Patient-reported outcomes represent an important and often unrecorded aspect of survivorship. METHODS: An Internet-based survivorship care plan tool which allowed patients or their proxies to answer a series of questions about the patient's illness course was used to collect patient-reported toxicity data for 254 individuals who had undergone treatment for brain cancer. Demographic, treatment, and side effect profiles data were reviewed. RESULTS: Median age of diagnosis was 42 years, and 88% (n = 223) of the patients were Caucasian. Only 11.1% (n = 29) had previously been offered a survivorship care plan. Of the total group of brain tumor survivors, 25.4% of responders described themselves as living with metastatic disease, while 14.5% of responders were experiencing recurrence status post treatment. Late effects most commonly reported for all brain malignancy survivors using this tool were cognitive changes, fatigue, skin changes, hearing loss, weakness, and numbness. The incidence of late effects varied with age at time of treatment and length of time since treatment. CONCLUSIONS: Individuals undergoing treatment for brain cancers experience a diverse array of long-term sequelae, and the majority of these patients do not have access to or familiarity with a survivorship care plan. IMPLICATIONS FOR CANCER SURVIVORS: Patient-focused tools to evaluate these side effects and access to survivorship plans are important for comprehensive reporting of late effects as well as implementation of survivorship care plans for long-term management of these effects. Understanding the late effects that patients experience will help providers council patients regarding expectations prior to treatment, as well as management of symptoms in the survivorship phase of care.

Cancer survivors' perspectives on delivery of survivorship care by primary care physicians: an internet-based survey.

BACKGROUND: Helping cancer survivors to transition from active treatment to long-term survivorship requires coordinated efforts by both oncologists and primary care physicians (PCPs). This study aims to evaluate cancer survivors' perspectives on PCP-delivered survivorship care. METHODS: We conducted an Internet-based cross-sectional survey of cancer survivors via www.OncoLink.org . Regression analyses were used to identify factors associated with perception of PCP-delivered survivorship care. RESULTS: The 352 respondents rated overall PCP-delivered survivorship care as 60 out of 100 (SD = 23). The areas of care most strongly endorsed were general care (62 %), psychosocial support (65 %), and holistic care (68 %). Survivors were less likely to perceive their PCPs as knowledgeable about cancer follow-up (43 %), late or long-term effects of cancer therapy (45 %), and diagnosis and treatment of symptoms related to cancer or cancer therapy (42 %). While 72 % of survivors reported satisfaction with their PCP's care overall, only 41 % felt that their PCPs and oncologists communicated well with one another. In a multivariate regression analysis, higher trust in PCP (p < 0.001), non-white race (p = 0.001), living in the United States (p = 0.007), and visiting a PCP two or more times per year (p = 0.009) were significantly associated with higher ratings of PCP-delivered survivorship care. CONCLUSIONS: While cancer survivors in general are satisfied with care delivery by PCPs, they perceived that their PCPs have limited abilities in performing cancer-specific follow-up and late effect monitoring and treatment. Better education of family physicians about survivorship issues and improved communication between PCPs and oncologists are needed to improve PCPs' delivery of survivorship care.

Impact of internet-based cancer survivorship care plans on health care and lifestyle behaviors.

BACKGROUND: Survivorship care plans (SCP) are currently recommended by the Institute of Medicine, and will soon be required for accreditation by the American College of Surgeons Commission on Cancer. To the best of the authors' knowledge, the impact of SCPs on cancer survivors has not been previously reported. METHODS: In 2007, the authors created an Internet tool for the creation of SCPs that provides customized guidelines for survivorship care. Users are sent a voluntary follow-up survey 1 month after initial use. RESULTS: From May 2010 through January 2013, 8690 cancer survivors used the SCP tool. The most common diagnoses were breast (45%), hematologic (12%), and gastrointestinal (11%) cancers; the median age of the survivors was 51 years. Of these, 875 (10%) respondents provided information for future electronic contact and 298 responded to a 1-month follow-up survey. They reported that the information provided was "good" to "excellent" in 93% of cases, and new in 65% of cases. With regard to the emotional impact of the SCP, 62% of responding survivors believed that it provided "just enough" information, 72% felt "more informed," and 94% believed they would recommend it to others. The majority of respondents (63%) thought that the SCP changed their health care participation, and 80% shared/planned to share it with their health care team. Of those survivors who had done so, 80% reported that it improved communication with their health care providers. Greater than one-half of survey users (54%) reported that they had made or planned to make a lifestyle change in response to the SCP, most commonly dietary modification and increased exercise. CONCLUSIONS: Survivorship care plans are useful vehicles with which to promote lifestyle and behavioral changes, and to assist survivors with communication with health care providers. These findings support recommendations from the Institute of Medicine and the American College of Surgeons Commission on Cancer.

Palliative care in the management of lung cancer: analgesic utilization and barriers to optimal pain management.

OBJECTIVE: Little data exist on assessing pain medication utilization among lung cancer patients or on the reasons they fail to receive optimal analgesic treatment. This study evaluates those reasons and investigates perceived causes of pain among individuals with lung cancer. DESIGN: An institutional review board-approved Internet-based questionnaire was posted on http://www.oncolink.org that included 22 queries evaluating analgesic utilization, pain control, and attitudes regarding analgesics. PATIENTS AND PARTICIPANTS: Between November 2005 and July 2008, 90 respondents with lung malignancies participated. Respondents were Caucasian (89 percent), male (54 percent), and had non-small-cell lung cancer (79 percent), small-cell lung cancer (12 percent), or mesothelioma (9 percent). RESULTS: Respondents underwent surgery (48 percent), chemotherapy (58 percent), and radiotherapy (44 percent). Most respondents (92 percent) reported experiencing pain, with 52 percent attributing pain directly to cancer, 38 percent to cancer treatment, and 67 percent unsure of the primary cause. Among respondents experiencing pain, 33 percent did not use analgesics. Analgesic utilization was less in men (p = 0.050) but did not differ by minority status (p = 0.127), education level (p = 0.37), or lung cancer histology (p = 0.134). Analgesic use was higher in subjects receiving radiotherapy (p = 0.002) and chemotherapy (p = 0.013) but not surgery (p = 0.16). Reasons for not taking analgesics included fear of addiction/dependence (76 percent), healthcare providers not recommending medications (71 percent), and inability to pay for analgesics (56 percent). Participants pursued physical therapy (76 percent) and other complementary modalities (24 percent) for pain control. CONCLUSIONS: Many individuals with lung cancer perceive pain from both their disease and their cancer treatment. However, some study respondents did not use analgesics due to concerns of addiction, cost, or their healthcare providers not recommending analgesics. Medicalprofessionals providing medical management for lung cancer patients should make pain management a priority and regularly discuss pain symptoms and pain management with patients.

Cancer patient attitudes toward analgesic usage and pain intervention.

OBJECTIVES: Although pain is commonly experienced by cancer patients, many receive inadequate pain management. Little data exist quantifying analgesic usage among oncology patients. This study evaluates perceived causes of pain and investigates reasons why oncology patients fail to receive optimal pain management. METHODS: An institutional review board-approved questionnaire assessing pain control and analgesic usage was posted on OncoLink. Between November 2005 and July 2008, 1107 patients responded. Respondents were female (73%), white (74%), educated beyond high school (64%), and had surgery (69%), chemotherapy (64%), and radiation (47%). Most had breast (30%), gastrointestinal (12%), gynecologic (11%), and lung (8%) malignancies. RESULTS: Sixty-seven percent of respondents reported pain, with 48% reporting pain directly from their cancer and 47% reporting pain from their cancer treatment. Among patients in pain, 25% did not use analgesics. Analgesic usage was significantly less in men (44% vs. 52%, P=0.023), minorities (42% vs. 53%, P=0.001), and patients with lower education levels (45% vs. 53%, P=0.013). Usage varied by cancer diagnosis and was higher among patients who received chemotherapy (56% vs. 40%, P<0.001) and radiation (53% vs. 47%, P=0.058). Reasons for not taking analgesics included: health care provider not recommending medications (85%), fearing addiction/dependence (80%), and inability to pay (76%). Many patients reporting pain, not taking analgesics, pursued alternative therapies (94%). DISCUSSION: Most cancer patients perceive pain from their disease or treatment, regardless of therapy received. Many, however, did not use analgesics due to concerns of addiction, cost, or lack of health care provider endorsement. Providers should regularly discuss pain symptoms and management with cancer patients.

The utilization of oncology web-based resources in Spanish-speaking Internet users.

OBJECTIVES: There currently are few web-based resources written in Spanish providing oncology-specific information. This study examines utilization of Spanish-language oncology web-based resources and evaluates oncology-related Internet browsing practices of Spanish-speaking patients. METHODS: OncoLink (http://www.oncolink.org) is the oldest and among the largest Internet-based cancer information resources. In September 2005, OncoLink pioneered OncoLink en español (OEE) (http://es.oncolink.org), a Spanish translation of OncoLink. Internet utilization data on these sites for 2006 to 2007 were compared. RESULTS: Visits to OncoLink rose from 4,440,843 in 2006 to 5,125,952 in 2007. OEE had 204,578 unique visitors and 240,442 visits in 2006, and 351,228 visitors and 412,153 visits in 2007. Although there was no time predilection for viewing OncoLink, less relative browsing on OEE was conducted during weekends and early morning hours. Although OncoLink readers searched for information on the most common cancers in the United States, OEE readers most often search for gastric, vaginal, osteosarcoma, leukemia, penile, cervical, and testicular malignancies. Average visit duration on OEE was shorter, and fewer readers surveyed OEE more than 15 minutes (4.5% vs. 14.9%, P < 0.001). CONCLUSIONS: Spanish-speaking users of web-based oncology resources are increasingly using the Internet to supplement their cancer knowledge. Limited available resources written in Spanish contribute to disparities in information access and disease outcomes. Spanish-speaking oncology readers differ from English-speaking readers in day and time of Internet browsing, visit duration, Internet search patterns, and types of cancers searched. By acknowledging these differences, content of web-based oncology resources can be developed to best target the needs of Spanish-speaking viewers.