A study of cancer information for cancer patients on the internet

Background  There have been few studies of the information provided for cancer patients on the internet. Methods  Using the Japanese language, we searched for cancer-related web pages, using the Google search engine, and evaluated the characteristics of the 150 top-ranked search results. We collected information on the operators of the websites, number of links, existence of a search function, and advertisements on the site. According to their contents, the 150 websites were classified into seven categories, of which five (numbers 1, 2, 3, 4, and 6) each accounted for 20% of the websites. The categories were: (1) media-related websites (e.g., newspapers and publishers), and portal sites; (2) patient association websites, patient's diaries, blogs by patients and/or their families (n = 33); (3) websites of medical institutions (e.g., hospitals; n = 27); (4) websites of research institutions (e.g., universities; n = 35); (5) websites of pharmaceutical companies; (6) other websites providing medical information (n = 32); and (7) other websites that did not belong to categories 1–6. Outgoing links were common in websites created by media-related organizations (median, 13) or patients and their families (median, 15), but such links were not common in the other types of websites (median, 0–4). Eight of the 13 cancer based hospitals in Japan, as well as the National Cancer Center were publishing general cancer information on their websites. Of the 13 cancer based hospitals, 12 included a link to the National Cancer Center. The National Cancer Center had the largest amount of information (736 575 words), exceeding the amount provided by the other cancer based hospitals (1 622–155 515 words). Two of the 7 websites of academic associations (included in category 6) had cancer information for patients, but the document sizes were small (3230–44 091 words). Conclusion  The website of the National Cancer Center is the most prominent source of general cancer information for patients, but it still has room for improvement in its usability.     

Relative frequency and survival results of cancer seen at a county hospital

The relative frequency of cancer cases (percentage of total malignancies) admitted to Los Angeles County-University of Southern California (LAC-USC) Medical Center from 1942 to 1974 was studied (basal cell and epidermoid carcinoma of the skin were excluded). Among cancers of the digestive system, the relative frequency of cancer of the stomach has definitely declined from a high of 9.5% before 1946 to a low of 2% in 1972. Carcinoma of the colorectum has shown a downward trend in the last decade. Among cancers of the respiratory system, cancer of the lung continues its steady increase from a relative frequency of 7% before 1946 to a high of 20% in 1974. The percentages of malignant lesions of the female organs (breast, uterine body, ovaries) have stayed relatively constant. Cancers of the central nervous system and malignancy of unknown primary site showed an increasing trend over the last 15 years. The 8 most common cancers according to their relative frequency at Los Angeles County Hospital in 1974 are: colon (10%), rectum (5%), breast (15%), lung (13%), prostate (7%), cervix uteri (6%), stomach (3%), and pancreas (3%). In general, survival results of patients in the California Tumor Registry are comparable with those reported in the national study, and survival rates of patients seen at the Los Angeles County Hospital are lower. But 5 year survival rates have improved by more than 3 percentage points for patients with all stages of cancer of the colon, breast, prostate, and cervix uteri diagnosed at the Los Angeles County Hospital in recent years.     

The quality of internet sites providing information relating to oral cancer

To determine the quality of the information available on the internet in relation to oral cancer.Sites were identified using two search engines (Google and Yahoo), and the search term “oral cancer”. The first 100 consecutive sites in each search were visited and classified. The websites were evaluated for quality of content by using the validated DISCERN rating instrument and the JAMA benchmarks; the existence of the Health on the Net (HON) seal was also registered.The Google search yielded 25,70,000 sites for oral cancer, while Yahoo yielded 6,99,00,000. We reviewed 29 Google websites and 22 Yahoo websites. Based on the JAMA benchmarks, only two sites (6.9%) met the four criteria in the Google search, versus a single site (4.5%) in the Yahoo search. As regards the DISCERN instrument, no site obtained the maximum score. Moreover, in the Google search, 72.5% of the sites had serious deficiencies, versus 68.2% of the Yahoo sites. Lastly, eight of the Google sites (27.6%) and four of the Yahoo sites (18.2%) presented the HON seal.The quality of the healthcare information related to oral cancer on the internet is poor. There is a need to be vigilant about the quality of information found on the internet.     

Caregiver burden among poor caregivers of patients with cancer in an urban African setting

Objectives: The nature and magnitude of the problems facing caregivers remain largely unknown in developing countries of the world. This study addresses these issues in a group of caregivers of patients with cancer in Zaria, Nigeria. Method: One hundred and three patients attending an oncology outpatient clinic at the Ahmadu Bello University Teaching Hospital were enrolled in the study with their caregivers. The caregivers were interviewed using the Socio‐demographic data sheet, General Health Questionnaire‐30 (GHQ‐30) and Zarith Burden Interview (ZBI). A score of 4 or more in GHQ and scores above the median score of the sample in ZBI were considered a clinically significant level of psychological morbidity and a high level of burden, respectively. Data obtained were analyzed using the Statistical Package for Social Sciences Version 13 for Windows. All statistical tests of significance were carried out at 5% level of probability. Results: The patients were 60 women whose mean age was 57. Of the 103 caregivers, 60 (58%) were men and 43 (42%) were women. Their mean age was 37. Their mean ZBI and GHQ‐30 scores were 29.16±12.8 (median = 25) and 3.67±3.01, respectively. A high level of burden was found in 49.5% (95% CI 39.9–59.1%) and psychological morbidity was found in 46.6% (95% CI 37.0–56.2%) of the caregivers. High levels of burden and psychological morbidity were significantly associated with absence of financial support. Conclusion: The study demonstrated a high level of caregiver burden, psychological morbidity and financial strain in family caregivers coming to the clinic with a relative who has cancer in an urban Nigerian setting. Copyright © 2010 John Wiley & Sons, Ltd.     

Use of surgery among elderly patients with stage IV colorectal cancer.

PURPOSE: The role of surgery to remove the primary tumor among patients with stage IV colorectal cancer (CRC) is controversial. The purpose of this study was to evaluate surgical practice patterns for patients > or = 65 years of age with stage IV CRC in a US population-based cohort. PATIENTS AND METHODS: We used the Surveillance, Epidemiology, and End Results-Medicare-linked database to evaluate the patterns of cancer treatment for 9,011 Medicare beneficiaries presenting with stage IV CRC from 1991 to 1999. Patients were categorized according to whether they had primary-cancer-directed surgery (CDS) or no CDS within 4 months of diagnosis. The use of other treatment modalities, including metastasectomy, chemotherapy, and radiation, was evaluated in relationship to whether patients belonged to the CDS or no CDS group. RESULTS: Seventy-two percent (6,469 of 9,011) of patients received CDS, and their 30-day postoperative mortality was 10%. Patients with left-sided or rectal lesions, patients older than age 75 years, blacks, and those of lower socioeconomic status were less likely to undergo CDS; but even among those older than age 75, the CDS rate was 69% (3,378 of 4,909). In contrast, chemotherapy use was less common (47% for patients who had CDS and 31% for those who did not). Metastasectomy was rare; only 3.9% of patients underwent these operations at any point from diagnosis to death. CONCLUSION: Palliative resection of the primary tumor is often performed for elderly US patients with stage IV colorectal cancer. This practice pattern merits re-evaluation, given the improvement in the efficacy of systemic chemotherapy.     

Use of a camp setting to provide medical information to siblings of pediatric cancer patients

It has been reported that siblings of children with cancer often lack information and understanding about their brother's or sister's disease and treatment. The purpose of this paper is twofold: (1) to describe a camping program for siblings, which was designed, in part, to provide these children with age-appropriate medical information; and (2) to report the results of a study which examined how this intervention influenced siblings' knowledge and understanding of their brother's or sister's disease. Ninety siblings between the ages of 6 and 17 who completed a pre/post camp medical information questionnaire participated in this investigation. The results revealed that younger (6- to 11-year-old) siblings attending camp for at least the second time and older (12- to 17-year-old) siblings attending camp for the first time experienced significant (p less than .05) improvement in their overall knowledge and understanding of their brother's or sister's cancer. The results also revealed positive changes in the desired direction with respect to siblings' fear or their friends' fear about catching their brother's or sister's cancer. The results of this study provide a conceptual model for other pediatric cancer facilities engaged in developing intervention programs for siblings.     

Barriers to seeking cancer information among Spanish-speaking cancer survivors

Background. Hispanics face barriers in seeking cancer information from sources such as the National Cancer Institute’s Cancer Information Service. Their cancer screening rates are lower than those for whites. Methods. Three focus groups were conducted with 40 Spanish-speaking cancer survivors. Results. Few patients had used a toll-free telephone number to get cancer information. Only five had used the Internet. Fear of feeling worse was a common concern in seeking cancer information, as was trying to discuss their cancer in English. Spanish language media promotions were recommended. Conclusions. Beliefs and attitudes about cancer must be taken into account when developing culturally competent education programs for Spanish speakers.     

Patient information preferences among breast and prostate cancer patients

Preferences for information about their disease and treatment were collected from 392 patients who had been treated for either breast or prostate cancer an average of 2 years previously. Type of information that they had received, their ratings of its value to them and their preferred format for further information were examined. The most common and most preferred form of information was through doctor interview, followed by educational booklets. Prostate cancer patients preferred videotapes; breast cancer patients tended to prefer individualized approaches including a tour of the department. Effects of age, educational levels, occupational backgrounds and self‐reports for anxiety and depression at the time of the survey and at time of diagnosis were analysed. Prostate cancer patients who were most severely depressed showed a preference for not receiving any information at all, perhaps reflecting a tendency towards withdrawal.     

Motives of cancer patients for using the internet to seek social support

The purpose of the study was to describe why Finnish cancer patients choose the internet as a source of social support. The data were collected in May 2010, using an online questionnaire with open‐ended questions, through four discussion forums on the websites of the non‐profit Cancer Society of Finland. Seventy‐four adult patients with cancer participated. The data were analysed using inductive content analysis. The mean age of the participants was 53 years and they were predominantly women. The most common cancer was breast cancer and more than three quarters of the participants had suffered from cancer for less than 5 years. The initial stimuli to use the internet as a source of social support were the ease of communication and access to information as well as the need for emotional and informational support. The actual motives that drove the use of the internet as a source of social support were the requirements for information and peer support, internet technology, a lack of support outside the internet and the negative experiences caused by the illness. The fact that there is an enormous need for information as well as for emotional support and that cancer treatment in Finland is concentrated in major hospitals, to which cancer patients may travel a considerable distance, suggests that nurses should learn to make more frequent virtual contact with their patients.     

Strategies of information disclosure to Chinese cancer patients in an Asian community

There is little information available on strategies of information disclosure used by doctors in the care of patients with cancer. This report focuses on the style of disclosure used by doctors when giving diagnostic and prognostic information to patients with cancer. Among 46% of 133 surgeons and radiotherapists interviewed, disclosure of diagnosis involved a sudden approach (information given outright at one sitting). Less commonly used (19%) was a gradual disclosure style. Of the remainder who disclosed, more than half did so through the family or left it to the family to tell the patient. Doctors' speciality and patients' requests for prognostic information dictated disclosure style most frequently. Single people were more likely to have information disclosed to their families than were married people. While anecdotal accounts indicate negative reactions on the part of patients are a major reason for withholding such information, different disclosure style had little effect on doctors' reports of patient reactions to the bad news. Doctors perceived 25% of patients appeared to react ‘with depression’ but the remaining 75% appeared ‘calm’. These results suggest patients are more likely to be told bad news suddenly, and that doctors do not perceive that this impacts too negatively on patients. The high levels of reported preference for information about cancer in Hong Kong (Fielding and Hung, 1996) conflict with actual prevalence patterns. It seems that commonly cited anecdotal reasons for withholding information from cancer patients in Hong Kong are not sustained by the data produced in these studies. © 1998 John Wiley & Sons, Ltd.     

Receipt of recommended radiation therapy among rural and urban cancer patients

BACKGROUND:

Rural populations have limited geographic access to radiation therapy. The current study examines whether rural patients with cancer are less likely than urban patients with cancer to receive recommended radiation therapy, and identifies factors influencing rural versus urban differences in radiation therapy receipt.

METHODS:

The current study included 14,692 rural and 107,834 urban patients with 5 cancer types and stages for which radiation therapy was recommended. The authors used 2000 to 2004 Surveillance, Epidemiology, and End Results (SEER) Limited‐Use Data from 8 state‐based (California, Connecticut, Hawaii, Iowa, Kentucky, Louisiana, New Mexico, and Utah) and 3 county‐based (Atlanta, rural Georgia, and Seattle/Puget Sound) cancer registries. Adjusted radiation therapy receipt rates were calculated by rural versus urban residence overall, for different sociodemographic and cancer characteristics, and for different states based on logistic regression analyses using general estimating equation methods to account for patient clustering by county.

RESULTS:

Adjusted rates of radiation therapy receipt were lower for rural (62.1%) than urban (69.1%) patients with breast cancer (P ≤ .001). Among patients with breast cancer, radiation therapy receipt differed more by sociodemographic characteristics (eg, rural patients aged < 50 years had a 67.1% receipt rate, whereas those aged ≥ 80 years had a radiation therapy receipt rate of 29.1%) than rural versus urban residence. Adjusted rates of radiation therapy receipt were similar for rural and urban patients with other cancer types overall (66.1% vs 68.2%; difference not significant), although there were differences between urban and rural patients with regard to radiation therapy receipt for patients with stage IIIA nonsmall cell lung cancer (66.2% vs 60.7%; P ≤ .01).

CONCLUSIONS:

Sociodemographics, cancer types and stages, and state of residence appear to have a greater influence over receipt of radiation therapy than rural versus urban residence location, suggesting that factors such as social support, receipt of other cancer treatments, and regional practice patterns are important determinants of radiation therapy receipt. Cancer 2012. © 2012 American Cancer Society.     

Risk factors for suicide following hospital discharge among cancer patients

Objectives: This study aims to examine risk factors associated with 3‐month post‐discharge suicide among cancer patients using Taiwan's nationwide, population‐based datasets. Methods: The study cohort comprised all cancer patients discharged from hospitals from 2002 to 2004, inclusive, who committed suicide within 90 days of discharge (n=311). The control group consisted of 1555 cancer patients who did not commit suicide within 90 days of discharge. The dependent variable was whether or not a patient committed suicide within 90 days of discharge, while the independent variables included patient, hospital and physician characteristics at index hospitalization. Cox proportional hazard regression was carried out to compute the 90‐day survival rate, adjusting for possible confounding factors. Results: The mean interval from discharge to suicide was 39.7 days (±95.2) and almost half (46.3%) of the 3‐month post‐discharge suicides occurred within 14 days after discharge. The adjusted hazard of committing suicide for patients who were not hospitalized in the preceding year was 1.68 (p=0.009), 1.61 (p=0.033), and 2.51 (p<0.001) times greater, respectively, than patients who were hospitalized once, twice and more than twice within the year before index hospitalization. The hazard of committing suicide among patients who were unemployed was 1.71 (p<0.001) times that of their employed counterparts. Conclusions: We conclude that, while our study was limited to suicides among cancer patients within 90 days of discharge, around 60% of deaths occurred within the first month after discharge. The relevant risk factors include the number of hospitalizations within 1 year and employment status. Copyright © 2009 John Wiley & Sons, Ltd.     

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.