Supportive Care in Cancer

, Volume 19, Issue 9, pp 1465–1469

What kind of cancer information do Internet users need?

Authors

  • Juhee Cho
    • Cancer Education CenterSamsung Medical Center
    • Department of Health, Behavior and SocietyJohns Hopkins Bloomberg School of Public Health
    • Department of EpidemiologyJohns Hopkins Bloomberg School of Public Health
  • Hang-In Noh
    • Cancer Information and Education Branch, Division of Cancer Control, National Cancer Control InstituteNational Cancer Center
  • Myung Hwa Ha
    • Department of Preventive MedicineNational Cancer Center
  • Se Na Kang
    • Cancer Information and Education Branch, Division of Cancer Control, National Cancer Control InstituteNational Cancer Center
  • Jin-young Choi
    • Hospice and Palliative Care Branch, Division of Cancer Policy and ManagementNational Cancer Center
    • Cancer Information and Education Branch, Division of Cancer Control, National Cancer Control InstituteNational Cancer Center
Short Communication

DOI: 10.1007/s00520-010-1057-9

Cite this article as:
Cho, J., Noh, H., Ha, M.H. et al. Support Care Cancer (2011) 19: 1465. doi:10.1007/s00520-010-1057-9

Abstract

Purpose

The Internet becomes one of the most effective communication media in healthcare. This study aimed to evaluate the cancer information sources and the needs of various types of Internet users.

Methods

We conducted a survey on the National Cancer Information Center website from April 2007 to December 2007. Of the 170,746 visitors, 507 responded to the survey, and the data were analyzed according to self-identified user types.

Results

The participants identified themselves as patients (17%), caregivers (32%), healthcare professionals (21%), or general public (30%). Different user groups looked for different cancer information. Totally, 72.1% patients and 82% caregivers wanted the information about treatment, and 71.3% of healthcare professionals and 88.2% of the general public wanted the information related to ‘prevention & diagnosis.’ Healthcare professionals had a higher need for “statistics & research” information compared to other Internet user groups. The Internet was reported as the most common source of cancer information for all user groups.

Conclusions

The type of cancer information needed and the usefulness of the information acquired on the Internet varied among the different types of user groups, suggesting that Web-based cancer information should be tailored to each type of user.

Keywords

Cancer informationInformation needInformation sourceInternet

Introduction

Individuals with cancer can benefit in many ways from information about their disease [1]. Better-informed cancer patients are more involved in the decision-making process, are more satisfied with their treatment choices, and communicate better with their families [2]. Caregivers also seek for information as much as possible, and patients and caregivers both prefer the information to be current [36].

Cancer patients and their caregivers look for information from various sources, including health professionals, family and friends, print materials, television, radio, the Internet, and other survivors [3, 5, 712]. Recently, the Internet is one of the most widely used sources of medical information and is becoming increasingly popular in all levels of society [6, 13]. In the United States, an estimated 93 million people used the Internet for health information in 2003, a 27% increase over 2002 [14]. Likewise, such usage increased from 37% of the population in 2005 to 68% in 2007 in the United Kingdom [15]. In South Korea, 77.1% of the general population (aged 6 years and older) used the internet in 2008 [16]. However, only 16.3% of people used the Internet for obtaining health information [17], and people experienced limited access and difficulties to find reliable information on the Web [5].

As there is increased importance of the Internet as a cancer information resource, many countries began to provide cancer-related information on government-run websites [18], and the National Cancer Information Center (NCIC) in Korea launched a website for providing cancer information in 2005. The Web portal services include common cancer information, questions and answers, national cancer statistics, various educational materials, and a medical glossary. The website had a full accreditation of the items from International Cancer Information Services Group in 2006 and acquired Health on the Net code certification in 2007.

Recently, the Canadian Cancer Society, the American Cancer Society, and the MD Anderson Cancer Center began to emphasize and provide tailored cancer information on the Internet. This study aimed to evaluate the different information needs and sources by different types of Internet users such as patients, caregivers, healthcare professionals, and general public.

Subjects and methods

Questionnaire

We developed a questionnaire about cancer information service and needs. The questionnaire consisted of 25 multiple choice or short answer questions: (1) seven questions for cancer information needs, (2) five questions for website satisfaction, (3) three questions for accessibility, (4) four questions for the content and format of the website, and (5) six questions on socio-demographics. The questionnaire was pilot tested by ten internal researchers and two cancer information professionals who also reviewed it.

Data collection

The survey was conducted on the NCIC website. Visitors to the NCIC website (www.cancer.go.kr) from April 2007 through December 2007 were invited to the survey. The survey was anonymous, and there were 170,746 visitors during the period.

Data analysis

A descriptive analysis was performed, and chi-square tests were used to examine the differences between groups. We used SAS software version 9.1.

Results

  1. 1.

    Participant characteristics

    A total of 507 people out of 170,746 participated in the survey. Table 1 lists the participant demographics. Of those, 86 (16.9%) identified themselves as patients, 161 (31.8%) as caregivers (family, friends, or relatives of cancer patients), 108 (21.3%) as healthcare professionals, and 152 (30%) as members of the general public. The patient group was older than the other groups, and the caregiver group had the largest proportion of people in their 40s (P < 0.001). The patient group had the largest proportion of unemployed people (P < 0.001) and had a small group that had occupational health insurance. About 17% of people were patients, and 26.1% of them (34 out of 86) were recently diagnosed. People in all four groups reported that the Internet was the most common source for cancer information. Both patient and healthcare professional groups preferred healthcare organizations as the second most common source of information while caregivers and general public preferred mass media such as newspaper and television.
    Table 1

    Participant characteristics (n = 507)

     

    All (n = 507)

    Patient (n = 86)

    Caregiver (n = 161)

    Healthcare professional (n = 108)

    General public (n = 152)

    P*

    Chi-square

    No. (%)

    No. (%)

    No. (%)

    No. (%)

    No. (%)

    Gender

    <.0001

    31.51

     Male

    222 (43.8)

    53 (23.9)

    81 (36.5)

    26 (11.7)

    62 (27.9)

      

     Female

    285 (56.2)

    33 (11.6)

    80 (28.0)

    82 (28.8)

    90 (31.6)

      

    Age (years)

    <.0001

    131.57

     <40

    149 (29.6)

    4 (2.7)

    27 (18.1)

    45 (30.2)

    73 (49.0)

      

     40–49

    183 (36.4)

    14 (7.7)

    76 (41.5)

    43 (23.5)

    50 (27.3)

      

     50–59

    115 (22.9)

    42 (36.5)

    41 (35.6)

    14 (12.2)

    18 (15.7)

      

     ≥60

    56 (11.1)

    23 (41.1)

    17 (30.4)

    5 (8.9)

    11 (19.6)

      

    Region

    0.50

    2.37

     Cities

    268 (52.9)

    39 (14.6)

    88 (32.8)

    58 (21.6)

    83 (31.0)

      

     Else

    239 (47.1)

    47 (19.7)

    73 (30.5)

    50 (20.9)

    69 (28.9)

      

    Had job

    <.0001

    31.65

     Yes

    420 (82.8)

    60 (14.3)

    125 (29.8)

    106 (25.2)

    129 (30.7)

      

     No

    87 (17.2)

    26 (29.9)

    36 (41.4)

    2 (2.3)

    23 (26.4)

      

    Insurance type

    0.009

    21.86

     Health insurance

    445 (87.8)

    70 (33.4)

    142 (65.9)

    101 (39.3)

    111 (61.4)

      

     Medical care

    38 (7.5)

    11 (29.0)

    14 (36.8)

    4 (10.5)

    9 (26.7)

      

     Unspecified

    24 (4.7)

    5 (20.8)

    5 (20.8)

    3 (12.5)

    11 (45.9)

      

    Current cancer status

    0.14

    4.00

     Under treatment

    183 (78.5)

    57 (31.1)

    126 (68.9)

      

     Under recovery

    41 (17.6)

    19 (46.3)

    22 (53.7)

      

     Complete cure

    9 (3.9)

    2 (22.2)

    7 (77.8)

      

    Disease duration (months)

      

     <12

    130 (57.3)

    34 (26.1)

    96 (73.9)

    0.01

    8.83

     12 ~ 59

    82 (36.1)

    35 (42.7)

    47 (57.3)

      

     ≥ 60

    15 (6.6)

    8 (53.3)

    7 (46.7)

      

    Cancer information sources

     Healthcare organization (hospital, a public health center)

    46 (9.1)

    10 (11.6)

    12 (7.5)

    11 (10.2)

    13 (8.6)

      

     Mass media (newspaper, TV, radio)

    44 (8.7)

    9 (10.5)

    14 (8.7)

    5 (4.6)

    16 (10.5)

      

     Family/friends/colleagues

    18 (3.5)

    3 (3.5)

    9 (5. 6)

    0 (0.0)

    6 (3.9)

      

     Public information (e.g., leaflet, poster, hanging screen, education books)

    15 (2.9)

    2 (2.3)

    1 (0.6)

    10 (9.3)

    2 (1.3)

      

     Othera

    12 (2.4)

    0 (0.0)

    2 (1.2)

    7 (6.5)

    3 (2.0)

      

     Campaign/lecture/symposium

    8 (1.6)

    1 (1.2)

    0 (0.0)

    4 (3.7)

    3 (2.0)

      

     Telephone counseling

    6 (1.2)

    2 (2.3)

    1 (0.6)

    0 (0.0)

    3 (2.0)

      

    aTechnical books, journals, lectures, internal and external articles, etc.

     
  1. 2.

    Type of information needed according to user type

    Table 2 shows the type of information needed according to user type. Of the total, 72.1% patients and 82% caregivers wanted the information about treatment, and 71.3% of healthcare professionals and 88.2% of the general public wanted the information related to ‘prevention & diagnosis.’ Healthcare professionals had a relatively higher need for “statistics & research” information than the other groups.
    Table 2

    Cancer information needed by Website users (participants could choose more than one information category, and the information categories were not mutually exclusive)

    Information

    All

    Patient

    Caregiver

    Healthcare professional

    General public

    Total

    Rank

    No. (%)

    Rank

    No. (%)

    Rank

    No. (%)

    Rank

    No. (%)

    Rank

    No. (%)

    Prevention and diagnosis

    1

    349 (68.8)

    3

    45 (52.3)

    3

    93 (57.8)

    1

    77 (71.3)

    1

    134 (88.2)

    698

    Treatment

    2

    318 (62.7)

    1

    62 (72.1)

    1

    132 (82.0)

    2

    51 (47.2)

    2

    73 (48.0)

    636

    Cancer support

    3

    254 (50.1)

    2

    51 (59.3)

    2

    110 (68.3)

    4

    40 (37.0)

    3

    53 (34.9)

    508

    News and education materials

    4

    93 (18.3)

    4

    19 (22.1)

    4

    17 (10.6)

    5

    33 (30.6)

    4

    24 (15.8)

    186

    Statistics and research

    5

    90 (17.8)

    5

    4 (4.7)

    5

    14 (8.7)

    3

    49 (45.4)

    5

    23 (15.1)

    180

    Total responses

     

    1,104

     

    181

     

    366

     

    250

     

    307

     

    Total subject

     

    507

     

    86

     

    161

     

    108

     

    152

     
     

Discussion

In this study, we found that different Internet users looked for different types of information. It suggests that websites would differ in value to different people, and tailored websites to meet the needs of different users would be necessary.

We confirmed that the user type could be a tailoring factor of cancer information. The most needed information depending on the category of the general public and healthcare professionals in our study was for ‘prevention & diagnosis’ information. However, the information most needed by patients and caregivers was ‘treatment information’, consisting of the findings of studies in the USA [19] and Netherlands [20]. Yet these are inconsistent with the results from studies in Japan and Italy where the caregivers of newly diagnosed cancer patients had a greater need for ‘disease’ information than ‘treatment’ information [2, 21].

Time since diagnosis is one such factor. In a study among Korean cervical cancer patients, the most needed type of information at the time of diagnosis concerned ‘treatment’, but after treatment it concerned ‘self-care methods’ [12]. In a US study of young adult cancer patients, the high need for information concerning ‘treatment’ was met, but the similarly high need for information concerning ‘diet and nutrition’, ‘exercise’, ‘complementary and alternative health care services’, and ‘assistance with health insurance’ was not [22]. The NCIC homepage also gives priority to cancer treatment information. We believe that the site should be enriched with other kinds of cancer information so that the diverse needs of cancer patients and others with an interest in the disease can be met. In our study, healthcare professionals reported a great need for ‘statistics & research’ information, suggesting that the website should be also dedicated to provide accurate and updated cancer statistics and research outcomes.

Among our study participants, who were de facto Internet users, the Internet was the most common source of cancer information, but in other studies, the physician was the primary source of cancer information for cancer patients [7, 8, 11] and caregivers [11], and the Internet was rarely cited by cancer patients [5, 6, 9, 10, 12] or caregivers [6]. These differences may arise from the use of different survey methodologies. Other surveys of patients and caregivers were conducted by interview or telephone survey while our survey was conducted online. Nevertheless, those with access to the Internet use it continuously for medical information [5], especially young cancer patients [5, 10, 12, 23]. In one study, Internet use was higher among women than men [24], but we cannot compare those results directly with ours because our sample was self-selected rather than random. In another study, the participants cited the advantages of the Internet as an information source as providing ‘adequate detail’, enabling one to ‘go back and check’, ‘allows me to think in private’, ‘understandable’, and ‘accessible’ [6].

As usage of the Internet as a cancer information source increases, continuous and cost-effective website development will become more important. For this, we should solicit the opinions of active Internet users and reflect their views. Moreover, the Internet may be used in new ways, such as for interactive and personal communication through websites. Considering the short time that patients spend with their physician in the clinic in Korea, such interactive uses would help patients satisfy their unmet information needs. Moreover, online sources could provide a “second opinion” and could even lead to an altered treatment plan [13].

Our study has several limitations. First, the participants do not represent all Internet users because the survey was conducted at one specific website. Furthermore, we had not asked to know how many times the same people are using. Even so, this was a large-scale study that included more than 500 Internet users and which was conducted over a 5-month period. Second, the questionnaire was Web-based and self-administered, and some participants may not have been sincere in their responses. Third, this was a cross-sectional survey and we could not evaluate the information needs of patients relative to the time of diagnosis. Fourth, only the views of online users were sampled; offline users were not covered. Nonetheless, our study was uniquely focused on online users and their behavior and their needs. Fifth, we used multiple choice questionnaires to assess the cancer information needs. However, we analyzed the rank for frequencies by user types and chi-square test.

This large-scale study of NCIC homepage users indicated that cancer information needs vary with the type of user and that the Internet was the most common source of cancer information for our sample. Strategies are needed to improve content and to tailor the website to so that it satisfies the needs of all potential users.

Acknowledgements

We thank the Internet users who gave their time to this project. This study was funded by a grant from the National Health Promotion Fund, Ministry for Health & Welfare, Republic of Korea (Grant No. 1010132-1), and National Cancer Center (Grant No. 0710190-3).

Copyright information

© Springer-Verlag 2011