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Meeting the psychosocial needs of vulnerable groups such as cancer survivors remains an ongoing challenge. This is particularly so for those who have less access to the usual forms of medical specialist and in-person support networks. Internet-based approaches offer an opportunity to better meet patients’ information and support needs by overcoming the barrier of geographic isolation.
The aim of the study was to assess the reported level of access to the Internet, preferred sources of information, and preferred sources of support among survivors of hematologic cancers.
A population-based, Australian state cancer registry invited eligible survivors to complete a survey about psychosocial needs, including items measuring Internet access and patterns of use. Of the 732 eligible survivors invited to participate, 268 (36.6%) completed and returned the pen-and-paper-based survey.
The majority of participants (186/254, 73.2%) reported a high level of access to the Internet, with higher Internet access associated with a higher level of education, larger household, younger age, and being married or employed. A total of 62.2% (156/251) of survivors indicated they were likely to use the Internet for accessing information, with the percentage much lower (69/251, 28%) for accessing support via the Internet. Likelihood of using the Internet for support was associated with feeling anxious and being employed.
While the Internet appears to offer promise in increasing equitable access to information and support for cancer survivors for both metropolitan and regional areas, it is viewed less favorably for support and by particular subgroups (eg, older people and those without a university degree) within the survivor population. Promoting greater understanding of this mode of support may be required to achieve its potential. Information and support options other than Web-based approaches may continue to be needed by vulnerable groups of cancer survivors.
Although hematologic cancers such as lymphoma and leukemia are much less prevalent than other cancer types such as colorectal cancer or breast cancer [
The prevalence and nature of the disease and its treatment raise some particular issues for the provision of psychosocial support. The opportunities for peer support, for example, are limited by the relative rarity of an age- or gender-matched survivor being available for either face-to-face or telephone-based peer-support programs. The concentration of hematologic professionals in major centers also can result in low access to face-to-face information and support once a patient has completed a round of treatment, particularly for those who live in nonmetropolitan locations. Further, opportunities for social and peer support may be limited due to lengthy inpatient stays and restriction of activities due to risk of neutropenic infection. Therefore, it is likely that a suite of options needs to be made available in order that hematologic cancer patients receive sufficient information and support throughout the months and years that may follow diagnosis.
Alongside the vital role of specialist medical staff, the Internet offers unique advantages for the delivery of information and psychosocial support to hematologic cancer patients, primarily due to its high level of accessibility. Up to 77% of Australian cancer patients access information about cancer via the Internet [
A small group of studies have explored the effectiveness of Web-based psychosocial support for cancer survivors using robust randomized controlled designs [
While Internet accessibility is apparently high and increasing, there are no current data about the accessibility of this resource for hematologic cancer patients. Internet access can differ according to income, education, age, and geographic location [
The study aimed to do the following in a cross-sectional sample of people with a diagnosis of a hematologic cancer: (1) investigate the proportion of metropolitan versus regional survivors who reported a high level of access to the Internet, (2) measure the proportion who reported being likely to use various sources (Internet, print, telephone, face-to-face) for information and support and the perceived benefits of Internet options, and (3) explore the sociodemographic characteristics of survivors who reported both a high level of Internet access and being likely to use the Internet for information or support.
Through a population-based cancer registry we recruited survivors aged 18 to 80 years at study invitation who had a diagnosis of leukemia, lymphoma, or myeloma in the prior 3 years. Use of this registry permitted sampling across the full range of cancer types, locations, and stages of treatment.
On behalf of the researchers the cancer registry sent all eligible patients a questionnaire package containing an invitation letter, information statement, prepaid envelope, registry brochure, self-report pen-and-paper survey, and questionnaire package for their principal support person. Patients who did not respond to the initial questionnaire after 4 weeks were mailed a reminder letter from the cancer registry and a second questionnaire package.
The 30-minute self-report pen-and-paper survey comprised a series of measures regarding psychosocial issues for cancer survivors, a subset of which are reported here. Participants were asked about their use of the Internet, accessibility of the Internet, likelihood of using each of a range of options for seeking support or assistance, and perceived benefits and disadvantages of the Internet for cancer-related information and support.
Survivors’ residential postcodes were used to classify their location on the Accessibility/Remoteness Index of Australia (ARIA+) classification. Metropolitan was defined as the ARIA+ category major cities, and regional was defined as inner regional, outer regional, remote, or very remote.
We reported proportions to describe level of Internet access on each access item. Chi-squares were used to compare metropolitan versus regional access on each item and on overall access score. An access score was calculated as follows. A high score consisted of 5 or more of the following responses: frequency of access (any/most of the time), connection problems (none/minor), privacy (moderately/very), comfort (very/moderately), printing (any/limited), and confidence (very/moderately). A moderate score was any 3 or 4 of these responses, and low was classed as a score of 0–2. A score of 0 was given to those who indicated they had no access to the Internet for personal use.
Response categories of likely and very likely were combined. Proportions and 95% confidence intervals were used to describe the data for each item.
We conducted initial chi-square analyses with the following independent variables: gender, living in a rural area, education, marital status, employment status, household size, health status, and whether the survivor had normal or some level of anxiety or depression. Age at diagnosis in 5-year categories was analysed using
We invited 732 eligible survivors to complete and return a survey. Of these, 268 (36.6%) returned a completed survey. The age distribution of responders was significantly different from that of nonresponders, with younger people less likely to return a survey than older people (χ2
5 = 17.2,
Sociodemographic characteristics of the sample calculated for those living in a major city or regional area at the time of the survey (n = 268)
Metropolitan | Regional | Total | Test |
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n | % | n | % | n | % | ||||
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(57.4, 14.3) | (61.9, 12.0) | (59.5, 13.4) |
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.01 | ||||
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60 | 40% | 51 | 43% | 111 | 41.4% | χ2 1 = 0.2 | .67 | |
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Lymphoma | 13 | 9% | 7 | 6% | 20 | 8% | |||
Leukemia | 43 | 29% | 29 | 24% | 72 | 27% | |||
Myeloma | 25 | 17% | 17 | 14% | 42 | 16% | |||
Non-Hodgkin lymphoma | 68 | 46% | 66 | 56% | 134 | 50.0% | χ2 3 = 2.8 | .43 | |
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High school or less | 60 | 40% | 50 | 42% | 110 | 41.0% | |||
Vocational training | 55 | 37% | 48 | 40% | 103 | 38.4% | |||
University | 33 | 22% | 20 | 17% | 53 | 20% | χ2 2 = 1.2 | .55 | |
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81 | 54% | 41 | 34% | 122 | 45.5% | χ2 1 = 11.3 | .001 | |
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108 | 72.5% | 96 | 81% | 204 | 76.1% | χ2 1 = 1.7 | .20 | |
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149 | 55.6% | 119 | 44.4% | 268 |
a Education data were missing for two participants.
Of the 260 participants who answered the Internet access questions, 204 (78.5%) reported having home Internet access and 67 (26%) reported Internet access at work; 48 (19%) reported having no Internet access and a further 5 (2%) reported no access to the Internet for personal use—that is, 20% were without access to the Internet for personal use. Of those with access (n=207), 167 (80.7%) report daily or weekly use of email.
Nature of Internet access for those with access who answered all the access questions (n = 201), and overall level of access for whole sample (n = 254)
Nature of access | Metropolitan (n=111) | Regional (n=90) | Total | χ2 2 |
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n | % | n | % | n | % | ||||
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Any time | 97 | 87% | 74 | 82% | 171 | 85.1% | |||
Most of time | 13 | 12% | 13 | 14% | 26 | 13% | 1.92 | .38 | |
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None | 90 | 81% | 56 | 62% | 146 | 73% | |||
Minor | 20 | 18% | 31 | 34% | 51 | 25% | 9.20 | .01 | |
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Very | 66 | 60% | 66 | 73% | 132 | 65.7% | |||
Moderately | 40 | 36% | 19 | 21% | 59 | 29% | 5.34 | .07 | |
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Very | 84 | 76% | 67 | 74% | 151 | 75.1% | |||
Moderately | 27 | 24% | 22 | 24% | 49 | 24% | 1.24 | .54 | |
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Any amount | 98 | 88% | 73 | 81% | 171 | 85.1% | |||
Limited amount | 6 | 5% | 8 | 9% | 14 | 7% | 2.02 | .36 | |
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Very | 60 | 54% | 42 | 47% | 102 | 50.8% | |||
Moderately | 41 | 37% | 29 | 32% | 70 | 35% | 5.90 | .05 | |
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High | 106 | 75.7% | 80 | 70% | 186 | 73.2% | |||
Moderate | 5 | 4% | 10 | 9% | 15 | 6% | |||
Low | 0 | 0% | 0 | 0% | 0 | 0% | |||
None | 29 | 21% | 24 | 21% | 53 | 21% | 3.14 | .21 |
a See text for access score calculation. The denominator for access score is the whole sample (ie, includes those with no access).
As
Likelihood (likely/very likely) of using Internet, telephone, print, electronic media, or face-to-face forms of support (n = 251)
Mode | Use for information | Use for support | |||
n | % (95% CIa) | n | % (95% CIa) | ||
Face-to-face | 218 | 87% (83%–91%) | 209 | 83% (79%–88%) | |
204 | 81% (76%–86%) | 164 | 65% (59%–71%) | ||
Internet | 156 | 62% (56%–68%) | 69 | 27% (22%–33%) | |
Electronic | 137 | 55% (48%–61%) | 107 | 43% (36%–49%) | |
Telephone | 131 | 52% (46%–58%) | 96 | 38% (32%–44%) | |
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≥2 | 222 | 88% (84%–92%) | 170 | 68% (62%–74%) | |
1 only | 21 | 8% (5%–12%) | 65 | 26% (20%–31%) | |
Print onlyb | 4 | 2% (0%–3%) | 11 | 4% (2%–7%) | |
Face-to-face onlyb | 13 | 5 (2%–8%) | 52 | 21% (16%–26%) | |
None | 8 | 3 (1%–5%) | 16 | 6% (3%–9%) |
a Confidence interval.
b Likely/very likely for item of interest and unsure/not likely/very unlikely to all others.
Educational level was significantly associated with reported high Internet access (Fisher exact test
Logistic regression analysis of factors associated with high reported Internet access, likelihood of using the Internet for information, and likelihood of using the Internet for support
High or likely | Low or unlikely | Odds ratio (95% CIa) |
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52.7 (13.2) | 65.46 (7.6) | 0.89 (0.84–0.94) | <.001 | ||
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No | 30 (65%) | 16 (35%) | ||||
Yes | 136 (82.9%) | 28 (17%) | 5.63 (2.12–14.94) | .001 | ||
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No | 69 (65%) | 38 (36%) | ||||
Yes | 97 (94%) | 6 (6%) | 4.02 (1.37–11.8) | .01 | ||
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52.12 (13.87) | 60.68 (10.41) | 0.95 (0.93–0.98) | <.001 | ||
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High school only | 45 (51%) | 43 (49%) | ||||
Vocational training | 50 (59%) | 35 (41%) | 1.3 (0.68–2.46) | .43 | ||
University degree | 41 (85%) | 7 (15%) | 5.06 (1.97–12.98) | .001 | ||
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No | 84 (56%) | 66 (44%) | ||||
Yes | 52 (73%) | 19 (27%) | 2.39 (1.23–4.63) | .01 | ||
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No | 22 (20%) | 91 (81%) | ||||
Yes | 37 (34%) | 71 (66%) | 2.53 (1.33–4.81) | .005 | ||
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No | 30 (20%) | 120 (80.0%) | ||||
Yes | 29 (41%) | 42 (59%) | 3.17 (1.66–6.05) | <.001 |
a Confidence interval.
As approximately three-quarters (73%) of the sample reported a high level of Internet access, such an approach appears to be relatively accessible to most patients. It must, however, be acknowledged that a substantial minority of the sample (20%) reported either having no Internet access at all (18%) or no access for personal use (2%). As higher reported Internet access was associated with higher educational level, younger age, being married, and being employed, those with less access appear to be a potentially isolated and disadvantaged group. Therefore, in order to avoid creating inequity, care should be taken to develop and provide appropriate alternative forms of information and support for such patients. An unexpected finding was that of no reported differences between regional and metropolitan participants regarding access to the Internet, other than greater difficulties with connectivity in regional areas. Therefore, Web-based approaches may indeed assist with improving access to information and support for cancer survivors, across a range of geographic locations. It is likely that adult patients with cancers other than hematologic cancers would similarly benefit from access to Web-based options for information and support.
The reported likelihood of using the Internet for obtaining information or seeking support was relatively low at 62% and 27%, respectively. Studies of Web-based interventions for depression and anxiety found that 78% to 95% of participants took up the offer [
The data suggest that, while the vast majority of patients reported being likely to use multiple modes for gathering information or seeking support (88% and 68%, respectively), face-to-face and print were the generally preferred forms. Notably, almost 1 in 4 participants reported they would access only one form of support, suggesting that retaining a range of support options is required in order to cater for the support needs of all hematologic cancer patients.
Interestingly, patients’ preference for receiving information via face-to-face or print mode has not changed over time, despite increased accessibility to Internet resources. Previous work by Hinds et al suggested that cancer patients receiving radiotherapy preferred to receive verbal information from their physician in the pretreatment phase and printed information in the posttreatment phase [
In accordance with our findings, one other study has found that cancer patients who were single, older, male, and less educated [
An additional new finding is the association between being classified as anxious and a reported likelihood of using the Internet for information and support. This may reflect a greater need or desire for information and support among this group, potentially driving a desire to access available options. Alternatively, anxious cancer survivors may prefer options that require less interpersonal interaction. Other studies support the view that level of anxiety mediates the relationship between seeking information online and using health care services [
The low response rate limits the generalizability of the data. However, given the scarcity of data regarding Internet accessibility for cancer patients generally and hematologic cancer patients in particular, these data are the best estimates available. It is possible that a paper-based survey is less likely to be completed by those with a preference for electronic media, resulting in the data providing an underestimate of respondents’ likely use of the Internet as a source of information or support. Low rates of expected use of the Internet, particularly for support, may also be partly due to difficulties in conceptualizing how such support might operate.
Ensuring that all hematologic cancer patients have equitable access to information and support remains a challenge. While Web-based approaches to information provision appear likely to be accessible and acceptable to the majority of patients, they are less attractive for the provision of support. In addition, more vulnerable patients such as those who are older, single, unemployed, or less educated are particularly likely to require alternative forms of information and support.
The authors gratefully acknowledge the study funding received from Cancer Australia,
None declared
CP oversaw the writing of the manuscript. AH conducted the data collection. All authors contributed equally to survey development and sampling, and to writing and reviewing the manuscript.
Survey items relating to Internet access and likelihood of use.
Accessibility/Remoteness Index of Australia
confidence interval