The Qualitative Burden Of Cancer Survivorship From The Patients Perspective

To better understand the magnitude of the qualitative burden of cancer from the patient's perspective, the LAF conducted an open invitation Internet-based survey posted on the LAF Web site ( The survey was a large-scale battery of 83 queries about pathological and psychosocial topics such as medical support, emotional support, patient attitude, secondary health problems, financial issues, social relations, employment problems, and concerns about activities of daily living. From October 1-6, 2004, 1024 self-identified cancer patients responded and completed the survey. Demographics of the responders (shown in Table 1) indicated that most were Caucasian, married, college graduates, and living in or near a city. Ninety percent of responders had medical insurance and 57% had annual income greater than $50,000. Most of the responders were remote from cancer therapy with 73% more than 2 years from diagnosis and 45% as long-term survivors more than 5 years from diagnosis. Only 5% were recently diagnosed and 8% were undergoing cancer treatment. Whether this Internet-specific Web site study group was representative of the general population of cancer survivors remains undetermined and such bias must be considered in the application of results especially to underserved and minority populations with less access to health care resources.13

Table 2 illustrates the highlights of the survey. Almost half (47%) of the responders summarized that, "... in some strange way... ", that dealing with their cancer diagnosis forced them to feel like they're leading a better life. A key observation from the survey was that nearly half (49%) of respondents have unmet "non-medical" needs. The burden of "non-medical" issues was apparent with more than half (53%) agreeing that the practical and emotional consequences of dealing with cancer were often harder than the medical issues. The cancer physician, although qualified as an oncologist, was identified as being unable to accommodate nonmedical needs. Among those who felt their nonmedical cancer needs were unmet, 70% said their oncologists did not offer any support in dealing with the nonmedical aspect of cancer. The other 30% said their oncologist was willing to talk about these issues, but did not have enough information or experience to assist in this area.

Inadequate availability of resources was a common thread. One third of the responders indicated that only limited resources were available to meet their emotional needs; 28% lacked resources for practical issues such as financial management and work-related issues; 23% lacked resources for physical issues. On the other hand, 86% of responders indicated that resources were available for medical issues directly related to the cancer. Family members and friends provided the bulk of support and were generally viewed as being the most important resource. More than 33% of re-sponders indicated that government agencies were unable to provide support and 30% did not receive assistance from social workers. Twenty-four percent had not received assistance from their insurance company, 25% had some limited interactions,

Table 1. Demographics of the Cancer Survivorship Survey



Sex (male:female)


Age (median year/range)

52 (18->75)

Education (college graduate)


Marital status (married)


Type of residence

A big city


A suburb of a big city


A smaller city


A town or village


A rural area or the country


With health insurance


Total family income












African American




Asian/Pacific Islander


American Indian/Native American




Timing of cancer diagnosis

Less than 1 year prior to survey


1-2 years prior to survey


2-5 years prior to survey


5-10 years prior to survey


More than 10 years prior to survey


Type of cancer









Colon and rectal




Head and neck




Thyroid cancers














*Percent of the 1020 responders (±3.1%) unless otherwise noted. Some categories may not sum to 100% due to declined responses.

*Percent of the 1020 responders (±3.1%) unless otherwise noted. Some categories may not sum to 100% due to declined responses.

and 34% received acceptable support noting that not all responders had access to insurance.

The emotional toll of cancer survivorship was substantial with 72% of respondents stating they had to deal with depression as a result of their cancer. Despite this, 78% did not seek out the services of a counselor, social worker, psychologist, or psychiatrist. The causation for not seeking assistance was not addressed in the study but

Table 2. Key Findings of the Survey

Category Survey question Result*

General health outcome Currently experiencing "good health" 62%

Optimistic that will die from something "besides cancer" 59%

Life still affected by cancer ("more than a little") 40%

Dealing with cancer made "life better" 47%

Talk about cancer more than a few times/month 46%

Medical issues Had to deal with chronic pain 54%

Reduction or loss of sexual function 82%

Secondary health issues caused or exacerbated by cancer 53%

Emotional needs Emotional needs harder than physical needs 53%

Suffered depression due to cancer 72%

Problems with relationship with spouse/partner 60%

Some/few/no resources available for emotional needs 33%

Nonmedical needs Had unmet nonmedical cancer needs 49%

Physician unable to assist with identified nonmedical issues 70%

Financial issues Decreased income 83%

Incurred financial debt due to cancer of >$25,000 9%

Loss of insurance coverage 74%

Turned down treatment option due to finances 12%

Survivorship Would volunteer to assist in survivorship activities 70%

could be due to a lack of professional recognition or expertise compounded by a lack of available resources including health insurance coverage for these services. Sixty percent manifested problems in their relationship with a spouse or significant other.

Cancer survivorship issues remained long-term since 41% of survivors believed they would still die from cancer and 57% agreeing that cancer will always be a part of their life. Forty percent of responders stated that their lives were still consumed by cancer and related issues. Fear of recurrence from cancer remained active in 66% of survivors and another 20% had some concern. These results are profound considering that the majority of responders were remote from their cancer diagnosis and direct treatment. The survey also attempted to measure how often responders communicated with others about cancer. Ten percent indicated they had daily conversations about their cancer, 14% conversed weekly with the reminder communicating a few times per month (32%) or a few times per year (44%).

Well known secondary health problems, exacerbated by cancer treatment, remained important for more than half of respondents (53%) and within this group, 49% said they had a very difficult time dealing with the issue. Fifty-four percent of respondents had to deal with chronic pain. Thirty-three percent have dealt with infertility. Eighty-two percent had loss of sexual function.

Financial, insurance, and work-related issues were reported frequently in this survey noting that 43% said they've had to deal with decreased income as a result of their disease. Seventy-four percent had some loss of insurance coverage with 25% stating they went into debt as a result of their cancer and its consequences. For those in debt, 35% incurred debt up to $10,000, 24% of $10,000-$24,000, and 15% of $25,000-$49,000. Nine percent estimated their debt as greater than $100,000. Almost a third (32%) of respondents said they've had to deal with lack of advancement, demotion, or job loss as a result of their cancer and 34% said they felt trapped in their current job by the need to preserve health insurance coverage. Finally, 12% of respondents said they turned down a treatment option specifically because of financial concerns.

Despite these worrisome statistics, a remarkable aspect of the cancer survivor represented in this survey was their resilience and positive outcome from cancer. Sixty-two percent stated that they were in good health and 47% said, paradoxically, that dealing with cancer made life better. Also noted was 17% who indicated below average or poor health.

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