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 (http://www.laf.org). 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

Category

Result*

Sex (male:female)

50%:50%

Age (median year/range)

52 (18->75)

Education (college graduate)

67%

Marital status (married)

68%

Type of residence

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