Psychological burden on patients with cancer of unknown primary: from onset of symptoms to initial treatment

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Abstract

Objective

Supportive care is a critical issue especially for patients with cancer of unknown primary since they often face serious situations, continuing to seek for relevant diagnosis and treatment with the primary sites unknown. However, there are only few research reports on this subject. The aim of this study was to clarify the experience on patients with cancer of unknown primary until they have their initial treatment and to obtain suggestions of supportive care for them.

Methods

A qualitative study using semi-structured interviews regarding the experience on patients with cancer of unknown primary was conducted.

Results

Data of the experience of the nine patients with cancer of unknown primary until their initial treatment were collected by semi-structured interviews. Patients’ speech at interviews recorded in verbatim reports was assigned with 545 codes, 102 subcategories and 38 categories. Experience of the patients with cancer of unknown primary was categorized into five phases: Phase 1: period of making self-judgment on symptoms; Phase 2: period of suspecting serious disease, and seeking for appropriate medical treatment; Phase 3: period of searching for cause of disease while having painful symptoms and anxiety; Phase 4: period of having fear for death, frustration with unknown cause and denial of unknown state; Phase 5: period of struggling but being determined to face disease.

Conclusions

Experience of patients with cancer of unknown primary from onset of symptoms to their initial treatment was categorized into five phases, mainly manifesting their psychological burden. These findings will warrant for the future study of supportive care for patients with cancer of unknown primary.

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