Patient experiences of having a neuroendocrine tumour: a qualitative study

Limited qualitative studies exist regarding the patient experience of having a rare cancer. We sought to understand the patient experience of having a rare malignancy by interviewing patients diagnosed with neuroendocrine tumours (NET).

Semi-structured qualitative interviews were used to examine the cancer journey experience of NET patients. Purposive sampling was utilized and 18 telephone interviews were completed by a single interviewer. Eight interviewees were female, median age was 63 (age range 45-77). Median interview time was 31 min (range 9 min - 2 h 8 min). Patient interviews were transcribed verbatim and analysed using qualitative research methodology. Grounded theory guided the generation of the interview guide and analysis.

The dominant theme identified was that of 'no clear pathway' of care for the patient with NETs. Four subthemes that influenced this theory included: (1) difficulty with obtaining a diagnosis; (2) difficulty finding appropriate information about NETs from physicians; (3) difficulty finding treatment centres with knowledge of NETs and (4) difficulty finding disease specific support. Two global modifiers were also identified; satisfaction with a specialized clinic and long term physical and psychological side effects of treatment. These modifiers did not affect the overall theme but do potentially offer a solution for some of the difficulties the patients experienced.

Patients with NETs had 'no clear pathway' of care in their cancer journey. A multidisciplinary specialized clinic for NETs is recommended as well as a strong role for nursing in providing support and building patient and family resilience.