Patient experiences of having a neuroendocrine tumour: a qualitative study

Abstract

Background and objectives: 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).

Methods: 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.

Results: 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.

Conclusions: 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.

Keywords: Multidisciplinary clinic; Neuroendocrine tumours; Patient care pathway; Patient experience; Qualitative research; Rare diseases; Social support.