Rare cancer and return to work: experiences and needs of patients and (health care) professionals

Abstract

Purpose

Patients with a rare cancer often face delays in their diagnostic and treatment trajectory, which may affect their work. In this study, we explored experiences and needs of: 1) patients with a rare cancer regarding return to work (RTW) and work retention, and 2) (health care) professionals (HCPs) regarding work-related support of patients with a rare cancer, throughout their disease trajectory.

Methods

Semi-structured, in-depth interviews with working-age patients with a rare cancer (n = 16), and HCPs (n = 9) were conducted. During the interviews, a predefined topic list was used. Interviews were transcribed verbatim and analysed by means of thematic analysis.

Results

In total, three themes emerged from the interviews: 1) Awareness in patients and HCPs as a first step towards work, 2) Being/becoming an expert is a tough job, and 3) Enhancing employability through early personalized guidance.

Conclusions

Patients with a rare cancer are confronted with uncertainties regarding work, due to an overall lack of knowledge and experience with these types of cancer. Raising awareness among patients, HCPs and employers about rare cancer and its implications, and providing timely individualized, supportive occupational care are required to improve rare cancer patients’ ability to work.

Implications for rehabilitation

• Recognizing and paying attention to the work-related consequences of a rare cancer diagnosis and its treatment is essential to facilitate rare cancer patients’ occupational rehabilitation process.

• Multidisciplinary collaboration and involvement of HCPs specialized in rare cancer are required to provide suitable work-related support.

• A personalized approach is necessary to adequately address rare cancer patients’ RTW and work retention needs.

Keywords:

• Qualitative research
• rare cancer
• return to work
• experiences
• needs
• Netherlands

Acknowledgements

The authors express their gratitude to all patients and HCPs who participated in this study. Also, the auhours acknowledge the time and effort put into patient recruitment by various health care professionals and other stakeholders involved in the Dutch rare cancer field.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Data availability statement

The data that support the findings of this study are available from the corresponding author [SD] upon reasonable request.

Notes

1 Gatekeeper Act; in Dutch: Wet Verbetering Poortwachter, WVP

2 In Dutch: Wet werk en Inkomen naar Arbeidsvermogen, WIA

3 In Dutch: Werkhervatting Gedeeltelijk Arbeidsgeschikten, WGA (based on loss of former wages earned: <35%; 35-80%; 80-100% (complete, but non-durable))

4 In Dutch: Inkomensvoorziening Volledig Arbeidsongeschikten, IVA