Living with Merkel Cell Carcinoma (MCC): Development of a Conceptual Model of MCC Based on Patient Experiences

Howard L. Kaufman (), Carla Dias Barbosa, Isabelle Guillemin, Jérémy Lambert, Lisa Mahnke and Murtuza Bharmal
Additional contact information
Howard L. Kaufman: Rutgers Cancer Institute of New Jersey
Carla Dias Barbosa: Patient-Centered Outcomes, Mapi
Isabelle Guillemin: Patient-Centered Outcomes, Mapi
Jérémy Lambert: Patient-Centered Outcomes, Mapi
Lisa Mahnke: EMD Serono
Murtuza Bharmal: Merck KGaA

The Patient: Patient-Centered Outcomes Research, 2018, vol. 11, issue 4, No 7, 439-449

Abstract: Abstract Background Merkel cell carcinoma (MCC) is a rare and aggressive skin cancer with limited treatment options at advanced stages. There is a paucity of data available regarding the impact of MCC and its management on patients’ lives. This study aimed to address this gap by interviewing patients with metastatic MCC entering a trial of an immunotherapy (avelumab). Methods In a single-arm, open-label, international, phase 2 trial in patients with stage IV, chemotherapy-refractory, histologically confirmed MCC, patients were invited to participate in semi-structured phone interviews. These were conducted before avelumab administration. Interview transcripts were analysed qualitatively to identify concepts important to patients relating to their experience of metastatic MCC and its management. Results Nineteen patients were interviewed. Most reported MCC to be painless and asymptomatic. They reported being often misdiagnosed and described a long process before receiving the correct diagnosis. They also reported a feeling of “shock” after being informed of the severity and seriousness of their cancer. Overall, patients did not report impaired physical and cognitive capacities or impact on daily lives, either before or after diagnosis. However, patients and their relatives reported feelings of “worry” and “fear” about the unknown outcome of the disease. Chemotherapy and radiotherapy negatively affected patients physically and psychologically in their everyday lives. Conclusions MCC disease was not perceived by the interviewed patients to result in severe functional limitations or to severely impact everyday activities, but was associated with substantial negative psychological impact. In contrast, chemotherapy and radiotherapy for MCC are highly debilitating and disrupt patients’ lives. ClinicalTrials.gov identifier NCT02155647.

Date: 2018
References: View complete reference list from CitEc
Citations:

Downloads: (external link)
http://link.springer.com/10.1007/s40271-018-0301-0 Abstract (text/html)
Access to the full text of the articles in this series is restricted.

Related works:
This item may be available elsewhere in EconPapers: Search for items with the same title.

Export reference: BibTeX RIS (EndNote, ProCite, RefMan) HTML/Text

Persistent link: https://EconPapers.repec.org/RePEc:spr:patien:v:11:y:2018:i:4:d:10.1007_s40271-018-0301-0

Ordering information: This journal article can be ordered from
http://www.springer.com/economics/journal/40271

DOI: 10.1007/s40271-018-0301-0

Access Statistics for this article

The Patient: Patient-Centered Outcomes Research is currently edited by Christopher I. Carswell

More articles in The Patient: Patient-Centered Outcomes Research from Springer, International Academy of Health Preference Research
Bibliographic data for series maintained by Sonal Shukla () and Springer Nature Abstracting and Indexing ().