Abstract
AIMS: To explore the lived experiences of patients with periprosthetic infection in a mega prosthesis reconstruction after sarcoma resection. METHODS: Sarcoma patients treated between January 2016 and May 2023 with a surgical bone sarcoma resection and reconstruction with a mega prosthesis and a subsequent treatment for a deep periprosthetic infection, at one of three sarcoma centres in Sweden, were enrolled post-completion of sarcoma and infection therapies. Data were collected using semi-structured interviews, verbatim transcribed, and analyzed using a qualitative phenomenological method. The interviews were conducted from November 2022 to November 2023. RESULTS: Eight interviews, lasting 33 to 68 minutes, were conducted. Seven participants (three females) with a mean age of 29 years (22 to 59), were interviewed once. One participant experienced a reinfection, necessitating a second interview. The study's findings indicate that participants lacked awareness of periprosthetic infection risk and severity, with concerns regarding tumour recurrence outweighing these risks. Infection treatment was described as more tolerable than the tumour treatment. Despite positive previous encounters with medical personnel, the hospital, the same as for the cancer treatment, evoked negative emotional responses. All participants reported a decline in joint function post-infection compared with pre-infection, and all experienced changes in their self-perception. CONCLUSION: Improvements are needed in the communication of potential complications related to bone reconstruction; patients exhibit significant anxiety regarding tumour recurrence; and the patient's relationship with medical personnel and family significantly influences their ability to manage further extensive medical treatment.