Patient Preference and Adherence (Feb 2024)
Preferences for Tailored Support – Patients’ and Health Care Professionals’ Experiences Regarding Symptoms and Self-Management Strategies During the First Year After Curatively Intended Prostate Cancer Treatment
Abstract
Nazmije Kelmendi,1,2 Marie Nilsson,2,3 Marina Taloyan,2,3 Kay Sundberg,1 Ann Langius-Eklöf,1 Åsa G Craftman1 1Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Stockholm, Sweden; 2Academic Primary Health Care Center, Region Stockholm, Stockholm, Sweden; 3Department of Neurobiology, Care Sciences and Society, Division of Family Medicine and Primary Care, Karolinska Institutet, Stockholm, SwedenCorrespondence: Nazmije Kelmendi, Department of Neurobiology, Care Sciences and Society, Division of Nursing, Karolinska Institutet, Alfred Nobels Allé 23, Stockholm, 141 52, Sweden, Tel +46 702 677 869, Email [email protected]: There is an increase in the number of men undergoing screening for prostate cancer, and advancements in treatments, which implies current knowledge about symptoms and self-management. This study aims to explore experiences of symptom distress, and self-management strategies during the first year after curatively intended treatment for prostate cancer, as identified by patients and health care professionals.Methods: A qualitative design was used, including data triangulation from individual interviews with patients (n =17) and one focus group interview with healthcare professionals (n =5). Thematic analysis was used.Results: The two main themes were identified: living with the consequences of treatment and navigating a new situation. Living with the consequences of treatment illustrated how losing control of bodily functions such as bladder, bowel, and sexual functions interfered with daily life. A stigma around the disease was described, and a life living in an unfamiliar body challenged ideas of masculinity. The first months after treatment ended was a distressing period related to the abruption in frequent contact with healthcare providers, and concerns about the future. The second theme, navigating a new situation, illustrates that self-management strategies varied, due to individual factors as did the need for tailored information and support provided from healthcare professionals and family, which was highly valued. Information and support were described as complex topics and healthcare professionals emphasized the need for appropriate education for staff to provide proper support to men after ended treatment.Conclusion: Lingering symptoms and concerns were evident during the first year after treatment. Self-management strategies varied, and timely and tailored information and support during the first year were considered highly valued, important, and preferred by patients. Our results indicate that support should be offered immediately after curatively intended treatment.Keywords: prostate cancer, self-management, symptoms, support, survivorship, information
