Experiences of cancer survivors with chemotherapy-induced peripheral neuropathy in the Netherlands: symptoms, daily limitations, involvement of healthcare professionals, and social support

• Published in: Journal of cancer survivorship Vol. 18; no. 5; pp. 1630 - 1639
• Main Authors: van de Graaf, Daniëlle L., Engelen, Vivian, de Boer, Aize, Vreugdenhil, Gerard, Smeets, Tom, van der Lee, Marije L., Trompetter, Hester R., Mols, Floortje
• Format: Journal Article
• Language: English
• Published: New York Springer US 01.10.2024; Springer Nature B.V
• Subjects: Activities of Daily Living; Adult; Aged; Antineoplastic Agents - adverse effects; Antineoplastic drugs; Cancer Survivors - psychology; Chemotherapy; Cross-Sectional Studies; Female; Health care; Health Informatics; Health Personnel - psychology; Health Promotion and Disease Prevention; Humans; Male; Medical personnel; Medicine; Medicine & Public Health; Middle Aged; Neoplasms - drug therapy; Netherlands - epidemiology; Oncology; Patients; Peripheral Nervous System Diseases - chemically induced; Peripheral Nervous System Diseases - therapy; Peripheral neuropathy; Primary Care Medicine; Public Health; Quality of Life; Quality of Life Research; Sensation; Sexuality; Social environment; Social interactions; Social Support; Surveys and Questionnaires; Young Adult; Netherlands; Healthcare professionals; Chemotherapy-induced peripheral neuropathy; Symptoms; Daily limitations; Self-reported; Social support
• ISSN: 1932-2259; 1932-2267; 1932-2267
• DOI: 10.1007/s11764-023-01402-4

Purpose A significant proportion of cancer patients suffer from chemotherapy-induced peripheral neuropathy (CIPN). This descriptive study aimed to examine patients’ experience of CIPN symptoms, daily limitations, involvement of healthcare professionals, and social support. Methods Cross-sectional data have been collected in the Netherlands via a national online questionnaire comprising closed items only (February 2021). Results Out of 3752 respondents, 1975 received chemotherapy only (i.e., without targeted therapy) and were therefore included. The majority (71.2%) reported symptoms in both hands and feet (e.g., tingling and loss of sensation or diminished sensation). Participants reported most limitations in household chores, social activities, hobbies, sports, walking, and sleeping and least in family/(taking care of) children, cycling, driving, self-care, eating and drinking, and sexuality and intimacy. Many patients indicated that their healthcare professionals informed them about the possibility of CIPN development before treatment (58.4%), and they paid attention to CIPN during and after treatment (53.1%). However, many patients (43%) reported a lack of information on what to do when CIPN develops. Few participants (22%) visited their general practitioner (GP) for CIPN. In general, patients’ social environments sometimes to always showed empathy to patients. Conclusions Symptoms of CIPN are frequently reported and can result in various daily limitations. Support from professionals and peers is crucial in managing CIPN, which is sometimes lacking. Appropriate guidance and support should be provided to patients to decrease the impact of CIPN on daily life. Future research should investigate differences in chemotherapeutic agents and the resulting symptoms and consequences.