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The trajectory of neurotoxic side effects' impact on daily life: a qualitative study
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.ORCID iD: 0000-0002-7601-6450
Linköping University, Department of Clinical and Experimental Medicine, Division of Clinical Sciences. Linköping University, Faculty of Medicine and Health Sciences. Region Östergötland, Center for Surgery, Orthopaedics and Cancer Treatment, Department of Oncology.
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.ORCID iD: 0000-0002-2764-3095
Linköping University, Department of Medical and Health Sciences, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.ORCID iD: 0000-0003-1588-135X
2016 (English)In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 24, no 8, p. 3455-3461Article in journal (Refereed) Published
Abstract [en]

PURPOSE:

The purpose of this study was to explore the experiences of oxaliplatin-induced neurotoxic side effects among patients with colorectal cancer (CRC) and how these side effects influenced their daily lives over time.

METHODS:

To assess neurotoxic side effects, ten patients were repeatedly interviewed. The patients were recruited from two hospitals in south of Sweden, had stage II-III CRC, and had been treated with adjuvant oxaliplatin postoperatively, from November 2013 to October 2015. They had received FOLFOX and XELOX, with a mean total dose of 791 mg oxaliplatin. After completed chemotherapy, at 3, 6, and 12 months into the post-treatment phase, 25 interviews were conducted and thematic analysis was used according to Braun and Clarke.

RESULTS:

Oxaliplatin-induced neurotoxicity affects patients in several ways in the long term. Four themes were identified: Expectation of cure, Dubiety, Normalization, and Learn to live with neurotoxicity. The findings of this study describe the trajectory of neurotoxicity and its impact on these patients' life situation. The findings confirmed that neurotoxicity is multi-faceted and that the experience of it changes over time.

CONCLUSION:

The desire to survive stimulates adaptations and strategies to manage daily life, and patients learn to live with the neurotoxic side effects. This study provides evidence that these patients need individual attention and support during the trajectory of neurotoxic side effects. Current care provision is inadequate due to a lack of knowledge of the ways in which neurotoxicity impacts the patient's daily life. This study provides insights that could be used to develop a more person-centered care.

Place, publisher, year, edition, pages
2016. Vol. 24, no 8, p. 3455-3461
Keywords [en]
Adjuvant chemotherapy; Colorectal cancer; Neurotoxicity; Oxaliplatin; Qualitative interviews; Thematic analysis
National Category
Nursing
Identifiers
URN: urn:nbn:se:liu:diva-126626DOI: 10.1007/s00520-016-3179-1ISI: 000378884400030PubMedID: 26992409OAI: oai:DiVA.org:liu-126626DiVA, id: diva2:915943
Note

Funding agencies:We thank all patients for their participation in this study. We also thank the Swedish Cancer Society, the Department of Oncology and Surgery, Linkoping University Hospital, and the Division of Nursing Science at the Department of Medical and Health Sciences for the financial support. Further thanks go to all the health professionals in the oncology clinics who were involved in the study in different ways.

Available from: 2016-03-31 Created: 2016-03-31 Last updated: 2018-05-15
In thesis
1. Neurotoxic side effects and impact on daily life in patients with colorectal cancer with adjuvant oxaliplatin-based chemotherapy
Open this publication in new window or tab >>Neurotoxic side effects and impact on daily life in patients with colorectal cancer with adjuvant oxaliplatin-based chemotherapy
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction: Colorectal cancer (CRC) is one of the most common cancers globally. Chemotherapeutic drugs are frequently used in postoperative treatment. The platinum compound oxaliplatin (OXA) is an option for adjuvant treatment of patients with resected CRC, and has been shown to improve survival. OXA-induced neurotoxic side effects are common (e.g. sensitivity to cold, numbness). Neurotoxicity can interfere with the patient’s daily living and affect ability to carry out activities. Because there is no evidence for effective treatment in terms of eliminating neurotoxic side effects, the most successful approaches include early identification, reduction of dose and interruption of treatment. Current research has identified a need for patient-oriented evidence in terms of long-term follow-up of neurotoxicity.

Aim: The overall aim of this thesis was to explore OXA-induced neurotoxic side effects in patients with colorectal cancer, and the influence on patients’ daily lives during and post OXA treatment.

Methods: The thesis is based on four studies, and includes an analysis of medical records, as well as prospective quantitative and qualitative approaches with longitudinal data collection through a mobile phone-based system. The studies were performed at oncology departments in four hospitals in Sweden. Inclusion criteria were that patients should be at least 18 years of age, and should have been treated with chemotherapy, including OXA (FOLFOX, XELOX), in an adjuvant setting for CRC stages II-III. Study I had a retrospective design, and data involved (n=61) medical records. A structured protocol was used to evaluate the documentation of patients’ neurotoxic side effects. In studies II and III, ten patients were recruited using a strategy of purposeful and consecutive selection according to the inclusion criteria, where OXA-related neurotoxic side effects were assessed. A total of 10 interviews were carried out when neurotoxic side effects appeared (II), and after completed OXA treatment (3, 6 and 12 month’s follow-up) 25 repeated interviews were conducted (III). The prospective longitudinal study IV aimed to identify and assess patient-reported outcomes in terms of neurotoxic side effects, and their impact on patients’ daily activities (n=46). An Oxaliplatin-associated Neurotoxicity Questionnaire (OANQ) was administered in real time to indicate patientreported outcomes. In total, 370 questionnaire responses were available for analysis.

Results: The results from the retrospective study (I) showed that a free description of the degree of neurotoxic side effects was given in the patients’ medical records. No formal assessment had been used in the documentation. The findings of the two qualitative studies contribute knowledge about how patients endure neurotoxic side effects early in the treatment phase, and how they learn to live with neurotoxicity in the long-term perspective. Patients coped with their side effects by developing different self-care strategies to restore normality in their daily lives (II-III). Neurotoxic side effects interferes with the patient’s daily activities in a variety of ways. These side effects change in terms of their character and their location in the body over time. The most frequent side effects during treatment were cold-precipitated tingling in the upper extremities and in the mouth/throat. At the end of treatment, neurotoxicity in the lower extremities was considered high and interfered with the patients’ daily activities. The results show significant differences between baseline data, and nine of the patients had not returned to baseline after one year (IV).

Conclusion: Neurotoxic side effects affect patients’ daily activities in different ways, with an impact on their physical, psychological, emotional and social life. Patients endured and coped with their side effects in different ways involving self-care strategies to restore normality. The patients’ daily lives were affected by numbness and tingling in the legs and tingling in upper extremity, and they had learned to live with these side effects. The neurotoxic side effects changed character and localisation over time. These results should be taken into account when patients are informed about treatment, and in the dialogue about the benefits and risks.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2018. p. 123
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1590
Keywords
Cancer care, Cancer nursing, Colorectal cancer, Neurotoxicity, Neuropathy, Oxaliplatin, Chemotherapy, Patient-reported outcomes, Health, Qualitative study, Longitudinal study, mHealth
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-147839 (URN)10.3384/diss.diva-147839 (DOI)9789176854426 (ISBN)
Public defence
2018-06-08, Hasselquistsalen, Campus US, Linköping, 13:00 (English)
Opponent
Supervisors
Funder
Swedish Cancer SocietyMedical Research Council of Southeast Sweden (FORSS)
Note

Financial support:

Division of Nursing Science, Linköping University

LFOU Grants, County Council of Östergötland

Department of Surgery, Linköping University Hospital

Lions, Linköping University

Swedish Society of Nursing

Available from: 2018-05-15 Created: 2018-05-15 Last updated: 2018-05-17Bibliographically approved

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Drott, JennyStarkhammar, HansKjellgren, KarinBerterö, Carina

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