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- Drott, Jenny, 1976-
(författare)
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Neurotoxic side effects and impact on daily life in patients with colorectal cancer with adjuvant oxaliplatin-based chemotherapy
- 2018
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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.
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| 2. |
- Drott, Jenny, 1976-, et al.
(författare)
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Oxaliplatin-Induced Neurotoxic Side Effects and Their Impact on Daily Activities
- 2019
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Ingår i: Cancer Nursing. - : Lippincott Williams & Wilkins. - 0162-220X .- 1538-9804. ; 42:6, s. E40-E48
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Tidskriftsartikel (refereegranskat)abstract
- Background: Oxaliplatin (OXA) is frequently used in the treatment of patients with colorectal cancer, and OXA-induced neurotoxic side effects are common. Reports on real-time patient-reported neurotoxic side effects and impact on the patient's daily activities are sparse in existing studies. Objective: The aim of this study was to identify and assess patient-reported OXA-induced neurotoxic side effects and their impact on the patient's daily activities, during and after chemotherapy. Methods: In a multicenter prospective longitudinal study, 46 chemo-naïve patients with colorectal cancer treated with postoperative adjuvant OXA-based chemotherapy were monitored during treatment and at 3-, 6-, 9-, and 12-month follow-ups. Patients were recruited from September 2013 to June 2016. In total, 370 Oxaliplatin-Associated Neurotoxicity Questionnaire responses were available for analysis. A mobile phone-based system was used to receive real-time assessments. Results: All patients reported neurotoxic side effects and impact on daily activities during treatment. The side effects changed in character and body location over time and had an impact on the daily activities. Conclusions: The high prevalence of OXA-induced neurotoxic side effects significantly interfered with the patients' daily activities. We found significant differences between baseline data and follow-up time points for neurotoxicity, and the patients had not returned to baseline after 1 year. Implications for Practice: The real-time assessment using mobile phone technology seems to be a valuable tool for monitoring patient-reported neurotoxicity and interventions for tailored care. Effectively identifying neurotoxicity and its impact on the patient's daily activities is important in supportive cancer care.
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| 3. |
- Johnson, Christina, 1964-
(författare)
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Telephone advice nursing : communication, patient satisfaction and tool development
- 2018
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Licentiatavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Background: Telenursing has rapidly expanded in many countries. In Sweden, a national telephone advisory nursing service reaches the entire nation and receives approximately 4,5 million calls per year. The six phase nursing process – assessment, nursing diagnosis, setting goals, planning, implementation and evaluation – can be used when managing a caller’s health problem. In telenursing, a person-centred approach makes for more satisfied and appreciative callers. The core component of interaction is the verbal communication between the telenurse and caller. Several studies have revealed the need for the development of communication competence in telenursing. Structured analyses of conversations between telenurses and callers is one way to increase telenurses’ awareness of their communication and interpersonal competence. This type of analysis requires a valid formative self-assessment tool. To evaluate communicative effectiveness, the patient perspective of the interpersonal aspects of interaction are described as a necessary component, and satisfaction surveys designed for a telenursing context are recommended. Therefore, a questionnaire is needed that evaluates the effects of telenurse communication training from the caller’s perspective.Aims: The overall aim of these two studies was to develop tools to enable improvements and evaluations in communication and interpersonal competence in telenursing from the perspective of both the telenurse and the caller.Study 1: To develop a self-assessment tool aiming to raise telenurses’ awareness of their communication and interpersonal competence and highlight areas in need of improvement.Study 2: To develop and assess content validity of a theoretically anchored questionnaire that explores caller satisfaction in TAN as a result of the interaction between the caller and the telenurse.Methods: Study 1: The development and the evaluation of content validity of the Telenursing Self-Assessment Tool (TSAT) started with a literature search and domain identification, which were used to generate the items. The assessment of the content validity was performed in two steps. First, an expert group completed two rounds of assessments using Content Validity Index (CVI). Second, telenurses tested the tool and assessed the content validity using CVI. Thereafter, the telenurses participated in consensus discussions. Refinements of the tool were done after every assessment.Study 2: The development and the evaluation of content validity of the Telenursing Interaction and Satisfaction Questionnaire (TISQ) started with a literature search and domain identification, which were used to generate the items. The assessment of the content validity was performed in two steps. First, cognitive interviews were performed with the callers, the target population. Next, experts evaluated the content validity using CVI. Refinements of the tool were done after every assessment. The Interaction Model of Client Health Behavior (IMCHB) provided theoretical guidance and support.Results:Study 1: The TSAT with 58 items was developed. The items were structured according to the nursing process and the tool was judged as having good content validity.Study 2: The TISQ consisting of 60 items based on the IMCHB was developed. The questionnaire was found to exhibit good content validity.Conclusions: This thesis describes the development and assessment of content validity of two theoretically anchored tools aimed to improve and evaluate communication and interpersonal competence in telenursing from the perspective of both the telenurse and the caller. The TSAT is meant to create learning opportunities, to provide self-direction, feedback, and coaching, and to guide the telenurse through the nursing process using a person-centred approach. The TISQ aims to explore the callers’ satisfaction and the callers’ perceptions of the interaction with the telenurse. With better knowledge about this, communication improvement and education in telenursing can be tailored to enhance caller satisfaction.
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| 4. |
- Pihl Lesnovska, Katarina, 1973-
(författare)
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Life situation among persons living with inflammatory bowel disease.
- 2017
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Living with inflammatory bowel disease (IBD) affects physical, psychological and social dimensions, limiting the ability to engage in daily activities. Persons with IBD may need frequent and lifelong contacts with the healthcare (HC), highlighting the importance of quality care. High quality HC for persons with IBD involves a partnership between the HC professionals and the person living with the disease. Information is essential, the more a person knows about their disease, the more concordant and satisfied with their treatment they are likely to be.The overall aim of this thesis was to describe the knowledge need, life situation and perception of HC among persons living with IBD, in order to develop a questionnaire to evaluate the quality of HC.This thesis is based on three studies that are presented in four papers. Qualitative methods were used to describe aspects of life situation in relation to the disease, whereas quantitative method was used to develop a questionnaire measuring quality of care. Study I and II have an inductive qualitative design. In study I, qualitative interviews with 30 people were performed to describe the knowledge need and experience of critical incidents in daily life while living with IBD. The interviews in study I were analyzed using content analysis (results presented in Paper I) and critical incident technique (results presented in Paper II). In study II, the perceptions of HC among persons living with IBD was explored in five focus group interviews and two individual interviews, in total n=26. Study III aimed to develop and evaluate a questionnaire, measuring quality of care among persons with IBD, including 318 persons with IBD and 8 professionals. The knowledge need among persons with IBD focused on managing symptoms and course of the disease and learning to assimilate the information in order to manage everyday life. Losing bowel control was of great concern for most of the informants in the study. Many of the informants said that “the bowel ruled their life” and that it influenced them to a great extent in their daily lives. The perception of HC among persons with IBD meant being met with respect and mutual trust, receiving information at the right time, shared decision-making, competence and communication, access to care, accommodation, continuity of care and the pros and cons of specialized care. The quality of care questionnaire QoC-IBD was constructed in five dimensions, building on the results from Study I and II. The dimensions were trust and respect, decision-making, information, continuity of care and access to care consisting of 21 questions in total. QoC-IBD is a short, self-administrated questionnaire that measures experiences of healthcare among persons with IBD with promising validity and reliability.To improve quality of care, HC is recommended to consider individual care needs and take the person’s daily life and social context into account. The QoC-IBD questionnaire measures the subjective experience of quality of care. Further testing in clinical practice is necessary to evaluate if QoC-IBD can be used to evaluate the care given and areas of improvement in HC for persons living with IBD.
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