Surviving cancer treatment: An investigation of the experience of fear about, and monitoring for, recurrence in patients following treatment for colorectal cancer

Taylor, Claire; Richardson, Alison; Cowley, Sarah

doi:10.1016/j.ejon.2011.03.010

Cited by 43 publications

(60 citation statements)

References 39 publications

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“…Expectation of a cure after completing treatment was a natural outcome and the patients looked forward to live as usual. These experiences were in agreement with results in other studies of cancer patients [21,22]. In the present study the patients expressed doubts three months after they had finished chemotherapy.…”

Section: Discussionsupporting

confidence: 82%

The trajectory of neurotoxic side effects’ impact on daily life: a qualitative study

Drott

Starkhammar

Kjellgren

et al. 2016

Support Care Cancer

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Purpose 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 neurotoxity. 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. ConclusionThe 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 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 more person-centered care.

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Section: Discussionsupporting

confidence: 82%

The trajectory of neurotoxic side effects’ impact on daily life: a qualitative study

Drott

Starkhammar

Kjellgren

et al. 2016

Support Care Cancer

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“…Some patients experienced anxiety and stress associated with follow-up[29, 33]; concern over cancer recurrence was worse among patients with young children[34]. Patients often displayed a state of “guarding” associated with anxiety about recurrence, loss of confidence in health and perceived loss of control over one’s body[38]. Patients felt that evaluating unpleasant emotional states (including anxiety, restlessness and depression) was an important part of follow-up, a priority not shared among surgeons[25].…”

Section: Resultsmentioning

confidence: 99%

“…The National Health Service in the United Kingdom begins its manual on CRC services with a chapter concerning patient-centered care. [42] This review included eight studies from the United Kingdom[21–23, 27, 31, 33, 34, 38], with findings that reflect a wide range of patient-perspectives, from the positive role of reassurance[31] to the anxieties and guarding experienced by survivors[38]. A Canadian report called for better identifying survivors’ needs during follow-up, developing and implementing appropriate models for care and increasing collaboration between the healthcare system and the community.…”

Section: Discussionmentioning

confidence: 99%

A systematic review of patient perspectives on surveillance after colorectal cancer treatment

et al. 2017

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Purpose Surveillance after colorectal cancer (CRC) treatment is routine, but intensive follow-up may offer little-to-no overall survival benefit. Given the growing population of CRC survivors, we aimed to systematically evaluate the literature for the patient perspective on 2 questions: (1) How do CRC patients perceive routine surveillance following curative treatment and what do they expect to gain from their surveillance testing or visits? (2) Which providers (specialists, nursing, primary care) are preferred by CRC survivors to guide post-treatment surveillance? Methods Systematic searches of PubMed MEDLINE, Embase, the CENTRAL Register of Controlled Trials, CINAHL and PsycINFO were conducted. Studies were screened for inclusion by 2 reviewers, with discrepancies adjudicated by a third reviewer. Data were abstracted and evaluated utilizing validated reporting tools (CONSORT, STROBE, CASP) appropriate to study design. Results 3691 citations were screened, 91 full-text articles reviewed, and 23 studies included in the final review, 15 quantitative and 8 qualitative. Overall, 12 studies indicated CRC patients perceive routine surveillance positively, expecting to gain reassurance of continued disease suppression. Negative perceptions described in 6 studies included anxiety and dissatisfaction related to quality of life or psychosocial issues during follow-up. Although 5 studies supported specialist-led care, 9 studies indicated patient willingness to have follow-up with non-specialist providers (primary care or nursing). Conclusions Patients’ perceptions of follow-up after CRC are predominantly positive, although unmet needs included psychosocial support and quality of life. Implications for Cancer Survivors Survivors perceived follow-up as reassuring, however, surveillance care should be more informative and focused on survivor-specific needs.

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“…Published papers report mainly interview based studies, sometimes called serial interviews [10,11] to explore change over time, although other data collection methods are used. Different approaches have been taken to collection and analysis of data, for example, the use of longitudinal data to fully develop theoretical saturation of a category in a grounded theory study [12,13]. Data is not presented as a longitudinal narrative but as contributing to the properties of a category.…”

mentioning

confidence: 99%

“…Analysis is complex and multidimensional and can be tackled both cross-sectionally at each time point to allow analysis between individuals at the same time as well as longitudinally capturing each individual’s narrative. Thematic analysis is widely used [13-15] but can lead to cross-sectional descriptive accounts (what is happening at this time point) rather than focusing on causes and consequences of change. Research founded on explicit theoretical perspectives can move beyond descriptive analysis to further explore the complexities of experience over time [16].…”

mentioning

confidence: 99%

Developing longitudinal qualitative designs: lessons learned and recommendations for health services research

Calman

Brunton

Molassiotis

2013

BMC Med Res Methodol

212

277

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BackgroundLongitudinal qualitative methods are becoming increasingly used in the health service research, but the method and challenges particular to health care settings are not well described in the literature.We reflect on the strategies used in a longitudinal qualitative study to explore the experience of symptoms in cancer patients and their carers, following participants from diagnosis for twelve months; we highlight ethical, practical, theoretical and methodological issues that need to be considered and addressed from the outset of a longitudinal qualitative study.ResultsKey considerations in undertaking longitudinal qualitative projects in health research, include the use of theory, utilizing multiple methods of analysis and giving consideration to the practical and ethical issues at an early stage. These can include issues of time and timing; data collection processes; changing the topic guide over time; recruitment considerations; retention of staff; issues around confidentiality; effects of project on staff and patients, and analyzing data within and across time.ConclusionsAs longitudinal qualitative methods are becoming increasingly used in health services research, the methodological and practical challenges particular to health care settings need more robust approaches and conceptual improvement. We provide recommendations for the use of such designs. We have a particular focus on cancer patients, so this paper will have particular relevance for researchers interested in chronic and life limiting conditions.

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Surviving cancer treatment: An investigation of the experience of fear about, and monitoring for, recurrence in patients following treatment for colorectal cancer

Cited by 43 publications

References 39 publications

The trajectory of neurotoxic side effects’ impact on daily life: a qualitative study

The trajectory of neurotoxic side effects’ impact on daily life: a qualitative study

A systematic review of patient perspectives on surveillance after colorectal cancer treatment

Developing longitudinal qualitative designs: lessons learned and recommendations for health services research

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