Information needs in cancer patients across the disease trajectory. A prospective study

Goerling, Ute; Faller, Hermann; Hornemann, Beate; Hönig, Klaus; Bergelt, Corinna; Maatouk, Imad; Stein, Barbara; Teufel, Martin; Erim, Yeşim; Geiser, Franziska; Niecke, Alexander; Senf, Bianca; Wickert, Martin; Büttner-Teleagă, Antje; Weis, Joachim

doi:10.1016/j.pec.2019.08.011

Cited by 31 publications

(21 citation statements)

References 34 publications

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“…Moreover, misinterpretations and distress might be prevented if physicians anticipate "hot topics"such as heredityand address these with the patient in advance. In this regard, Goerling et al [26] showed the bidirectional relationship between satisfaction with information and symptoms of anxiety.…”

Section: Discussionmentioning

confidence: 99%

Information, communication, and cancer patients’ trust in the physician: what challenges do we have to face in an era of precision cancer medicine?

Pichler

Rohrmoser

Letsch

et al. 2020

Support Care Cancer

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Purpose Despite promising achievements in precision cancer medicine (PCM), participating patients are still faced with manifold uncertainties, especially regarding a potential treatment benefit of molecular diagnostics (MD). Hence, MD poses considerable challenges for patient information and communication. To meet these challenges, healthcare professionals need to gain deeper insight into patients’ subjective experiences. Therefore, this qualitative study examined information aspects of MD programs in cancer patients. Methods In two German Comprehensive Cancer Centers, 30 cancer patients undergoing MD participated in semi-structured interviews on information transfer and information needs regarding MD. Additionally, patients provided sociodemographic and medical data and indicated their subjective level of information (visual analogue scale, VAS, 0–10). Results On average patients had high levels of information (mean = 7, median = 8); nevertheless 20% (n = 6) showed an information level below 5 points. Qualitative analysis revealed that patients show limited understanding of the complex background of MD and have uncertainties regarding their personal benefit. Further, patients described unmet information needs. Existential threat in awaiting the results was experienced as burdensome. To withstand the strains of their situation, patients emphasized the importance of trusting their physician. Conclusion The challenges in PCM consist in providing unambiguous information, especially concerning treatment benefit, and providing guidance and support. Therefore, psycho-oncology needs to develop guidelines for adequate patient communication in order to help healthcare providers and cancer patients to handle these challenges in the developing field of PCM.

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Section: Discussionmentioning

confidence: 99%

Information, communication, and cancer patients’ trust in the physician: what challenges do we have to face in an era of precision cancer medicine?

Pichler

Rohrmoser

Letsch

et al. 2020

Support Care Cancer

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“…Participants were interviewed for this study before a qualitative interview study was conducted with a sample of patients with cancer [13]. Given that patients with cancer still report unmet information needs in recent years [5][6][7], it is prudent to continue with the development of interventions to support them and publish data that will help to build the evidence base in this field. National Health Service (NHS) ethical approval and R&D approval were granted (approval number: 14/WA/0066).…”

Section: Overviewmentioning

confidence: 99%

“…To become a more activated patient and to manage the changes in daily life that come with cancer, patients require relevant and accurate information [3], and patients generally want as much information as possible about their condition [4]. However, recent studies conducted in Europe and the United States over the last 5 years have reported high rates of unmet information needs among patients with cancer [5][6][7]. In addition to limiting patients' ability to participate in their care, unmet information needs are also associated with a lower quality of life, the loss of control over one's life, increased anxiety and depression, and dissatisfaction with care [5,[8][9][10][11].…”

Section: Introductionmentioning

confidence: 99%

Cancer Clinicians’ Views Regarding an App That Helps Patients With Cancer Meet Their Information Needs: Qualitative Interview Study

et al. 2021

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Background Many patients with cancer have unmet information needs during the course of the illness. Smart devices, such as smartphones and tablet computers, provide an opportunity to deliver information to patients remotely. We aim to develop an app intervention to help patients with cancer meet their illness-related information needs in noninpatient settings. In addition to the in-depth exploration of the issues faced by the target users of a potential intervention, it is important to gain an understanding of the context in which the intervention will be used and the potential influences on its adoption. As such, understanding the views of clinicians is key to the successful implementation of this type of app in practice. Additionally, clinicians have an awareness of their patients’ needs and can provide further insight into the type of app and features that might be most beneficial. Objective This study aims to explore cancer clinicians’ views on this type of intervention and whether they would support the use of an app in cancer care. Specifically, the perceived acceptability of an app used in consultations, useful app features, the potential benefits and disadvantages of an app, and barriers to app use were explored. Methods A total of 20 qualitative, semistructured interviews were conducted with 22 clinicians from urological, colorectal, breast, or gynecological cancer clinics across 2 hospitals in South Wales. The interviews were audio recorded, transcribed, and analyzed using thematic analysis. Results Clinicians felt that it would be acceptable for patients to use such an app in noninpatient settings, including during consultations. The benefits of this type of app were anticipated to be a more informed patient, an increased sense of control for patients, better doctor-patient communication, and a more efficient and effective consultation. In contrast, an increase in clinicians’ workload and poorer communication in consultations, which depended on the included app features, were identified as potential disadvantages. The anticipated barriers to app use included patients’ age and prior experience with smart technology, their access to smart devices, the confidentiality of information, and an avoidant coping approach to their condition. Conclusions This study suggests that clinicians should support their patients in using an app to help them meet their information needs both at home and during consultations. This study highlights some of the potential barriers for this type of intervention in practice, which could be minimized during the intervention design process.

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“…The high prevalence rates for anxiety and depression extends to oncology samples with rates ranging from 4% to 49% 3‐5 . However, some cancer survivors continue to have ongoing unmet psychosocial needs, which is associated with depression and anxiety 3,6,7 . Yet paradoxically, the uptake of mental health services is relatively poor, with studies showing that less than 30% of cancer survivors report accessing psychosocial services 8 …”

Section: Introductionmentioning

confidence: 99%

“…depression and anxiety. 3,6,7 Yet paradoxically, the uptake of mental health services is relatively poor, with studies showing that less than 30% of cancer survivors report accessing psychosocial services. 8 Several reasons proposed for the poor uptake of services in distressed cancer survivors, include knowledge of mental health (MH) disorders and structural barriers to treatment, which is encompassed by the multidimensional mental health literacy (MHL) phenomenon.…”

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confidence: 99%

Mental health literacy, treatment preferences and the lived experience of mental health problems in an Australian cancer sample

Kangas

Heißel

2020

Psycho-Oncology

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Objectives: The prevalence rates for mental health (MH) problems in cancer patients is high, although reduced uptake of services may be influenced by mental health literacy (MHL). The objective of this study was to investigate the MHL for depression and panic disorder (PD), including treatment preferences in Australian adults who had been diagnosed and treated for cancer, and whether MHL and treatment preferences was influenced by sex, age, and individuals' lived MH experience. Method: A total of 421 cancer survivors (n = 378 females) completed a self-report survey. Participants were asked to specify whether they had a lived experience with anxiety and/or depression, and to indicate treatment preferences for managing cancer-related distress. Two vignettes were administered to assess MHL for depression and PD. Results: The MHL accuracy for depression was higher than PD. Accuracy rates were higher for females with a lived experience with anxiety and/or depression; although the accuracy rate for PD was significantly lower in males. A high proportion of individuals preferred exercise and in-person counselling to manage depression and PD. Internet-based therapies were not strongly preferred for managing MH problems. Conclusions: The MHL for depression and PD is moderate for adult cancer survivors, with higher levels indicated for individuals with a personal lived experience with anxiety and/or depression. Public health campaigns for enhancing MHL should broaden to include individuals experiencing comorbid physical health conditions. Health providers also need to take into account client preferences for evidence-based therapies.

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Information needs in cancer patients across the disease trajectory. A prospective study

Cited by 31 publications

References 34 publications

Information, communication, and cancer patients’ trust in the physician: what challenges do we have to face in an era of precision cancer medicine?

Information, communication, and cancer patients’ trust in the physician: what challenges do we have to face in an era of precision cancer medicine?

Cancer Clinicians’ Views Regarding an App That Helps Patients With Cancer Meet Their Information Needs: Qualitative Interview Study

Mental health literacy, treatment preferences and the lived experience of mental health problems in an Australian cancer sample

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