Do haematological cancer patients get the information they need about their cancer and its treatment? Results of a cross-sectional survey

Watson, Rochelle; Bryant, Jamie; Sanson‐Fisher, Rob; Turon, Heidi; Hyde, Lisa; Herrmann, Anne

doi:10.1007/s00520-018-4525-2

Cited by 17 publications

(14 citation statements)

References 38 publications

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“…With respect to the experiences of patients with chronic haematological malignancies, much existing literature is limited by the inclusion of individuals with both indolent and acute subtypes, with no differentiation between the two with respect to findings. Such studies have focused on issues such as information satisfaction, decision-making, and quality of life, as well as physician communication styles; identifying considerable scope for improvement [8][9][10][11][12][13][14]. Several studies have, however, specifically examined patients with chronic blood cancer subtypes in the last decade or so, with a recent survey identifying poorer diagnostic understanding compared to other malignancies [15]; a worrying issue given the link between information satisfaction and improved quality of life in cancer generally [16].…”

Section: Introductionmentioning

confidence: 99%

Incurable but treatable: Understanding, uncertainty and impact in chronic blood cancers—A qualitative study from the UK’s Haematological Malignancy Research Network

et al. 2022

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Objective Most blood cancers are incurable and typically follow unpredictable remitting-relapsing pathways associated with varying need for treatment, which may be distressing for patients. Our objective was to conduct a qualitative study to explore understanding among patients with such malignancies, including the explanations given by HCPs and the impact of uncertain trajectories, to generate evidence that could guide improvements in clinical practice. Methods The study is set within a population-based patient cohort (the Haematological Malignancy Research Network), in which care is delivered across 14 hospitals according to national guidelines. In-depth interviews were conducted with 35 patients with chronic lymphocytic leukaemia, follicular lymphoma, marginal zone lymphoma or myeloma; and 10 accompanying relatives. Purposive sampling ensured selection of information-rich participants and the data were interrogated using reflective thematic analysis. Results Rich data were collected and four themes (11 sub-themes) were identified: 1) Knowledge and understanding of chronic haematological malignancies; 2) Incurable but treatable; 3) Uncertainty about the future; and 4) Treatable (but still incurable): Impact on patients. Patients had rarely heard of blood cancer and many expressed difficulty understanding how an incurable malignancy that could not be removed, was treatable, often for long periods. While some were reassured that their cancer did not pose an immediate survival threat, others were particularly traumatised by the uncertain future it entailed, suffering ongoing emotional distress as a result, which could be more burdensome than any physical symptoms. Nonetheless, most interviewees understood that uncertain pathways were caused by the unpredictability of their disease trajectory, and not information being withheld. Conclusions Many participants lacked knowledge about chronic haematological malignancies. HCPs acted to reassure patients about their diagnosis, and while this was appropriate and effective for some, it was less so for others, as the cancer-impact involved struggling to cope with ongoing uncertainty, distress and a shortened life-span.

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Section: Introductionmentioning

confidence: 99%

Incurable but treatable: Understanding, uncertainty and impact in chronic blood cancers—A qualitative study from the UK’s Haematological Malignancy Research Network

et al. 2022

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“…Still, the additional value of the nurse-led patient navigation intervention, even in this group, is visible in this study, especially for the more practical and emotional domains of daily life. Cancer nurses should therefore be recognized as key members of the survivorship care team 30–32 …”

Section: Discussionmentioning

confidence: 99%

“…Cancer nurses should therefore be recognized as key members of the survivorship care team. [30][31][32] Despite the significant improvement of QoL over time in the IG, no differences in QoL were observed between the IG and the CG 1 year after transplantation. This improvement of QoL in the IG might be explained by a gradual improvement of the medical situation and the physical and psychosocial recovery after HSCT.…”

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confidence: 92%

Evaluation of a Nurse-Led Patient Navigation Intervention

et al. 2021

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Hematopoietic stem cell transplantation Nurse-led intervention Patient navigation Quality of care Quality of life Self-management Background: Complex survivorship cancer care requires nurse-led interventions.Therefore, a nurse-led patient navigation intervention was developed in which trained cancer nurses gave advice and referred to other professionals during the process of recovery and rehabilitation of hematopoietic stem cell transplantation (HSCT) patients.Objective: The aim of this study was to understand the nature and effect of this nurse-led information and referral intervention. Methods: Of the 199 included patients in the intervention group, 75 completed the quality of life, quality of care, self-efficacy, and selfmanagement behavior questionnaires at baseline and at 6 and 12 months after HSCT. A historical control group of 62 patients completed the same questionnaires 12 months after HSCT. In addition, patients' experiences with the intervention were evaluated in 2 focus groups. Results: Patients emphasized the holistic approach of the cancer nurses and the opportunity to discuss psychosocial domains of life. Within the intervention group, a statistically significant effect on quality of life was demonstrated over time. The differences in quality of life, self-efficacy, and self-management were not significant between the intervention group and control group. Conclusion: The holistic focus of this nurse-led

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“…Complicating this, is that surveyed patients with hematologic malignancies have reported difficulty recalling information (28%), information overload (26%), insufficient opportunity for clarification (23%), and limited information about managing psychosocial symptoms (20%). 24 Yet, routinely providing this information effectively during an initial consultation can be challenging. Discussions of complex and emotionally laden issues, such as chance of cure or median life expectancy, are difficult and should take place over time.…”

Section: Discussionmentioning

confidence: 99%

Decisional involvement and information preferences of patients with hematologic malignancies

et al. 2020

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Understanding decisional involvement and information preferences in patients with hematologic malignancies may help to optimize physician-patient communication about treatment decisions and align the decision-making processes with patients’ preferences. We described and examined factors associated with preferences of patients with hematologic malignancies for decisional involvement, information sources, and presentation of information. In a multicenter observational study, we recruited 216 patients with hematologic malignancies of any stage from September 2003 to June 2007. Patients were asked about their decisional involvement preferences (Control Preferences Scale), information sources (including most useful source of information), and preferences for their oncologists’ presentation of treatment success information. We used multivariate logistic regressions to identify factors associated with decisional involvement preferences and usefulness of information sources (physicians vs nonphysicians). Patient-directed, shared, and physician-directed approaches were preferred in 34%, 38%, and 28% of patients, respectively. Physicians and computer/Internet were the most common information sources; 42% perceived physicians as the most useful source. On multivariate analysis, patients with less than a college education (vs postgraduate education) were less likely to perceive their physician as the most useful source (adjusted odds ratio [AOR], 0.46; 95% confidence interval (CI), 0.21-1.00), whereas patients with acute leukemia (vs other blood cancers) were more likely to perceive their physician as the most useful source (AOR, 2.49; 95% CI, 1.07-5.80). In terms of communicating treatment success rates, 70% preferred ≥1 method(s), and 88% preferred presentation in percentages. Our study suggests that decisional involvement and information preferences vary and should be assessed explicitly as part of each decision-making encounter.

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Do haematological cancer patients get the information they need about their cancer and its treatment? Results of a cross-sectional survey

Cited by 17 publications

References 38 publications

Incurable but treatable: Understanding, uncertainty and impact in chronic blood cancers—A qualitative study from the UK’s Haematological Malignancy Research Network

Incurable but treatable: Understanding, uncertainty and impact in chronic blood cancers—A qualitative study from the UK’s Haematological Malignancy Research Network

Evaluation of a Nurse-Led Patient Navigation Intervention

Decisional involvement and information preferences of patients with hematologic malignancies

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