Odyssey of hope: a physician’s guide to communicating with brain tumor patients across the continuum of care

Rosenblum, Mark L.; Kalkanis, Steven N.; Goldberg, Wendy G.; Rock, Jack; Mikkelsen, Tom; Remer, Sandra; Whitehouse, Sarah; Nerenz, David R.

doi:10.1007/s11060-009-9828-1

Cited by 38 publications

(60 citation statements)

References 23 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…It has been likened to a state of cognitive confusion conveying the sense of panic that manifests when one's coping mechanisms are overwhelmed [11,15,16]. There is extreme anxiety and uncertainty [17,18].…”

Section: Communicating the Diagnosismentioning

confidence: 99%

“…There is extreme anxiety and uncertainty [17,18]. Patients seek understanding and information and they describe a need for hope balanced with reality and support [9,11,17,[19][20][21]. Studies show there are lower levels of anxiety in those patients who receive and comprehend appropriate information at the time of diagnosis [12,22].…”

Section: Communicating the Diagnosismentioning

confidence: 99%

“…This delicate dynamic has been addressed in the literature and, while there has been no proven ideal method for delivery of a malignant glioma diagnosis, certain underlying themes have been discussed [7,24]. The physician should set aside adequate time, focus and energy to prevent a rushed or disinterested appearance and should conduct a thorough review of the patient's history and imaging prior to meeting with the patient [11]. Information must be provided in a way that respects the capacity of the patient and their family to ensure they internalize and understand the information being conveyed without feeling overwhelmed [7,11,17,18,24,25].…”

Section: Communicating the Diagnosismentioning

confidence: 99%

“…Fortunately, there has been a recent uptrend in groups investigating these topics and with it increasing data to suggest that patients harbor a variety of unmet needs (Fig. 2) [6][7][8][9][10][11]. Treating patients within a multidisciplinary brain tumor center can help reduce unmet needs by improving communication, preserving hope, managing crises and providing continuous, comprehensive patient care along with symptom management.…”

Section: Introductionmentioning

confidence: 99%

See 3 more Smart Citations

Through the patient’s eyes: the value of a comprehensive brain tumor center

et al. 2014

Self Cite

View full text Add to dashboard Cite

Since the founding of the Tumor Section of the American Association of Neurological Surgeons (AANS) and the Congress of Neurological Surgeons (CNS) in 1984 much in neurosurgical oncology has changed. More than 40,000 papers have been published on glioma since the arrival of the AANS/CNS Tumor Section. Increasingly, research is focusing on more patient-centered care and quality of life. Preliminary work suggests that a greater emphasis on the patient and caregiver's experience of disease is crucial. Also, the provision of hope and appropriate information and communication with health care providers helps to lessen anxiety and promote improved quality of life. Lastly, our patients need a mechanism for continued symptom control and psychosocial support throughout their experience of this disease. An excellent venue for providing these facets of neurooncological patient care is the multidisciplinary brain tumor board and symptom management team. Herein, we present the philosophy and practice of the Hermelin Brain Tumor Center at the Henry Ford Health System as one type of approach to caring for the patient with a malignant glioma. The authors are aware of several brain tumor centers that share our philosophy and approach to patient care. Our comments are not meant to be exclusive to our experience and should be interpreted as representative of the growing movement in neurosurgery to provide comprehensive, multidisciplinary, patient-centered care.

show abstract

Section: Communicating the Diagnosismentioning

confidence: 99%

Section: Communicating the Diagnosismentioning

confidence: 99%

Section: Communicating the Diagnosismentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Through the patient’s eyes: the value of a comprehensive brain tumor center

et al. 2014

Self Cite

View full text Add to dashboard Cite

show abstract

“…Past studies focused on patients with malignant brain tumours [1][2][3][4][5][6][7]. Unfortunately, an estimated 186,678 nonmalignant brain or central nervous system tumours are newly diagnosed worldwide each year [8][9][10].…”

Section: Introductionmentioning

confidence: 99%

A qualitative assessment of the supportive care and resource needs of patients undergoing craniotomy for benign brain tumours

Wong

Mendelsohn

Nyhof-Young

et al. 2010

Support Care Cancer

View full text Add to dashboard Cite

Patients' supportive care needs are temporally dependent on disease course and treatment, and modifiable by demographic and psychosocial factors. Findings of this study show that patients with benign tumours lacked but needed many supportive care resources currently available to cancer patients. Many of the potential solutions to this current gap in supportive care involve extending support resources already available for cancer patients to patients with benign brain tumours. We thus suggest recommendations to improve service gaps and reduce disparities in supportive care for patients with benign brain tumours.

show abstract

Feeling known and informed: Serial qualitative interviews evaluating a consultation support intervention for patients with high‐grade glioma

et al. 2023

View full text Add to dashboard Cite

Objective: Interventions to support patients' engagement in shared decision making (SDM) are lacking within high-grade glioma (HGG) healthcare. Consultation Planning, Recording and Summarising (CPRS) has shown evidence of increasing patient decision self-efficacy, reducing uncertainty, and regret of decisions. This is the first study of CPRS within a HGG population and delivered over serial medical consultations.Method: A one-arm prospective qualitative longitudinal design was used to evaluate the CPRS intervention and evaluated with participants at sequential clinic appointments depending on their care, in Edinburgh, Scotland. We report on serial semi structured interviews of 16 patients and their partners.Results: Consultation planning before the consultation supported patients to feel known by strengthening the patient voice within the consultation. It prepared patients to actively participate in the consultation, despite the distressing nature of the content. Recording and summarising supported patients to understand their situation. The provision of a consultation record enabled accurate recall, a paced uptake of information and supported the family to feel fully informed. Ultimately, patients understood why decisions were being made rather than being part of making decisions. Conclusions:The CPRS intervention helped patients to understand and to feel known by increasing patient capacity for communication in the consultation, with support before, during, and after the consultation. The intervention focused on preparing patients for SDM but patients did not perceive that they had meaningful choices to make. Further research could look at the inclusion of patient decision aids to support this process.

show abstract

Odyssey of hope: a physician’s guide to communicating with brain tumor patients across the continuum of care

Cited by 38 publications

References 23 publications

Through the patient’s eyes: the value of a comprehensive brain tumor center

Through the patient’s eyes: the value of a comprehensive brain tumor center

A qualitative assessment of the supportive care and resource needs of patients undergoing craniotomy for benign brain tumours

Feeling known and informed: Serial qualitative interviews evaluating a consultation support intervention for patients with high‐grade glioma

Contact Info

Product

Resources

About