“Along for the Ride”: A Qualitative Study Exploring Patient and Caregiver Perceptions of Decision Making in Cancer Care

Background. Shared decision making is a cornerstone of an informed consent process for cancer treatment, yet there are often many physician and patient-related barriers to participation in the process. Decisions in cancer care are often perceived as relating to a discrete, treatment decision event, yet there is evidence that decisions are longitudinal in nature and reflect a multifactorial experience. Objective. To explore patient and caregiver perceptions of the choices and decision-making opportunities within cancer care. Design. Qualitative in-depth interviews with 37 cancer patients and 7 caregivers carried out as part of an evaluation of a cancer center’s effort to improve patient experience. Results. Participants described decision making related to four distinct phases in complex cancer care, with physicians leading, and often limiting, decisions related to disease assessment and treatment options and access, and patients leading decisions related to physician selection. Though physicians led many decisions, patients had a moderating influence on treatment, such that if patients did not like options presented, they would reconsider their options and sometimes switch physicians. Patients had various strategies for dealing with uncertainty when faced with decisions, such as seeking additional information to make an informed choice or making a conscious choice to defer decision making to the physician. Limitations. Patients were sampled from one academic cancer center that serves a predominantly Caucasian, Asian, and Hispanic/Latino population and received complex treatment. Conclusion. Because of the complexity of cancer treatment, many patients felt as though they were a “passenger” in decision making about care and did not lead many of the decisions, though many patients trusted their doctors to make the best decisions and were comforted by their expertise.

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Bridging the divide: the adjustment and decision-making experiences of people with dementia living with a recent diagnosis of cancer and its impact on family carers

Ageing and Society ◽

10.1017/s0144686x18001411 ◽

2018 ◽

Vol 40 (5) ◽

pp. 944-965 ◽

Cited By ~ 3

Author(s):

Lorna McWilliams ◽

Caroline Swarbrick ◽

Janelle Yorke ◽

Lorraine Burgess ◽

Carole Farrell ◽

...

Keyword(s):

Decision Making ◽

Cancer Treatment ◽

Treatment Options ◽

Treatment Decision ◽

Vital Role ◽

Family Carers ◽

Structured Interviews ◽

Cancer Symptoms ◽

People With Dementia ◽

Diagnosis Of Cancer

AbstractThe risk of living with dementia and, separately, cancer, increases exponentially with age. However, to date, there is a paucity of research investigating the experiences of people living with both these conditions. This study used semi-structured interviews to explore the decision-making and treatment options for people who live with both dementia and cancer. In total, ten people living with both dementia and cancer (aged 39–93 years) and nine family carers were interviewed. Braun and Clarke's approach to thematic analysis was used together with framework matrices to organise the data. In this article four sequential and descriptive themes are presented. ‘Reaching a diagnosis of cancer’ describes the vital role that family carers play in encouraging the person with dementia to seek an explanation for their presenting (undiagnosed cancer) symptoms to their general practitioner. ‘Adjusting to the cancer diagnosis when living with dementia’ outlines a variety of emotional and practical responses to receiving news of the diagnosis. ‘Weighing up the cancer treatment options’ highlights the different decisions and circumstances that family carers and people living with both dementia and cancer are faced with post-diagnosis. ‘Undergoing cancer treatment’ shares the finding that cancer treatment decision-making was not straightforward and that people living with both dementia and cancer would often forget about their cancer and what procedures they had been through.

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Results from a focus group evaluating TrialTALK, a designed conversation to facilitate cancer treatment shared decision making.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.31_suppl.34 ◽

2019 ◽

Vol 37 (31_suppl) ◽

pp. 34-34

Author(s):

Toby Christopher Campbell ◽

Erin Kennedy ◽

Selina Schmocker

Keyword(s):

Clinical Trial ◽

Decision Making ◽

Focus Group ◽

Cancer Treatment ◽

Shared Decision Making ◽

Information Needs ◽

Treatment Options ◽

Treatment Decision ◽

Shared Decision ◽

Treatment Decision Making

34 Background: Cancer treatment decision making involves timely, high-risk, shared decision-making conversations between patients, their families, and their oncologists. These conversations are a prime target for a carefully designed, easy to interpret approach to facilitate preference-sensitive decision-making. The TrialTALK approach has two core elements: a verbal approach and a pen & paper diagram. The diagram includes the diagnosis with prognostic implications, available treatment options along with estimates for efficacy and anticipated impact on daily life. The verbal conversation corresponds to the diagram and includes a phrase to encourage deliberation and empathic responses. Here, we report the results of a focus group conducted in Toronto comparing two approaches to a cancer decision making conversation. Methods: Our focus group was comprised of 9 patients, all with incurable malignancy. They observed a live reading of an actual transcript of a cancer treatment decision making conversation between a patient and oncologist who presented three options: observation, chemotherapy, and a clinical trial. The investigators re-organized the conversation, reusing as many words as possible, into the TrialTALK framework. No new information was introduced. After watching each scene, participants discussed and rated the conversation for information needs and indicated the decision. Results: Three (33%) said rated the standard conversation as meeting their informational needs while 7/9 (78%) reported needs were met by the designed approach. Decision making preferences following the conversations are shown in the table. Patients reported feeling the physician in the designed conversation was more prepared; they felt greater trust and confidence; they valued the paper diagram; they felt more empowered and engaged in the decision. Conclusions: A designed conversation may improve patient understanding, influence decision making, while also enhancing the patient-physician relationship. Clinical trial information: NCT03656276. [Table: see text]

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The Oxford Handbook of Impulse Control Disorders

10.1093/oxfordhb/9780195389715.001.0001 ◽

2012 ◽

Cited By ~ 10

Keyword(s):

Decision Making ◽

Impulse Control ◽

Treatment Options ◽

Impulse Control Disorders ◽

Clear Understanding ◽

Intermittent Explosive Disorder ◽

Normal Behavior ◽

Assessment And Treatment ◽

Decision Making Processes ◽

Psychopathological Disorders

Impulsivity, to varying degrees, is what underlies human behavior and decision-making processes. As such, a thorough examination of impulsivity allows us to better understand modes of normal behavior and action as well as a range of related psychopathological disorders, including kleptomania, pyromania, trichotillomania, intermittent explosive disorder, and pathological gambling—disorders grouped under the term "impulse control disorders" (ISDs). Recent efforts in the areas of cognitive psychology, neurobiology, and genetics have provided a greater understanding of these behaviors and given way to improved treatment options. The Oxford Handbook of Impulse Control Disorders provides a clear understanding of the developmental, biological, and phenomenological features of a range of ICDs, as well as detailed approaches to their assessment and treatment. Bringing together founding ICD researchers and leading experts from psychology and psychiatry, this volume reviews the biological underpinnings of impulsivity and the conceptual challenges facing clinicians as they treat individuals with ICDs.

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Variation in reported experience of involvement in cancer treatment decision making: evidence from the National Cancer Patient Experience Survey

British Journal of Cancer ◽

10.1038/bjc.2013.316 ◽

2013 ◽

Vol 109 (3) ◽

pp. 780-787 ◽

Cited By ~ 30

Author(s):

A El Turabi ◽

G A Abel ◽

M Roland ◽

G Lyratzopoulos

Keyword(s):

Decision Making ◽

Cancer Patient ◽

Cancer Treatment ◽

Patient Experience ◽

Treatment Decision ◽

Treatment Decision Making ◽

Experience Survey

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The Significance of Patient-Reported Outcomes for Metastatic Breast Cancer Patients

Oncology Research and Treatment ◽

10.1159/000521826 ◽

2022 ◽

Author(s):

Larissa Elisabeth Hillebrand ◽

Ulrike Söling ◽

Norbert Marschner

Keyword(s):

Breast Cancer ◽

Decision Making ◽

Metastatic Breast Cancer ◽

Cancer Treatment ◽

Patient Reported Outcomes ◽

Metastatic Breast ◽

Treatment Decision ◽

Breast Cancer Patients ◽

Treatment Decision Making ◽

Patient Reported

Background: Breast cancer is still the most common malignancy in women worldwide. Once metastasized, breast cancer treatment primarily aims at reducing symptom burden, thereby trying to maintain and improve a patient´s quality of life (QoL), delaying disease progression, and prolonging survival. Curing the disease is not possible in the palliative setting. To better understand metastatic breast cancer patients, their symptoms and wishes, which are important for treatment-decision making and outcome, patient-reported outcomes (PROs) are of great importance, giving an impression of what really matters to and concerns a patient. Summary: Many advances have been made to implicate PROs in clinical trials, non-interventional studies, registries, and clinical routine care of metastatic breast cancer. For example, large phase III trials like PALOMA-3 (NCT01942135), MONALEESA-7 (NCT02278120), HER2CLIMB (NCT02614794), and KEYNOTE-119 (NCT02555657) trials implemented PROs in their trial design to assess the QoL of their trial patients. Also, non-interventional studies on metastatic breast cancer, like e.g., the NABUCCO study (IOM-02240), and prospective non-interventional, multicenter registries e.g., the tumor registry breast cancer (NCT01351584) or the breast cancer registry platform OPAL (NCT03417115), have implemented PROs to assess QoL during the anti-cancer treatment periods of the patients. Key Message: Using PROs in metastatic breast cancer can support shared treatment-decision making and management of symptoms, eventually leading to an improvement in QoL. Progressively, regulatory authorities take PROs into consideration for the approval of new drugs. Hence, the implication of PROs in cancer treatment, and especially in MBC, is of significant value.

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