gms | German Medical Science

Project description: Making important decisions in life can be challenging. We often put a lot of effort into making the “right” choice when deciding on things like whether or not to apply for a new job, which holiday to book, or which car to buy. Interestingly, many of us do not invest the same amount of time and energy when deciding on our healthcare. Patients commonly feel overwhelmed by the plethora and complexity of information provided by their doctors. This can impact on their ability to comprehend and weigh-up the pros and cons of the options available to them.

High-quality, patient-centred care involves that patients understand their condition and comprehend what each healthcare option available to them involves. Patient-centred care ensures that patients are involved in their healthcare decisions, to the extent they desire, and that care aligns with patients’ needs and preferences. Patient engagement in healthcare decision making is particularly relevant for cancer patients who often have to choose between various treatment options. Many cancer patients are confronted with an array of information on the potential benefits and risks of their treatment options, and have to face a high degree of uncertainty regarding the potential treatment outcomes. At the same time, cancer patients have to cope with the distress and anxiety related to their cancer diagnosis. Although decision support strategies have been developed to help cancer patients make difficult treatment decisions, they are not commonly used in clinical practice. Little is known about the social processes that underlie decision making between patients, their support persons and their clinicians. This PhD project helps fill this gap. It examines cancer patients’ preferences for and experiences with making treatment decisions. The findings of this project make an important contribution to increasing our understanding of how treatment decision making could be improved in clinical practice.

First, this PhD thesis summarizes the evidence base on patient-centred decision making and its relevance to cancer care in Australia and worldwide. It then reports on the findings of two quantitative and one qualitative study involving more than 600 cancer patients and their support persons who were recruited from medical and radiation oncology waiting rooms of treatment centres across New South Wales and Victoria, Australia.

These studies aimed to:

1.

Explore in-depth how cancer patients made a difficult treatment decision, and how this process can be assisted by a decision aid which has been designed to guide patients towards making decisions that align with their preferences;

2.

Examine cancer patients’ and their support persons’ preferences for different characteristics of oncology consultations; and

3.

Review the literature on decision aids to provide an understanding of where research effort has been directed to over time, and where the focus of future studies should lie.

Methodologically robust and innovative approaches were employed to collect and analyse data from heterogeneous samples of Australian cancer patients and their support persons. The findings suggest that patient-centred decision making is not always delivered to cancer patients. Clinicians should consider asking patients about their preferences for involvement in decision making and offer two shorter consultations combined with written and online information, rather than one longer consultation and written information only, when making cancer treatment decisions. This consultation style may facilitate the implementation of decision support strategies, such as decision aids, to assist patients with understanding their treatment options and participate in the decision-making process. The results of this body of work also suggest that process-orientated measures may help improve assessment of patient decision making. Overall, the thesis findings provide an important step towards the delivery of optimal patient-centred cancer care. Future research should employ methodologically rigorous intervention studies to investigate the impact of different consultation styles on patient outcomes.