Abstract
Background and aims: Over the past two decades, there has been a significant increase in the number of patients diagnosed with localised kidney cancer. While surgery has been the standard treatment in clinically fit patients, less invasive treatments like ablation and active surveillance are now also available. This PhD, therefore, aims to understand the multifactorial process of decision-making, providing an understanding of the support patients require in the treatment decision- making process using a six-stage approach.Methods: This applied thesis uses a mixed methods multi-stage design with an emergent approach. To improve the objectivity and structure of the work, the theoretical framework of Glatzer et al. was used, which comprises three domains of decision-making: disease- specific characteristics, decision-maker specific factors, and contextual factors. As a result, the methodological plan of this PhD contains the following six steps.
1. Systematic literature review to understand the patient experience during treatment- decision making.
2. Mixed methods systematic review to understand barriers and facilitators to treatment decision-making overall.
3. Cross-sectional study to understand whether the experiences of patients during the COVID-19 pandemic impacted any of the data gathered in 1) and 2) (i.e., contextual factor).
4. Systematic review on heterogeneity in outcome definition and reporting to provide a deeper understanding of the diversity of outcomes used in clinical guidelines.
5. Synthesis of step 1-4 to develop a qualitative semi-structured interview guide.
6. Semi-structured interviews and focus groups to pilot the discussion guide and to improve the understanding of decision-maker related factors from a patient perspective and their supportive care needs across Europe.
Results: The first systematic literature review identified the limited evidence looking at patient decision-making as I identified only five studies. Currently most of the literature focuses on decision-making from a Health Care Professional (HCP)’s view. Hence, this work was extended with a mixed methods systematic review which identified further barriers and facilitators to treatment decision-making across the three domains (kidney cancer specific characteristics, decision maker related factors, and contextual factors): prognostic factors, patient demographics, predictive tools, patient-physician interaction, infrastructure, access to the healthcare system, and economic variables.
These two reviews were further enriched with the cross-sectional survey evaluating COVID- 19 as a contextual factor. Thirty-six HCPs from the UK responded, and five main themes emerged: diagnostics, treatment, consultations and supportive care, HCP satisfaction, and delivery of future kidney cancer care. The COVID-19 pandemic was found to have a significant impact on the practice and perspective of HCPs working in kidney cancer in the NHS during the first six months of the outbreak.
To explore and understand the language used in kidney cancer diagnostics and the potential impact on decision-making, a systematic review on outcome reporting heterogeneity identified multiple terms used to refer to similar outcomes and variations in definitions of staging. To enable a deeper insight into the findings from the previous stages, a preliminary semi- structured interview guide was formulated. Finally, to test the developed discussion guide and develop a codebook enabling a robust analysis, three focus groups and four interviews on decision-maker-related factors with patients across Germany, the UK, and the Netherlands were conducted. The most prominent themes discussed were shared decision- making, supportive care, and patient empowerment. Participants also highlighted important facilitators for the decision-making process: access to charities, support groups, peer support, Cancer Nurse Specialist and psycho-oncology support, a shared decision-making environment, and digital and non-digital information tools.
Conclusion: The combined findings of this six-step approach offer insights into the treatment decision-making process in localised kidney cancer. It was found that patients are keen to actively participate in this decision-making process, but factors, such as changes in the way clinicians and patients engage in consultations as a result of the COVID-19 pandemic, make this challenging. Moreover, the emotional toll of the cancer journey and the current heterogeneity of outcome reporting in clinical guidelines require consideration. The findings from this PhD thesis can thus be used to further develop research focused on establishing appropriate shared decision-making tools and supportive care measures.
| Date of Award | 1 Oct 2023 |
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| Original language | English |
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| Supervisor | Netty Kinsella (Supervisor), Mieke Van Hemelrijck (Supervisor) & Ravi Barod (Supervisor) |