PEPS: Patient experiences of pancreatic cystic lesion surveillance

Abstract

Pancreatic cystic lesions (PCLs) are considered a premalignant condition to pancreatic cancer with varying degrees of cancerous potential. Management for individuals who do not require surgical treatment involves imaging surveillance to assess for cancerous progression. Due to the increasing prevalence of diagnostic imaging and screening the number of individuals living with PCL surveillance is growing. The impact of individuals living with a PCL diagnosis and surveillance has not previously been explored. This research comprises three phases to identify the experiences, information, and support needs of the PCL surveillance population and inform future interventions that improve patient experience. The phases include a qualitative literature review of patient experience of surveillance for premalignant and low risk cancer, a mixed-methods review of interventions to improve experience during surveillance of conditions with the potential for cancer progression and qualitative semi-structured interview study with PCL patients under surveillance. Both literature reviews were comprehensively undertaken using systematic approach and methods, using interpretative thematic analysis (qualitative review) and the pillar-integration process (mixed-methods review). 27 semi-structured qualitative interviews were conducted using topic guides developed by conceptual framework and findings from the prior reviews. Interviews were analysed using reflexive thematic analysis. Findings from the three phases are used to inform elements of a suitable intervention for the PCL population. A journey to PCL diagnosis is complex and multifaceted. A PCL diagnosis is unexpected and for some, the ignition to a disruptive experience. The significance of the diagnosis’ anatomical location and the negative perception of pancreatic diseases led to fears that were also influenced by personal experiences of pancreatic cancer and explanations from clinicians. A lack of understanding of the diagnosis and its meaning to their future led to an overarching theme of uncertainty for the PCL population. Surveillance for PCL could be seen as a reminder of fears of PCL and cancer, or as an opportunity for reassurance. This thesis demonstrates several barriers to individuals with PCLs receiving the personalised and patient-centred care they desire, influenced by organisational design. For the first time, the work presented demonstrates how there is a lack of standardisation within and between institutions for management and care for this population, leading to varied information and support provision. Communication of information and explanations at diagnosis are influential in how individuals make sense of the unexpected diagnosis, the prognostic uncertainty and lack of information. The PCL population require clear information about the diagnosis and the impact it may have on an individual’s life at the right time (diagnosis), using appropriate terminology, signposting to further information and support can reduce uncertainty and fears associated with the PCL diagnosis. The findings from the work in this thesis have been aligned using a person-based approach to identify the components and guiding principles of an information resource intervention have been outlined in the integration chapter. Further work is now required to evaluate the acceptability and feasibility of the proposed intervention.

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Identifiers

ORCID for Ruth Reeve: orcid.org/0000-0002-7132-9642

ORCID for Lucy Brindle: orcid.org/0000-0002-8933-3754

ORCID for Claire Foster: orcid.org/0000-0002-4703-8378

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