On the third Thursday of every month, we speak to a recent graduate about their thesis and their studies. This month’s guest is Dr Laura Timmis who has a PhD from Bangor University. If you would like to suggest a candidate for an upcoming Thesis Thursday, get in touch.
Stakeholder perspectives on optimal follow-up care: an interdisciplinary economic and psychological investigation into gynaecological cancer
Rhiannon Tudor Edwards, Valerie Morrison
What are some of the key challenges in gynaecological cancer care?
My PhD focused on the follow-up care patients receive after treatment for gynaecological cancer. There is a lack of evidence regarding the efficacy of the traditional (regular appointments in secondary care) and alternative (for example, telephone appointments with a specialist nurse or self-management) models of care, resulting in a lack of guidance, clinical consensus, and a postcode lottery of care provision.
The key challenge in gynaecology cancer follow-up care is the development of an evidence-based risk stratified model of follow-up care. My PhD research demonstrated that this model needs to be transparent and personalised to individual needs, to improve patients’ biopsychosocial outcomes and the cost-effectiveness of care provision. A second key challenge is the communication of the efficacy of the current and alternative models of care so that patients can make informed decisions about the care they choose to consume.
How did you incorporate qualitative methods into your research?
Qualitative research methods were incorporated into each phase of my research: the systematic literature review; focus group and interview study; attribute generation comparison; and discrete choice experiment (DCE).
The systematic literature review identified and extracted qualitative and quantitative evidence. The focus group and interview study used both a top-down (nominal group ranking task) and bottom-up approach (open-ended questions) to incorporate both a health economic and health psychology approach to identifying preferences for care. The attributes generated from these and other methods were compared to identify whether the attributes identified were dependent on the methodology used to identify them. The attributes identified from both qualitative and quantitative methods were used to inform the DCE, and aid interpretation of the results.
What aspects of care are most important to people?
Within and between perspectives, patients, their informal caregivers, and health care professionals had both similar and different beliefs regarding the aim of gynaecology cancer follow-up care, and preferences of care to meet these needs.
Interestingly, different research methods identified different findings regarding the aspects of care that are most important to patients, their informal caregivers, and health care professionals.
The systematic literature review identified that patients’ preferences for care, to meet their need for reassurance in the follow-up period, differed. Patients placed differing values on hospital follow-up, specialist nurse-led telephone follow-up, general practitioner-led follow-up or self-management. Conversely, the systematic literature review demonstrated that health care professionals valued multidisciplinary models of care and the self-management model of care, given the need for a changing model of care. No studies of informal caregivers’ care preferences were identified.
The focus group and interview study of patients’ (n=17) and their informal caregivers’ (n=7) preferences for care, based on their experience of care, identified that follow-up was valued because of the reassurance it provided. For patients, reassurance was provided via ‘access to an expert’, ‘procedures’, and ‘holistic care’, but ‘system failures’ and a ‘low self-confidence’ prevented access to this reassurance. For informal caregivers, reassurance was provided by ‘person-centred information’, which was met through the provision of ‘person-centred access to care’.
The attributes generated from the systematic literature review, qualitative study, and other methods (a literature review; current practice; policy recommendations; informal discussion with health care professionals) were compared for the purpose of designing a DCE. The attributes identified were dependent on the methods used to identify them.
A discrete choice experiment identified that patients (n=77), their informal caregivers (n=26), and health care professionals (n=67) had different relative preferences for the attributes of follow-up care (personalised care, information received, medical examination, health care professional seen, frequency of appointments), and were prepared to make different trade-offs for the model of gynaecology cancer follow-up preferred.
How can diverse preferences be recognised in policy?
There is a policy focus on patient-centred health care, to meet the individual needs of patients and improve patients’ outcomes. Evidence suggests that patients have different illness representations, attitudes, beliefs, and experiences, contributing to their heterogeneous preferences. Within gynaecology cancer follow-up, diverse patient preferences can be recognised in policy together with the lack of evidence on the efficacy of different models of follow-up care.
This research recommends that health care professionals inform patients of the lack of efficacy for the traditional model of care (frequent hospital appointments for a clinical examination) compared to alternative models of care (for example telephone follow-up or self-management). This transparent communication can facilitate treatment discussions. Together with the conduct of individual needs assessments, this awareness can help to ensure patients make an informed decision regarding the care they and their informal caregivers choose to consume within the care available, to meet their needs in the follow-up period.
Did you experience challenges in conducting a truly interdisciplinary research study?
“A researcher’s background and position will affect what they choose to investigate, the angle of investigation, the methods judged most adequate for this purpose, the findings considered most appropriate, and the framing and communication of conclusions” (Malterud, 2001).
I have an undergraduate degree in psychology and a master’s degree in health psychology and have experience of working with different vulnerable populations in different roles. Because of my understanding of how experience influences preferences, it was important to take an interdisciplinary approach to what at the outset was a purely health economics research question. This ensured that the ‘why’ as well as the ‘what’ could be understood, making an increased contribution to policy and practice.
As has been reported previously in the literature, the biggest challenge I found was the reduction of in-depth patient and informal caregiver experiences, perspectives, and preferences into a few attributes and levels to be used in the discrete choice experiment. Iterative discussion with my supervisory team and clinical collaborators aided meaningful reduction into a list of attributes that reflected the attributes valued, as identified in the formative research.