What matters to patients? A mixed method study of the importance and consideration of oncology patient demands

Background: A patient-centred approach is increasingly the mandate for healthcare delivery, especially with the growing emergence of chronic conditions. A relevant but often overlooked obstacle to delivering person-centred care is the identification and consideration of all demands based on individual experience, not only disease-based requirements. Mindful of this approach, there is a need to explore how patient demands are expressed and considered in healthcare delivery systems. This study aims to: (i) understand how different types of demands expressed by patients are taken into account in the current delivery systems operated by Health Care Organisations (HCOs); (ii) explore the often overlooked content of specific non-clinical demands (i.e. demands related to interactions between disease treatments and everyday life). Method: We adopted a mixed method in two cancer centres, representing exemplary cases of organisational transformation: (i) circulation of a questionnaire to assess the importance that breast cancer patients attach to every clinical (C) and non-clinical (NC) demand identified in an exploratory inquiry, and the extent to which each demand has been taken into account based on individual experiences; (ii) a qualitative analysis based on semi-structured interviews exploring the content of specific NC demands. Results: Further to the way in which the questionnaires were answered (573 answers/680 questionnaires printed) and the semi-structured interviews (36) with cancer patients, results show that NC demands are deemed by patients to be almost as important as C demands (C = 6.53/7 VS. NC = 6.13), but are perceived to be considered to a lesser extent in terms of pathway management (NC = 4.02 VS C = 5.65), with a significant variation depending on the type of non-clinical demands expressed. Five types of NC demands can be identified: demands relating to daily life, alternative medicine, structure of the treatment pathway, administrative and logistic assistance and demands relating to new technologies. Conclusions: This study shows that HCOs should be able to consider non-clinical demands in addition to those referring to clinical needs. These demands require revision of the healthcare professionals’ mandate and transition from a supply-orientated system towards a demand-driven approach throughout the care pathway. Other sectors have developed hospitality management, mass customisation and personalisation to scale up approaches that could serve as inspiring examples.