Aims

The aim of this study was to identify the information topics that should be addressed according to the parents of children with developmental dysplasia of the hip (DDH) in the diagnostic and treatment phase during the first year of life. Second, we explored parental recommendations to further optimize the information provision in DDH care.

Background. Knee replacement surgery is currently facing three dilemmas: a high dissatisfaction rate; increasing demand with financial constraints; and variation in utilisation. A patient centred approach, usually achieved through shared decision-making, has the potential to help address these dilemmas. However, such an approach requires an understanding of the factors involved in patient decision-making. This is the first study examining decision-making in knee replacements that includes patients at different stages of decision-making – this is critical when considering decision-making as a process. We base our findings in a theoretical model, proposed by Elwyn et al, that highlights the distinction between deliberation and decision-making, and propose modifications to this model specific to knee replacement decision-making. Methods. This study used two focus groups of six patients each and in-depth interviews with 10 patients to examine the factors that affect patient decision-making and their interaction at different points in the decision-making process. A qualitative analysis of themes, based on a constant comparative method, is used to analyse the data. This study was approved by the Dyfed Powys Research Ethics Committee (13/WA/0140). Results. We describe 10 themes that affect patient deliberation over the decision: decision-making style; coping strategies; expectation of outcome; decision-making stress; personal situation; preferred model of care; trust in doctor; sources of information; mental state; and loss of control. We add to Elwyn's model by demonstrating the boundary between deliberation and decision-making is the decision-making threshold. Conclusion. This study provides increased detail on a theoretical model that can be used to describe decision-making, and an understanding of the factors that affect decision-making for patients considering knee replacement. Such an understanding will aid patient centred care, and has particular relevance in developing interventions aimed at delivering information. This is likely to affect the satisfaction rate, demand, and utilisation of knee replacements. Level of evidence. 4