Development of a Unique Person-Centred Self-Management Behaviour Scale for People on Haemodialysis

Patient engagement in health and managing treatment and life workload is especially important for haemodialysis patients, who experience increased depression and anxiety, reduced QoL associated with treatment, co-morbidities and frailty that is linked with ageing but also illness. Engagement optimises care, quality of life and wellbeing, as well as having potential benefit for patient-staff relationships and communication. Engagement in self-management is narrowly defined and poorly assessed in the clinical care of people with kidney disease. The aim of this thesis is to understand how self-management is conceptualised and measured in the research literature and to what extent it should be reconceptualised. Then, to broaden and improve on existing measures by developing a more holistic measure of self-management to better assess current engagement and support needs. A mixed methods approach involving a community of experts and people with lived experience will help ensure content validity. The long-term aim is to direct support where it is needed to facilitate engagement in self-management to the extent to which the individual wishes, enabling them to live well. People with chronic kidney disease who progress to kidney failure, must undertake kidney replacement therapy (KRT) as a matter of survival. Whilst kidney transplantation is the best form of KRT, and linked with better outcomes, often people transition to a means of dialysis (peritoneal or haemodialysis). With this comes a regime of regular treatment and for the in-centre haemodialysis patient, approximately 624 hours a year on dialysis. This requires a person to adapt and manage life alongside illness. Self-management is a contested concept, and the kidney community have been slow to define and operationalise it in a way meaningful for people with kidney disease. Given the magnitude and frequency of clinical intervention, self-management is often thought about in terms of needling, salt and fluid reduction and home haemodialysis (as the optimum option), with a focus on clinical outcomes and adherence. However, managing a chronic illness and addressing the emotional consequences of the long-term impact, requires an individual to continue living a meaningful life (Whittemore & Dixon, 2008) plan and prioritise daily tasks, adapt and develop coping strategies (Subramanian et al., 2017) and maintain social support networks whilst continuing to function in a variety of social roles and situations (Liu et al., 2018; Song et al., 2019). This broader concept of self-management is referred to as a tripartite model incorporating the clinical (biological), social and emotional and has its origins in the work by Corbin & Strauss (1985). In chapters 2 and 3 the gaps in the conceptualisation of self-management in chronic disease and kidney care specifically, are established. Despite being a distinct term, self-management is related and often conflated with other concepts such as self-efficacy, self-care (Richard & Shea, 2011), shared care (Moser et al., 2008), adherence (Evangelista & Shinnick, 2008) or patient activation, a component of SM (Hibbard et al., 2007). Existing measures of self-management developed for people with CKD are critiqued and fall short of the tripartite definition offered in the literature. The chapters that follow describe the development and validation of a novel measure of self-management using best practice principals for scale development (as described in chapter 4). Chapter 5 further explores the patient experience of daily managing, beyond the dialysis chair using narrative from 27 people receiving haemodialysis. In conjunction with the literature review, this empirical data, provided the basis from which themes and candidate items that were developed. In this way, unique to other self-management scales, a more person-centred, holistic approach to defining the concept and developing a measurement, was taken. Social support, emotional managing, communication with healthcare providers, maintaining a meaningful life and the impact of co-morbidity were all themes that guided item development which was iterative and began with the consensus workshop. Chapter 6 provides an overview of item development before turning to the scale development process in more depth. Here reliability and validity of the scale is explored, enabled through the collection of data from a large survey of haemodialysis patients. Documented methodological rigour and good model statistics as well as strong correlation with two other similar constructs, depression, and self-efficacy, together suggests the Patient Reported Instrument of Engagement in Self-Management (PRIESM CKD-HD), is a good measure of the concept of self-management. Exploratory factor analysis (EFA) indicated a best-fit three-dimensional model, managing day-to-day, communication and clinical care. In chapter 7, the use of an overall self-management score and domain scores (daily managing, communication, and clinical care) are explored. Variation in scores is evident between patient sub-groups and this provides further evidence of the validity and reliability of the scale. Statistically significant differences according to key characteristics such as age, income, education and ESKD alongside other long-term conditions were found. Patient reported outcome measures are widely developed but often not implemented in clinical practice. Understanding how the scale may work in the real world is an important step in scale development, often not undertaken. Chapter 8 describes the exploratory pre-implementation work that was conducted with key stakeholders including patients and members of the multidisciplinary team beyond doctors and nurses. Assessing psychosocial support needs, alongside more clinical needs was broadly supported but barriers as well as facilitators to implementation of the PRIESM CKD-HD (or indeed any patient reported outcome measure), were identified. Broadening the definition of self-management to behaviours relating to the emotional, physical, psychological, and social burdens of managing may be more important to those on haemodialysis. A move away from the narrow definition of medical management may provide an insight into how gaps in support can be identified and addressed to improve person-valued outcomes such as quality of life and well-being, as well adherence, and associated clinical outcomes. The hope is that the scale can be used to guide conversations and target support. PRIESM CKD-HD is the first measure to have been developed with kidney professionals, those with lived experience, and methodologists using diverse methods to maximise validity and reliability which can help redress the social and emotional balance necessary for engagement in self-management. Chapter 9 gives an overview of how the development of this scale has confronted the complexity and uncertainties around the operationalisation of the term self-management and what the next steps may look like.