Chronic kidney disease: Patient information needs, preferences and priorities
, PhD thesis, University of Salford.
This thesis seeks to explore, identify and describe the information needs and the preferences and priorities for information of chronic kidney disease (CKD) patients. The premise of the research being that CKD patients will have preferred key information needs, which are of a priority to them, at different times during the progression of their disease.
Attention will focus on three areas:
• The theory and methodology underpinning information need research in health and information science, exploring key concepts to establish working definitions
• What information patients’ want and the contextual factors that influence the manifestation of an information need
• The development and testing of a CKD Information Needs Questionnaire (INQ) that profiles and prioritises information topics to facilitate, demographic and disease progression sub-group analysis
Chapters one and two, set the scene and focus of the study, identifying the context of CKD, aetiology, prevalence, current NHS policy and service provision building a clear study rationale. The national political agenda advocates the need to develop patient-led services alongside encouraging self-management skills for CKD patients to meet the future demands on renal services. For this to be achieved understanding the information needs of CKD patients is important.
Chapters three to six, consider the theory and methodology underpinning existing research in the field of information need, drawing on expertise from both Information Science and Health. The meaning of information and information need are explored and the contextual factors that influence the need for information extrapolated. Existing evidence on information topics important to CKD patients are drawn from a systematic literature review. The study adopts a mixed method approach combining qualitative in-depth semi-structured interviews and a paired comparison INQ to identify, understand and measure information need.
The study findings are presented sequentially in chapter’s seven to nine. The first two chapters scrutinise the qualitative data to elicit core information needs and explore the context in which information needs arise. Information topics from the literature are compared and contrasted with data extracted from the in-depth interviews and nine core information needs identified. These include information on what is CKD and what to expect in the future; physical affect and symptoms of CKD; complications and side effects; different treatment options, practical aspects of treatment; self-management information regarding diet, fluids, medication and blood results; impact of CKD on daily life and social activities; information on how to cope and adapt with CKD and information from other patients about their experiences. Findings indicate that CKD patients have preferences for information that emerge to satisfy an underlying goal. Information needs are hierarchical in nature and influenced by the context of the individual, factors include the relevance of topic, personal circumstances, coping styles, current events and lifestyle.
The core information needs were used to ground the development of the INQ, followed by the testing of the tool and subsequent statistical analysis, in chapter nine. The information topics considered highest priority are concerned with information about self-management, complications and physical symptoms. Middle range items included information regarding practical aspects of RRT, how it affects daily life, the cause of CKD, treatment options. Information topics considered less important were how to cope and adapt to life with CKD and information from other patients about their experiences. Differences between information priorities were observed across demographic groups influenced by age, treatment modality and time since diagnosis.
Chapter ten draws together the evidence and discusses the findings in context with the wider literature highlighting the strengths and weaknesses of the research strategy. An innovative patient-led information strategy is proposed based on the construction of meaning and making sense of information, alongside practical changes to improve the quality of information provision to meet the needs of CKD patients.
Chapter eleven concludes the study and denotes recommendations for future information need research, information provision in practice and policy. These include the application of the nine core information needs (as a topic guide) in clinical practice to initiate patient discussion and draw out specific individual information need. The evidence base developed from this in-depth study will inform and support the current and future content of patient education programmes. Developing healthcare documentation that records the preferences and priorities for information of a CKD patient as they emerge and captures the patient’s temporal goals of information, information purpose and the influencing contextual factors, is essential to effectively communicate patient information needs within the multi-professional team. Finally the introduction of a patient-led information service is recommended that would facilitate and encourage self-management skills and effective information provision in clinical practice. Such a proactive approach implemented from diagnosis throughout the disease trajectory would meet the continuous information needs of CKD patients.
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