“I live with it...I have no Plan B, only a Plan A”: Psychosocial Impact and Quality of Life in the Stroke Population with Dysphagia

Abstract

Stroke is one of the leading causes of acquired disability across the world today, with the number of people living with stroke-related disability continuing to grow. Accordingly, international stroke care clinical guidelines are increasingly recognising the importance of considering psychosocial wellbeing and quality of life in this clinical population. Difficulty with swallowing, known as dysphagia, is one of the most common physical consequences a person may experience following stroke. Despite this, our understanding of the impact of dysphagia on quality of life in this population remains significantly under-developed. As a result, speech and language therapists are likely to find this clinical area challenging, and the care provided to these persons may not always be person-centred, holistic and complete. This thesis ultimately aims to improve the quality of care provided to this clinical group. This was achieved by focusing on three key areas. Firstly, two qualitative studies exploring both the experiences of persons living with dysphagia during stroke rehabilitation and the experiences of persons living with long-term swallowing difficulties following stroke, were completed. The complex and wide-ranging impact of dysphagia is demonstrated. Furthermore, the need for ongoing and regular speech and language therapy input throughout the stroke journey is highlighted. Secondly, a mixed methods approach was used to explore current speech and language therapy clinical practice when addressing psychosocial wellbeing and quality of life in persons with dysphagia following stroke. Using both an international survey study and an international focus group, significant variations and inconsistencies in clinical practice are highlighted. Moreover, an appreciation for the complexity faced by speech and language therapists when working in this clinical area is developed. Finally, considering the significant difficulties in the clinical assessment process reported by the speech and language therapy participants, and the shortcomings in service delivery reported by people with dysphagia following stroke, a scoping review identified the patient-reported outcome measures that are commonly being used in dysphagia clinical trials following stroke. A subsequent qualitative analysis of the two identified tools - the SWAL-QOL and the EAT-10 - demonstrated significant limitations in their use in the stroke population. Thus, the lack of an appropriate clinical tool for use in the assessment of quality of life in dysphagia following stroke is highlighted. A subsequent integration of the findings of these studies results in a number of recommendations for both clinical practice and future research priorities. Assessment and consideration of psychosocial wellbeing and quality of life should become routine practice for speech and language therapists when working with persons with dysphagia following stroke. Ongoing research exploring the experiences of persons with dysphagia following stroke is required, and quality of life should be included as part of a core outcome set for dysphagia clinical trials in the stroke population. The development of a stroke-specific quality of life assessment tool will be an important requirement in achieving these objectives.