Identifying disease-specific distress in adults with venous leg ulcers

Identifying disease-specific distress in adults with venous leg ulcersJane O’Brien, RN, Lecturer 1Christina N Parker (PhD) RN, Associate Professor 2,3 Kathleen Finlayson (PhD) RN, Lecturer 2,3Julia Hindmarsh RN, Research Assistant 2,31 College of Health and Medicine, School of NursingUniversity of TasmaniaNewnham, TAS, 7250, Australia2 Faculty of Health, School of Nursing Queensland University of Technology Victoria Park Rd, Kelvin Grove, QLD 4059 Australia 3 Centre for Healthcare Transformation Queensland University of Technology Victoria Park Rd, Kelvin Grove, QLD 4059 Australia Objectives Distress is the experience of feeling overwhelmed by the demands of living with and managing a chronic disease such as VLUs1. This is different to depression/anxiety in that distress is focussed on emotional response to the disease experience (i.e., the need for people with VLUs to attend clinics, the need to organise transport and the associated costs, while often feeling tired and overwhelmed). The aim of the study was to identify the presence of VLU distress to inform the development of a scale for assessing this phenomenon.MethodsThis three-phase study used: (1) a conceptual framework based on chronic disease distress to conduct a secondary analysis of qualitative data from three previous VLU studies (n = 12 transcripts). Themes were identified from secondary analysis as causing distress; which then guided (2) one focus group and two individual interviews of people with VLUs or who had had VLUs (n = 5); and (3) items generated from phases one and two were subsequently used in a modified delphi survey of health professionals caring for people with VLUs to confirm the distress items.ResultsFive VLU-distress themes were identified: emotional distress; healthcare-related distress; interpersonal/social distress; treatment-related distress; and symptom-related distress.ConclusionsDisease-specific distress in VLU was identified and is distinct from anxiety and depression. Some causes of VLU distress overlap with diabetes and Inflammatory Bowel Disease (IBD) distress, but existing diabetes/IBD-distress scales do not explain all the distress experienced by people with VLU and development of a new VLU-distress scale is warranted.References1 Dibley, L., Czuber-Dochan, W., Woodward, S., Wade, T., Bassett, P., Sturt, J., & Norton, C. (2018). Development and Psychometric Properties of the Inflammatory Bowel Disease Distress Scale (IBD-DS): A New Tool to Measure Disease-Specific Distress. Inflammatory bowel diseases. doi:10.1093/ibd/izy108