“I wish they could be in my shoes”: patients’ insights into tertiary health care for type 2 diabetes mellitus

Abstract

Jacqueline D Cotugno,1 Maree Ferguson,1,2 Hazel Harden,3 Shoni Colquist,3 Annabelle A Stack,1 Jane I Zimmerman,4 Anthony W Russell,4,5 Lauren E Ball,6 Ingrid J Hickman1,71Department of Nutrition and Dietetics, Princess Alexandra Hospital, 2School of Human Movement and Nutrition Sciences, The University of Queensland, 3INNIS Partnership, Brisbane, 4Department of Diabetes & Endocrinology, Princess Alexandra Hospital, 5School of Medicine, University of Queensland, 6Menzies Health Institute Queensland, Griffith University, 7The Mater Research Institute, The University of Queensland, Brisbane, QLD, AustraliaBackground: Insightful accounts of patient experience within a health care system can be valuable for facilitating improvements in service delivery.Objective: The aim of this study was to explore patients’ perceptions and experiences regarding a tertiary hospital Diabetes and Endocrinology outpatient service for the management of type 2 diabetes mellitus (T2DM).Method: Nine patients participated in discovery interviews with an independent trained facilitator. Patients’ stories were synthesized thematically using a constant comparative approach.Results: Three major themes were identified from the patients’ stories: 1) understanding T2DM and diabetes management with subthemes highlighting that specialist care is highly valued by patients who experience a significant burden of diabetes on daily life and who may have low health literacy and low self confidence; 2) relationships with practitioners were viewed critical and perceived lack of empathy impacted the effectiveness of care; and 3) impact of health care systems on service delivery with lack of continuity of care relating to the tertiary hospital model and limitations with appointment bookings negatively impacting on patient experience.Discussion: The patients’ stories suggest that the expectation of establishing a productive, ongoing relationship with practitioners is highly valued. Tertiary clinics for T2DM are well placed to incorporate novel technological approaches for monitoring and follow-up, which may overcome many of the perceived barriers of traditional service delivery.Conclusion: Investing in strategies that promote patient–practitioner relationships may enhance effectiveness of treatment for T2DM by meeting patient expectations of personalized care. Future changes in service delivery would benefit from incorporating patients as key stakeholders in service evaluation.Keywords: diabetes mellitus, discovery interview, health care, personal narratives