Article
Experiences of hypoglycaemia unawareness amongst people with Type 1 diabetes: A qualitative investigation
Chronic Illness 2014, Vol. 10(3) 180–191 ! The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1742395313513911 chi.sagepub.com
D Rankin,1 J Elliott,2 S Heller,2 S Amiel,3 H Rogers,3 N DeZoysa3 and J Lawton1
Abstract Objectives: To explore the experiences of people who have hypoglycaemia unawareness and its impact on their everyday lives. Methods: In-depth interviews with 38 people with Type 1 diabetes who have hypoglycaemia unawareness. Data analysis used an inductive, thematic approach. Results: Participants reported imposed and self-imposed changes to their lives following onset of hypoglycaemia unawareness including: leaving employment, curtailing pastimes and spending more time at home or being supervised by others. However, some reported getting on with life by downplaying the significance and impact of their condition, which could put their health and safety at risk. Many relied on frequent self-monitoring of blood glucose and/or prompting from others to detect hypoglycaemia. Some expressed concerns about becoming a burden on family and/or responding in irrational and aggressive ways to others’ suggestions to test for and treat hypoglycaemia. Participants reported responding best to composed and directive prompts from family. Health professionals mainly advised on clinical aspects, and did not enquire about the emotional and psychosocial impact of hypoglycaemia unawareness. Discussion: Hypoglycaemia unawareness can have a profound impact on people’s confidence, careers and personal relationships. Healthcare professionals should pay more attention during consultations to the emotional and social aspects of living with hypoglycaemia unawareness.
Keywords Type 1 diabetes, hypoglycaemia, hypoglycaemia unawareness, patient experiences, qualitative research 3 Diabetes Research Offices, Weston Education Centre, King’s College London, London, UK
1
Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK 2 Academic Unit of Diabetes, Endocrinology and Metabolism, University of Sheffield, Sheffield, UK
Corresponding author: D Rankin, Centre for Population Health Sciences, Medical School, University of Edinburgh, Edinburgh EH8 9AG, UK. Email: [email protected]
Downloaded from chi.sagepub.com at UCSF LIBRARY & CKM on February 26, 2015
Rankin et al.
181
Received 19 August 2013; accepted 1 November 2013
Introduction Type 1 diabetes is a common chronic disease which often arises in childhood or adolescence. While the exact causes are unknown, the condition results from the destruction of insulin-producing pancreatic beta cells which regulate an individual’s blood glucose levels. Hence people with Type 1 diabetes need to adjust and control their blood glucose levels themselves by taking insulin, and they normally titrate doses according to their blood glucose levels (determined by self-monitoring of blood glucose, food intake and physical activity).1 Hypoglycaemia is the most common side effect of insulin treatment2 and occurs when blood glucose levels drop below 3.6– 3.8 mmol/L. Clinically, hypoglycaemia is defined by whether people are able to selfadminister treatment; hence, episodes which can be self-treated are termed ‘mild’ whereas ‘severe’ hypoglycaemia requires external assistance.3,4 Hypoglycaemia is normally accompanied by autonomic symptoms (e.g. sweating, palpitations, hunger) and neuroglycopenic features (e.g. confusion, altered emotion, loss of temper).5 An individual’s awareness of these premonitory signs and symptoms is critical to avoiding progression to severe hypoglycaemia.6 However, people with Type 1 diabetes commonly develop difficulties detecting these symptoms over time – a condition termed hypoglycaemia unawareness.7 Awareness of hypoglycaemia is often variable but a degree of unawareness affects approximately 25% of people with Type 1 diabetes and this proportion rises to almost 50% amongst those diagnosed over 20 years.8,9 Loss of awareness carries a threeto six-fold increase in risk of severe hypoglycaemia8,10 and severe episodes can result in loss of consciousness, seizure and coma.11 Hypoglycaemia unawareness is now recognised as being a major clinical problem
and several studies have been undertaken to explore the mechanisms underlying its development7,12,13 while others have shown that symptom awareness can be restored in research settings through strict avoidance of hypoglycaemia and with intensive clinical support 14–16 Despite its significant clinical impact, only one study has focused on people who have impaired awareness of hypoglycaemia; specifically, on their perceptions of their condition.17 This study employed qualitative methods to explore psychological factors that might inhibit individuals’ efforts to avoid hypoglycaemia and used the findings to inform development of an assessment tool for clinical practice to identify unhelpful health beliefs about hypoglycaemia unawareness.17 As limited qualitative research has been undertaken with people with impaired awareness of hypoglycaemia to date, we conducted an interview study to understand and explore: people’s experiences of having hypoglycaemia unawareness and its impact on their everyday lives; their attempts to address living with the condition; and, their experiences of, and views about, accessing and implementing advice from health professionals. Our objectives were to develop a better understanding of people’s lived experiences of hypoglycaemia unawareness and inform recommendations for how people with the condition could be better supported to live with and manage the impact of their unawareness of hypoglycaemia on their everyday lives.
Methods A qualitative design was used, comprising in-depth interviews with people who had hypoglycaemia unawareness. This exploratory design enabled participants’ own understandings and experiences to be
Downloaded from chi.sagepub.com at UCSF LIBRARY & CKM on February 26, 2015
182
Chronic Illness 10(3)
explored in-depth and afforded the flexibility needed for them to raise issues they perceived as salient, including those not anticipated at the study’s outset.18
Sample and recruitment Thirty-eight people with Type 1 diabetes were recruited from two UK diabetes centres as part of a broader study concerned with hypoglycaemia unawareness.19 Participants were identified from clinical records using eligibility criteria, including: Gold Score > 4 (this is a visual analogue scale with ‘1’ being always aware of hypoglycaemia and ‘7’ being never aware. A score > 4 indicates impaired awareness of hypoglycaemia);20 problematic hypoglycaemia unawareness, defined as having three or more episodes of blood glucose levels
Experiences of hypoglycaemia unawareness amongst people with Type 1 diabetes: A qualitative investigation
Chronic Illness 2014, Vol. 10(3) 180–191 ! The Author(s) 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/1742395313513911 chi.sagepub.com
D Rankin,1 J Elliott,2 S Heller,2 S Amiel,3 H Rogers,3 N DeZoysa3 and J Lawton1
Abstract Objectives: To explore the experiences of people who have hypoglycaemia unawareness and its impact on their everyday lives. Methods: In-depth interviews with 38 people with Type 1 diabetes who have hypoglycaemia unawareness. Data analysis used an inductive, thematic approach. Results: Participants reported imposed and self-imposed changes to their lives following onset of hypoglycaemia unawareness including: leaving employment, curtailing pastimes and spending more time at home or being supervised by others. However, some reported getting on with life by downplaying the significance and impact of their condition, which could put their health and safety at risk. Many relied on frequent self-monitoring of blood glucose and/or prompting from others to detect hypoglycaemia. Some expressed concerns about becoming a burden on family and/or responding in irrational and aggressive ways to others’ suggestions to test for and treat hypoglycaemia. Participants reported responding best to composed and directive prompts from family. Health professionals mainly advised on clinical aspects, and did not enquire about the emotional and psychosocial impact of hypoglycaemia unawareness. Discussion: Hypoglycaemia unawareness can have a profound impact on people’s confidence, careers and personal relationships. Healthcare professionals should pay more attention during consultations to the emotional and social aspects of living with hypoglycaemia unawareness.
Keywords Type 1 diabetes, hypoglycaemia, hypoglycaemia unawareness, patient experiences, qualitative research 3 Diabetes Research Offices, Weston Education Centre, King’s College London, London, UK
1
Centre for Population Health Sciences, University of Edinburgh, Edinburgh, UK 2 Academic Unit of Diabetes, Endocrinology and Metabolism, University of Sheffield, Sheffield, UK
Corresponding author: D Rankin, Centre for Population Health Sciences, Medical School, University of Edinburgh, Edinburgh EH8 9AG, UK. Email: [email protected]
Downloaded from chi.sagepub.com at UCSF LIBRARY & CKM on February 26, 2015
Rankin et al.
181
Received 19 August 2013; accepted 1 November 2013
Introduction Type 1 diabetes is a common chronic disease which often arises in childhood or adolescence. While the exact causes are unknown, the condition results from the destruction of insulin-producing pancreatic beta cells which regulate an individual’s blood glucose levels. Hence people with Type 1 diabetes need to adjust and control their blood glucose levels themselves by taking insulin, and they normally titrate doses according to their blood glucose levels (determined by self-monitoring of blood glucose, food intake and physical activity).1 Hypoglycaemia is the most common side effect of insulin treatment2 and occurs when blood glucose levels drop below 3.6– 3.8 mmol/L. Clinically, hypoglycaemia is defined by whether people are able to selfadminister treatment; hence, episodes which can be self-treated are termed ‘mild’ whereas ‘severe’ hypoglycaemia requires external assistance.3,4 Hypoglycaemia is normally accompanied by autonomic symptoms (e.g. sweating, palpitations, hunger) and neuroglycopenic features (e.g. confusion, altered emotion, loss of temper).5 An individual’s awareness of these premonitory signs and symptoms is critical to avoiding progression to severe hypoglycaemia.6 However, people with Type 1 diabetes commonly develop difficulties detecting these symptoms over time – a condition termed hypoglycaemia unawareness.7 Awareness of hypoglycaemia is often variable but a degree of unawareness affects approximately 25% of people with Type 1 diabetes and this proportion rises to almost 50% amongst those diagnosed over 20 years.8,9 Loss of awareness carries a threeto six-fold increase in risk of severe hypoglycaemia8,10 and severe episodes can result in loss of consciousness, seizure and coma.11 Hypoglycaemia unawareness is now recognised as being a major clinical problem
and several studies have been undertaken to explore the mechanisms underlying its development7,12,13 while others have shown that symptom awareness can be restored in research settings through strict avoidance of hypoglycaemia and with intensive clinical support 14–16 Despite its significant clinical impact, only one study has focused on people who have impaired awareness of hypoglycaemia; specifically, on their perceptions of their condition.17 This study employed qualitative methods to explore psychological factors that might inhibit individuals’ efforts to avoid hypoglycaemia and used the findings to inform development of an assessment tool for clinical practice to identify unhelpful health beliefs about hypoglycaemia unawareness.17 As limited qualitative research has been undertaken with people with impaired awareness of hypoglycaemia to date, we conducted an interview study to understand and explore: people’s experiences of having hypoglycaemia unawareness and its impact on their everyday lives; their attempts to address living with the condition; and, their experiences of, and views about, accessing and implementing advice from health professionals. Our objectives were to develop a better understanding of people’s lived experiences of hypoglycaemia unawareness and inform recommendations for how people with the condition could be better supported to live with and manage the impact of their unawareness of hypoglycaemia on their everyday lives.
Methods A qualitative design was used, comprising in-depth interviews with people who had hypoglycaemia unawareness. This exploratory design enabled participants’ own understandings and experiences to be
Downloaded from chi.sagepub.com at UCSF LIBRARY & CKM on February 26, 2015
182
Chronic Illness 10(3)
explored in-depth and afforded the flexibility needed for them to raise issues they perceived as salient, including those not anticipated at the study’s outset.18
Sample and recruitment Thirty-eight people with Type 1 diabetes were recruited from two UK diabetes centres as part of a broader study concerned with hypoglycaemia unawareness.19 Participants were identified from clinical records using eligibility criteria, including: Gold Score > 4 (this is a visual analogue scale with ‘1’ being always aware of hypoglycaemia and ‘7’ being never aware. A score > 4 indicates impaired awareness of hypoglycaemia);20 problematic hypoglycaemia unawareness, defined as having three or more episodes of blood glucose levels
