Knowledge, Perceptions and Concerns of Diabetes-Associated Complications among Individuals Living with Type 1 and Type 2 Diabetes Mellitus

The purpose of this study was to investigate the knowledge, perceptions and concerns of individuals living with diabetes mellitus regarding the disorder and its associated long-term health complications. Individuals living with type 1 (N = 110) and type 2 (N = 100) diabetes were surveyed at the Diabetes Centre at University Hospital Galway (Ireland). A questionnaire was used to record respondent’s perceptions and concerns about living with diabetes and developing associated long-term health complications, especially diabetes-induced osteopathy. Participants’ responses revealed a variety of perspectives. Individuals with type 1 diabetes had a deeper understanding of the aetiology of diabetes and were more concerned about its complications than individuals with type 2 diabetes. The most recognized complications identified by the participants were retinopathy (92% type 1; 83% type 2), amputations (80% type 1; 70% type 2) and nephropathy (83% type 1; 63% type 2). Diabetes-related osteopathy was under-recognized, with 37% (type 1) and 23% (type 2) of respondents identifying bone fractures as a diabetes-related complication. Enhancing the patient awareness of this under-recognized diabetes-associated complication and ensuring that preventative measures are incorporated within health care programmes may offer methodologies to address this complication clinically.

Participants were asked to define and/or give phrases associated with diabetes in an open-ended question. Following is a selection of example responses for each category.

Responses from individuals with type 1 diabetes
• Definition of diabetes included words such as 'pancreas' and 'insulin' (74.5%): 'When the pancreas stops producing the hormone insulin' (#13, man, 20 yrs.). 'Deficiency at the pancreas to produce insulin to enable energy release' (#39, woman, 35 yrs.). 'Diabetes is a consequence of your body not being able to produce insulin; as a result, insulin has to be given via injections' (#70, man, 40 yrs.).
• Definition of diabetes included technical words such as 'beta cells', 'Islets of Langerhans', 'autoimmune', 'immune reaction', 'immune attack' (11%): 'A T-cell autoimmune condition which inappropriately attacks beta cells of the pancreas' (#47, man, 30 yrs.). 'An autoimmune disease where the immune system attacks the pancreas (Islets of Langerhans) and no insulin is produced […]' (#66, woman, 54 yrs.). 'Type 1 diabetes is where the immune system attacks betta cells of the pancreas and results in the pancreas being unable to produce insulin. Insulin injections are essential for life' (#111, woman, 55 yrs. • Diabetes definition included both type 1 and type 2 diabetes (3.6%): 'In type 1 diabetes the pancreas no longer produces insulin; in type 2 diabetes the body cannot utilize insulin effectively' (#80, man, 44 yrs.). 'An inability to use insulin (type 2 diabetes), or an inability to make insulin (type 1 diabetes)' (#144, woman, 27 yrs.).
• Definition of diabetes included health complications of diabetes (1.8%), however no specific complications were named: 'Type 1 diabetes is a lack of insulin production resulting in need for injections to maintain sugar balance and a cause of further complications and health issues' (#14, man, 44 yrs.). 'If you don't look after your diabetes you will get complications' (#73, man, 43 yrs.).
• Diabetes is defined as having no disadvantages and/or concerns (0%). No responses of this type were found.
• Definition of diabetes included words such as 'disease', 'condition', 'chronic disease', 'disorder', 'illness' (4%): 'A chronic disease connected with the levels of sugar in blood' (#12, man, 71 yrs.). 'It is a condition when your pancreas fails to produce enough insulin to process sugars and carbohydrates in your blood resulting in increased blood sugar levels' (#72, woman, 50 yrs.).
• Diabetes is defined as a challenge and/or it is associated with negative thoughts (17%): 'It's a pain, I can't eat nice things' (#40, woman, 71 yrs. • Definition of diabetes include health complications of diabetes such as damage of 'kidney', 'eyes', 'foot ulcers', 'amputations' and 'limbs' (7%): 'High blood sugar levels, frequent urination, thirst, complications from diabetes such as kidney, eye damage and foot ulcers' (#45, man, 55 yrs.). 'It is a disease to do with sugar levels and blood, and it affects feet, eyes, heart and other organs as well' (#97, man, 76 yrs.). '[…] it affects blood circulation and causes loss of limbs and eyesight' (#16, man, 67 yrs.).

Supplementary S3: Multivariate linear regression models.
Multivariate linear regression analysis of participant's level of concern with age, years since diagnosis, gender and level of education.

Supplementary S4: Participants' understanding about diabetes-related osteopathy
Participants were then asked to describe in an open-ended question how they thought diabetes could impact their bone health. Following is a selection of example responses for each category.

Responses from individuals with type 1 diabetes:
From the 110 respondents living with type 1 diabetes, a total of 19 (17.3%) participants left this question unanswered. Interestingly, a significantly higher percentage of participants with type 1 diabetes (34.5%) were unsure or unaware of the link between diabetes and bone health: 'To be honest, I was not aware until today that diabetes can have an impact on bone health' (#36, man, 38 yrs. Many participants gave well-structured and scientific answers to how their bone health could be affected by the onset of diabetes. Participants' answers were grouped into 5 main categories. When participants mentioned two different mechanisms of diabetes affecting bone health in the same answer, the counts were included in the different categories independently (4.5% overlapping responses).
• Increased healing times and/or decreased bone strength (27.3%): 'Diabetics have a lower healing power, so a fracture may take longer to heal' (#65, woman, 47 yrs.). 'From what I have read, diabetics commonly have weaker bones and are prone to bone fractures, which would surely result in a lengthy healing time' (#21, man, 25 yrs.).
• Weakened immune system and higher risk of infections (8.2%): 'Diabetes is linked to having a weakened immune system, which may result in inability and/or increased duration required to heal bone fractures' (#43, man, 36 yrs.). 'Your immune system might be weakened preventing your ability to heal well, or it may give rise to further infections around the fracture. Also, if you have excess weight, pressure on fracture might increase healing period' (#74, woman, 32 yrs.).
• Poor circulation (4.5%): 'Complications of diabetes can cause poor circulation, therefore sending less blood to tissue around a wound or a fracture can cause healing to become slower than normal and possible result also in higher infection risk' (#51, man, 38 yrs.). 'Maybe the blood circulation around the bones is too high in sugars leading to unhealthy bone' (#31, woman, 44 yrs.).
• Vitamin D (4.5%): 'Not having enough vitamin D or calcium to protect your bones' (#78, man, 58 yrs.). 'Diabetes can inhibit absorption of vitamin D, which is needed for bone health and bone healing. Diabetes can slow healing of all injuries due to sugar fluctuations' (#111, woman, 55 yrs.). 'I was not aware of the link between bone health per se and diabetes, however, I am aware of vitamin D deficiencies in diabetes is more pronounced, and the role of vitamin D in regulating the immune responses' (#112, woman, 44 yrs.).