Good glycaemic control is essential for individuals with diabetes to avoid the risk of developing microvascular and macrovascular complications [9]. However, evidence indicates that many people with T2DM discontinue treatment within 1 year of initiation [5]. The results of this questionnaire-based study confirm these findings among people with T2DM in the USA and UK. OADs were the most commonly reported treatment discontinued, which is in line with prescription data that shows metformin to be the most commonly prescribed first-line antidiabetic treatment and sulfonylureas the most commonly prescribed second-line antidiabetic treatment [10].
Reasons for T2DM treatment discontinuation identified in the literature include perceived treatment efficacy, fear of hypoglycaemia, the complexity and burden of treatment regimens and inconvenience associated with treatment, cost, and lack of diabetes knowledge [5]. Other studies assessing individual preference in the treatment of T2DM typically did not fully explore the real reasons for discontinuation but focused on preferences overall through discrete-choice experiments (DCE) [11,12,13,14,15]. Indeed, DCE offer multiple hypothetical medication profiles for people to choose between that can differ by treatment aspects (including number of pills, oral vs injectable therapy, costs, etc.), treatment satisfaction or barriers to intensification [11,12,13,14,15]. The current study allowed participants to share their own response for reasons they perceived to be important specifically for improving adherence and persistence with their therapy on the basis of their experience.
Results from the present study confirm the results from previous literature [5]. Side effects, primarily gastrointestinal disorders, weight gain, and hypoglycaemia, were the main reasons overall for treatment discontinuation among the respondents of this study (35%), indicating a need for well-tolerated treatments. About one-quarter of respondents participating in this study also reported drug efficacy issues as a cause of stopping treatment, of which no perceived positive effect was the most common reason in these respondents. However, it is important to consider that for some therapies, such as insulin, the perceived lack of efficacy may be a consequence of suboptimal titration due to patient and physician concerns such as weight gain, fear of hypoglycaemia, multiple daily injections, complexity of therapy or therapeutic burden [16, 17]. Indeed, results of an online survey in the USA, France and Germany showed that 32–42% of individuals with diabetes receiving basal insulin therapy were unaware of the need to titrate their insulin and 74% of physicians reported fear of hypoglycaemia as a barrier to optimal titration [16]. It is important to note that another one-fifth of respondents reported that they had discontinued treatment as their disease was now under control. For various chronic conditions, a correlation has been observed between treatment adherence and perceived need (including whether an individual regarded a medication necessary, helpful, wanted, or right for them, whether they understood the drug or illness, or their condition sufficiently improved), corroborating this finding [18].
Cost was highlighted as a reason for discontinuation by 16% of US respondents, compared with only 4% of UK respondents, which could be attributed to the direct out-of-pocket costs for individuals in the USA [19] compared with costs being covered by the National Health Service in the UK [20]. In people with T2DM who discontinue or do not properly adhere to their therapy, there is an increased risk of microvascular and macrovascular complications [7], which can in turn increase healthcare costs further [5, 6]. Therefore, affordable therapies have the potential to reduce current and future costs of living with diabetes.
In this study, the most frequently reported reason for initiating the discontinued therapy was at the guidance of the treating physician. Coupled with an improvement in the care pathway (including more information from the doctor) being reported as a key factor for preventing discontinuation in both countries, this emphasises the need for focused education and improved communication between the physician and the patient to enhance treatment understanding and experience. Current guidelines in the USA and UK stress the importance of structured and individualised education [21, 22] and European Association for the Study of Diabetes/American Diabetes Association guidelines state the importance of shared decision-making [8, 23]. However, our results indicate that, despite these guidelines, individuals still perceived a need for improved care pathways and may benefit from additional information and support. Without proper communication on the rationale behind initiating therapies and shared decision-making, individuals with diabetes may not fully understand the implications of discontinuing their therapy or may be receiving therapies that they consider to be unsuitable for them, potentially making discontinuation of the treatment more likely.
While 40% of respondents reported that no information would have prevented them from discontinuing treatment, it is important to note that a third of respondents reported that medical information would have improved their experience and 15% said they would have liked support, stressing the importance of adequate and appropriate patient engagement. Given the number of respondents who reported initiating therapy because it was prescribed by their doctor (43%) and not due to underlying causes, it is possible that respondents had too little information to understand why the new therapy was initiated and what should be evaluated to stop discontinuation. As such, they reported that no information would have prevented them from discontinuing treatment. Discontinuation for these participants might also have been due to burden of disease or complexity of currently available diabetes therapies. An improvement in treatment, including fewer side effects and increased efficacy, would have helped prevent treatment discontinuation in a quarter of respondents, highlighting that individualised treatment that fits the needs of each person is important among those with T2DM.
Participants in this study were recruited from a patient social platform, which has several benefits. Firstly, patients in social networks are generally more willing to share their experiences and feel free to express themselves anonymously and confidentially without their HCP’s involvement, which has been shown to limit social desirability bias [24]. Secondly, such networks provide an opportunity to collect patient-reported outcomes that complement and add value to clinical data while empowering people and putting them at the centre of their own care. The use of patient platforms, however, limits the researcher’s ability to include individuals who do not have access to the online tool and thus may lead to a potential recruitment bias [24]. This study captured patient-reported outcomes with no access to the participants’ medical records, so it could not be confirmed whether reasons given for discontinuation were accurate (i.e. whether respondents reached glycaemic control or if the HCP had prescribed a decrease or change to their prescription). Another limitation of this study was that data were collected from a survey with a relatively small sample size. Additionally, data analyses were descriptive and variables such as education and income were not captured.
On the basis of the results of our survey, there is an opportunity to further communicate specifically on side effects and drug efficacy issues. Patient–HCP discussions before treatment initiation may help people with T2DM to better understand their options and allow for individualisation of therapy, as recommended by the American Diabetes Association/European Association for the Study of Diabetes guidelines [8, 23]. This may lead to better patient experience, reported outcomes, and adherence. There is a wealth of patient education materials available to HCPs to help facilitate engagement with their patients.