1. Challenges of living with diabetes.

This section introduces five main challenges emphasized in the groups: reduced physical function, healthy lifestyle struggles, hypoglycaemia, sexual dysfunction and financial burden due to diabetes.

Physical function and fatigue were raised frequently by people with type 2 diabetes (PWD). Diabetes reduced physical function, which was accompanied by fatigue. For example, a 45 year old man reported that after his diabetes diagnosis he was: ‘(…) more tired in the afternoon’ (PWD, man, FG-3). Participants mentioned that feelings of fatigue affected their daily lives, limiting them in several respects, including performing home duties, engaging in physical activity and work productivity: ‘Walking, functioning, home duties and dishwashing [is hard] because sometimes diabetes is very exhausting’ (PWD, woman, FG-2).

Additionally, a PWD noted: ‘You are less productive at work (…). There are things that are hard for me because of the fatigue, so I need workers to help. [Other: Do you relate it to diabetes?] Of course’ (PWD, man, FG-3).

Several participants voiced a desire for a treatment to eliminate fatigue: ‘I want a medication or advice on how to behave to eliminate fatigue, at least’ (PWD, woman, FG-1). It is worthy to mention that some patients, mainly newly diagnosed individuals, wondered if fatigue was related to diabetes: ‘I suffer from fatigue, but I don’t relate it to diabetes. Now I am hearing from everybody that it could be; I’m very tired, I cannot walk for a long time, I feel fatigued (…) Now when I hear from others, maybe it is related to diabetes, I don’t know’ (PWD, man, FG-3).

Healthy lifestyle struggles. Leading a healthy lifestyle, especially regarding diet and physical activity, emerged as essential challenges for people with diabetes, who reported that they wanted and tried to achieve a healthy lifestyle, but it was difficult to achieve. Regarding diet, people with diabetes noted that they faced many restrictions, stating that they were limited in their food options and that maintaining a healthy diet was difficult, particularly for those working outside the home.

‘The diet is very difficult, it’s so hard. Glucose, salt or fat, or any of those things aren’t allowed. The biggest question is how to manage in life without eating anything, just vegetables all the time. And it’s hard because I am often outside the home’ (PWD, woman, FG-2).

Regarding physical activity, people with diabetes emphasized that fatigue (due to diabetes) and financial factors were barriers. One remarked: ‘If you engage in physical activity, even walking, it [glucose] decreases. I think it helps, but with the fatigue, it’s hard’ (PWD, man, FG-1).

Support from others, especially family, was raised as essential for achieving a healthy lifestyle (e.g., preparing healthy meals and encouraging physical activity). However, participants also found it challenging and annoying when others pressured them to eat unhealthy foods, especially in social meetings: ‘At parties it’s very hard. They know I’m diabetic and using insulin. It’s annoying when others pressure me to eat things that I should not’ (PWD, woman, FG-1).

Hypoglycaemia was described as a major problem. Participants shared their hypoglycaemic experiences and described the events: ‘I felt like a zombie; not connected to my surroundings. I almost lost consciousness many times, I had sweaty palms and felt severely weak’ (PWD, woman, FG-1).

Hypoglycaemic experiences were described as traumatic and participants feared experiencing them again: ‘My biggest problem (…) was that for four months I had severe hypoglycaemia every night. I woke up in the middle of night looking for something to eat, I walked while sleeping, and I fell many times (…) I don’t want to be hypoglycaemic again’ (PWD, man, FG-1).

Experts highlighted the importance of asking individuals about their fear of hypoglycaemia: ‘Fear of hypoglycaemic events is very important’ (Expert-E, diabetes nurse).

Sexual dysfunction due to diabetes was raised in the groups by both people with type 2 diabetes and experts. A PWD mentioned:

‘Diabetes negatively influences many things, I was in bad condition, I was depressed, and it affected my social life. Let’s be honest, when a person has a high glucose level, their life with their partner changes, it’s not a normal life. Maybe the person won’t talk about all this, but when I lowered my glucose level, it gave [me] more power and more enjoyment’ (PWD, man, FG-2).

The experts particularly mentioned asking individuals about sexual dysfunction, which is relevant for both sexes. And, they also noted that this issue usually does not arise during medical visits. One diabetes physicians remarked: ‘I want to ask [using a questionnaire], for example, about impotence, since we usually don’t ask, as it’s uncomfortable, since the patient is accompanied by a family member. And answering a questionnaire will be more comfortable for the patient’ (E, diabetes physician).

In addition to physical struggles, the financial burden associated with diabetes, primarily due to costs of medication, was evident from participants’ responses and appeared to be a barrier to treatment for some individuals. An elderly woman mentioned:

‘There’s a new medication that’s effective. But the packet costs 250 shekels [73 USD]. What about the low-paid workers or the elderly who live off of their pensions, how could they pay for that? They cannot’ (PWD, woman, FG-2).

In addition, gym fees and the loss of productivity at work increased financial burden. A man remarked: ‘You have to work out, it costs money. You’re less productive at work, that also costs money’ (PWD, man, FG-3). Additionally, a woman who experienced kidney failure said: ‘I need to go to the gym. But the gym costs money. In our neighbourhood, there are no suitable parks for walking’ (PWD, woman, FG-2).

2. Mental health issues.

Diabetes is a demanding chronic disease, affecting physical and mental health. Individuals with diabetes experience a variety of emotions and mental health issues, including depression, distress, anxiety, fear, frustration, and loneliness. Mental health was one of the most prominent issues emphasized by individuals and experts. One expert remarked: ‘The mental aspect is important. It’s important to ask not only about depression, but also fear, worry and anxiety’ (E, family physician). PWD suggested: ‘I think they [health plans] should employ a health-provider: a physician or a nurse to address the individual’s psychological issues’ (PWD, man, FG-3).

A diabetes diagnosis requires that individuals implement lifestyle modifications and restrictions, which may cause depression. For example, a newly diagnosed PWD reported: ‘Diabetes causes depression because suddenly you have to change your lifestyle completely. You have to think about what you put in your mouth, what you do, you need to sleep well without getting up to go to the bathroom several times’ (PWD, man, FG-3).

Another cause of depression PWDs mentioned was needing medications, especially among those needing multiple medications.

‘When going to the pharmacy, people feel as if they’ve been to the supermarket. You collapse immediately after carrying all the medications. You’ll be depressed just from the number of medications’ (PWD, man, FG-2).

Anxiety and fear over developing diabetes complications were the dominant mental health related aspects mentioned across all groups: ‘My father had diabetes and, at age 80, his leg was amputated. This led to many thoughts, to fear and anxiety’ (PWD, woman, FG-1). A newly diagnosed PWD related: ‘I read about diabetes and its complications; it scares me’ (PWD, man, FG-3).

Preventing complications was considered the most valuable outcome among participants. As one PWD mentioned: ‘I want to die healthy, I don’t want all these complications, I don’t want to experience these complications’ (PWD, man, FG-3).

The experts mentioned that mental health aspects typically do not arise during medical appointments, suggesting that health providers could use PROMs as a signalling system to help assess when and with whom they should address mental health issues. An expert remarked: ‘We need to add some questions [PROMs]concerning diabetes complications, since this is what we’re trying to prevent’ (E, diabetes physician).

3. Self-management ability.

A meaningful domain was the capacity of self-management, i.e., the ability to manage the lifestyle modifications inherent to living with diabetes, having symptoms and managing treatment. The person with diabetes is the cornerstone of the treatment process, as a PWD emphasized: ‘The treatment is in her own hands [the individual’s responsibility] and not in that of the physician’s (…) I was determined to reduce my glucose levels’ (PWD, man, FG-2). Diabetes physician mentioned: ‘Lack of treatment empowerment is one of the problems. Individuals should advance the success of their treatment’ (E, social worker).

People with diabetes make daily decisions regarding food, activity and medications. To make the right decisions, individuals need guidance from their health providers. Individual empowerment, being informed about one’s disease and treatment, stood out as essential for successful self-management. However, individuals complained that they did not receive enough information from their health providers: ‘There’s a lack of information. I have no idea what to do. I would like to comprehend the information and not only to receive instructions, to understand what I’m doing’ (PWD, woman, FG-2).

Lack of knowledge about the disease, especially among the newly diagnosed, caused confusion. To prevent confusion, participants preferred receiving relevant information from health providers rather than searching on the internet.

‘The problem is that, (…), I just don’t know! There is diabetes type 1 and type 2. I’ve read a lot, but I don’t know what is relevant to me and what is not. (…) Since there is lack of knowledge, the more I read, the more I’m [another participant: more worried, more scared], yes, more scared but also more confused’ (PWD, man, FG-3).

PWDs believed that raising awareness about diabetes and its treatment would increase compliance:‘Today, patients have many sources of information to read about diabetes. I think it could be problematic. If we have an informational or support group, we can learn about diabetes, and its complications. It could increase patient’s compliance (PWD, woman, FG-1).

4. Patient-clinician relationship.

The patient-clinician relationship was prominent in all the discussions and primarily reflected participant demands.

The devotion of clinicians was emphasized by the PWDs as a critical factor increasing their adherence: ‘I go to my check-up by him [the physician] after some time has passed and I know he’s devoted so much to my care. He wants to help me and then, what? I won’t listen to him? No, he’s helped me so much’ (PWD, man, FG-1).

Trust in clinicians and the treatment is a key component of the treatment process according to the experts. One diabetes physicians stated: ‘A very simple question I ask myself with every patient is, does the patient believe in me? Does the patient believe in the medications I give him? These are the two main questions’ (E, diabetes physician).

Another physician remarked: ‘The key question is: Does the patient believe in his treatment? It is highly important for diabetes care. It may not be so important for other diseases, such as cancer and multiple sclerosis, for which patients believe completely in their treatment. In diabetes, there is much less belief and patients want natural treatment’ (E, diabetes physician).

Indeed, PWDs stated that they do not trust antidiabetic medications and believe they are harmful and cause complications. As one PWD noted: ‘The pills are harmful, 40% of patients have kidney disease complications because of medications’ (PWD, man, FG-2). In another group, a newly diagnosed PWD reported: ‘I have read about medications that cause harm. Yes, they’re harmful in the long term. Maybe not in the short term, but if you take medications for years it’s not good’ (PWD, man, FG-3). One PWD summarized: ‘I think we need someone to guide patients who don’t want to take medications, maybe to go in a natural way, use alternative medicine. Why can’t the health plans suggest a solution for this? Or maybe they do, but we don’t know about it’ (PWD, woman, FG-1).

Shared decision-making was another demand that people with diabetes raised. They wanted an informative treatment plan and the option to choose another treatment plan if they do not accept the proposed treatment, medications, or diet.

‘I don’t want to be given a limited approach. What did the dietitian tell me? This is the diet that I give you and if you don’t (…) [accept], I have nothing more to say. Also, the physician said, Why are you coming to me if you don’t agree with the treatment?. There should also be an alternative (…) they should tell me, okay, there is A and there is B. There should be more than one option but that does not exist’ (PWD, man, FG-3).

Multidisciplinary care under one roof and during the same visit was a highly important factor among individuals with diabetes. They indicated that not having this could be a treatment barrier.

‘When it’s all under one roof and provided at the same time, it’s much more efficient (…) it’s easier. It’s not that today I’m going to a family physician or a diabetes physician and on Thursday I have to go to a dietitian’ (PWD, woman, FG-1).

Expert discussions revealed that health providers favour using PROMs in diabetes care and even acknowledged their necessity to improve the treatment process, particularly regarding sensitive issues such as mental state and sexual dysfunction. One of the experts summarized: ‘I think these measures [PROMs] are more important than some measures that we have today. I say this definitively, I would like to see more of these measures and less of the clinical measures’ (E, quality of care expert). However, many of the sub-domains that were raised by the people with type 2 diabetes were not mentioned in the experts’ panels. Table 1 presents the similarities and differences between perspectives of people with type 2 diabetes and healthcare providers. All the sub-domains that were raised by the healthcare providers were raised also by the people with type 2 diabetes.

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Table 1. Valuable aspects for type 2 diabetes; perspectives of people with type 2 diabetes and healthcare providers.

https://doi.org/10.1371/journal.pone.0277424.t001