Challenges identified by middle-aged persons with multimorbidity.

General consequences of multimorbidity. Participants described a number of health-related consequences of living with their chronic diseases. These included, for example, direct symptoms of their specific diseases, as well as drug-related side effects and interactions (e.g., diarrhea, lack of concentration, weight gain, urinary retention, and gastrointestinal problems).

More than half the participants said that suffering from multiple chronic diseases led to psychological stress, e.g., related to accepting their diseases and the resulting consequences, such as limited mobility or uncertainties concerning family planning:

“Whether to dare to go through pregnancy was a big topic for me, especially because of my scoliosis. […]. And would it even be possible, or would it put too much strain on my spine etc. […] and you’re afraid when you have [a disease]: Have I passed on the genes to my children or not?” (P04f)

In addition, while some patients were embarrassed that their diseases were visible to outsiders, others were pleased that their diseases were not easily recognizable:

“It’s often not taken seriously, is it? Because you don’t often recognize it in people, no matter what chronic illness they have.” (P05f)

Participants also spoke of feelings of shame and stigmatization as a result of their diseases:

“…I use three different insulins a day, and in the beginning, for example, I was ashamed to take a [insulin] shot in public because it was kind of–yes, it looked a bit sleazy, a bit junkie-like.” (P03f)

Another problem mentioned by participants was the general lack of knowledge about their diseases, as it led to a lack of both understanding and awareness:

“And then there’s this general knowledge, ‘Oh, you have [diabetes], well, then you’re not allowed to eat cake at all’. And then I freak out on the inside. […] If you have an illness that everyone thinks they know about, then you get stigmatized a bit, right? That’s–yes, so you feel like a bit of an alien.” (P03f)

Many interviewees described the difficulties involved in having several diseases and treatments simultaneously. These included, for example, the coordination and integration of many doctor’s appointments into their everyday lives.

Participants also spoke of being overwhelmed by interactions between their individual illnesses and having to take several medications:

“… I’m barely awake, I’ve just opened my eyes and already have to inject myself with ten units of insulin. And then after that I have to swallow another five pills before doing anything at all, before I can even begin the day.” (P03f)

Impact on daily life. Participants further described the limitations to basic activities of daily living that resulted from their diseases. In this context, difficulties with functional mobility, including climbing stairs, sitting, and carrying things, as well as bathing were mentioned.

Participants also described the challenges they faced performing such instrumental activities of daily living as preparing meals, shopping for groceries, cleaning and other household chores, as well as driving a car and taking care of pets.

Most patients described their diseases as running “like a thread throughout the day” (P03f) and explained how they take account of their illnesses when planning their everyday activities:

“…I take my medication early in the morning, but then I’m limited for a few hours in that I have to refrain from doing certain tasks and from some movements […] The practical upshot of that is that I postpone my work and things to later in the day.” (P14f)

Impact on leisure time. Participants described challenges in planning and carrying out leisure activities, adding that these limited their participation:

“… when friends want to do something, I always have to think first: Can I do that? Because of my weight, because of my bones, because of my mental illnesses–will I manage? Is it even possible for me, do I really want to?” (P08f)

Regarding travel, the avoidance of long flights was described as a consequence. The secure transport and storage of medication (e.g., the possibility of cooling insulin), and the availability of medical care while travelling were also considered relevant.

Often as a result of their physical limitations, physical exercise and pursuing hobbies were a challenge for most patients, and were only possible after extensive preparations and / or to a limited extent.

Impact on working lives. Almost all interviewees mentioned the negative impact their diseases had on their professional activities, such as difficulties carrying out tasks that were part of their everyday work. Besides the physical effort of such activities, this included, for example, attending meetings and getting to work. Participants also complained of pain and concentration disorders, which tended to hamper their performance.

As a result of their limited resilience, participants also mentioned concerns about job security as well as stigmatization from their colleagues because “… no real thought is given to whether you are actually ill.” (P07m).

A limited ability to work as productively as before often resulted in a reduction in working hours or the inability to work at all. Although they appreciated being paid per hour or being able to work part-time, loss of income was a problem.

One person described that it was difficult to reconcile medical appointments and professional activities:

“And sometimes I feel a little uncomfortable with having to say, ‘I’ll be gone the rest of the day because I have to look after my health’.” (P03f)

Challenges perceived by healthcare providers.

Patient level. From the perspective of healthcare providers, multiple commitments in different areas of their middle-aged multimorbid patients’ lives meant they faced a range of demands and stressors. In addition to professional activities, responsibilities in their private and family lives, such as caring for children and parents, were also mentioned. Due to these various obligations, providers said their patients lacked time, which made the management and reconciliation of their health-related appointments and everyday lives extremely difficult:

"…I think that the middle-aged patient is often stuck in a sandwich, that they may have to take care of their parents, that they have children, that they have jobs—that there are just so many things going on in their everyday lives that they—and I actually see that as more extreme in women than in men–forget their own needs completely.” (GP07f)

Healthcare providers said one of the main challenges they faced was convincing patients of the need to change their lifestyles. On the one hand, this reflected a lack of awareness, but also little motivation to change their habits. On the other hand, they saw that patients didn’t have the time for health-promoting and preventive activities such as physical exercise:

“… encouraging patients, or getting them to understand that there are other things they could do to avoid being dependent on pills, such as lose weight or play sports or avoid certain foods. Of course that is often very difficult to convey, because of course it interferes with their lifestyle, and very few people are willing to accept that." (GP01f)

As a special characteristic of this group of patients, providers described the enormous demands patients made of themselves, which made it difficult for them to accept their illnesses:

"Higher, faster, further […] The demands they make of themselves are insane and could hardly be met by someone in good health." (SP13f)

In connection with acceptance, one caregiver also said patients often reacted negatively to the prospect of having to use assistive devices:

"A diagnosis of MS is not severe [for patients]. Well it makes them suffer too, but somehow they manage. But if I say they need a wheelchair they collapse in a heap.” (SP13f)

Healthcare providers also said their work was made difficult by the fact that patients often lack any understanding of how the disease develops and of its potential long-term consequences, adding that this was reflected in negligence and a low level of initiative with respect to attending check-up appointments:

"That’s actually the most difficult thing of all, making them understand that it’s a question of their health in the next ten, twenty years that’s at stake, and that that’s the reason the doctor checks things." (GP01f)

Healthcare provider level. Some respondents described working with other providers as difficult, often due to a lack of time but also a “lack of collegial behavior” (GP01f), which made cooperation with other providers challenging:

"… it would be very nice if it could be done interdisciplinarily, and physicians would work with other therapists, or with pharmacists on drug therapies. Unfortunately, due to time constraints, I don’t think it’ll happen." (PT02m)

Another problem the providers identified was discontinuity, caused, for example, by long waiting times to see specialists when the responsible provider is on vacation, or by poor accessibility in rural areas:

“In rural areas there’s often the problem that specialists are difficult to reach […]. And there are often real gaps in care because practices obviously cannot guarantee that people will be able to get hold of their family doctor within half a day or a day if something is urgent.” (GP09f)

In addition, continuity of care cannot be guaranteed because of a lack of coordination:

"… many people in the age group up to around 50 or so don’t even have a permanent general practitioner, so that when they have health issues, they just go to the physician they think is the right one. […]. And when they go somewhere, it is not reported anywhere, and there is no coordination." (GP09f)

There is also a lack of information continuity in existing cooperation, e.g., reports are not completed properly or only skimmed over, which sometimes results in such errors as duplicate prescriptions and inappropriate medication:

"Then they get, I don’t know, let’s say Diclo[fenac] 75 twice [daily] from the specialist, and I would throw my hands up in the air because of their reduced kidney function. Well, and then I have to be careful about saying it because I don’t want to criticize my colleagues or reduce the patient’s confidence in the doctor, but obviously I don’t want the kidneys to fail either." (GP07f)

Sometimes providers also found it challenging to reconcile patients’ preferences with their therapy, e.g., the desire to have children.

System level. One provider pointed out that the provided information was difficult for patients to understand. In her opinion, the extensive and unfiltered information leads to uncertainty and undesirable behavior on the part of patients:

“[…] they adjust their medication themselves, for example, or take some dietary supplements and no longer consult their physician […]. There is actually too much information and patients, as lay persons, really can’t judge what is of use to them." (GP09f)

At a structural level, criticism was also leveled at the fact that existing services did not address the needs of middle-aged people:

"There are sometimes few opportunities for the middle-aged population because only groups for the old exist, in which geriatric sports are on offer, and not really at an intensity that would be suitable for middle-aged persons." (GP05m)

In addition, budgets available to providers, and the scope of therapies covered by health insurance companies, were regarded as inadequate. The focus on short-term treatments rather than investing in prevention has also been criticized:

“It’s always about cost savings; so the healthcare system is always threatened by cost cutting and is always seen as driving costs. But that is a very short-term perspective because the costs that I save now, this year […] often [re]appear as significantly higher secondary costs in old age." (PC11f)

Recommendations.

During the interviews, both groups of participants had ideas and recommended approaches that might enable existing care challenges to be met, whereby patients generally described how they dealt with everyday multimorbidity, and providers focused on concrete recommendations. Although patients and healthcare providers were interviewed independently, they often had the same ideas, or their ideas complemented one another. The results of both patient and healthcare provider interviews are therefore presented together in Table 4.

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Table 4. Patients’ and healthcare providers’ (HCP) views on how to improve the healthcare situation of middle-aged persons with multimorbidity.

https://doi.org/10.1371/journal.pone.0291065.t004

Help patients cope with diseases. To better cope with their diseases, patients often seek information by, for example, reading or watching videos. In this context, patients wanted available information and training courses to be attuned to their specific situation, for example with respect to medication, nutrition, stress management, motivation, and information materials.

Providers saw it as their responsibility to educate and motivate patients, and to help patients improve and maintain their health by supporting and empowering them to rely more on self-care and self-management.

“… in any case, it is always very important to clarify that the patient is old enough to deal with it himself. And that he is being given the opportunity to live in such a way that he is able, taking the example of diabetes, to eat and change his lifestyle in such a way that it improves his health as much as possible.” (PC12f)

To help patients cope with their diseases, providers saw clear advantages in bringing patients together, e.g., in self-help groups. One healthcare provider explained they “…need to discuss things with others that have been affected, with like-minded people." (PC11f). Although self-help groups were also welcomed by patients, the amount of groups were not perceived as sufficient.

Regarding treatment burden, providers also acknowledged that the high complexity and fragmentation of the healthcare system might be too much for patients to deal with. Providers therefore thought a guide or contact person for patients whose main function was to help patients organize care-related activities and help them “find their way around the healthcare system more easily, to get to the providers they need” (PC11f).

Relief in daily life. Regarding basic and instrumental activities of daily living, many multimorbid persons considered their friends and family to be the main source of support, while others had good experiences with services such as paid help in the household, cleaning staff and grocery delivery services. Healthcare providers added that patients should receive support in the care of (older) relatives and children and that the cost of such services be covered by health insurers.

Activities of daily living also include participation in the community and society. With regard to people living with disabilities, participants saw potential for improvement in the infrastructure:

“… just needs to be generally made a bit more accessible, right? That sidewalks, entrances to public places basically just have to be made more barrier-free." (PT14f)

To further support patients whose ability to work and earn money was limited by their disease(s), providers suggested providing financial relief to patients. In order to increase the compatibility of diseases and work, providers suggested that employers could give patients the opportunity to adjust their working hours to take account of their medical appointments without any disadvantage to them.

Continuity of care. To improve the health of middle-aged patients with multimorbidity, both patients and healthcare providers recommended improving continuity of care. Middle-aged persons with multimorbidity wished for shorter waiting times for specialist appointments, and for an individual and holistic therapy plan. Providers felt that continuity of care could be achieved by ensuring one provider (e.g., general practitioner or pharmacist) coordinated healthcare, especially when several providers or sectors are involved in the treatment:

"I think patient safety is always higher when care is continuously and regularly provided in a general practice that also keeps an overview of things." (GP06f)

The structure of disease management programs (DMP) was considered to be particularly helpful in this regard. Providers further wanted appointments to be scheduled more quickly, especially when patients had acute problems. They thought that in order to provide appropriate care, specialist appointments and hospital admissions should be arranged faster. Continuity of care was also highlighted with respect to a continuous supply of long-term medication, which is sometimes interrupted because the GP is on vacation.

"…that long-term medication could be provided straight away, via the pharmacy, at least for a while […]. There should be some kind of arrangement so that long-term medication can really be taken continuously without there always being the problem that someone somewhere is closed at the moment or is on vacation." (PC12f)

Interprofessional cooperation. Both patients and providers considered communication and cooperation between the providers involved in their care to be extremely important. This was not confined to passing on information, but also to formulating a common therapy goal and to cooperating on an equal footing:

"… Handover protocols and simply agreeing with each other now and then on how things are going, what’s going on. I think it would be best if all the therapists, but also the doctors, discuss it among themselves and fix a direction to go in." (PT02m)

Providers thought it was important that networking should involve representatives from other institutions and sectors than their own. They also thought quality circles might help in this respect. To further promote interprofessional cooperation over the long term, it was also considered important to train medical and pharmacy students in one group, and to implement interprofessional education concepts.

Health promotion and prevention. Key aspects that were mentioned during the interviews included activities to promote health in the general population. This could be carried out by improving health education and using more preventive therapies, with the overall aim of raising awareness and increasing knowledge. In this context, patients hoped this would generate more understanding for their diseases.

Providers considered education and information for patients to be important, and saw potential to improve patient information, for example by providing patients with information that was targeted according to their needs, and in a succinct, easy-to-understand way.

"I think that factual, easy-to-understand information on the whole clinical picture is needed, along with a factual, not frightening, evaluation of possible consequences of the disease. Everything should be short and concise.” (PC11f)

To distribute information more effectively, they saw potential in using social media, information events and setting up information/counselling centers, and to anchor health promoting behavior, providers suggested that prevention should become part of school education.

Expansion of health services. Further recommendations included expanding health services. On the one hand, these concerned the necessity of preventive measures such as courses to prevent back pain, high blood pressure, and measures to help patients stop smoking. From the perspective of healthcare providers, existing services should specifically target middle-aged patients, and should be permanently available.

"… what I think we’d find helpful is nutritional advice, in addition to a structured sports program or activity program, meaning a program that has been adapted to meet the needs of the patients.” (SP08f)

On the other hand, both middle-aged persons with multimorbidity and healthcare providers saw a need for more psychological care for patients. Providers explained that basic mental health care and other health services should be low-threshold, easily accessible, and available free of charge.

General system-level changes. To improve the care of multimorbid, middle-aged patients and patients in general, providers also suggested making broad changes to the healthcare system, such as lowering bureaucratic obstacles.

"… if [a therapy] first requires an expert opinion and then approval from the health insurance company and then perhaps needs to be adapted by the provider of an assistive device […] then motivation disappears relatively quickly." (PC11f)

The necessity of defragmenting the healthcare system was also mentioned, since patients with multimorbidity receive care from multiple healthcare providers and across many interfaces.

Providers saw potential in increasing motivation through the use of financial incentives. As an example, they mentioned that although DMPs were considered useful, the enrollment of patients in several DMPs was unattractive financially.

Interdisciplinary cooperation must also be "promoted in terms of time and money" (PT02m) and the review of medication plans by pharmacists should be expanded and rewarded accordingly.

Increased financial compensation would also help ensure that caregivers receive adequate payment for their care services and that more time is available for care

"It takes an awful lot of time to go through the medication plan again and maybe change it, and then explain everything again. […] Yes, and with multimorbid persons there are simply a load of things you have to consider. […] And of course, that is not reflected in our pay.” (GP10f)

Regarding preventive measures, measures such as higher taxes for salt and sugar, and risk-specific contributions to health insurers were also discussed.

Healthcare providers also hope the digitization of processes will improve healthcare. The focus here was on making patient data related to medications, findings, and reports centrally available in an electronic patient file. This would improve continuity of care, especially at care interfaces. Furthermore, the e-prescription was regarded positively.

1. Increasing patient-centeredness.

In view of the numerous demands made on middle-aged persons, healthcare providers thought the demand for patient-centeredness should entail viewing the patient in the context of his or her life domains. Providers saw a necessary trade-off between the ideal therapy and feasibility in the everyday lives of this patient population. While their general aim was to help patients to cope with their diseases, to promote self-care, self-management, and healthy behaviors, and to focus on patients’ mental health, providers also suggested that structural arrangements and digital solutions would help patients flexibly integrate their health care into their everyday lives. Such measures might include, for example, longer opening hours, or even offering consultations that are independent of working hours and could take place online. In this context, the use of e-prescriptions was also encouraged.

2. Having a care coordinator to reduce complexity.

The complexity and fragmentation of the healthcare system hinder continuity of care and result in medication errors such as duplicate prescriptions and drug-drug interactions. A care coordinator could guide patients and help them oversee and coordinate their health-related activities. According to providers, this could be achieved by strengthening the role of GPs, by involving pharmacists, or by creating a new position. Overall, they agreed that providers should be compensated for coordinating patients’ care.

3. Promote interprofessional cooperation and networking.

Although appreciated by healthcare providers, interdisciplinary and interprofessional cooperation is currently barely feasible due to time constraints and a lack of the necessary structures. Providers said it would only be possible in their leisure time if personal relations existed, or if providers lived close to one another. Providers therefore recommended implementing structures that support interprofessional cooperation, and enable providers to get to know and trust each other (e.g., joint education and training). Furthermore, multiple providers involved in the care of multimorbid persons should agree on common therapy goals and jointly develop treatment plans to improve patients’ health and avoid contradictory statements and treatments. For this special patient population in particular, providers recommended multimodal treatment plans involving multiple healthcare providers. Cooperation between pharmacists and GPs was additionally considered necessary to enable an exchange of pharmacotherapy-related information for patients with polypharmacy. Overall, digitization and in particular electronic patient files were expected to facilitate interprofessional cooperation.