While the 17 programmes differ from each other in various ways (e.g. target group, setting, cultural background, health system context), the overarching analysis focuses on success factors and key elements that are common across the programmes and contribute to a well-functioning care process. We grouped the main themes that emerged from the analysis into the following four categories: holistic view of the patient, continuity of care, relationships between professionals, and patient involvement.
Holistic view of the patient
There is increasing consensus that integrated care of persons with complex needs cannot exclusively address physical health problems, but needs to adopt a holistic view of the person [36,37,38,39,40]. This is based on the recognition that physical health, mental health and the social situation are interconnected and should therefore not be dealt with independently. This focus on a holistic care approach has likewise emerged in our analysis. The two sub-themes we identified in this context are (1) consideration of mental health and (2) consideration of the social situation of patients.
Consideration of mental health
In accordance with this holistic view, most programmes take into account mental health in the care process and many provide corresponding services as integrated part of the programme (e.g. psychotherapy, counselling). Both a care coordinator and a programme initiator from South Somerset Symphony [UK] acknowledge that the presence of mental health problems increases complexity and poses additional challenges in the provision of care:
“I think anxiety and depression are huge and I certainly didn’t realise how much that impacts on a person’s health and wellbeing and, you know, some people can have three, four [physical] long term conditions and can manage quite well, somebody that could have anxiety and depression could have one [physical] long term condition and it’s, you know, they don’t manage at all.” (P17_IP09)
“[...] issues around loneliness, social isolation, anxiety, mental health issues, such a widespread anxiety and depression issues, confidence issues, a whole range of things that can’t be changed overnight. That takes time to work with individuals and their families and their carers… I think the most challenging individuals are those with severe and enduring mental health issues.” (P17_IP03)
Consideration of social situation of patients
Apart from considering physical and mental health problems, most of the investigated programmes also put emphasis on the social situation of their patients. While some programmes at least take into account the patient’s social context when planning the care process, others even strive to design care so as to actively target social problems.
The philosophy of the Sociomedical Centre Liebenau [AT], for example, is guided by a “social medicine” approach. Based on a firm belief in the significance of social determinants of health, the programme aims at improving patients’ social situation in addition to providing healthcare in a narrower sense. To this purpose, it employs social workers, provides various counselling services and runs a community centre. A physician points out that patients often prioritise social aspects over their physical health:
“[...] if someone doesn’t know how he is going to finance his everyday needs, then coping, for instance, with their diabetes or their multiple illnesses is probably the least of their worries, because they’ll say: ‘Okay, that’s an organic illness that I have, but I don’t know if I can keep the apartment or I don’t know if the youth welfare office is going to take my children away or something.’ As a doctor, I then have the responsibility to also help resolve these problems, because only then will the medicine prescribed work.” (P02_IP04)
Medically Assisted Rehabilitation Bergen [NO], which specifically targets drug users, also provides social support to its patients. As a health professional involved in the programme highlights, it is necessary to secure the patient’s basic needs before starting the actual treatment of health problems:
“My way of thinking has been that you must attend to the basics first, before you move on. For many, the opioid addiction or the search for heroin will be the one thing that overshadows everything else, it takes control over all other needs, so if you got that right, then you need to secure housing, and attend to economic problems and then you can start to dig into [mental problems].” (P12_IP03)
In order to fully capture the social situation of persons with complex needs, the importance of personal contact to patients in their own environment during the assessment was stressed by several interview partners. This allows for a better understanding of the patient’s situation and the scale of his/her complex needs, as a nurse from Badalona Serveis Assistencials [ES] highlighted:
“We think the first visit is very important and it must be done at home, because then you can see which is the social situation, the environment, if the patient is ready to follow our instructions, if he takes the medication … This is an important issue, because when you are at the consultation, they say ‘Yes, I take this, I take that’, but when you go to their homes and open the medicine cabinet, it’s a mess and you see that there are many things they don’t take, or that they don’t do it well.” (P14_IP14)
Continuity of care
The concept of continuity of care involves a continuous caring relationship with an identified health care professional and seamless and timely service provision across multiple providers . It is a central aspect of quality of care and especially important when providing care to persons with complex needs [36, 42, 43]. Continuity of care was identified as a central aspect to the success of the investigated programmes. In particular, three sub-themes emerged, namely (1) the existence of a single contact point for patients, (2) the alignment of the services offered by a programme and (3) the relationship between patients and non-physician professionals.
Existence of single contact point for patients
Many of the investigated programmes involve certain professionals acting as a single contact point for patients. Some examples are case managers in Casaplus, elderly care nurses in U-PROFIT, special advisors in Medically Assisted Rehabilitation Bergen or case management nurses in Badalona Serveis Assistencials. Depending on the primary focus of the programme these persons have different professional backgrounds (e.g. nurses, social workers). Persons with complex needs, their informal caregivers but also professionals and programme managers appear to highly value the existence of such a single contact point ensuring a targeted navigation through the health and social care system, as the latter is often a challenging task for these persons.
In South Somerset Symphony [UK], patients are assigned a care coordinator who acts as such a single contact point and manages transition from multiple care pathways to a single coordinated and integrated pathway. Patients perceive a benefit to their care from this service:
“It doesn’t matter what is wrong with me, I can discuss it with them. If I need a doctor’s appointment, they can make one at the surgery for me and they can … if it's something to do with, say, the diabetes and they think I need a review, they will arrange all of that for me. So it is, as they have said, one body of people I can go to that has access to everything I need.” (P17_IP04)
A similar role is played by the case management nurse in Ais-Be [ES], who coordinates the different specialists involved in a patient’s treatment. Furthermore, when the patient is stable, the case management nurse is in charge of monitoring and follow-up. In the following, a member of the innovation directorate emphasises the significance of the case management nurse:
“This is the role of the case manager, to put order in the confusion generated by different doctors that are seeing only one part of the patient. This fragmentation is the one solved by the case manager [ …] I would say that the strength of the case manager is giving continuity to the patient, monitoring the patient with low intensity but frequently.” (P15_IP05)
Alignment of services offered
Addressing health issues of patients with multiple chronic conditions requires multiple different professionals to deliver appropriate care for both health and social problems in a coordinated way. This can be specifically challenging for persons with complex needs. At the centre of integrated care programmes for persons with complex needs, there is often a multi-disciplinary team covering a potentially broad spectrum of professions from the health and social care fields [44, 45]. This team-based approach is appreciated by both the professionals themselves and patients.
The team of the Sociomedical Centre Liebenau [AT], for example, includes health professionals, a psychotherapist, social workers and a legal advisor – all under one roof. This enables the Sociomedical Centre Liebenau to act as a “one-stop shop” and provides low-threshold access to a variety of services. A social worker, for example, stresses that her presence at the centre encourages patients to use her services who would otherwise be reluctant to do so:
“It’s quite possible for people to go to their GP, and for him to ask: ‘Have you talked to a social worker about that?’ And for them to say: ‘No, I haven’t, but I’ll think about it.’ But then there’s usually a psychological barrier. But if the doctor says: ‘Wait a moment, we have a social worker here, you can meet them right away.’ When the people then see me, and I start talking to them and building a relationship at once, it’s easier for many people, and they can come to one and the same place for different problems, don’t need to go to yet another place.” (P02_IP02)
Relationship between patients and non-physician professionals
In several programmes, addressing and making use of the distinctive nature of the relationship between patients and non-physician professionals has emerged as a central aspect. Non-physician professionals play a key role in many of the programmes; as a consequence, patients and/or informal caregivers develop special relationships to them.
In Casaplus [DE], a relationship of mutual trust and learning has developed over time between many patients and their case managers as a consequence of regular contact. The case management approach is aimed at complementing the physician’s treatment and is viewed by professionals and patients as a valuable addition. A patient, for example, appreciates receiving more extensive advice on handling her diseases:
“Well, I’m not a physician, but the case managers there have a lot more knowledge and influence, thus they explain diseases and their potential consequences and other important things to me.” (P05_IP08)
In U-PROFIT [NL], an elderly care nurse takes on the central role in the care process. His/her role is perceived as important in frail elderly care in general, but especially in complex cases that go beyond the medical domain. Several aspects in this context were highlighted in the interviews, such as the patients’ special relationship to the elderly care nurse in contrast to their relationship to the physician. In particular, patients are more willing to share concerns with the elderly care nurse, as a physician of the programme acknowledges:
“[…] patients are open in a really different way towards the nurses than towards us [GPs]. Often much more is said, they dare to say much more, because then you don’t bother the GP even though you [the GP] think they can really say more, they just don’t.” (P09_IP04)
A feature that patients particularly value with regard to non-physician professionals, seems to be the time these professionals spend with them, as a patient in BSiN [NL] emphasises:
“Just making the time […] that the time is just there you know, that is nice. That you don’t feel the pressure ‘oh now we have to do this quickly’ because she has to leave in three minutes for example.” (P11_IP05)
Relationships between professionals
While the quality of relationships between professionals always plays a role in the delivery of care, it is of particular importance when various disciplines are involved and cases are complex [46,47,48]. Hence, this aspect has been raised in the context of various programmes as a prerequisite for a well-functioning care process. We identified two sub-themes in this context: (1) building trust between professionals, and (2) communication between professionals.
Building trust between professionals
Several stakeholders of the investigated programmes stressed that good collaboration can only be achieved if all involved partners form trusting relationships with each other. This is particularly relevant when professionals are not used to collaborating closely because standard care settings do not require them to do so. However, it was also acknowledged that building such relationships requires effort, time and a team culture that allows for open-minded discussion.
In the following, a care manager and initiator of the Health Network Tennengau [AT] states that he appreciates the openness in communication between the professionals involved in the network, which also allow for expression of criticism:
“I think a certain culture has developed over the years in the Tennengau region. Nowadays, there are no borders between the different participants. If I contact someone, that contact is basically friendly and positive from the start, even if I were perhaps on occasion to voice criticism. […] I’ve heard that in other areas that can often cause tensions, that people are in competition with each other. […] We support and encourage each other and that’s what I find good and is what, I think, has established itself over the course of time.” (P01_IP05)
Similarly, Salford Integrated Care [UK] has a long history of collaboration, which dates back to before the programme was implemented in its current form. According to the programme manager, the trust built over time was a central prerequisite for successful programme development:
“I think our history of partnership working is the most important issue, and the relationships and the trust and the respect that’s been built up over the years. It’s that capital that we’ve invested in each other which I think is allowing our plans now to take shape.” (P16_IP01)
Communication between professionals
In order to facilitate continuous communication between professionals – and in some cases also the patients and/or their informal caregivers – many of the investigated programmes have implemented communication platforms like regular team meetings or case conferences.
In South Somerset Symphony [UK], there are regular team meetings in which the most complex cases are reviewed and discussed in a non-hierarchical and informal way, allowing everyone to bring up what they regard the most relevant issues. These so-called “huddles” are a key instrument for communication, as an initiator of the programme highlights:
“[…] and that’s where they discuss all their patients who are ten on the Symphony scale so the ones they’re most worried about. They tend to be the ones who have just come into hospital, just come out from hospital, massive change in circumstances so if one of them has just gone into the hospice or something like that that’s changed for the patient, so they tend to be discussed on a daily basis. […] So the huddle is a key thing and tends to happen early in the day.” (P17_IP03)
A central aspect that is intensively discussed in the literature on integrated care (e.g. [49,50,51]) and also surfaced in the analysis of the programmes is the involvement of patients in all stages of the care process. In contrast to a care approach in which the patient is a passive receiver of treatment, such efforts allow patients to actively contribute to their treatment options. In this context, we identified two main sub-themes, namely (1) joint goal-setting/shared decision-making and (2) adaptation to reorganised service delivery.
Joint goal-setting and shared decision-making between patients and professionals
Most of the investigated programmes put a special emphasis on involving the patient when setting goals for his/her treatment. This is of particular importance for persons with complex needs, as they often need to prioritise among possibly conflicting goals . This is the case when it is too demanding or impossible to address multiple health and/or social problems simultaneously. Therefore, efforts to involve the patient in all decisions to be made in the care process are being increasingly propagated, especially in integrated care [53,54,55,56]. The opportunity to define goals and participate in the decision-making process is highly valued by many patients, as several interviews across the programmes indicated. However, some patients leant towards entrusting the decisions to the professionals altogether. It seems that giving the choice to what degree patients are involved in decision making is beneficial to the care process.
In Gesundes Kinzigtal [DE], an individual treatment plan is developed together with the patient, following a goal-oriented approach. This treatment plan is based on realistic goals set by the patient, as this physician explains:
“If I have a patient with, for example, overweight and diabetes, I try to actively involve him. I ask the patient: What can you contribute to the improvement of your health status? What are you willing to contribute? What is your aim for your personal health? Regardless whether the patient expresses the wish to be physically active, to reduce weight or to change the diet. Usually, I try to include the patient’s wish and adapt the treatment options accordingly in order to achieve the highest compliance and motivation. […] Treatment goals should always be feasible and achievable, hence adapted to the patient.” (P06_IP05)
U-PROFIT [NL] aims at preserving physical functioning of frail elderly, so as to postpone or prevent admission to institutional care facilities. As a project manager points out, this aim must also be a priority for the patients themselves in order for the programme to be successful:
“[Living at home longer is] what everyone essentially wants. That’s what the government really wants, but most older people too. And that only works if you link up with what someone finds important.” (P09_IP10)
Learning Networks [NO] applies a tool for functional ability assessment called ‘What matters to you’, which combines the Patient-Specific Functional Scale (PSFS ;) with priorities set by the patient. A nurse explains that this tool has been effective in improving patient involvement:
“What matters to you’ has come into focus and been brought up much more with good patient pathways so I think user involvement has gotten through much more now than earlier, we maybe thought we had this before, but now we are much better at asking the user first.” (P13_IP14).
Prioritising a patient’s wishes is of particular significance in palliative care, as the manager of the Palliative Care System [HR] stresses:
“The person's wishes, their needs, their pain, and their torments are more important than the treatment protocols. It is more important to respect that than to get the result that using some medicine can prolong the patient's life for 7 or 15 days which can be published in conferences. We really care about the person.” (P04_IP03)
Adaptation to reorganised service delivery
A prerequisite for being able to actively involve the patient in the care process is that he/she accepts and adapts to the reorganisations in service delivery that the programme entails. This aspect has emerged in the context of several programmes. While the favourable effects of patient involvement were acknowledged in most programmes, some interviews indicated that such measures can also be demanding and challenging for both persons with complex needs and professionals.
In South Somerset Symphony [UK], for example, a physician acknowledges that a shift in patients’ mind-set is necessary in order to accept the new care model, in particular the physician not being the patient’s primary contact point anymore:
“I mean some patients love it, some patients, you know, are used to their GP and, you know, does my GP not want me anymore… The doctor is not always the first point of contact as it happens in primary care, because that is just unsustainable, we all have to – everybody has to change... Patients have had to get used to the fact that they may not see a doctor as much as they did when they were […] able to access them through primary care, which is often a reason why they are referred to us because, you know, the demand on primary care is so great.” (P17_IP06)
In some programmes, informal caregivers play a central role in the delivery of care and are therefore also required to adapt to new situations. This is, for example, the case in Badalona Serveis Assistencials [ES], which is focused around home hospitalisation. As the quote from a physician below illustrates, changes entailed by the intervention can be challenging for informal caregivers. The programme therefore follows the strategy to simplify and dose the guidelines according to informal caregivers’ capabilities and, if necessary, schedule more frequent visits:
“Some caregivers on the one hand have difficulties to understand the intervention, and on the other hand there are resistances to change habits. They are used to do things in one way and when you say ‘now you’ll mobilise him [the patient] this way’ it is difficult for them to understand the cure plan. It’s not that they are not willing but that they have difficulties to understand. Especially during the first days of the intervention, when they get much information.” (P14_IP05)