Introduction

Societal ageing and decreased mortality associated with various conditions due to improved health-system efficiency have led to an increase in the number of frail older people and people with multimorbidity [1]. Various studies show there is a small group of people with complex chronic conditions (such as multimorbidity, advanced frailty or advanced illness) who are characterized by high health and social needs. This population, often referred to as “high-need, high-cost patients” [2], requires a person-centred approach; otherwise, their needs can go unmet when fragmented care fails to cover one or more conditions [3, 4]. This multiple needs coverage require an integrated approach; thus, it is imperative to develop and improve integrated care models to ensure the health and social needs are met [5, 6, 7, 8, 9, 10].

In designing these models to move from disease-centred approaches to person-centred integrated care, it is crucial to take people experience into consideration [11, 12, 13, 14, 15]. Various initiatives in recent years have recommended exploring people priorities and asking them what matters most [16, 17]. Furthermore, researchers have identified system-related and professional-related issues that should be considered in planning healthcare services for these people [18] and have identified key aspects related to communication/information, care management, and care coordination that should be included [19].

Methods

We defined a strategy to include the participation of patients and caregivers in the elaboration of the Metropolitana Nord Community-based Integrated Care Programme to People with Complex Chronic Conditions (Programa ProPCC MetroNord Institut Català de la Salut) [23], tailored to people with complex chronic conditions and high social and care needs, that would identify key clinical actions for healthcare and social care staff to perform at different points throughout the entire trajectory of care. The initiative was developed in the framework of the quality improvement process led by the Metropolitana Nord Chronic Care Management Team, from the Gerència Territorial Metropolitana Nord, of the Institut Català de la Salut. Its main aim was planning and evaluating innovative integrated care strategies for patients with frailty and multimorbidity attended by our teams located in the north of the metropolitan area of Barcelona, Catalonia. The project involved more than one hundred people from the town of Badalona (third-largest city in Catalonia) January through November 2018.

This strategy comprised two components: (C1) a qualitative study to explore patients’ and caregivers’ experiences and views; and (C2) a task group with professionals to validate evidence-based key actions and to adapt them to their local contexts.

C2. Input from Healthcare and Social Care Professionals

To incorporate professionals’ perspective and knowledge in the programme design, we created a focus group for each of the five stages of the care trajectory (identification of high needs, care planning, crises management, transitional care, and end-of-life care). Each group comprised 9 to 11 healthcare and social care individuals from our institution with different backgrounds and professional roles providing care in different contexts (primary and community care, intermediate care and hospital care). Table 2 reports the composition of the different groups.

Table 2

Composition of focus groups with health and social care staff.

GROUP	PROFESSION/DISCIPLINE/SPECIALITY	UNIT/SETTING
Group 1 Identification of high needs	Nurse Nurse case manager General Practitioner General Practitioner Social worker Physician Geriatrician Pneumologist Internist	Outpatient primary care Home-based primary care Outpatient primary care Home-based primary care Outpatient primary care Emergency department Outpatient hospital care Outpatient hospital care Hospital-at-home
Group 2 Care planning	Nurse General Practitioner General Practitioner Social worker Cardiologist Occupational therapist Internist Administrative staff General Practitioner Director	Outpatient primary care Outpatient primary care Outpatient primary care Outpatient primary care Outpatient hospital care Hospital ward Hospital ward Outpatient primary care Home-based primary care Primary care team
Group 3 Crises management	Nurse case manager General Practitioner General Practitioner General Practitioner Pneumologist Physician Internist Nurse Internist Social worker Nurse	Home-based primary care Home-based primary care Acute home care Acute home care Day hospital Emergency department Hospital ward Day hospital Hospital-at-home Outpatient primary care Outpatient primary care
Group 4 Transitional care	Nurse case manager General Practitioner Social worker Nurse Administrative staff Coordinator Nurse Nurse Social worker	Home-based primary care Home-based primary care Hospital ward Hospital liaison Home-based primary care Hospital-at-home Outpatient hospital care Outpatient primary care Outpatient primary care
Group 5 End-of-life care	Nurse case manager General Practitioner Social worker Palliative care nurse Geriatrician Geriatrics nurse Palliative care physician Physician Director Physician	Home-based primary care Outpatient primary care Outpatient primary care Home-based palliative care Hospital-at-home Hospital ward Outpatient hospital Acute home care Primary care team Home-based primary care

Each group met in two to four sessions. In each session, two moderators from the research team started an open discussion on staff members’ experiences providing care in their care trajectory stage. With the aim of defining evidence-based actions for their stages of the care trajectory, participants listed clinical actions that could fulfil the needs of patients and caregivers. The clinical leaders of this project (MM and RM) validated the main evidence for these actions for each stage [25, 26, 27, 28, 29, 30]. They used high-quality research selected based on a US Institute of Medicine’s approach on successful models of comprehensive care for older adults with chronic conditions [31, 32]. Fifteen urging models were considered, including: interdisciplinary primary care [33], models that supplement primary care, transitional care, models of acute care in patients’ homes, nurse-physician teams for residents of nursing homes, and models of comprehensive care in hospitals. According to these reviews, a graphic panel with evidence-based good clinical practices throughout the care trajectory, in which health care and social professionals agreed was developed (Figure 1).

Figure 1 

Evidence-based clinical practices for people with complex chronic conditions, in which health and social professionals agreed.

Results

The ultimate result is an integrated care programme that includes 63 evidence-based actions, of which 37 (59%) were merged with actions derived from patients’ and caregivers’ experiences (Figure 2).

Below, we list the guiding principles of the programme, illustrating them with an excerpt from an interview or focus group with caregivers and participants in order to highlight their critical role in defining it.

A. To ensure that patients and caregivers understand the information provided

As this participant states regarding the caregiver, this priority corresponds to the demands of clear information and smooth communication between all those involved in the programme:

“With just one explanation, the caregiver must become an expert on the topic” (GF_PCC).

B. To coordinate the management of health and social needs between patients, caregivers, and professionals

Linked to the necessity of fluid communication, this priority adds a more practical dimension of coordinating views, actions and decision making (e.g. remaining at home and avoiding nursing home admission), namely allow participation in care planning:

“I fear he gets really sick and suffers. If this happens, I’d phone the nurse first thing. I trust him and he shares my views: avoid nursing homes” (EP3 MACA).

C. To ensure that social services are available when they are needed

This priority highlights the relevance of covering physical and environmental needs, as this caregiver points out regarding the importance of a wheelchair, even over more health-related issues:

“I’ve never really needed anything. (…) Just once, I asked the government, the council, social care, etc. for an electric wheelchair and it was rejected. I am not talking about information but about something primordial. (…) that a 49-year-old can get out (…). I am not asking for luxury but for people’s needs being taken into account. The doctor is amazing but sometimes these other things are more important” (GF CAREPCC).

D. To provide support to caregivers in managing situations

This priority is related to the need to not only involve but also provide specific support for family members and caregivers, who often report feeling overwhelmed:

“We need some help for the caregiver or a (different) caregiver some days a week… we are exhausted at all levels” (EP3 PCC).

E. To ensure that patients and caregivers feel supported throughout the entire trajectory of care

This priority relates to the emotional support, empathy, and respect needed throughout all stages of the care process, highlighting its dynamism (e.g. intense support to Primary Care teams by hospice at home teams may be needed in some cases of complexity) and the requirement of continuity of care and soft transitions:

“The palliative care nurse came home only until I learned how to manage morphine regulation” (EP2 MACA).

F. To enable patients to be attended at home (if care is available)

This priority relates to a general (but not unanimous) claim of receiving effective, care by familiar, trusted staff at home. As this participant points out, home care is seen as a priority but acknowledging this may have some limitations and should not prevail over the patient’s wellbeing (e.g. feeling calmed):

“I know my father will get worse, but we all want him to stay at home until the end if he’s calmed. He’s already been attended by the home care palliative care team once and it was great” (EP1 CAREPCC).

G. To facilitate a patient-centred approach

Somehow integrating the priorities listed above, this priority highlights the importance of respecting patients’ and caregivers’ values and preferences and allowing them to participate in care planning, even when these contradict established clinical advice (as in the excerpt below):

“The nephrologist told me to go to the hospital for everything. I was told this (an inhaler) could harm my heart but to avoid going to the hospital, I chose this option. I told the nurse: “I found this, and I have done that” and she said: don’t do this more than three days but if you really need it, go ahead, it won’t hurt you and it can clean your lungs”, I did not want to get to the hospital at all” (GF PCC).

Discussion

Our research has identified actions and priorities that are similar to those outlined in reference projects from the United Kingdom: National Voices [14] and Oxford Picker Institute [16]. The main dimensions identified from the contributions of patients and caregivers in our study are those related to the quality of information and communication, coordination and participation, and continuous health and social support/accompaniment.

In recent years, various groups have involved patients in service planning. In a scoping review of 22 studies reporting the experience of patients with multimorbidity, van der Aa et al. [18] identified 12 categories of experience with the healthcare process, dividing problems into those considered system-related (burden of care, lack of organization, poor communication and insufficient access to care) and those considered professional-related (competencies, managing information, attitude towards vulnerable patients and carers, guidance, communication skills, holistic view, familiarity, and patient involvement). Shiotz et al. [19] conducted semi-structured qualitative interviews with 14 patients with multimorbidity, identifying three dimensions related with continuity (information continuity, management continuity, and relational continuity). These authors identified a dichotomy in patients’ reports about their care experience: on the one hand, patients reported many problems and areas in which care could be improved; on the other hand, however, they also reported that they were mostly satisfied with and thankful for the care they received. These authors conclude that patients like to be treated as a whole person by healthcare professionals with time who collaborate with other professionals across the system to provide specialized care to manage their complexity. They also underline the importance of medication management. In a multicentre quality study involving 172 patients with multimorbidity and caregivers, Kuluski et al. [17] sought to ascertain the priorities of patients and their caregivers regarding care. They found that the priorities were (a) feeling heard, appreciated, and comfortable; (b) having someone to count on; (c) having easy access to health and social care; (d) knowing how to manage health and what to expect; (e) feeling safe; and (f) being independent. To understand healthcare professionals’ perspectives about managing patients with multimorbidity, Sinnott et al. [30] synthesized the findings from 10 studies including a total of 275 general practitioners in 7 countries. They found that problematic aspects of managing these patients fell into four areas: the disorganization and fragmentation of healthcare, the lack of guidelines adapted to patients needing complex care, the difficulties involved in delivering patient-centred care, and barriers to shared decision-making.

Our work integrated the viewpoints of patients, caregivers, and professionals to design a new model of integrated care in a territory. We provided the means and opportunity for those living with complex chronic conditions, and their family members and caregivers, to express their views about how healthcare services can best meet their needs. Likewise, we considered it important to incorporate the viewpoints of the different professionals involved in caring for these patients into a new, person-centred approach to managing these high-need patients. The model resulting from this quality process (Table 4) is in the same line as advocated by Poitras et al. [25] based on their scoping review, which underlined the importance of promoting evidence-based decision making, adopting patient-centred approaches, enabling patient self-management, facilitating case/care management, promoting interdisciplinary approaches, developing training for healthcare professionals, and integrating information technology.

Several limitations and considerations related to the nature of the co-design process in people with complex chronic conditions and their caregivers were identified. Firstly, we found difficulties in the engagement process. Circumstances made it necessary to partially modify the strategy that had been planned. Although the focus groups provided ample useful information, attendance was lower than expected (only 6 patients and 5 family caregivers) because some patients’ conditions had worsened, so neither they nor their caretakers could attend. To ensure that all patients and caregivers could participate, we interviewed them in their homes, thus increasing the number of visits and prolonging data collection. Despite these drawbacks, this approach ensured a more representative selection of patients and caregivers by including those who were especially frail and complex. Secondly, we assume that the voluntary participation of people (patients and caregivers) with special motivation to collaborate in the care improvement process implies a bias related with the nature of our pragmatic approach. Thirdly, despite reporting to the participants the highlights of their input in the final version of the programme at the end of the process, more feedback is needed to monitor the adaptation of the programme to their views and needs. The fact of not including patients and caregivers in the design of key actions leads to an incomplete co-design process. This inclusion was considered too complex in our approach to the design of our study, due to cultural reasons and other organisational factors. We will take this situation in consideration for future updates of our care model strategy, based on the successful results of this initial experience.

Finally, we would like to highlight the impact of this quality process in the development of the new model. Through 2019 and the first trimester of 2020, the task continued with several meetings with directors and clinical leaders of the region to translate it into redesign service production, at a community level, and at intermediate care and acute hospital level. Key actions of the programme were used as a standard quality framework for the detection of high-need high patients and for the case management provision across the care continuum. Most units could modify their care without major structural changes in their teams, but Metropolitana Nord Primary Care teams and the Department of Geriatrics of Hospital Universitari Germans Trias i Pujol, decided to build new multidisciplinary case management units, with expert social and health staff, to improve to provision of person-centred care based on the care recommendations of the new programme. The validation of the model was interrupted due to the Covid-19 pandemic in 2020. We are working on completing the evaluation of the project, by following the ProPCC-Badalona cohort evolution [36].

Additional File

The additional file for this article can be found as follows