Development of a patient-centred care pathway across healthcare providers: a qualitative study
© Røsstad et al.; licensee BioMed Central Ltd. 2013
Received: 6 December 2012
Accepted: 22 March 2013
Published: 1 April 2013
Different models for care pathways involving both specialist and primary care have been developed to ensure adequate follow-up after discharge. These care pathways have mainly been developed and run by specialist care and have been disease-based. In this study, primary care providers took the initiative to develop a model for integrated care pathways across care levels for older patients in need of home care services after discharge. Initially, the objective was to develop pathways for patients diagnosed with heart failure, COPD and stroke. The aim of this paper is to investigate the process and the experiences of the participants in this developmental work. The participants were drawn from three hospitals, six municipalities and patient organizations in Central Norway.
This qualitative study used focus group interviews, written material and observations. Representatives from the hospitals, municipalities and patient organizations taking part in the development process were chosen as informants.
The development process was very challenging because of the differing perspectives on care and different organizational structures in specialist care and primary care. In this study, the disease perspective, being dominant in specialist care, was not found to be suitable for use in primary health care because of the need to cover a broader perspective including the patient’s functioning, social situation and his or her preferences. Furthermore, managing several different disease-based care pathways was found to be unsuitable in home care services, as well as unsuitable for a population characterized by a substantial degree of comorbidity. The outcome of the development process was a consensus that outlined a single, common patient-centred care pathway for transition from hospital to follow-up in primary care. The pathway was suitable for most common diseases and included functional and social aspects as well as disease follow-up, thus merging the differing perspectives. The disease-based care pathways were kept for use within the hospitals.
Disease-based care pathways for older patients were found to be neither feasible nor sustainable in primary care. A common patient-centred care pathway that could meet the needs of multi- morbid patients was recommended.
KeywordsCare coordination Continuity of patient care Healthcare disparities Multi-morbidity Patient discharge Primary care Home care services Interdisciplinary communication Organizational culture Health services for the aged
In Norway, as in most Western societies, health authorities consider health and social services to be fragmented; especially challenging is a lack of continuity of care for elderly and chronically ill patients [1–4]. More outpatient care, fewer hospital beds and shorter inpatient stays redirect more rehabilitation and follow-up to primary care at an increasingly earlier stage of treatment [2, 5]. Studies show that there is a considerable risk of adverse events in relation to the transition of patients between hospitals and primary care services and that information provided is often insufficient [6–8]. Thus, there is a growing need for better care coordination between primary and specialist health care services to ensure patient safety and continuity of care [1, 9].
Many countries have focused attention on improving the coordination of their health and social care services [10, 11]. In some European countries, models for hospital-at-home regimens have been developed as a beneficial alternative to inpatient care for selected patients [12, 13]. Treatment and follow-up takes place in the patient’s home, with an ambulatory team from the local general hospital remaining responsible for patient care. Other models describe care pathways that aim to ensure adequate follow-up after discharge, involving both specialist and primary care services [14, 15]. Most studies in the field evaluate models that have been initiated by specialist care services and are based on treatment of single diseases like stroke, heart failure and COPD [16–18]. Some studies describe care pathways for hospitalized elders more generally . In these studies, hospital-based practice nurses or multidisciplinary teams are usually involved in the discharge process and for a limited post-discharge period. In Denmark an intervention was developed within primary care by GPs and home care services that reduced the risk of readmissions and improved medication control for newly discharged elderly patients .
Models have also been developed to improve the follow-up care of patients with chronic conditions in primary care. The Chronic Care Model has been introduced at several sites but targets mostly single diseases [21, 22]. More recently, the Patient-Centered Medical Home model has been launched in the US .
Cultural differences between specialist care and primary care are not unknown . However, we have not found studies investigating the potential implications that the different professional cultures might have on the process of developing care pathways across care levels.
In Central Norway a primary-care initiated project was set up where the main objective was better care coordination and follow-up during and following discharge from hospital to home by developing integrated care pathways. Being a cluster-randomised complex intervention, a process evaluation nested inside the trial was started in order to clarify causal mechanisms and to identify obstacles or other contextual factors contributing to the variation, success, or failure of the interventions . The aim of this paper was to explore the process of developing the integrated care pathways that was going to be implemented in the project.
This study used a qualitative design that included observations and interviews. The study was conducted from spring 2009 until spring 2010. It was approved by the Regional Committee for Medical and Health Research Ethics in Central Norway and the Ombudsman for Research at the Norwegian Social Science Data Service. The randomized trial was registered in Clinical Trials.gov NCT01107119.
All informants were informed about the study both in writing and orally by the first author and signed a written consent. They were informed that the interviews would be handled confidentially, that citations would be anonymous, and that they could ask for statements to be deleted.
In Norway the general and university hospitals are owned by the government and managed through four regional health authorities. Primary care services, comprising for example general practitioners (GPs), home care services, nursing homes and community hospitals, are the responsibility of local authorities [26–28]. All citizens are entitled to have a GP who is responsible for providing general health care, including medical follow-up after discharge from hospital. These are usually organized as small private enterprises. Home care services are organized in district units employing nurses and aides who offer nursing and therapeutic procedures, medical services, personal care, social care and terminal care. Home care services may be offered several times a day and at night, when needed, and can even be provided continuously for 24 hours a day for shorter periods.
The framework for the project being studied was outlined by healthcare managers from the city of Trondheim in cooperation with St. Olavs Hospital and researchers from the Norwegian University of Science and Technology (NTNU) based on a literature search on care pathways across care levels for older patients.
Local process facilitators (N = 27)
District nurses in home care services
Health and social administration, primary care
Occupational therapists, primary care
Participants in the interviews (N = 23)
Years of working experience
Hospital/Regional health administration
Semi-structured interview guide
How did you experience the process of developing an integrated care pathway for older patients?
• Understanding of care pathways
• Important topics in development work
• Challenges regarding care pathways for older people
• Responsibilities and collaboration in a care pathway
• Expectations and attitudes in the development process
• Challenges in the development process
• Appraisal of the final solution
The interviews were recorded and transcribed verbatim by the first author. In the analyses we applied Malterud’s systematic text condensation, which is inspired by Giorgi’s phenomenological approach [31, 32]. The authors studied the interviews independently in order to get a general sense of all the material and to identify the main themes. They then met to discuss and refine the identified themes. The first author then identified units of meaning related to the main themes, and the coding of these was discussed in subsequent meetings with the other co-authors. The original themes were re-evaluated throughout this process.
Additionally, six researchers familiar with qualitative studies and who had not been part of the project read the transcripts of the first focus-group interview independently and identified central themes. There were no major differences between these and the central themes already identified. The main results of the analyses were finally presented to informants from all geographical sites to uncover any apparent misunderstandings. The final analysis was studied and approved by the authors. The citations used are chosen to illustrate and complement the description of the findings.
The results were categorized into five main themes: The overall experience with the process is described under the heading “process experiences.” The details of the experience are described under the following headings: a tug of war between professional goals; disjointed collaboration in primary care; primary care perspectives gain ground; and merging of perspectives.
At one stage we were uncertain if and how we could continue the process. We were miles apart. We didn’t understand each other’s point of view. (Nurse primary care, local process facilitator, city)
Gradually we accepted that each group had a completely different approach to the problem; that we came from different areas of expertise. The geriatric nurse helped us to speak the same language. That made things much easier, and then it became really fun. (Nurse primary care, local process facilitator, city)
A tug of war between professional goals
I felt as if we were expected to be preoccupied with diagnoses. However, we were more concerned with the patient’s functional ability. (Nurse primary care, local process facilitator, city)
I wonder if a medical focus will be completely missing in the primary care program; it seems to have been given a back seat; it would appear that what I think is most important for the patient, follow-up of the disease, is wasted. (Hospital nurse, local process facilitator)
The representatives from the patient organizations acknowledged the perspectives from both parties telling that their attention changed from focus on disease in hospital into resuming daily activities when coming home.
These different perspectives caused confusion and consternation. However, even if the district nurses considered functional ability as the most important factor in the transition phase, they were also concerned about their patients’ chronic conditions in the follow-up at home. But they found that being restricted to assessment of single diseases for the three chosen diseases was unsatisfactory. Their patients rarely had only one single disease. In addition, diseases that were common in hospital might be infrequent for each nurse in primary care. They had to deal with the whole spectrum of diseases.
There was an enormous difference between specialist care and primary care in how they approach care pathways. We found it difficult to understand why you [primary care] weren’t really interested in care pathways for specific diseases, and how you could think that one common care pathway might suit many diseases. (Supervisor, Regional Health Authority)
Disjointed collaboration in primary care
When a patient is discharged the information we get is inadequate. And we can’t call the GP all the time either. To be able to know that we are doing a good job, nurses need to have a proper idea of the patient’s condition. I’m uncomfortable not having that type of control. (Nurse, primary care, rural area)
And I’ve noticed that the district nurses aren’t always very good at monitoring patients. I have on several occasions experienced that they have seen the patient for one or two weeks without noticing that the patient is getting very ill. (GP, city)
Nurses and doctors work closely and are on first-name terms when patients are in hospital. When the patients have had a minimal recovery, they are sent home. The possibilities for giving a good and coordinated follow-up then are completely different; in primary care, district nurses and GPs are geographically separated, might never have met each other and may not even know each other’s names. The present system means that all home care service units may have to collaborate with all GPs in the municipality. (GP, city)
Primary care perspectives gain ground
The primary care representatives expected us to represent the whole hospital. We were shocked. We hadn’t been given a mandate to speak for the whole hospital. (Hospital nurse, local process facilitator)
Even when the doctors took part in the meetings, they were only there for some of the time, and they were focused on the follow-up of single diseases. (Nurse primary care, local process facilitator, rural area)
Merging of perspectives
In the end the participants reached a consensus. The disease-based clinical pathways in the hospital were kept as before, while a common care pathway able to include most diagnoses was designed for the transition between hospital and primary care and for the follow-up in primary care (Figure 1). In the final phase of the process, the focus was on developing structures for collaboration and the flow of information. It became evident that there was a need for detailed descriptions of procedures, responsibilities and information flow with checklists for all situations that had been identified as critical in the risk-identification phase (Figure 1).
Cultural differences found between specialist care and primary care for patients with home care needs
Short perspective – major changes in a short time
Long perspective – small changes over time
Diagnosis with advanced technology
Functional ability, patient preferences and degree of self-management
Attention to one disease at a time
Simultaneous attention to all of the diseases patients have; a majority of patients have multiple diseases
Strong adherence to clinical guidelines
Clinical guidelines for multi-morbidity hardly exist
Passive; health personnel decide what has to be done
At home the patient decides; focus is on resuming daily activities
Often in teams, many involved, and in a confirmed hierarchical structure
Often by health personnel alone or by few; more autonomous
Fragmentation in primary care
The increasing development of new specialties has contributed to fragmentation in health care [4, 33]. Several publications have therefore pointed to primary care to ensure the continuity and integration of patients’ needs and care . However, the interviews in this study confirmed that there is also significant fragmentation in primary care . This problem has been accentuated as the home care services in Norway have developed from being primarily a social service providing practical help and support to becoming a healthcare service with an important role as well in advanced medical follow-up of chronic somatic and mental conditions [35, 36]. However, better care coordination between GPs and home care services has been difficult to achieve thus far [37, 38]. One important measure proposed in this study, therefore, was a mandatory GP visit for all patients who are discharged from hospital and need home care services (Figure 1).
Clinical disease-based care pathways: sustainable in primary care?
The district nurses in our study were doubtful as to the usefulness of disease-based care pathways in primary care, as in their experience a large proportion of their patients had considerable co-morbidity. The prevalence of patients with multiple medical conditions increases with age and is substantial in the older population [39, 40]. The specialist care informants gave an impression of district nurses not being interested in the treatment of the individual diseases. However, based on statements from the district nurses, there are reasons to believe that this was a misinterpretation. The impression was probably caused by the broad scope of measures that district nurses were concerned with in addition to treatment. They actually promoted a patient-centred approach that included functional ability, patient preferences, self-management and social needs . They described that patients with chronic diseases have more common rather than differentiated needs. This, combined with the great prevalence of multi-morbidity, prepared the ground for one common clinical pathway for transition from hospital to follow-up in primary care. In the literature, care pathways based on a single medical condition are also found to be unsuitable for this patient group. This is because disease-based care pathways are founded in studies that largely exclude patients with co-morbid conditions . Following clinical guidelines for individual diseases for patients with co-morbidity might even lead to potential treatment conflicts .
The development process
Abandoning the disease-based model in favour of a patient-centred model was not an obvious result of the process. The supervisors from the regional health authority coaching the process were familiar only with diagnosis-based clinical pathways within hospitals, and the initial idea in the project was to develop care pathways for three diagnoses, which indicated that the representatives from the hospitals would be the experts. In addition, the GPs felt most comfortable with the disease-based model. However, the lack of participation by physicians in the working groups lessened their influence on the process.
Several other factors influenced the result. This was both a top-down and bottom-up process considered to be important in such development work , and the project had a broad representation from hospitals, primary care and patient organizations to ensure that all the different perspectives were taken into consideration. This is believed to be important both to overcome any asymmetry between primary care and the usually dominant hospital care  and to obtain a result with a patient perspective that could be sustainable both within specialist and primary care.
Strengths and limitations
The results of this study came from experiences within a single regional setting. Any generalization of the findings should be made with caution. It is well known that there are major organizational differences in health care across countries that will influence and set limitations for what may be achievable and even legal. Norway has, compared to many countries, a well-developed primary care sector with an expenditure of approximately the same size as specialist care. However, the findings point to general challenges of cooperation in health care that have been thoroughly discussed in the literature [3, 24, 45].
A strength of the study is the use of triangulation: source triangulation by combining observations, written information from the workshops and interviews, and investigator triangulation by having several researchers with different backgrounds analyse the data and thus counteracting bias. The findings were finally validated by presenting the analyses to three of the informants, representing each of the three local working groups.
In this study, it was found that the merging of primary care and specialist care perspectives led to a change from developing several separate, disease-based care pathways to one patient-centred care pathway suitable for most common diagnoses. The findings in this study challenge the sustainability of the current situation where most of the care pathways across specialist and primary care are disease based. The effect on patient outcome of a patient-centred care pathway for older patients needs to be studied.
TR: MD. Senior medical officer in the City of Trondheim
HG: MD, PhD. City Executive for Health and Welfare Services in Trondheim and Adjunct Associate Professor at Department of Public Health and General Practice, NTNU
AS: Sociologist, PhD. Professor at Department of Public Health and General Practice, NTNU
OS: MD, PhD. Professor at Department of Neuroscience, NTNU and head of Department of Geriatrics
AGM: MD, PhD. Professor at Department of Public Health and General Practice, NTNU and consultant at Norwegian Health Net.
Chronic obstructive pulmonary disease
The project described in this article is funded by the Research Council of Norway. Investigator salary support is provided through Department of Public Health and General Practice, Norwegian University of Science and Technology. We thank Linda Allan Blekkan, who has given valuable feedback on English formulations.
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