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Evaluating patient care communication in integrated care settings: application of a mixed method approach in cerebral palsy programs

J. Gulmans, M. M. R. Vollenbroek-Hutten, J. E. W. C. Van Gemert-Pijnen, W. H. Van Harten
DOI: http://dx.doi.org/10.1093/intqhc/mzn053 58-65 First published online: 5 December 2008

Abstract

Objective In this study, we evaluated patient care communication in the integrated care setting of children with cerebral palsy in three Dutch regions in order to identify relevant communication gaps experienced by both parents and involved professionals.

Design A three-step mixed method approach was used starting with a questionnaire to identify communication links in which parents experienced gaps. In subsequent in-depth interviews with parents and focus group meetings with professionals underlying factors were evaluated.

Results In total, 197 parents completed the questionnaire (response 67%); 6% scored negative on parent–professional communication, whereas 17% scored negative on inter-professional communication, especially between the rehabilitation physician and primary care physiotherapy (16%) and (special) education/day care (15%). In-depth interviews among a subset of 20 parents revealed various sources of dissatisfaction such as lack of cooperation and patient centeredness, inappropriate amount of information exchange and professional use of parents as messenger of information. Focus group meetings revealed that professionals recognized these gaps. They attributed them to capacity problems, lack of interdisciplinary guidelines and clear definition of roles, but also a certain hesitance for contact due to unfamiliarity with involved professionals in the care network.

Conclusions Parents particularly identified gaps in inter-professional communication between (rehabilitation) hospitals and primary care settings. Involved professionals recognized these gaps and primarily attributed them to organizational factors. Improvement initiatives should focus on these factors as well as facilitation of low-threshold contact across the patient's care network.

Keywords
  • patient care management
  • communication
  • health care evaluation mechanisms
  • chronic disease
  • cerebral palsy

Introduction

Many patients are not reaping the benefits of advances in clinical and behavioral interventions in chronic illness care [1]. The Institute of Medicine attributes this to the increased demands on medical care and the inability of the system to meet these demands because of poorly organized delivery systems and constraints in using modern information technology [1, 2]. In order to improve delivery of care, effective system changes are required. The Chronic Care Model [3] identifies essential elements for these system changes, which in combination foster ‘productive interactions’ between informed patients and proactive practice teams [4].

In chronic illness care, these interactions between patients and practice teams usually involve a complex network of multiple professionals from various organizations. The many interactions in these ‘integrated care’ settings can be easily disturbed by suboptimal communication, with information passing inconsistently among professionals (often via the patient) and none of them having ‘comprehensive care knowledge’ [5]. In addition, there may be different interpretations of responsibility. When no provider is identified as care coordinator, there is a risk that a professional may incorrectly assume that another is addressing a particular patient concern while, in fact, it remains unattended [6, 7]. To assure continuity of care, it is imperative to identify communication gaps in order to implement targeted improvement initiatives.

However, available assessment methods are often not appropriate for integrated care settings, as usually only one communication link (e.g. general practitioner–hospital specialist) or one evaluation perspective (e.g. the perspective of professionals) is taken into account [8]. Moreover, most studies rely on either quantitative- or qualitative methods, obtaining either general/population based data, or in-depth qualitative data derived from small samples.

In view of these shortcomings, we developed a three-step mixed method approach for evaluation of patient care communication in integrated care settings, which takes into account the inherent communication links and evaluation perspectives [8]. In this study this approach is applied to the complex integrated care setting of children with cerebral palsy (Box 1), with the aim to identify relevant gaps in patient care communication from both the perspective of parents as well as involved professionals.

Methods

Study population

In order to obtain data representative for the Dutch population of cerebral palsy patients aged 4–8 years, we included three care regions across the Netherlands covering both urban to rural settings (Table 1). The selection of patients was carried out by a rehabilitation physician, based on files of patients with annual supervision. Selection criteria were (i) diagnosis of cerebral palsy (confirmed by neurologist), (ii) age between 4 and 8 years (from the age of 4 diagnosis is mostly clear and (special) education becomes an additional communication partner in the care network) and (iii) parents with sufficient Dutch language skills (as determined by the rehabilitation physician) to complete the questionnaire and interview. The parents of the selected patients were approached for participation in the study by a written letter from their rehabilitation physician.

View this table:
Table 1

Selected care regions for the recruitment of the study population (RP=rehabilitation physician)

RegionGeneral characteristicsOrganization of cerebral palsy care (4–8 years)
A+/− 4 million inhabitants 15 hospitals (of which 3 academic) 5 rehabilitation centersMajority of cerebral palsy patients under RP-supervision of an academic hospital
B+/− 2.2 million inhabitants 12 hospitals (of which 1 academic) 2 rehabilitation centersMajority of cerebral palsy patients under RP-supervision of a merged academic hospital/ rehabilitation center
C+/− 600.000 inhabitants 4 regional hospitals 1 rehabilitation centerMajority of cerebral palsy patients under RP-supervision of a merged rehabilitation-/ special education center

Study design

For a detailed description of the methodology the reader is referred to our previous study [8]. Here we describe the subsequent steps that were followed in this study.

Identification of relevant communication links

To identify areas of improvement that are relevant to the setting as a whole, we focused on communication links that occur in the care of the majority of cerebral palsy patients. These were identified through a retrospective medical record review on the rehabilitation physician's incoming and outgoing cross-organizational correspondence [8]. We approached a rehabilitation physician in each region and randomly selected 63 medical records (21/region) of patients aged 9–12 years. Each record was reviewed retrospectively with respect to in- and outgoing letters during the age period 4–8 years, in which at least one of the listed senders/receivers was from another organization. Of these letters, all listed sender(s) and receiver(s) were imported in a database, thus forming an overview of communication links and their frequency of occurrence.

Box 1 Cerebral palsy care in the Netherlands

In the Netherlands, paediatric rehabilitation services are delivered in both inpatient- and outpatient settings. The 23 national rehabilitation centers with paediatric facilities and the rehabilitation departments of all medium-sized and larger hospitals offer treatment on an outpatient basis only [24]. For inpatient treatment children can be referred to one of nine specialized, regional rehabilitation centers. Each year 9000 children are treated on an outpatient basis and 300 children on an inpatient basis [25]. More than half of these children have been diagnosed with cerebral palsy [24], an umbrella term for a group of motor disorders caused by a non-progressive lesion of the immature brain [26]. Impairments in posture- and/or motor function can be accompanied by various forms of co-morbidity such as mental retardation, psychosocial problems, epilepsy, visual-, hearing- or speech impairments. The Dutch population prevalence of cerebral palsy was calculated as 1.51 per 1000 inhabitants, rising significantly over time: from 0.77 (1977–79) to 2.44 (1986–88), a trend which is in accordance with other studies [27]. Because the needs and problems of children with cerebral palsy can be complex, a variety of professionals from different organizations are involved in the provision of care. In the Netherlands, cerebral palsy patients aged 4–8 years usually are under supervision of a rehabilitation physician in a (specialized) regional or academic hospital, which plays a coordinating role in the integral medical care [27]. At the age of 4, the children are either referred to regular schools (whether or not assisted by ambulant services) or schools for special education/specialized day care centers. Children in regular education can often do with outpatient visits combined with mono-disciplinary therapy [28]. Schools for special education usually have close cooperation with the local rehabilitation center and staff, taking part in multidisciplinary team conferences for treatment planning and evaluation [25]. Specialized day care centers are usually supported by ambulant consultation of the rehabilitation physician.

Step I. Parent questionnaire

Relevant links were subsequently included in a parent questionnaire, developed on the basis of validated frameworks [9, 10]. The questionnaire consisted of two parts: the first containing 10 items on the importance of various communication aspects in general, the second containing six sections, each representing a different communication link and consisting of 15 items to get insight in the parents' experiences regarding this link over the past 12 months, using 5-point Likert-scales (‘no, never’ till ‘yes, always’). Negative scores on communication links (i.e. ‘no, never’/‘no, usually not’) were further explored in the subsequent step's in-depth interviews.

The questionnaire was sent with an accompanying letter of the rehabilitation physician, requesting to return within 2 weeks filled in or blank if not willing to participate. After 2 weeks parents were reminded by letter and after 4 weeks by telephone.

Step II. In-depth interviews with subset of parents

The subset of parents who experienced gaps was, after informed consent, approached for in-depth telephone interviews to identify underlying factors of ineffective communication using an adaptation of the ‘Critical Incidence’ approach [11]. Parents were asked to give examples of situations in the past 12 months in which they experienced gaps in communication. Each of these ‘critical incidents’ was subsequently explored in detail through structured questions. All interviews were audio-taped and transcribed afterwards. The examples of ineffective communication were subsequently scored by two of the authors [J.G. and W.H.H.], identifying underlying factors by means of a framework covering aspects essential for integrated care, based on the key elements of the Chronic Care Model [3] and quality of care aspects formulated by the Institute of Medicine [2], all listed in Table 2.

View this table:
Table 2

Quality dimensions used for in-depth interviews (as derived from quality frameworks [2,3,10])

Quality dimensionsOperationalization
Organization of careCapacityAvailability and accessibility of required people/resources
InfrastructureOrganizational structure of care/care pathways
Cooperation(Readiness) to cooperate with involved professional/parents
CompetenceKnow-how/skills/experience of involved professionals
Joint vision/policyInterdisciplinary guidelines/vision guiding patient treatment
Roles/tasks/responsibilitiesTransparency of- and agreement with individual- and mutual roles/tasks/responsibilities
Patient centerednessProviding care that is respectful of- and responsive to patient preferences, needs, and values
CoordinationOrganizational activities aimed at achieving the appropriate care on the appropriate place and time
Information (-exchange)ContentUnderstandabilityReceived information is clear and comprehensible for the receiver
RelevancyReceived information is relevant for the receiver
ConsistencyReceived information is not contradictory to earlier received information
CompletenessReceived information is complete
AccuracyReceived information is correct/free of error
ExchangeIndirect linksPath between two actors is mediated by one or more others
AvailabilityRequired information is present in concerning files
AccessibilityRequired information is accessible for those who need it
TimelinessRequired information is received in-time by those who need it
Appropriate amountRequired information is exchanged in an appropriate amount

Step III. Focus group meetings with involved professionals

Issues emerging from the interviews were used as input for the focus group meetings (one meeting per care region with 10–12 professionals) covering the various professional disciplines involved in the problematic communication links identified in Step I and II. The aim of the meeting was 2-fold: (i) corroboration of findings (do the professionals recognize the problems experienced by parents?) and (ii) completion of findings (which additional issues are experienced?). During the meeting, the professionals were confronted with the results of the first two steps and asked to respond, and subsequently to discuss additional communication challenges they experience in relation to these problems. The discussion was moderated by an independent chair and conclusions were reached on the basis of consensus. Integrating the results of the focus group meetings with those of the in-depth interviews concludes the three-step sequential design, yielding relevant aspects for targeted improvement initiatives.

Results

Relevant communication links

In total, 63 records (21 records/region) were reviewed. Within these records 962 letters were analyzed (mean 16 letters per record, range 1–39), resulting in 1733 contacts to- and from the rehabilitation physician. Table 3 shows the various communication links in these contacts.

View this table:
Table 3

Communication links to- and from the rehabilitation physician (RP, total 1733 contacts)

Communications linksTo RP (n = 591), %From RP (n = 1142), %
Teacher/Supervisor157
Surgeon1412
Rehabilitation physician128
Pediatrician1113
Physiotherapist118
Radiologist100
Manufacturer rehab. aids60
Neurologist68
General practitioner122
Health insurance18
Other professionals* (each <2%)125
CP patients' parents29
*Other (para)medical specialists and community health service workers100100

The table shows multiple senders and receivers, well illustrating the links in an integrated care setting, in which multiple professionals from various organizations are involved. In (rehabilitation) hospitals, the paediatrician, neurologist, (orthopaedic) surgeon, radiologist (as sender of information), physiotherapist and (colleague) rehabilitation physician were identified as the rehabilitation physician's most frequent communication partners. In primary care, the rehabilitation physician's most frequent communication partners were the general practitioner (only as receiver) and the primary care physiotherapist. For (special) education and day-care centers, these were the teacher/supervisor (primarily as sender) and physiotherapist. Other frequent partners were health insurers (as receiver of information), manufacturers of rehabilitation aids (as sender) and parents of cerebral palsy patients (primarily as receiver of information).

Step I. Parent questionnaire

All links in Table 3 were included in the subsequent questionnaire, which was sent to the parent-pairs of 296 patients (in the remainder indicated as ‘parents’). Of the 197 parents that completed the questionnaire (response rate 67%), 88% were female. The main reasons for non-response were lack of time or personal circumstances. As can be seen in Table 4, overall scores were quite positive, with the majority of parents indicating that the parent–professional and inter-professional communication was good during the past 12 months. In comparison with parent–professional communication, inter-professional communication had more negative scores, particularly the inter-professional communication with the general practitioner, primary care physiotherapist and professionals of (special) education/day-care centers.

View this table:
Table 4

Parents' experiences with parent‐professional and inter-professional communication in their child's care (RP = rehabilitation physican)

‘usually/always’, %‘occasionally not’, %‘usually not/never’, %Nvalid
‘The communication between (involved professionals of) the {. . . . .}and us as parents was good during the past 12 months’
 Hospital84151180
 General practitioner8711297
 Rehabilitation center74215117
 Primary care physiotherapist9370105
 Health insurance75187184
 (Special) Education/ day care centre86140188
‘To my impression, the communication among our child's RP and (involved professionals of) the {. . . . .} was good during the past 12 months’
 Hospital78194171
 General practitioner66181685
 Rehabilitation center78183116
 Primary care physiotherapist642016103
 Health insurance84710146
 (Special) Education/ day care centre721315137

Of the parents that scored negatively on inter-professional communication with the general practitioner, the majority indicated that the general practitioner did not play a relevant role in the communication regarding their child's care, given the highly specific nature of their child's problems. Combined with the findings of the medical record review (i.e. the general practitioner as receiver of information, instead of sender), the communication with the general practitioner was not further explored in subsequent in-depth interviews.

Step II. In-depth interviews with subset of parents

Those parents with negative scores on the inter-professional communication with the primary care physiotherapist (n = 16 parents) and professionals of (special) education/day-care center (n = 21 parents) were included for in-depth interviews. As nine parents indicated problems in both links, in total 28 parents were approached. Of these, two refrained from participation due to personal circumstances and six indicated that although the communication among the involved professionals was not good during the preceding 12 months, they were used to act as intermediary and were satisfied with this solution. In the in-depth interviews among the remaining 20 parents, 11 parents reported gaps in the communication between the rehabilitation physician and primary care physiotherapist, 15 between the rehabilitation physician and professionals of (special) education/day-care center and 8 between these professionals and themselves as parents (Box 2).

Table 5 gives an overview of the factors identified. Overall, 60% of the experienced gaps was related to organization of care and 40% to information exchange. The main underlying factors were lack of cooperation and patient centeredness (parents constantly had to check up on agreements and progress or were confronted with professionals sticking to their view how things need to be done, not willing to take into account another professional's view) and inadequate information exchange between professionals, resulting in the necessity for parents to act as messenger between professionals.

View this table:
Table 5

Underlying factors of experienced gaps, as derived from in-depth parent interviews (RP=rehabilitation physician)

OverallRP-primary care physiotherapyRP-education/day care centreParent-professional communication
N = 171 problems, %N = 68 problems, %N = 69 problems, %N = 34 problems, %
Organization of careCooperation15122012
Patient-centeredness137735
Competence87612
Joint vision/-policy6476
Capacity6943
Infrastructure5940
Coordination4066
Roles/tasks/responsibilities4360
total60516174
Information exchangeAppropriate amount1519173
Indirect links1215133
Completeness53312
Timeliness4433
Consistency3610
Other factors* (each ≤1%)2116
Total40493926
  • *availability, accessibility, understandability and accuracy of information.

The underlying factors differ between the communication links; between the rehabilitation physician and professionals of (special) education/day-care center, lack of cooperation was particularly evident (20% of the problems), whereas between the rehabilitation physician and physiotherapist, capacity, infrastructure and consistency of information were problematic issues.

Step III. Focus group meetings with involved professionals

The focus group meetings with involved professionals showed that professionals recognized parents' experiences with lack of cooperation, especially in the communication between hospital and (special) education/day care center. They primarily related this problem to the lack of inter-disciplinary guidelines and clear definition of roles, tasks and responsibilities. Diverging views among professionals might account for the experienced lack of consistency in information exchange between the rehabilitation physician and primary care physiotherapist. However, this is partly inevitable as the frequency of patient contacts varies considerably among professionals; for example, the rehabilitation physician generally checks on the patient once or twice a year, the primary care physiotherapist once a week.

The lack of inter-professional information exchange was particularly recognized in the communication between hospitals and the periphery. Apart from capacity problems it was also attributed to the fact that it is often unclear which professionals are involved in the network around a child. In addition, professionals mentioned a certain hesitance to contact professionals with a different background or -focus; rehabilitation physicians said they practically never contacted professionals from regular education, only ambulant supervisors from special education that support regular education. Related to this, professionals confess they are regularly inclined to ask parents to act as messenger of information (‘then you know for sure that it reaches the right person in time’). They recognized, however, that some parents experience this messenger role as a burden, especially when entrusted with communicating oral messages, which due to medical/technical terms are easily misunderstood.

Discussion

In this study, a three-step mixed method approach was applied to evaluate communication gaps in the integrated care setting of children with cerebral palsy. From the parent perspective, most frequently experienced problems were lack of cooperation and patient centeredness, inadequate information exchange among professionals and the necessity to act as messenger of information between professionals. From the professionals' perspective, these problems were recognized and related to lack of interdisciplinary guidelines and clear definition of roles, capacity problems, lack of network transparency and a certain hesitance for contact with professionals with a different professional background.

These results are relatively consistent with findings in literature. Stille et al. [12, 13] found various gaps in the communication between paediatric specialists and primary care paediatricians, such as frequent failure or inability to contact each other and difficulties in keeping all providers informed. In a recent study [14], Stille et al. compared the views of parents, primary care paediatricians and specialists regarding the perceived responsibilities of parents acting as information intermediaries. One-third of the parents reporting to be the primary communicators between their children's' physicians, felt uncomfortable in that role. On the other hand, as long as professionals do not depend on it, the messenger role can be positive, as parents can put the message into the context of the child, thus providing ‘whole care knowledge’ which adds to the provision of ‘whole-person care’ [5].

Box 2 Citations of gaps experienced by parents

- “After visiting my daughter's new school, I had the impression something was wrong with her chair. Upon asking the occupational therapist indeed the chair and other things had to be adjusted. […] I am constantly on top of things, but what about children with less assertive parents?”

- “When we finally got a walking aid for our son after a long tedious administrative process, the school therapists could not reserve sufficient time to train our son with it. Despite our frequent instigation on more time investment, they did not spend more time in training, responding that it was a task of the therapists in the rehabilitation centre, which in turn said they had no time either”

- “Professionals should have direct contact with each other […] Now it all goes through us parents and we are not experts”

- “After Botox treatment, the rehabilitation physician advised physiotherapy 5 times a week. At school however, this frequency turned out to be unfeasible and instead a lower frequency was deployed. The rehabilitation physician however did not get informed and only learned of it when confronted with the results”

- “Sometimes it feels like the garden first has to be overgrown with weeds before they are removed”

- “In our experience it depends strongly on the physiotherapist that is in place, which changes per school year. Our previous physiotherapist was very active and initiated personal contact with the rehabilitation physician. Although this was not the usual procedure, the lines were considerably shortened”

- “If you don't check up on it as a parent, the information will not arrive in time, or worse, does not arrive at all”

- “Our rehabilitation physician and physiotherapist disagreed regarding the use of braces; the first was in the opinion that it was ‘in no hurry’ and that the muscles ‘were still flexible enough’, the physiotherapist however warned not to wait with the measurement of braces until the muscles were fixed and stuck. As a parent you sit in between and that is very difficult: who should you believe?”

- “We constantly have to tell the same story over and over again. As if you come for administration, instead of advice on your child's care”

Comparing our findings with the Chronic Care Model [3] the experienced lack of patient centeredness relates to the concept of ‘self management support’, stressing the importance of a collaborative approach in which providers and patients work together to define problems, set priorities, establish goals, create treatment plans and solve problems along the way [4]. The experienced lack of inter-professional cooperation and -information exchange is linked with the model's health system level, emphasizing the need of agreements that facilitate data-sharing as patients navigate across settings and providers. These should cover the definition of roles and the distribution of tasks among team members, and the use of evidence-based guidelines for decision support in daily clinical practice [4].

By taking into account various communication links, evaluation perspectives and methods, the mixed-method approach presented in this study forms a comprehensive approach that can be applied to a broad range of settings in which multiple professionals from various organizations are involved. The question is whether this comprehensiveness does not come at the expense of feasibility in practice. A sequential design may be more time-consuming than the ‘concurrent design’ in which multiple forms of data are collected all at once [15]. On the other hand, a sequential design offers the possibility to first identify a subpopulation of relevant cases for subsequent in-depth evaluation. Moreover, it can also be applied in separate parts, dependent on the complexity of the studied setting and the existing information on quality of communication that is available. In some settings, problematic communication links may be already known, leaving in-depth patient interviews and/or focus groups with professionals to identify underlying factors.

In the literature various challenges are described regarding the integration of findings from various evaluation perspectives and methods [16]. Erzberger and Kelle [16] outlined two models of integration: the triangulation model (in which the purpose is mutual validation) and the complementarity model (in which the purpose is more complete understanding). In the present study, the purpose of each subsequent step was both corroboration as well as completion of findings. One should be aware however that convergent findings do not necessarily prove validity, as the findings can be biased for the same reason in the same direction [16].

Several observations can me made concerning the methodology used in this study. As a form of network analysis a medical record review was performed on the rehabilitation physician's in- and outgoing cross-organizational correspondence. Although it offered insight in the various links and differences across the regions, its focus was on only one node of a complex web of interconnections and it only included written correspondence. In addition informal communication might have been valuable, which could have been identified by methods like selected stakeholder interviews.

The medical record review revealed a one-directional communication between the rehabilitation physician and the general practitioner. The reason for this scarce communication can be 2-fold: either it is not necessary, or it is not carried out. The majority of parents reported that, given the highly specific nature of the problems, the general practitioner did not play a relevant role in their child's care communication. The communication with the general practitioner was thus not further explored but we cannot completely rule out the possibility that an important gap of communication was left out.

A new questionnaire was developed in the present study to evaluate parents' expectations and experiences regarding parent-provider and inter-provider communication as the various existing validated measures [1720] do not primarily focus on patient care communication nor discriminate between the various patient-provider and inter-provider interactions. Although no data are available on reliability or validity, the questionnaire was constructed using validated measures [9, 10] and frameworks.

To identify gaps, both parent–professional and inter-professional links were analysed. For parent–professional links, evaluation from the parents' perspective seems logical, whereas for inter-professional communication parents can only report on its ultimate effects on the child, albeit through indirect and probably incomplete impressions, which might have biased the results in a negative sense for these links. Besides, parents with insufficient Dutch language skills were excluded. This might also have biased the findings in terms of under-rating parent-provider communication problems. On the other hand, the questionnaire responses may have over-rated the level of parent satisfaction, as satisfaction scores on structured questionnaires may be substantially an artefact of the method of data collection [21, 22], indicating higher and more positive assessments than revealed through in-depth qualitative interviews.

Overall, the gaps identified in this study argue for improvements focused on cooperation and patient centeredness, inter-professional information exchange and organizational factors such as interdisciplinary guidelines and clear definition of roles and network transparency. An initiative that might be promising in this respect and that emerged from group discussions with professionals and parents is a secured platform on the internet, where parents can contact the network of involved professionals in their child's care and involved professionals can consult each other. In the literature, this idea of online communication to enhance access and transparency of care is gaining ground [23].

Acknowledgements

The authors are grateful to all participating parents and professionals for their vital contribution to this study. We especially thank MD PhD Jules Becher (VU University Medical Centre), MD PhD Carel Maathuis (University Medical Centre Groningen) and MD Eline van der Ziel (Rehabilitation Centre ‘Het Roessingh’) for their active collaboration and for sharing their knowledge of and expertise with cerebral palsy care. We also thank BSc Leendert Schaake (Roessingh Research & Development) for his advice and assistance regarding the database for the medical record review. We gratefully acknowledge the ‘Johanna Kinderfonds’ and ‘Kinderfonds Adriaanstichting’ for funding the research project and their cooperation and interest.

References

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