A web-based communication system for integrated care in cerebral palsy: design features,technical feasibility and usability

Abstract

We developed a secure, web-based system for parent-professional and inter-professional communication. The aim was to improve communication in the care of children with cerebral palsy. We conducted a six-month trial of the system in three Dutch health-care regions. The participants were the parents of 30 cerebral palsy patients and 120 professional staff involved in their care. Information about system usage was extracted from the system's database. The experience of the parents and professionals was evaluated by a questionnaire after six months. The system proved to be technically robust and reliable. A total of 21 parents (70%) and 66 professionals (55%) used the system. The parents submitted 111 questions and 59 responses, with a mean of 5 questions (range 1–17) and 3 responses (range 1–9) per parent. The professionals submitted 79 questions and 237 responses, with a mean of 2 questions (range 1–8) and 4 responses (range 1–23) per professional. Most parents (95%) and some professionals (30%) reported value in using the system, which ranged from efficiency and accessibility to flexibility and transparency. The web-based communication system was technically feasible and produced improved parent-professional and inter-professional communication. It may be especially valuable if frequent interventions or consultations about a child's care are required, involving complex care networks of different professionals and organisations.

Introduction

Chronic care often requires a complex care network of multiple professionals from different organizations. In such settings the patient-provider and provider-provider interactions can be disturbed easily by poor communication, with information passing inconsistently among providers and none of them having ‘comprehensive care knowledge’.¹ In the US national survey of children with special health-care needs, communication between doctors and other providers was found to be a particular area of weakness, with only 37% of parents reporting it as very good to excellent.² Failure of professionals caring for the same child to communicate with one another often leaves the parents as information intermediaries.³ This corresponds with our findings in the care of children with cerebral palsy in the Netherlands (Box 1), in which we identified various gaps in patient care communication, such as the lack of co-operation, not being sufficiently patient-centred, poor inter-professional information exchange leading to parents acting as messengers of information, and hesitation in making contact due to unfamiliarity with the professionals in the care network.⁴ 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 centres with paediatric facilities and the rehabilitation departments of all medium-sized and larger hospitals offer treatment on an outpatient basis only. For inpatient treatment, children can be referred to one of nine specialised, regional rehabilitation centres. Each year almost 7000 children are treated on an outpatient basis and about 400 on an inpatient basis.¹⁷ More than half of these children have been diagnosed with cerebral palsy¹⁸, an umbrella term for a group of motor disorders caused by a non-progressive lesion of the immature brain.¹⁹ 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 prevalence of cerebral palsy in the Dutch population is 1.51 per 1000 inhabitants, and is rising significantly: from 0.77 (1977–1979) to 2.44 (1986–1988), a trend which is in accordance with other studies.²⁰

Because the needs and problems of children with cerebral palsy can be complex, a variety of professionals from different organizations is involved in the provision of care. In the Netherlands, cerebral palsy patients aged 4–8 years are usually under the supervision of a rehabilitation physician in a (specialized) regional or academic hospital, which plays a coordinating role in the integral medical care.²⁰ At the age of 4 years, the children are either referred to ordinary schools (whether or not assisted by ambulant services) or schools for special education or specialized day-care centres. Children in ordinary education can often manage with outpatient visits combined with mono-disciplinary therapy.²¹ Schools for special education usually have close cooperation with the local rehabilitation centre and staff, taking part in multidisciplinary team conferences for treatment planning and evaluation.¹⁸ Specialized day care centres are usually supported by consultations with the rehabilitation physician.

Various recommendations have been made to improve patient care communication. The US Institute of Medicine has stressed the importance of effective use of information technologies and coordination of care across patient-conditions, services and sites.⁵ Web-based communication may enhance access and efficiency, but has been slow to diffuse into clinical practice.^6,7 One of the factors associated with this slow diffusion is the necessity to take into account the needs of users in the development process.⁸

We have applied a patient-centred approach, in which we translated the user needs identified in our previous study⁴ into a secure, web-based system for parent-professional and inter-professional communication in the care of children with cerebral palsy. The aims were: (1) to make communication more patient-centred; (2) to facilitate inter-professional contact and thereby reduce the need for parents to act as messengers of information; and (3) to increase network transparency and provide more insight about who is involved in patient care and communication.

Methods

Functional specifications were formulated for each of the three system aims, based on the needs of parents and professionals in three Dutch health-care regions.⁴ These specifications were subsequently translated into technical requirements, which formed the basis of the system prototype. The prototype was developed iteratively, integrating the feedback from parents and professionals. Its technical feasibility (i.e. robustness and stability) was assessed through parents' and professionals' feedback in helpdesk correspondence and information meetings (one in each health-care region, after about three months of system use).

Information about system usage was extracted from the system's database. The early experience of parents and professionals was assessed through a questionnaire after a six-month trial of use, focussing on the value experienced (using a Likert scale, from 1 = ‘no, not at all’ to 5 = ‘yes, definitely’). Any shortcomings or suggestions for improvement were requested in a free text area. In addition, we examined whether system use was related to the complexity of the child's care by comparing characteristics such as the number of professionals involved and the institutions of users and non-users.

Participants

In order to obtain data representative of Dutch cerebral palsy patients aged 4–8 years, we included three health-care regions in the Netherlands covering both urban to rural settings. A rehabilitation physician selected patients who were under annual supervision. The selection criteria were a diagnosis of cerebral palsy and age 4–8 years. Participating parents needed to have sufficient Dutch language skills to be able to use the communication system and complete questionnaires. Finally, at least three professionals (i.e. the child's rehabilitation physician, a physiotherapist and a school/day care professional) needed to participate in the study in order to have a sufficient network for communication.

In total 30 parent-pairs were included in the study, together with 120 professionals. Ethics approval for the study was not required, although both parents and professionals provided informed consent. They completed a baseline questionnaire, after which they received log-in details for system access. Of the cerebral palsy patients (mean age 5.7 years, range 4–8), 13 attended ordinary education (with or without ambulant supervision) and 17 visited special education/day care centres. The mean number of professionals per child was 8 (range 3–14), of which the mean proportion participating in the study was 81% (range 50–100).

Design features

The overall system aims, and corresponding functional specifications and technical requirements are summarised in Table 1. The system was developed on the basis of these design features, and comprised an open access part (a generally accessible website with project related information) and a secured access part, with password authentication, SSL encryption and retyping an alphanumerical code. After log-in, users could see the menu for administrators, parents or professionals.

Table 1

System aims and corresponding functional specifications and technical requirements

Aims	Functional specifications	Technical requirements
Patient-centredness	– enable parents to consult the professionals involved in their child's care when necessary	– overview of the child's care network in which parents can tick mark one or more professionals for consultation
	– enable professionals to consult parents when necessary	– overview of the child's care network in which professionals can tick mark the child's parents for consultation
	– enable consistency of information in the response provided to parents	– parents' assignment of one feedback-responsible professional for the consultation question
Inter-professional contact	– enable professionals to consult other professionals involved in the child's care	– overview of the child's care network in which professionals can tick mark one or more professionals for consultation
	– notify professionals as soon as they are consulted or responded to	– automatic email alerts with a hyperlink to the submitted question or response
	– enable inter-professional conference prior to feedback to parents	– submitted reactions from professionals only visible among involved professionals
Network transparency	– stimulate network contact over one-to-one interactions	– automatic copy of submitted question to other professionals in the child's network
	– enable network-wide insight in the consultations conducted
	– provide an up-to-date overview of which professionals are involved in the child's care network	– up-to-date overview of the child's care network, specifying names, specialities and affiliations of the professionals involved
General aims	– provide open access information about system aims and procedures	– generally accessible website with project-related information
	– warrant safe information exchange	– secure log-in with SSL-encryption and retyping an alphanumerical code
	– enable independent system administration and assistance to system users when needed	– administrator menu for registration of system users and helpdesk function
	– up-to-date information regarding personal details	– personal menu in which parents and professionals can edit their personal details

Results

The system proved to be technically robust and reliable. In the initial testing period, during the first month, some minor technical problems were solved. In the remainder of the six-month trial there were no further technical problems. The helpdesk was only consulted for support (e.g. user instructions, resending log-in data) and feedback (sharing experiences and suggestions for improvement).

System use

Of the participating parents and professionals, 21 parents (70%) and 66 professionals (55%) actively used the system by submitting one or more questions and/ or responses. Of the parents, the majority (n = 18) submitted both questions and responses, while 3 only submitted questions. Of the professionals, 34 only submitted responses, 26 submitted both questions and responses, and 6 only submitted questions. The parents' system use exceeded that of the professionals: 43% of the parents vs. 14% of the professionals used the system relatively often (in total ≥10 submitted questions or responses) and 40% of the professionals vs. 19% of the parents rarely used the system (in total ≤2 submitted questions or responses).

In total, parents submitted 111 questions and 59 responses, with a mean of 5 questions (range 1–17) and 3 responses (range 1–9) per parent. Of the 111 submitted questions, the rehabilitation physician was most frequently marked as responsible for feedback (in 41% of the 111 submitted questions), next to the physiotherapist, occupational therapist and teacher/ supervisor (marked in, respectively, 20%, 14% and 10% of the 111 submitted questions).

In total, professionals submitted 79 questions and 237 responses, with a mean of 2 questions (range 1–8) and 4 responses (range 1–23) per professional. The majority of questions were submitted by the physiotherapist (57%) and the majority of responses by the rehabilitation physician (35%) (see Table 2). Of the total number of submitted questions (n = 190) the purpose was primarily consultation or advice, followed by information sharing, monitoring and administrative purposes.

Table 2

Summary of submitted questions (n = 79) and responses (n = 237)

	Questions		Responses
	n	%	n	%
Physiotherapist	45	57	63	27
Teacher/supervisor	8	10	20	8
Rehabilitation physician	6	8	84	35
Occupational therapist	5	6	28	12
Pedagogue	4	5	5	2
Manufacturer of rehabilitation aids	3	4	7	3
Paediatrician	1	1	7	3
Neurologist	0	0	4	2
Specialist in mental retardation	1	1	2	1
Speech therapist	1	1	5	2
Social worker	1	1	5	2
Nurse	1	1	0	0
Creative therapist	1	1	4	2
Orthoptist	2	3	3	1
Total	79	100	237	100

Factors associated with system use

We compared the number of professionals and institutions between parents who used the system (21 parents) and parents who had not used it (9 parents). The mean number of involved professionals in the use group was 8.3 (range 5–13) compared to 5.7 (range 3–10) in the non-use group, a significant difference (P = 0.006). The mean number of involved institutions was higher in the use group (mean 4.1 range 2–7) compared to the non-use group (mean 3.7 range 2-5), although this was not a significant difference.

User experience

Of the 30 participating parents, 26 completed the questionnaire after the six-month trial period (response 87%). Of these parents, 6 indicated that they had not used the system, either due to personal circumstances (indicated by 1 parent), preference for other modes of contact (3 parents), lack of need or not having questions (2 parents) or computer problems (1 parent). Of the 20 parents who had used the system, the majority had used it regularly (40%) or occasionally (50%), and 10% had used it rarely. All but one (95%) indicated that they had found it valuable, ranging from accessibility (questions could be asked at the moment they arose) to efficiency (the whole network could be reached at once, avoiding fruitless telephone calls) and transparency (it was possible to obtain an overview of questions and answers). In contrast, one parent indicated that there was no need for web-based contact, because their child was treated in a day-care centre with very short communication links.

Of the 120 participating professionals, 105 completed the questionnaire (response 88%). Of these professionals, 46 indicated that they had not used the system, either because they had not received any questions (37 professionals), preferred other modes of contact (12 professionals), had no time (2 professionals), did not know how to use the system (2 professionals) or had problems with their computer (1 professional). Of the 59 professionals who had used the system, the majority had used it occasionally (44%) or rarely (42%), while 8% had used the system regularly. Of the 59 professionals, 32% had found the system valuable in their communication with parents. With respect to the inter-professional communication, 29% of the professionals had found it valuable. Like parents, the value related to accessibility (lower threshold for consultation), efficiency (faster contact) and transparency (being kept up-to-date between visits, and obtaining insight about other professionals' advice). In addition, some professionals also mentioned that by using the system they had contact with disciplines which previously were not actively involved in decision-making and that this yielded important information.

The shortcomings experienced by parents and professionals were related to:

Ease of use. This could be improved by simplifying the log-in procedure, expanding consultation options (e.g. attaching video files) and providing insight into the consultation process (e.g. providing reminders when questions are not answered);

Integration of the system in daily practice. The system should be linked with existing patient documentation to avoid fragmented information. In addition, some professionals expressed the wish to consult external specialists for second opinions regarding complex matters, a feature not supported by the system which only enabled consultation within the child's care network;

Target population. The system might be more valuable in younger age categories (early intervention period 0–4 years), given the frequent requirement for consultations to make a diagnosis, combined with the involvement of a scattered and changing network of professionals from different organizations. In addition, some parents proposed linking the system to an online support group.

Discussion

In order to develop a web-based communication system for the integrated care of cerebral palsy, we applied a patient-centred approach, translating the user needs which were identified in our previous study ⁴ into functional specifications and technical requirements. This approach allowed us to develop a web-based system geared to user needs and it represented a cost-effective design process.⁹ However, the differences in system use between parents and professionals emphasize the importance of involving the users in an iterative development, adoption and implementation process, applying continuous feedback.^10,11

The system was evaluated regarding its technical feasibility and usability, which is analogous to a staged approach for telemedicine evaluation.¹² During the trial, approximately two-thirds of the parents and half of the professionals used the system by submitting questions or responses. The proportion of non-users may seem disappointing but might be related to the inclusion criteria, because the majority of non-users indicated that they already had short parent-professional or inter-professional communication links (e.g. face-to-face, by telephone or by email) or the child's situation was relatively stable during the six-month trial, so that little consultation was needed. In line with this, we found that the complexity of the child-care networks was associated with the parents' use of the system: the number of professionals involved was significantly higher for parents who used the system. Based on this we hypothesise that the web-based system might be especially valuable in case of frequent interventions or consultations in the child's care across complex care networks involving multiple professionals and organisations. In these situations, advanced options such as video consultation services¹³ may also be worth considering.

The trial showed that ease of technology use could be improved. Tighter control on system use could be achieved by including automatic feedback or reminders.¹⁴ For optimum integration into daily practice, the system's communication should be linked automatically with existing patient records, something which is difficult to achieve in practice. Depending on the professionals involved, it will take time and effort to realise this.

In clinical use, the system proved to be robust and reliable. The actual system use varied considerably, between parents and professionals. Of the parents and professionals that used the system, 95% and 30%, respectively, found that it was valuable. For successful implementation in clinical practice, however, other aspects are important, such as user adoption and integration into daily health-care practice. Following Rogers' diffusion theory,¹⁵ our pilot study reflected the ‘innovator’ phase and based on the findings we now need to decide whether the service is ready to enter the ‘early-adopter’ phase. This seems to be the case for parents, but for the professionals it is less clear. Further development of the system for complex cases may be a condition for further diffusion.

According to a staged approach of telemedicine evaluation, early prototypes are evaluated on technical stability and user acceptance, whereas the evaluation of more mature applications focuses on clinical- and cost-effectiveness.^12,16 Thus for the next stage of the present work it is important to focus on clinical outcomes. Financing, policy aspects and legislation should also be addressed. The technical feasibility and positive reactions of the users, although differing between parents and professionals, merit further research into the clinical value of the service.

Footnotes

Acknowledgements

We thank all participating parents and professionals for their contribution to this study, especially Jules Becher (VU University Medical Centre), Karel Maathuis (University Medical Centre Groningen), Cathrien van Groningen (Roessingh Rehabilitation Centre), and Leendert Schaake and Jos Spoelstra (Roessingh Research and Development). We gratefully acknowledge the Johanna Child Fund, the Child Fund Adriaanstichting and the National Innovation Centre for Rehabilitation Technology for funding.

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