Introduction

Patient information centres provide information about disease, treatment, diagnostic procedures, social aspects and implications of disease to patients and in case of paediatric patients to their parents. Recent studies have shown that information leads to better coping, better disease control and fewer hospital appointments [3, 7].

Repeated medical information does not always imply that parents feel that they have received sufficient information about the condition as such and its implications [1, 2]. Parents are often dissatisfied with the information provided by the physician. They are often left with many unanswered questions. Even when provided with sufficient information, a common reaction to handle the fact of having a child with a (chronic) disorder is to seek additional information and gain extensive knowledge about the diagnosis [4] in an attempt to reduce uncertainty. Most parents find internet useful [5], but assessing the accuracy and reliability of information from the internet is difficult especially for those without appropriate skills. Unfiltered information can also lead to more questions and even anxiety. A majority of parents are in favour of personal assistance in finding information [6]. Patient information centres can support parents of paediatric patients with personal assistance and support in finding accurate and reliable information.

In The Netherlands, there are only a few information centres that are specialised in paediatric health (related) problems. Specialised information centres are important because the health information needs of (parents of) paediatric patients are clearly different to those of adults because various age-specific associations such as growth, development, education, behaviour and congenital diseases need to be taken into account. The aim of the study was to evaluate the question–answer service of the information centre of the Emma Children’s Hospital in order to determine the role of a specialised information centre in an academic children’s hospital and identify the appropriate resources for the service and potential positive effects.

Materials and methods

The information centre of the Emma Children’s Hospital AMC (EKZ AMC) is a specialised information centre that was founded in 2004. It was introduced as a patient information centre where paediatric patients, their parents, their relatives, healthcare professionals and other persons and institutions (for example school) involved with the patient can ask questions about all aspects of disease, diagnostic procedures, treatment and social aspects and implications. The information centre is situated in the paediatric clinic but is also open for requesters from the paediatric outpatient clinic, other non-paediatric departments of the EKZ AMC and requesters from outside the EKZ AMC.

The core of the centre’s activities is in the question–answer service. The information centre is open for questions 4 days a week. Questions are asked by visitors, by telephone, by e-mail or in writing. Every requester gets personal help to find the answer to the question asked. This personal help is provided by three (part-time) employees who together represent one full-time-equivalent (FTE) and three volunteers. The employees are a nurse with additional education in social work, a librarian and a pedagogic worker with special training in the area of patient education. For children, a special service is provided for the preparation of school papers and presentations.

The information sources used in the information centre are paper and digital information brochures from the EKZ AMC and other organisations. The information centre has its own book collection with medical books for non-professionals and children, a special online CD-ROM with quality-controlled medical, legal and social patient information developed by the national information centre for care, social security, law and legislation and well-being (ZWCD-online: http://2zw.host.diskad.nl/admin/login.asp?target=home), magazines from patient organisations, its own website (www.amc.nl/emmainfotheek) and medical literature. If necessary, a question leads to a thorough search through all of these information sources and the internet. All information is reviewed on quality with strict available quality criteria (www.amc.nl/emmainfotheek) and in case of reliability or accuracy issues by a specialist on the subject, before it is handed over to the requester.

We developed a computer database structure in MS ACCESS to prospectively evaluate the question–answer service which also serves as a case management system. It is used to follow requesters from the time they ask their question until the question is answered. It is also possible to search in old questions, answers and used search strategies.

The full-text question, main characteristics of the question (information content area) and the answer are registered during or immediately after the visit, call or e-mail. This provides a close approximation of questions asked. Twenty-eight information content areas were defined (Table 1) based on previously asked questions.

Table 1 Information content areas
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Characteristics of the requester (parent, patient, healthcare professional etc.) and information sources that are used are registered as well. To estimate the complexity of a question, the time it took to answer questions and the extent (fully, partly, not) to which we were able to answer the questions were registered by the employees. Information from the registration of the financial department was used to estimate the costs of the service.

We analysed all questions that were asked in the year 2007. Because individuals may have asked more than one question, we treated questions rather than calls, visits or e-mails.

Results

In 2007, 1,434 questions were received. An analysis of the requester characteristics (Fig. 1) shows that questions were mainly asked by parents (23.3%), healthcare workers (other than nurses; 16.5%), nurses (15.3%) and students (10.5%) and less frequently by physicians (6.9%), patients (5.1%) and relatives (5.1%). Requesters came from the paediatric clinic (53.3%), outside the EKZ AMC (31.2%), the paediatric outpatient clinic (7.1%) or other non-paediatric departments of the EKZ AMC (6.7%).

Fig. 1
figure 1

Requester characteristics

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Types of questions most often asked involved disease (20.2%) and treatment (13.0%). The frequency of other information content areas was less than 10%. A question could contain more than one information content area and thus could be classified to more than one group. Table 2 presents the frequencies and percentage of questions within each information content area.

Table 2 Frequency and percentage of questions within each information content area
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Table 3 shows the information content areas of interest for the different kinds of requesters. The information content areas that involved less than 1% of the questions are added to the information content area ‘Other’.

Table 3 Association between requester characteristics and information content area
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Questions about disease were asked relatively more by parents, patients and physicians. Patients often asked their questions to prepare for a school presentation or paper.

Questions about diagnostic procedures were asked relatively more by parents and relatives. Questions asked by nurses involved mostly development of information materials. Other healthcare workers like social workers and pedagogic workers asked especially questions about preparation, aftercare, social aspects and patient support groups and about disease and treatment as well. Relatives needed mostly information about the location of patients, departments or other facilities.

The following information sources were mainly used to solve the questions (Table 4): paper brochures developed by other organisations (30.9% of questions), books from the information centres own collection (14.1% of questions) and paper brochures developed in the EKZ AMC (13.5% of questions). Information acquired from the Internet was used in answering 8% of the questions. Questions were usually solved using several information sources so that the final percentage exceeds 100%.

Table 4 Information sources used to solve the questions
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According to the registration of the employees, we were able to fully answer 89.6% and partly answer 3.4% of the questions. More than half of the questions could be solved within 15 min with immediate answer, available information materials or other direct available information sources; 88.1% of questions could be solved within 30 min. More complex questions took more than 30 min to find an answer (11.9%) (Table 5).

Table 5 Time spent answering questions
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Total time spent to solve questions was between 232 and 529 working hours for one person. The three (part-time) employees together represent one FTE which represents a week of 36 h. Not taking into account vacations, holidays and absence because of illness, the total working period in 2007 is 1,872 h. The core activities comprise between 12% and 28% of the total working period.

Variable costs of the service for 2007 were approximately 3,900 euro. Fixed costs (mainly salary of staff) were calculated on 51,000 euro.

Discussion

This is the first report of analysis of activities of an information centre specialised in paediatrics. Analyses of requester characteristics show that parents are the main group to ask questions to our information centre. Patients on the other hand are only a minority (5.1%) of the requesters. This is mostly because most of our patients are young children. Of a total of 7,621 admissions and 13,085 first consults at the outpatient clinic, 5,648 (74.1%) and 8,774 (67.1%), respectively, were under the age of 10 years. However, only a few older patients visit our information centre by themselves, many of them (33.3%) gathering information for a school presentation about their disease or other hospital-related subjects. Possible explanations for the small number of patients are that they are being informed by their parents, are not interested in more information, that there is not enough connection with daily reality, like school and other activities of these children or because information about the information centre that is sent to every parent did not reach the older children. Improving information about the existence and possibilities of the information centre to children and improving the accessibility for children will need further research on information resources that have more connection with daily reality and activities of the children and other ways of communicating using, for example, SMS and MSN.

Our analysis of questions demonstrated a broad range of requests for information. As was expected, parents asked relatively more questions about disease, diagnostic procedures and treatment.

Most questions asked by physicians involved the information content area ‘disease’ as well. Knowing about the information need of parents and patients and in their duty to inform them properly, they collect readily available, good quality information to give to their patients.

Questions asked by nurses involved mostly questions about development of new information materials. In the EKZ AMC, they are the most important initiators and active participants in developing new information materials.

Other healthcare workers, like social workers and pedagogic workers, asked especially questions involving the information content areas preparation, aftercare, social information and patient support groups and information involving the information content areas disease and treatment as well. This can be explained by the supportive way these healthcare workers are involved with parents and patients.

Relatives needed relatively the most information about the locations of patients, departments or other facilities. This improper use of the facilities can be avoided by improving route information to wards and other facilities and to enable parents to provide adequate information to the relatives about the exact location of the patient.

In spite of the availability of many digital information resources, the need for paper information resources remains. Paper brochures developed by other organisations were used to answer 30.9% of questions. With the diversity in questions, it is impossible to develop our own information material on all subjects. Although the Internet is a rich source of information accessible to everyone, it is for many people very difficult to find good information and to assess reliability and quality of this information. The information centre of the EKZ AMC uses its own quality criteria (www.amc.nl/emmainfotheek) to assess information from the Internet, and in case of reliability or accuracy issues, a specialist on the subject is asked to review the information before it is handed to the requester. In 8% of the questions, information from the Internet was used.

According to our own registration, almost 90% of requesters were supplied with complete information. This information is biased because it reflects the opinion of the employees and not that of the requesters. For that, a customer survey is needed.

Most questions asked to our information centre were of low complexity. These are questions that can be answered immediately (0–5 min) or with available information material or easy accessible information sources (5–15 min). More than 10% of questions were complex or very complex questions in which it took much effort to find suitable information. Registration of questions is necessary to identify and anticipate on gaps in information. Improving the information centre’s information resources will probably not lead to less complex, less time-consuming questions because in a tertiary referral academic hospital, children with rare diseases are diagnosed and treated, and it is impossible to develop information materials for all of these diseases. Information centres need good search strategies, especially on the internet where a lot of information is available. Further evaluation of the complex questions and used search strategies is needed to find out in what way search strategies can be improved.

Variable costs of the service were low but the total costs including staff salary are rather large. On the other hand, supporting more expensive healthcare professionals at information provision can save time and reduce costs. If the additional information for parents and patients were to be given by medical specialists, the costs would be three times as high. Analysis of the cost–benefits was not an aim of this paper but is subject for further study. One FTE employee and three volunteers are sufficient to provide service to the current EKZ AMC patient population for 4 days a week, with only 12 days of closed hours because of illness or vacation.

Providing health-related information to parents, patients, relatives and other persons involved is time-consuming but, as earlier studies [3, 7] have shown, remains very important because of the positive effects on coping with disease and medical results. In The Netherlands, it is stated by law (Law on Medical Treatment Agreement (WGBO)) that patients and in case of paediatric patients their parents are entitled to information in understandable language about their disease, the treatment, the impact and dangers of that treatment and possible alternative treatment strategies. This information should be given by the care provider and, if wished by the patient, in writing (http://www.hulpgids.nl/wetten/wgbo-tekst.htm).

Despite provision of information by their physician or other healthcare professionals that treat them or their child and despite access to information on the Internet, parents and patients want more and more thorough information about all aspects of disease and social implications. This study has shown that a specialised information centre anticipates in an effective way on this information need with relatively simple resources by providing additional information to parents and patients and by supporting physicians and other healthcare worker with readily available information materials for their patients. Direct feedback about identified gaps in information to these professionals contributes to improvement of information providing at that level as well. A specialised information centre is therefore a valuable and affordable asset to an academic children’s hospital.