The Dutch cancer information helpline: More critical patients after 10 years

Abstract

Objective

This study was conducted to assess the impact and evaluation of the Dutch national cancer information helpline and to assess differences in evaluation and impact with a comparable study conducted in 1994.

Methods

A cross-sectional survey was conducted among all callers from the target groups patients, friends/relatives and the general public who contacted the information helpline from December 2003 until March 2004 (response 59%; N = 665).

Results

All characteristics of the helpline (provided information, educator's communication skills, and telephone aspects) were evaluated positively by a large majority of the respondents. All groups evaluated the impact of the helpline on overall satisfaction, anxiety, and meeting expectations positively. However, the three target groups showed different predictors for the outcome measures.

Conclusion

It can be concluded that 10 years after the first study, callers are still very positive in their evaluation. However, the different characteristics of the helpline are nowadays slightly more negatively judged, particularly by patients. The installation of the voice response system (VRS) as well as the fact that people have more easily access to information about their disease might account for these differences in evaluation.

Practice implications

To maintain the positive evaluations helpline educators as well as the VRS need to attune more to the different needs and problems of the target groups and provide tailored information.

Introduction

Since 25 years, people in the Netherlands have the possibility to contact the information helpline of the Dutch Cancer Society. This helpline aims to increase knowledge about cancer and decrease taboos and fears concerning cancer. Trained oncology educators with a medical or paramedical background provide psychosocial support and information about cancer in a personal conversation, and people can receive written information (e.g. brochures). The helpline is open for the public during office hours and additionally can be contacted 24 h a day for ordering brochures. The primary target groups of the helpline are the general public, patients and family or friends of cancer patients. In 1994, a study evaluated the experiences and impact of this helpline [1]. Since the last study, the information helpline went through some changes. In order to more efficiently provide callers with information and support, a voice response system (VRS) was developed and installed in 1995. The VRS substitutes a part of the conversation between the caller and the educator, namely the introduction and the part where people can order information brochures. The present study was conducted in order to assess experiences and impact of the Dutch national cancer information helpline as well as assessing differences in evaluation and impact with the 1994 Study.

Information helplines can generally be divided in two groups. The most basic and least labour-intensive helplines use tapes with recorded health messages [2], [3], [4], [5], [6]. The function of these indirect helplines is to provide information and communication is directed only one-way towards the caller. Specific questions of the callers are not directly answered. Direct helplines use educators who can react directly to the callers’ questions and reactions, resulting in interpersonal communication [7], [8], [9], [10], [11], [12], [13], [14]. Besides providing general information, direct helplines also provide more personal and individualised information as well as psychosocial support. The Dutch information helpline is a combination of the two types; since 1995, the helpline uses recorded messages (VRS) as well as educators for more interpersonal communication.

Earlier studies on cancer helplines show that three major target groups can be distinguished, namely patients, relatives and friends of patients, and the general public. Cancer patients and relatives and friends are the largest groups [1], [7], [8], [13], [14], [15], [16]. The large majority of the callers are female, varying from 67% [5] to almost 80% [7], [13], [16], [17], [18]. The mean age is relatively low and is often inversely related to the age incidence of cancers [1], [13], [19]; i.e. although the cancer incidence rises with age, the mean age of the respondents is relatively low. Further, patients are highest in age and the general public has the lowest age [1], [15], [19]. People who contact information helplines are mostly more educated than the average population [1], [20], [21], [22].

Several studies evaluated helplines. Overall satisfaction with the helplines was reported by at least 90% of the respondents [1], [16], [18], [21], [22]. Lechner and De Vries [1] reported that most callers’ expectations were largely or completely met. With respect to the emotional impact of the call, research showed a decrease in tension and anxiety after respondents’ call to the helpline [1], [16], [18], [19], [20], [22]. Overall satisfaction was predicted by the callers’ evaluation of the received information and the communication skills of the educators [1], [16]. Lechner and De Vries [1] reported that for the general public and relatives/friends, the received information seemed to be the more important predictor, whereas for patients the communication skills was most important. Regarding the satisfaction of the caller's expectations, both communication skills and the received information were significant predictors for all target groups. Lastly, only the educator's communication skills could significantly predict the impact on anxiety for relatives/friends and patients. McGuire's Persuasion-Communication Theory [23] assumes that successful communication is dependent on several input factors within communication, which are also important concepts within the integrated model for exploring motivational and behavioural change (the I-Change Model) [24], [25]: the quality of the message or information, the channel or medium, and the source. Applied to the present study, the message includes the information about cancer provided to the callers; the channel or medium is the telephone and the sources of communication are the helpline educators with their communication skills. For the present study, the outcome of successful communication is defined as the overall satisfaction with the information helpline or a decrease in anxiety or concern.

The first purpose of this paper is to describe the differences between the three target groups (patients, relatives/friends, and general public) regarding the input factors (i.e. information, communication skills of the educators, and telephone aspects) and the outcomes (satisfaction, anxiety, and meeting expectations). The second goal is to analyse the extent to which the outcome measures for the three target groups are explained by the different input factors.