Patients’ use of digital pens for pain assessment in advanced palliative home healthcare

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Abstract

Background

Appropriate pain assessment is a necessary prerequisite for adequate pain control. A way to follow-up on the pain is to let patients use paper-based or electronic pain diaries.

Purpose

The aim was to explore and describe palliative home care patients’ experiences of assessing their pain by using a pain diary together with digital pen and mobile Internet technology.

Methods

A system for the follow-up of pain treatment was developed and evaluated by means of a qualitative cross-case content analysis. From December 2002 until September 2003 12 palliative patients, who initially assessed VAS pain  35 mm (VAS 0–100 mm), used the system. Patients reported their momentary pain intensity and the number of consumed extra doses of analgesics three times per day. Analysis data were collected from interviews with patients and spouses, questionnaires, medical records, and the system log.

Results

In spite of severe illness and difficulties in comprehending the technology and system intervention, patients found the pain diary and digital pen easy to use for pain assessment. Patients took a greater part in their own care and experienced an improved contact with their caregivers, which led to a sense of increased security. The medical records showed a quick response to variations in the patients’ health status by means of changes in medical treatment.

Conclusions

The pain assessment system for palliative patients using pain diaries together with digital pen and wireless Internet technology constitutes an effortless method and has positive influences on the care.

Introduction

For cancer patients in a palliative state a systematic assessment of pain is crucial [1], [2]. It is estimated that, worldwide, nearly 10 million cancer patients experience pain every day [3]. Cancer pain affects 20–50% of patients at the time of initial diagnosis and 55–95% of patients with advanced cancer [4]. In the revision of The American Pain Society's (APS) Quality Improvement Guidelines, the recommendations specify the need for prompt recognition and treatment of pain [5]. Australian studies performed by Lewis et al. suggest that very frequent measurements of pain should be taken if a full understanding of chronic pain is to be reached [6]. According to Stone et al. intensive assessment schedules (several times per day) of patients’ momentary pain capture pain variations during the day and allow the caregivers to describe the pain pattern over time [7]. Thus, there is a need for a more frequent collection of pain assessments in palliative care. However, pain assessment of older people is often complicated by sensory and cognitive impairment, motor loss, and communication difficulties [8]. Pain control means that pain is assessed and reported by the patient and acted upon and documented by the caregiver.

Palliative cancer patients receiving care at home are geographically separated from the healthcare-providing organisation, making pain control more difficult. To facilitate the patients in assessing and reporting their pain telecommunication and IT can be used. Such technologies can also facilitate the professional caregivers’ work with pain control in a more structured way. Several studies where patients have assessed and reported their pain have been performed earlier, including paper-based and/or electronic pain diaries [9], [10], [11], [12], [13]. Some of these studies point out the importance of letting the patients use a brief enough pain diary, which allows for a sufficiently frequent assessment [10]. Various mobile and handheld devices can be used for electronic pain diaries and the methodologies for using these differ from the use of traditional methods with paper-based diaries [14]. Digital pen technologies have been on the market and in use in different areas, such as healthcare, for a few years [15]. To our knowledge there were no earlier reported experiences using digital pen technologies in palliative home healthcare. We applied digital pen technology from Anoto™ AB [16]. This technology consists of the Anoto™ pattern, paper and printing, the digital pen, and the digital pen infrastructure. The technology makes use of ordinary paper, although with a printed close-to-invisible pattern read by a camera inside the digital pen. The digital pen looks, feels and functions as an ordinary ball-point pen, but the strokes made by the pen are recorded and can be transferred via wireless Internet technology to a server using the digital pen infrastructure.

The aim of this study was to explore and describe palliative home care patients’ experiences of assessing their pain by using a paper pain diary together with digital pen and mobile Internet technology. The overall research question for the study was “How will this new technology influence the patient's perception of pain control in advanced palliative home healthcare?”

Section snippets

Design and setting

Permission to carry out the study was given by The Regional Ethical Review Board in Linköping. A case study with cross-case content analysis of the material was performed [17], [18] by means of interviews with patients and spouses, ease-of-use questionnaire [19], medical records, and the system log. A case study means organising the data by specific cases for in-depth study and comparison [17]. Content analysis focuses on the subject and context, and it points out differences and similarities

Results

The cross-case content analysis of the material lead to the formulation of two categories with three subcategories, respectively, as described below. In the transcriptions, when the informants emphasized words or expressions, these are shown in italics below. Square brackets are used to make clear any allusions and pause times are shown with an ellipsis (…).

Discussion

A qualitative descriptive and explorative case study design with a cross-case content analysis approach was used with the intention of capturing palliative home care patients’ experiences of assessing their pain by using a pain diary together with digital pen and mobile Internet technology. Trustworthiness in terms of credibility, dependability and transferability will be discussed. Credibility was achieved by using a reliable method and by using all available data from all 12 participating

Conclusions and implications

This study showed that the patients’ experiences of using digital pen technology and pain diaries for pain assessment in advanced palliative home healthcare comprised:

  • an increased and improved contact with the caregivers,

  • an increased participation in one's own care,

  • a sense of increased security, and

  • easiness in using the equipment in spite of severe illness and difficulties in comprehending the technology and system intervention.

The medical records revealed that there had been a quick medical

Acknowledgements

We would like to thank the patients in the study and their spouses, and also personnel from the HBHC clinic in Linköping, for their co-operation in this study. This research was funded by the Swedish Agency for Innovation Systems, the Swedish Research Institute for Information Technology, the Knowledge Foundation, and the Vardal Foundation.

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