Compur. Sol. Med. Vol. 22. No. 3. pp. 201-205. Printed in Great Britain

1992 0

00104325/92 SS.OO+ .MJ 1992 Pergamon Press Ltd

A COMPUTERIZED DOCUMENTATION SYSTEM FOR CANCER PAIN MANAGEMENT UNITS STEPHAN

A. SCHUG,*~ DETLEV ZECHS and STEFANGRONDS

tDept. of Pharmacology and Clinical Pharmacology, School of Medicine, University of Auckland, Auckland, New Zealand and *Pain Clinic, Dept. of Anaesthesiology, University of Cologne, Cologne, F.R.G.

(Received

5 August 1991; in revised form 4 December 30 January 1992)

1991; received for publication

Abstract-A cancer pain management unit can benefit markedly from a well-planned documentation system for administrative and scientific purposes. This article presents the principles of such a computerized system based on relational data base programs. The described system has been used by the authors for the last seven years. The successful documentation of more than 1400 patients over treatment periods of up to 2 years has provided detailed administrative and scientific information. Patient documentation Cancer pain Patient administration Quality control

Data base

INTRODUCTION

Since 1983 the Department of Anaesthesiology, University of Cologne, Germany, has run a cancer pain management unit in cooperation with the Department of Surgery, funded mainly by the German Cancer Foundation. In the last 7 years over 1400 patients were seen, treated and repeatedly reviewed over a period of up to 2 years. The resulting immense amounts of data had to be organized and structured for various reasons. The concepts and techniques of diagnosis and treatment of cancer pain are relatively new. Their validity, efficacy and possible side effects as well as their applicability have not been well examined. Surveys of large numbers of patients and long-term follow-ups are especially lacking. Frequently the indications for specific interventions are based on personal experience and trends rather than on scientific research [l-3]. The large numbers of patients treated by our unit can provide valuable data for this purpose as soon as a reasonable standard of documentation has been achieved. Collected patient data can create an administrative problem if stored in the form of a standard free-text record, especially in the case of long-term patients under the care of different members of a team. A standardized set of records reduces the amount of collected papers and makes relevant data accessible to all members of the team in a wellorganized form. The storage of the collected data in a computerized data base also makes this data readily available in case of requests or for print-outs of patient histories. An appropriate system has been developed by our team and is described here. STRUCTURE

OF THE

In this system the collection oriented medical records [4]. purpose of data collection. This done by personnel not involved * Author to whom correspondence

DOCUMENTATION

SYSTEM

of patient data is based on the principle of problemInitially structured free-text forms were used for the resulted in multiple problems: the final coding had to be in the treatment of the specific patient resulting in a high

should be addressed. 201

S. A. SCHUGet al.

202

I

I

d Catheter

Catheter Form

%?r

Catheter Form 1..

Fig. 1. Organisational structure of the documentation

system.

error rate. Additional difficulties arose from indecipherable writing and a wide variability of terminology. Therefore the approach was changed to the immediate use of coded forms. These have to be filled in directly by the treating or examining physician. They are the only documentation of the treatment and offer space for additional free-text comments. For this reason an alphanumerical coding system was used which enables involved medical personnel to understand relevant information without formal decoding. The structure of the documentation system reflects the way a patient is normally treated by the unit (Fig. 1). The first assessment results in a form called “PATIENT”. This form identifies the individual patient and describes the initial findings, previous treatments and the pain diagnosis using 44 parameters. Each review appointment has to be documented by a form called “THERAPY” using 33 parameters with regard to efficacy of treatment, actual pain situation, changed findings and implementation of new therapies. The application of epidural or intrathecal catheter techniques is described in a form called “CATHETER” with technical details of the catheter using 9 parameters. The form “END” is used when the treatment is discontinued and describes the reasons for the end of therapy and the final outcome of the patient using 9 parameters. Each patient has only one “PATIENT” and one “END” form for obvious reasons. But an unlimited number of “CATHETER” and “THERAPY” forms may be used, depending on which treatment modalities were used and what follow-up assessments were made. “THERAPY” and “CATHETER” forms are numbered chronologically for each patient, while the link between all forms is a standardized patient number assigned to each individual patient. To follow strict German data protection laws and to avoid the implementation of complicated data access procedures, there are no other personal data stored beside this patient number. This makes the identification of individual patients by users of the system impossible. COLLECTED

DATA

The “PATIENT” form has to be filled in during the first assessment of the patient. Patient number, date of assessment, age and sex of the patient and the way the patient has been referred to the pain clinic have to be coded for organizational and statistical purposes. The medical data collected include the diagnosis of the tumour as an ICD code number [5], the staging of the tumour in the TNM classification [6] and its therapy.

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Psychosocial data collected includes knowledge of the patient about the disease, home care situation, family support, possible activities and mood. The pain diagnoses are coded following the classification system of the IASP [7] as well as following a more specific system used in the department to describe detailed localisation, type and aetiology of cancer pain. These descriptions are available for up to 3 pain sites and types per patient. The pain intensity and its daily pattern have to be rated by the patient on verbal rating scale (VRS) as well as on a numeric analogue scale (NAS score: O-100). If rating by the patient is not possible as for example in commatose patients, ratings by involved health personnel have to be inserted. Finally a careful assessment of the recent pain therapy before administration to the pain service is done using 10 parameters. These describe the drugs used, their dosages and methods of application, additional therapeutic interventions, efficacy and side effects of these therapies. The “THERAPY” forms are filled in after each new reassessment of the patient. They include information about where the patient was seen (e.g. outpatients clinic), the methods of pain relief used, their efficacy, the patient’s activity levels, mood and symptom control. If feasible a change of therapeutic approach has to be explained and new pain diagnoses to be described. The “CATHETER” forms collect data about each inserted catheter including its respective number, date, site and method of insertion, duration of catheter placement and catheter complications. The “END” form describes the background and reasons for finishing patient followup. There can be no further therapy necessary, transfer to other hospital, further treatment by other pain clinic or GP and, most often, death of the patient. In cases where patients died the “END” form includes data on the causes of death and post-mortem results. SOFTWARE

AND

HARDWARE

REQUIREMENTS

The use of multiple types of data sets for each patient was necessary to allow the system to adapt to the various therapeutic situations of our patients. The handling of these types of data sets requires a relational data base system. Only such a system permits relational operations for data retrieval and enables full use of the stored information. Without such a relational data base system, it would be impossible to undertake detailed data analysis. Commercially available data base systems which fulfil these requirements include Rbase System (Microrim Inc., Redmond, WA, U.S.A.) currently used by the authors, or dBase IV (Ashton-Tate, Torrance, CA, U.S.A.). These data base systems can be run on a personal computer e.g. XT-compatible with a minimum memory requirement obtained using a 10 MB hard disk drive. Better performance can be achieved using systems with faster processors. Relational operations with larger amounts of data may otherwise require long processing times. USE OF THE

SYSTEM

The system has so far been used to collect data on 1070 patients and 55 285 treatment days. The flexibility of the data base and its desired wide array of collected data enables questions to be answered using a totally different approach. Thus organizational and administrative data which can allow optimal resource allocation is easily available in addition to valuable scientific data. The data have been used to create the annual report of the pain clinic as well as to provide information to funding bodies about new research and treatment initiatives and to justify the use of personnel [e.g. 81. Beside these simple administrative procedures the high flexibility of the system also allows novel scientific studies to be developed:

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In the literature on cancer pain mangement studies describing the on-going treatment of patients are lacking. Those which are describing long-term follow-up are either not very detailed [9] or on a low number of patients [lo]. Our new approach of documenting patient treatment days in large numbers of patients was therefore promising. Already the use of a sample in an early stage of the documentation resulted in valuable data on changes of therapy over the course of time in 174 patients [ll]. This study mainly highlighted the value and feasibility of the WHO guidelines for cancer pain management and the changes in management with progressive disease. A totally different approach was used to examine the correlation between a certain tumour diagnosis, the resulting pain syndromes and their treatment. Such an examination on urological tumours has been published [12]. Investigations over the whole range of the over 1000 patients have recently commenced. A comprehensive summary of the collected data has been submitted for publication. The data has been assessed with respect to the use of specific drugs e.g. morphine [13] including dose ranges, dose changes and pharmacodynamics. Of great interest was the validation of the efficiency of therapy in specific stages of disease processes i.e. terminal patients [ 141. In retrospect the system has fulfilled the expected tasks, outlined in the Introduction, in an excellent way. Smaller problems, which became obvious after the initiation of the system, have been solved and some adaptive changes to actual needs had to be made. Overall the system, which required initially extreme effort and patience by all members of the pain clinic team, has functioned in the expected way and provided the expected detailed administrative and scientific information. SUMMARY In cancer pain management the concepts and techniques are relatively new and have not yet been adequately surveyed in large numbers of patients. To validate treatment options, but also to provide organizational and administrative information, a computerized documentation system was necessary. This article presents such a system on the basis of a relational data base program. Over 7 years, its use in documenting treatment of over 1400 cancer patients has shown its flexibility and clinical practicability. The structure of the system is based on an initial assessment form for admission, a form for each review of the patient, a form describing each catheter technique used in this patient, and a final form for the discontinuation of treatment. Therefore the documentation enables one to survey time frames of treatment, a relatively new, but promising approach in chronic pain management. The system has provided the expected detailed administrative and scientific information and has fulfilled these requirements; multiple scientific investigations would have been impossible without it. Acknowledgements-We want to thank all members of the Pain Clinic, University of Cologne, for their cooperation. Our special thanks go to U. Doerr, Th. Knopf, Th. Meuser and B. Stobbe. The editorial assistance of Rob Fry is also acknowledged.

REFERENCES 1. J. N. Ghia, The Multidisciplinary Pain Center. Kluwer, Boston (1988). 2. World Health Oreanisation. Cancer Pain Relief. WHO, Geneva (1986). 3. M. Bautz, M. Pfiigsten and M. Weber et al., Ein Patientendokumentationssystem fuer Schmerzkliniken und Schmerzambulanzen auf Basis vernetzter Personalcomputer, Der Schmerz 3, 140-145 (1989). 4. R. Klar, K. Waschke and J. Hildebrandt, Problem- and source-oriented medical records for a pain clinic, Medical Informatics Europe 84 Proceedings, F. H. Roger, J. L. Willems, R. O’Moore and B. Barber, Eds. Springer, Berlin (1984). 5. Znternationale Klassifikarion der Krankheiten (ICD). Kohlhammer, Stuttgart (1986). 6. International Union-Against Cancer, TNM Aflas. Springer, Berlin (1985). 7. H. Merskev. Classification of chronic pain, Pain 3 1 (1986). 8. D. Zech, S: A. Schug and S. Grond. S’chmerztherapie, Jahresbericht 1988 Station fuer Palliative Therapie, H. Pichlmaier and R. Zielinski, Eds. Koeln (1989). 9. V. Ventafridda, M. Tamburini, A. Caraceni et al., A validation study of the WHO method for cancer pain relief, Cancer 59, 850-856 (1987).

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10. V. A. Walker, P. J. Hoskin, G. W. Hanks and I. D. White, Evaluation of WHO analgesic guidelines for cancer pain in a hospital-based palliative care unit, J. Puin Symptom Manage. 3, 145-147 (1990). 11. S. A. Schug, D. Zech and U. Doerr, Cancer pain management according to WHO guidelines, J. Pain Symptom Manage. 5,27-35 (1990). 12. S. Grond, D. Zech, S. A. Schug, T. Meuser,

B. Stobbe and K. A. Lehmann, Schmerzdiagnose und Schmerztherapie bei malignen urologischen Erkrankungen, Akt. &of. 20,300-306 (1989). 13. S. A. Schug, D. Zech and S. Grond, Morphine dosages in the management of cancer pain, Puin 5, 361 (1990). 14. S. Grond, D. Zech, T. Meuser, B. Stobbe and K. A. Lehmann. Cancer pain relief in dying patients, Pain 5,355 (1990). About the AuthOr-STEPHAN ALEXANDERSCHUG was born in Hamburg, Germany, on 20 January 1957. He attended the Medical School of the University of Cologne from 1976 to 1981. After doing research in the area of pharmacokinetics, he received his M.D. degree from the University of Cologne in 1983. Dr Schug then joined the staff of the Department of Anaesthesiology of the University of Cologne, where he worked as an anaesthetic registrar and research assistant for five years. After a short period as a consultant in anaesthesiology at the same department, he became consultant anaesthetist at the Department of Anaesthetics and the Pain Clinic of Auckland Hospital. At present he is Senior Lecturer in Anaesthetics and Head of the Section of Anaesthetics in the Department of Pharmacology and Clinical Pharmacology of the University of Auckland. His research activities centre around the management of pain; he has published, together with some of the other authors, handbooks on cancer pain management and numerous other scientific publications. Dr Schug is a member of IASP, the New Zealand Chapter of IASP and the German Society for Anaesthesiology and Intensive Care Medicine, as well as the New Zealand Society of Anaesthetists.

About the Author-DETLEv

ZECH was born in 1950 and got his M.D. after medical education at the Universities of Ulm and Mainz in Germany over the years 1976-1983. He then joined the training programme in anaesthesiology of the University of Cologne and became a consultant in 1988. He is at the moment staff anaesthesiologist and Director of the Pain Clinic of the Department of Anaesthesiology of the University of Cologne. His research interests centre around cancer pain, with a special interest in quality of life assess, spinal opioids and neurolytic blocks. Dr Zech is a member of IASP, the German Society for Anaesthesiology and Intensive Care Medicine and a member of the Board of Directors of Europain, as well as a speaker of the working group on cancer pain of the German Chapter of IASP.

GRONDwas born in 1959 and got his M.D. after medical education at the University of Cologne over the years of 1979-1985. After a training in anaesthesiology at the Department of Anaesthesiology of the University of Cologne, he became a research fellow at this department in 1990. He is a member of IASP and the German Society for Anaesthesiology and Intensive Care Medicine. His research interests are clinical pharmacology, cancer pain, postoperative pain and documentation systems.

About the Author-STEFAN

A computerized documentation system for cancer pain management units.

A cancer pain management unit can benefit markedly from a well-planned documentation system for administrative and scientific purposes. This article p...
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