Effects of a multifaceted teleguided pain care programs in patients with cancer * pilot study

The prevalence of pain in patients with cancer is high (59% in patients on
active treatment, 64% in patients with advanced disease, 33% in patients who
had been cured). Pain has an enormous impact on functioning of patients and may
results in anxiety and depression. According to the three step WHO pain ladder
and national guidelines, adequate symptom relief should be accomplished in
70-90% of patients with cancer. At present though, adequate pain control is not
being realized in 50% of the patients. Factors related to ineffective pain
management in the outpatient situation are identified on the level of the
organization, the health professional and the patient. Shortcomings in current
pain control, together with developments in demographics and health care,
necessarily imply that outpatients have to be involved more closely in their
own pain management.

The aim of this pilot study is to provide insight into the technical
functioning, usability, acceptability, comprehensiveness, and feasibility of
the telemonitoring intervention and care organisation, for both patients as
well as participating health professionals (nurses, treating physicians and the
multidisciplinary team). Based on the findings from the pilot study the
telemonitoring intervention and care organisation will be further improved.
After the pilot study and subsequent adjustments a large scale intervention
study is planned.

The eventual aim of the intervention and large evaluation study is to support
patients in self-management of their cancer (treatment) related pain. The
intended result of monitoring, feedback information, education and interaction
is more self management and eventually lower pain intensity scores.

This pilot study will be carried out in the regions of Maastricht Heuvelland
and Oostelijk Zuid Limburg, surrounding the MUMC+ and Atrium MC. Patients will
participate in the study for four week. At baseline, the nurse and researcher
will visit the patient at home to carry out a pain anamnesis and to explain how
the tablet-pc should be used. Halfway and after finishing data collection, the
researcher visits each patient once more for a semi-structured interview.

The system consists of 1) a web-application or the pharmacist to enter and
change medication prescriptions; 2) a tablet-pc-application for the patient in
order to monitor pain, symptoms and medication use; 3) a web-application for
the nurse to monitor and analyse patient data; and 4) a web-application for the
treating physician to provide insight into the monitored data of their own
patients and to interact and exchange information with the nurse. This system
is embedded in a health care organisation in which health professionals
involved communicate and cooperate to established optimal pain treatment for
their patients. In this pilot study only the tablet-pc-application for the
patients as well as the web-application for the nurse will be tested.

Patient application: By means of a tablet-pc patients fill out twice daily a
number of questions about their pain (pain at this moment, number of pain
attacks, worst pain), other symptoms (including nausea, dizziness and
constipation), satisfaction with pain treatment, changes in prescription and
activity/sleep. In addition patients are requested to tick off medication that
is presented in an overview per point in time. The monitored data are sent
secured to the server. From that point the patient is provided with feedback
information (graphs) that provides them insight in their own situation.
Education is part of the intervention as well. During participation in the
study the patient receives education topics several times about: causes of
pain, treatment of pain, medication facts and fiction, recognition of symptoms
that require action, and methods that patients themselves can implement to
control their pain and other symptoms. The education is based on and tested
during previous studies (ref). Patients might pose questions or remarks for the
nurse, a kind of e-consult.

Nurse application: The nurse receives a translation of the data as well. He or
she will enter the web-application by use of a log in name and password once a
day to monitor and analyse the pain and medication data. With help of a
decision support system, by orderly presenting and the use of collared flags,
nurses have quick insight into which patients need their attention and action
or posed a question or remark. When needed nurse interventions can be applied
(feedback and advise by means of the tablet-pc, consultation by telephone,
consultation with pain doctors or advise to the treating physician to switch
medication). In the pilot study the nurse is responsible for keeping the
medication overview of the patient.

The risk that is associated with participation is minimal because the current
situation of the patient will be starting point for fine tuning the pain
treatment. The daily monitoring of patients could result in patients being
focused and possibly anxious by getting insight into their own situation. The
nurse will take care of this. The benefit that opposes the burden mentioned
above is that participants possibly get a detailed insight into their own
course of pain and the relation between this course of pain, their medication
use and their sleep / activity patterns. By means of the intervention,
eventually patients are better able to cope with their pain and other symptoms
more adequately. Furthermore pain treatment can be fine-tuned better and
faster, by daily monitoring and assessment. Eventually pain intensity scores
should be lowered.