CN4 - Enabling patient empowerment through digital symptom monitoring

Background

Patient reported outcomes (PROs) are the golden standard for monitoring symptoms in cancer care and have shown great clinical benefits to patients. New technology enables electronic PROs to be used in clinical practice also with an intent to empower patients and involve them more actively in their treatment. This study aimed to pilot a questionnaire for investigating the ability of ePRO monitoring to enable empowerment of patients with active anticancer treatment.

Methods

Based on the validated Cancer Patient Empowerment Questionnaire (CPEQ) we developed a shorter and more practical questionnaire with eleven questions including intrapersonal, interactional, and behavioural components of patient empowerment. Responders were cancer patients, most receiving palliative treatment for metastatic disease, monitored with an ePRO tool by Kaiku Health as part of their standard of care at a central hospital in Northern Norway. Responses were scored on a Likert scale from 1-5.

Results

Out of 58 patients, 46 (79%) returned the questionnaire in the first round, and 37 (67%) responded in the second round two weeks later. The mean total scores were 3.7 and 3.8, respectively. The patients reported the importance for them to manage their challenges, have a feeling of control, and participating actively in decisions, treatment, and follow-up of their illness to a high degree (mean score 4.2). With mean scores of 4.1 and 4.2, the ePRO monitoring provides patients with a feeling of being listened to/taken seriously and supported their ability to contact healthcare professionals when in doubt or having questions or concerns. There were no significant differences in scores due to age, gender, cancer type, treatment, or length of using the program. A Cronbach Alpha of 0.9 and an interclass correlation coefficient of 0.87 indicates good internal consistency. Test-retest shows good reliability with Pearson’s correlation of 0.66.

Conclusions

Cancer patients report that it is very important to them to be in control and actively participate in matters concerning their illness and treatment. Digital monitoring with ePRO enables empowerment by providing a channel to contact healthcare professionals when needed, and a feeling of being listened to and taken seriously.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

Oncology research group at Nordlandssykehuset HF, Bodoe Norway.

Funding

Has not received any funding.

Disclosure

V.V. Kataja, L. Lang: Financial Interests, Institutional, Full or part-time Employment: Kaiku Health. All other authors have declared no conflicts of interest.