Do online support groups benefit people affected by a cancer diagnosis?

Abstract

BACKGROUND: Research has demonstrated the
potential value of patient reported outcome mea-
sures (PROMs) for detecting and monitoring health
related quality of life issues. Using appropriate
measures and providing staff training is essential.
We developed a chemotherapy specific PROM
(assessing symptoms/side-effects/emotional dis-
tress) for use during review consultations, along
with a PROMs doctor training session. A pilot
study evaluated the impact of the PROM and train-
ing on oncology consultations. AIMS: To report
preliminary results describing levels of:
•Emotional distress (ED) detected by the
PROM
•ED discussion during consultations
METHODS: A before-after design study with 3
oncologists (from breast/colorectal/gynaecology
services) was conducted. A minimum of 10 patients
per doctor were recruited before, then after train-
ing.Patients completed the PROM and ‘topics to
discuss’ checklist on touchscreens before consulta-
tions. Oncologists received the results graphically;
symptom/ED scores were coded red/amber/green
to denote severity.Consultations were audio-
recorded and analysed using content-analysis to
assess discussed topics and actions/advice provided.
RESULTS: 61 patient-consultations (31 pre-train-
ing/30 post-training) were analysed. Nineteen
patients (31.1%) reported severe/red ED scores, 6/
19 (31.6%) did not discuss ED during consulta-
tions. Only 9/61 patients (14.8%) specified wanting
to discuss anxiety/depression/worries with staff.
Patients raised ED issues more frequently than doc-
tors (61.3% vs 35.6%,
p
<
0.001). CONCLU-
SIONS: These findings highlight the complexity of
using PROMS for ED detection/management.
Although patients experience ED, many do not
specify wanting to talk about this during consulta-
tions- though they are more likely to raise issues.
Future analysis will explore the quality of ED
discussions and if doctor-training was associated
with improved management (referrals/advice)