Understanding the Effectiveness of an Online Support Group in Enhancing Recovery Identity and Health-Related Quality of Life of Middle-aged and Older Ovarian Cancer Patients: A Randomized Controlled Trial
Phase: NA
Conditions: Ovarian Cancer
Sponsor: Shanghai Jiao Tong University School of Medicine

Understanding the Effectiveness of an Online Support Group in Enhancing Recovery 
Identity and Health-Related Quality of Life of Middle-aged and Older Ovarian Cancer 
Patients: A Randomized Controlled Trial 
Oct-16-2023 

Ovarian cancer poses challenges for middle-aged and older patients, impacting physical 
and self-conceptual aspects. A research gap exists on the impact of online support groups 
(SPs) on identity synthesis and Health-Related Quality of Life (HRQOL) for these 
patients. This research aims to understand the effect of a mobile online support group in 
developing a recovery identity and enhancing HRQOL among middle-aged and older 
ovarian cancer patients. Additionally, the research seeks to discern and compare the 
intervention effects between the online support group and a traditional offline support 
group. 
Intervention
            Inspired by SIMIC, we developed the theoretical framework of both the online 
support group and the offline support group which is illustrated in Figure 2. The 
intervention is designed with aim to prevent identity loss and foster a new identity for 
ovarian cancer patients to enhance health outcomes. Both interventions incorporate core 
features of education and peer support, with an added function for recording symptoms 
and emotions. With those core features will appear in offline support group in form of 
segment of the workshop, and will appear in online support group in form of function of a 
mobile health product. To ensure the usability of the online support group solution, the 
prototype designed carefully by following the Universal Design Mobile Interface 
Guideline Version 2 (UDMIG v2.0) for design tailored to the aging demographic (Ruzic 
et al., 2016).   
 
The experiment group (the mobile online support group)
            In the experiment group, participants studied the patient education materials that 
provided in both word content and video format by themselves. Weekly reminder was 
sent to remind patients to study one of the education materials. The video format 
education materials were presented and video recorded by the healthcare professionals 

which each last around 10 minutes. Inspired by the Group 4 Health workshop rooted in 
Social Identity Theory (Haslam et al., 2019), the educational materials of both online and 
offline support group, comprise four mandatory courses derived from scientific research 
on physical, emotional, and role management knowledge relevant to the rehabilitation of 
ovarian cancer patients (Graziani & Tsakos, 2020). These materials underwent a 
comprehensive review process involving researchers and healthcare professionals, 
including a head nurse, an attending physician from the in-hospital ovarian cancer 
department, and a registered psychological therapist specializing in geriatric psychology. 
This thorough review aimed to ensure the content's reliability and readability. The first 
class introduced the management of physical and mental symptoms, and the importance 
of role management. The second class facilitated the identification of existing group 
memberships. In the third and fourth classes, participants explored ways to enhance 
existing meaningful group memberships and acquire new ones, respectively.
            To nurture a sense of belonging and enhance peer support between patients, the 
online support group provided online community function to enables patients to share 
their daily feelings, activities, or questions. Patient interaction included replies, "likes," 
and private communication through the online chat room. System-generated invitations 
for posting was sent twice weekly to encourage regular engagement.
            The symptom recording feature aligned with the health-related quality of life 
questionnaire for ovarian cancer patients (QLQ-OV28) and assessed symptoms such as 
abdominal pain, loss of appetite, heartburn, hair loss, tingling or numbness in limbs, 
fatigue, gastrointestinal issues, constipation or diarrhea, night sweats, and skin problems. 
Patients recorded symptoms on a three-point scale ranging from "no symptoms" to 
"severe symptoms.” Emotional status was recorded on a five-point scale, ranging from 
"depression" to “happy.” Notifications prompt participants to complete symptom 
recording twice a week.
 

The control group (the offline support group)
            The offline support group shared similar functionalities with its mobile online 
counterpart. Weekly group interventions were conducted, each lasting for 1 to 1.5 hours. 
Participants in the control group were divided into two subgroups, each comprising 17 
participants. Patient education sessions were conducted during the initial 10 minutes of 
the workshop. Subsequently, participants were allotted approximately 4 minutes each to 
express their thoughts and concerns to health professionals and fellow participants. A 
hard-copy form was distributed to participants during the first session, where they were 
instructed to document their daily emotions and symptoms. Peers who delivered offline 
support group were healthcare workers who had completed deception in nursing or 
psychology
            
Measure 
Identity synthesis (primary outcome)
            The measure of recovery identity included the assessment of patients' acceptance 
of their illness identity and their self-esteem derived from their social identities. The 
acceptance of illness identity was measured using the Illness Identity Questionnaire's 
acceptance sub-scale, consisting of 6 items (Oris et al., 2016). The maintenance of former 
social identities was measured using the Maintenance of Group Memberships sub-scale of 
Exeter Identity Transition Scales (Haslam et al., 2008), encompassing 4 items. The new 
meaningful social identity was measured using the New Group Memberships sub-scale of 
the Exeter Identity Transition Scales, which includes 4 questions. Responses were rated 
on a scale from 1 to 5, with higher scores indicating a higher level of acceptance of the 
identity. The recovery identity is calculated as the sum of each average score of 
acceptance of illness identity, maintenance of former identity and new identity.
 
Health-related quality of life (secondary outcome)

            HRQOL was measured using the Short Form Health Survey 12 (SF-12) 
(Jakobusson, 2007), which includes twelve questions. Each item is transformed into a 
scale ranging from 0 to 100 according to a specific scoring algorithm. These scores are 
then aggregated to generate two summary scores: the Physical Component Summary 
(PCS) and the Mental Component Summary (MCS). The resulting scores are norm-based, 
comparing an individual's health status to population norms.  HRQOL is calculate as the 
summary of PCS and MCS. Higher scores indicate better HRQOL, with scores around 50 
representing the average. 
 
Participant Engagement
            In the experimental group, the peer support was calculated based on system-
recorded time spent on relevant pages, while health record and patient education 
involvement were gauged by the frequency of actions, encompassing symptom recording 
and engagement with educational materials. Conversely, in the control group, participant 
engagement was evaluated by calculating peer support based on session duration. Health 
record involvement was quantified by the number of symptom and emotion record 
entries, and patient education engagement was measured by the number of attended 
lessons.
 
Data collection and analysis
            Data collection occurred at three time points: before the intervention, immediately 
after the intervention, and at a three-month follow-up. Questionnaires were administered 
through a website link hosted on Sojump, and data were stored in Excel and analyzed 
using SPSS 26.0. The determination of the sample size involved a statistical power 
analysis, considering a two-sided test with a significance level (α = 0.05) and a desired 
statistical power of 80% (1-β). A minimum of 34 individuals per intervention arm was 
deemed necessary. 

Participant engagement was assessed through comparing the number of courses 
undertaken, average time spent on peer communication, and instances of health recording 
behaviors. The assessment of the intervention's impact on shaping participants' recovery 
identity and improving HRQOL involved comparing scores for identity synthesis and 
HRQOL before and after the experiment. 
T-tests or non-parametric test were employed to ascertain the significance of the 
observed changes, and for assessing the differences in intervention effects between 
groups. Additionally, Cohen!s d effect size representing the mean-level difference in 
scores between groups was calculated as the mean difference between interventions on 
each outcome divided by the pooled standard deviation. Regression coefficients and 95% 
confidence interval were measured through regression analysis to understand the 
difference in treatment effects. Associations between recovery identity and HRQOL were 
examined through Pearson correlation coefficients. Hierarchical regression analyses were 
conducted to evaluate the predictive value of demographic factors and recovery identity 
for HRQOL.