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Table 1 Study characteristics

From: Peer support for carers and patients with inflammatory bowel disease: a systematic review

Study ID Population (disease duration, mean [SD]) Age mean
(range or SD)
Sample size Intervention Components Settings/
mode of delivery, structure
Comparator Outcomes Study design
Group-based interventions:
Patient education + peer support
Berding 2017 [34] Outpatients with long-lasting IBD
(Intervention group = 10.9 years [10.8]; Waitlist group = 9.6 years [8.9])
Intervention
39.6 (13.2)
Control
40.1 (12.3)
207 Education programme covering both medical and psychological aspects
Medical sessions: held by physician specialists providing information on IBD (e.g. anatomy, epidemiology, clinical aspects, diagnosis and therapy)
Psychological sessions: held by psychologists using patient-centred approach, with participants being encouraged to exchange experiences, ask questions and present individual coping strategies and self-management skills
IBD referral centres/group-based, 1 weekend, 15 participants per batch (16 batches),
medical modules lasted 8 h, psychological modules 3.5 h
Waiting group HRQoL, anxiety, depression, disease activity RCT
Reusch 2016 [35] Inpatient rehabilitants with IBD
(12.8 years [10.5])
43.4 (11.0) 540 Education programme covering medical and psychological modules
Medical modules: delivered to large open groups in lecture format by gastroenterologists, providing information on IBD (e.g. anatomy, diagnostic, treatment options). Patients had time to ask questions
Psychological modules: delivered in small, closed groups by psychologists using patient-centred approach designed to encourage participants to share their personal experiences about how to best cope with the disease. Patients discussed ways of coping with feelings of anxiety and role-played self-confident communicative behaviour in common difficult social situations
Rehabilitation centres/group-based, eight modules of 1.5 h each, with five medical modules and three psychological modules Education programme with same medical modules
Psychological modules were lecture-based (no interactive approach)
HRQoL, anxiety, depression Cluster RCT
Oxelmark 2007 [36] People from IBD-outpatient clinic
(Intervention group = 4.6 years, range = 1–11); control group = 5.2 years, range = 1–10
Intervention
36.3 (18–71) Control
38.5 (21–59)
46 Group therapy held in unstructured way, but with a certain guidance and special theme to start every session (psychological reactions, receiving information of the diagnosis, coping). The group members had the chance to express their reactions and emotions
The medical social worker and psychotherapist took notes during the sessions, which were discussed at the next group therapy session
The lectures comprised information and education about the diseases and included time for questions and discussions
IBD-outpatient clinic/group-based, 9 weekly sessions for 3 months circa, lasting 1/2 h On demand medical and psychosocial/psychological treatment HRQoL RCT
Oliveira 2007 [37] People with IBD
Supported group = 108.7 months [71.5]
Median (range) Intervention
44.5 (19–63)
Control
38 (18–53)
39 Support group delivered by health professionals experienced in dealing with groups, aimed at facilitating and stimulating discussion about the problems and concerns of patients with IBD (e.g. ostomies, surgery, relation to cancer, diet). The meetings aimed mainly to place individuals who shared the same concerns and difficulties side by side. The meetings provided information on the rights of patients with chronic diseases and debated issues related to IBD that could be of interest to the patients Primary Health care Unit/group-based, programme run on a monthly basis for about 18 months Regular treatment HRQoL RCT
Krause 2003 [39] People with IBD, members of an existing self-help group
(Disease duration not reported)
(25–45) 38 Programme aimed at (1) promoting sharing of experiences, emotions, and information regarding the illness, (2) providing information about the psychosocial processes associated with the disease, (3) providing training on mutual social support strategies and coping with stressful events, (4) providing information about the illness One day per month lasting 2.5 h Control group not participating to any group or equivalent activity Quality of life Non-randomised controlled trial
Haapamäki 2018 [40] Inpatients with IBD
(7.9 years, range = 1–37)
43.4 (21–65) 195 Adaptation courses aiming at reducing the impact of the illness on the patient’s working capacity and their mental, physical, and social functioning
Participants are provided with adequate information on the disease and specialist support
Peer support aimed at encouraging towards a healthy lifestyle and adequate physical exercise
Rehabilitation centres/group-based, SII adaptation courses: 10–12 days, divided into two periods separated by 4–6 months
Patient organisation’s adaptation courses: shorter in duration (usually 5 days in one period)
NA HRQoL, depression Before-and-after study (observational)
Szigethy 2009 [43]) Adolescent girls with IBD + their mothers
(Disease duration not reported)
14.5 (2) 12 Education programme (topics included: exercise, diet, stress management, intimacy) concluding with a question-and-answer period facilitated by group leaders/gastroenterologist. Mothers and daughters socialized over dinner for the first hour of each group meeting. Girls and mothers were then separated to allow each group to ask questions independently to the guest speaker, group leaders, and each other. This was followed by discussion between mothers and daughters Local community centre/group-based, 10 months NA HRQoL Before-and-after study
Arenas 2018 (CA) [44]) Adolescents with IBD
(Disease duration not reported)
(13–17) 8 Multidisciplinary programme delivered by 2 paediatric psychologists and a paediatric dietitian, and focused on emotional issues and nutritional aspects NR/group-based, 6 weekly sessions NA Anxiety Before-and-after study
Group-based interventions:
Self-management programme
McDonnell 2014 + Forry 2013 [38, 47, 48] People with IBD with no active flare
(Disease duration not reported)
NR 53 Self-management programme aimed at enhancing participant self-efficacy through the use of weekly action planning and feedback, modelling of behaviours, group problem-solving and a range of cognitive strategies. Opportunity to meet others with the same condition as themselves. Some co-facilitators were people with the disease to increase the level of empathy and rapport building between the group members Tertiary referral teaching hospital/group-based, weekly session for 6 weeks, lasting 2.5 h Waiting group HRQoL, anxiety, depression Non-randomised controlled trial
Zhang 2020 [33] Inflammatory bowel disease arthritis (IBDA)
(Disease duration not reported)
Routine treatment: 35.48 (4.96)
Narrative education: 37.22 (5.34)
Peer support 36.85 (4.58)
Combined narrative education and peer support: 38.46 (6.18)
132 Patients participated in online discussion groups (WeChat). Patients discussed and shared diseases, treatment and daily life, and comfort and ‘helped each other’. The online group contained doctors, nurses, psychotherapists, and nutritionists Patients’ questions were gathered and answered twice a week. The program lasted 6 weeks Routine education HADS, Polysomnography, Arthralgia numerical rating scale (0–10), Irritable Bowel Syndrome (y/n), Inflammatory factor serum levels RCT
Group-based interventions:
Psychosocial support
Shepanski 2005 [41]) Children and adolescents with IBD
(Disease duration not reported)
(9–16) 61 Summer camp with children of the same age living together along with several counsellors who were trained with information about IBD to understand their needs Children participated in group activities but not in formal IBD educational classes or group sessions to discuss their experiences
Informal conversations and sharing experiences among the campers and counsellors about their own illness were common
Summer campgrounds/group-based, 1 week NA HRQoL, anxiety Before-and-after study (observational)
Plevinsky 2014 + Plevinsky 2012 [42, 49] Children and adolescents with IBD
(Disease duration not reported)
15.33 (1.07) 25 Children camp
Campers participating in fun activities ranging from arts and crafts to sports. Camp was staffed with volunteer counsellors
Facebook group
Aimed at facilitating the continuation of the social interaction fostered by the camp experience. Participants were free to like, comment on, or create an unlimited number of original posts within the group
Summer campgrounds/group-based, 1 week (camp) + at least 2 months (Facebook group) NA HRQoL Before-and-after study
Day 2016 (CA) [45] Children and adolescents with IBD
(Disease duration not reported)
Median (range)
14 (10–18)
44 Campers undertaking a range of physical activities and group activities. No specific IBD-related educational activities were included. Children were supervised by volunteer leaders, many of whom also had IBD
Benefits thought to derive from mixing with people who are knowledgeable about the illness
Camp/group-based, 4 days NA HRQoL Before-and-after study
1:1 interventions:
In-patient peer support
Hashash 2016 + Regueiro 2016 (CA) [46, 50] Inpatients with IBD
(Disease duration not reported)
NR 677 IBD connect programme delivered by trained volunteer peer specialists that provide the patient and family with support and encouragement to reduce stress and fears, as well as educational materials that are individually tailored for the patient and their family. It serves as a channel to link patients to resources and the services Hospital-inpatient IBD service/1:1 programme NA Stress related to hospitalisation Before-and-after study (observational)
  1. Abbreviations: CA conference abstract, HADS Hospital Anxiety and Depression Scale, HRQoL health-related quality of life, IBD inflammatory bowel disease, NA not applicable, NR not reported, RCT randomised controlled trial