Table 1.
Informational needs.
| Information needs subcategory (n, %) | References |
|---|---|
| General information about IBD (n = 16, 21.33%) | (Molnár et al., 2010; Subasinghe et al., 2010; Conrad et al., 2012; Mukewar et al., 2013; Yoo et al., 2015; Khan et al., 2016; Pittet et al., 2016; Sephton et al., 2016; Wheat et al., 2016; Larsson et al., 2017; Niv et al., 2017; Cho et al., 2018; Wu and Zhong, 2018; Yu et al., 2019; Del Hoyo et al., 2020; Graffigna et al., 2021) |
| Etiology/Cause of IBD information (n = 20, 26.67%) | (O'Sullivan et al., 2000; Rezailashkajani et al., 2006; Molnár et al., 2010; Bernstein et al., 2011; Conrad et al., 2012; Wong et al., 2012; Mukewar et al., 2013; Viazis et al., 2013; Lesnovska et al., 2014; Becker et al., 2015; Pittet et al., 2016; Wheat et al., 2016; López-Sanromán et al., 2017; Restall et al., 2017; Martin-Fernandez et al., 2018; McDermott et al., 2018; Wu and Zhong, 2018; Daher et al., 2019; Casellas et al., 2020; Karadag et al., 2020) |
| Epidemiological and pathogenesis results in information (n = 4, 5.33%) | (Rezailashkajani et al., 2006; Berding et al., 2016; Pittet et al., 2016; Wheat et al., 2016) |
| IBD evolution and further course information (n = 8, 10.67%) | (Conrad et al., 2012; Mukewar et al., 2013; Lesnovska et al., 2014; Becker et al., 2015; Pittet et al., 2016; López-Sanromán et al., 2017; Martin-Fernandez et al., 2018; Casellas et al., 2020) |
| Symptoms/ clinical manifestations of IBD information (n = 21, 28.00%) | (Rezailashkajani et al., 2006; Molnár et al., 2010; Bernstein et al., 2011; Wong et al., 2012; Mukewar et al., 2013; Lahat et al., 2014; Lesnovska et al., 2014, 2017; Becker et al., 2015; Catalán-Serra et al., 2015; Kamp and Brittain, 2018; Martin-Fernandez et al., 2018; McDermott et al., 2018; Wu and Zhong, 2018; Daher et al., 2019; Casellas et al., 2020; Karadag et al., 2020; Keller et al., 2020; Zare et al., 2020; Al Khoury et al., 2021; Volpato et al., 2021) |
| Anatomy/physiology of gastrointestinal system information (n = 4, 5.33%) | (Rezailashkajani et al., 2006; Lesnovska et al., 2014; Berding et al., 2016; Volpato et al., 2021) |
| Diagnosis information (n = 8, 10.67%) | (Rezailashkajani et al., 2006; Molnár et al., 2010; Mukewar et al., 2013; Lesnovska et al., 2014; Yoo et al., 2015; Berding et al., 2016; Casellas et al., 2020; Volpato et al., 2021) |
| Diagnostic methods, risk, and interpretation information (n = 4, 5.33%) | (O'Sullivan et al., 2000; Catalán-Serra et al., 2015; Martin-Fernandez et al., 2018; Goren et al., 2022) |
| Prognosis/ long-term consequences information (n = 15, 20.00%) | (O'Sullivan et al., 2000; Quan et al., 2003; Bernstein et al., 2011; Wong et al., 2012; Becker et al., 2015; Wheat et al., 2016; Restall et al., 2017; Kamp and Brittain, 2018; McDermott et al., 2018; Wu and Zhong, 2018; Daher et al., 2019; Yu et al., 2019; Casellas et al., 2020; Al Khoury et al., 2021; Volpato et al., 2021) |
| Risk factors of flares information (n = 4, 5.33%) | (Quan et al., 2003; Pittet et al., 2016; Yu et al., 2019; Del Hoyo et al., 2020) |
| The prevention of relapse/ disease control information (n = 8, 10.67%) | (O'Sullivan et al., 2000; Lesnovska et al., 2014; Khan et al., 2016; Wheat et al., 2016; Britt, 2017; Kamp and Brittain, 2018; Wu and Zhong, 2018; Zare et al., 2020) |
| Action in relapse/ treatment of current relapse information (n = 2, 2.67%) | (Molnár et al., 2010; Lesnovska et al., 2017) |
| Extra-intestinal manifestations / IBD complications information (n = 22, 29.33%) | (O'Sullivan et al., 2000; Quan et al., 2003; Rezailashkajani et al., 2006; Politi et al., 2008; Molnár et al., 2010; Subasinghe et al., 2010; Bernstein et al., 2011; Wong et al., 2012; Huang et al., 2013; Mukewar et al., 2013; Viazis et al., 2013; Lesnovska et al., 2014; Becker et al., 2015; Berding et al., 2016; Pittet et al., 2016; Britt, 2017; Niv et al., 2017; Martin-Fernandez et al., 2018; Wu and Zhong, 2018; Daher et al., 2019; Casellas et al., 2020; Al Khoury et al., 2021) |
| Cancer information (n = 14, 18.67%) | (O'Sullivan et al., 2000; Quan et al., 2003; Molnár et al., 2010; Bernstein et al., 2011; Wong et al., 2012; Viazis et al., 2013; Catalán-Serra et al., 2015; Pittet et al., 2016; Sephton et al., 2016; Wu and Zhong, 2018; Daher et al., 2019; Casellas et al., 2020; Al Khoury et al., 2021; Volpato et al., 2021) |
| Risk of infection information (n = 1, 1.33%) | (Molnár et al., 2010) |
| Comorbidity and its management information (n = 2, 2.67%) | (Restall et al., 2017; Casellas et al., 2020) |
| Mortality information (n = 4, 5.33%) | (Catalán-Serra et al., 2015; Pittet et al., 2016; Al Khoury et al., 2021; Volpato et al., 2021) |
| Cure/treatment and side effects information (n = 24, 32.00%) | (O'Sullivan et al., 2000; Quan et al., 2003; Politi et al., 2008; Molnár et al., 2010; Conrad et al., 2012; Wong et al., 2012; Becker et al., 2015; Catalán-Serra et al., 2015; Berding et al., 2016; Pittet et al., 2016; Britt, 2017; Lesnovska et al., 2017; López-Sanromán et al., 2017; Restall et al., 2017; Cho et al., 2018; Martin-Fernandez et al., 2018; Wu and Zhong, 2018; Casellas et al., 2020; Karadag et al., 2020; Keller et al., 2020; Khalil et al., 2020; Zare et al., 2020; Al Khoury et al., 2021; Volpato et al., 2021) |
| Medications and side effects information (n = 29, 38.67%) | (O'Sullivan et al., 2000; Rezailashkajani et al., 2006; Cullen et al., 2010; Molnár et al., 2010; Subasinghe et al., 2010; Bernstein et al., 2011; Conrad et al., 2012; Wong et al., 2012; Mukewar et al., 2013; Viazis et al., 2013; Lesnovska et al., 2014; Becker et al., 2015; Yoo et al., 2015; Pittet et al., 2016; Sephton et al., 2016; Wheat et al., 2016; Niv et al., 2017; Cho et al., 2018; Kamp and Brittain, 2018; McDermott et al., 2018; Wu and Zhong, 2018; Daher et al., 2019; Yu et al., 2019; Casellas et al., 2020; Del Hoyo et al., 2020; Khalil et al., 2020; Santos et al., 2020; Zare et al., 2020; Volpato et al., 2021) |
| New research and advances in IBD information (n = 17, 22.67%) | (O'Sullivan et al., 2000; Politi et al., 2008; Conrad et al., 2012; Wong et al., 2012; Mukewar et al., 2013; Catalán-Serra et al., 2015; Pittet et al., 2016; Sephton et al., 2016; Wheat et al., 2016; Lesnovska et al., 2017; Niv et al., 2017; Kamp and Brittain, 2018; Yu et al., 2019; Casellas et al., 2020; Khalil et al., 2020; Al Khoury et al., 2021; Volpato et al., 2021) |
| Participate in research information (n = 1, 1.33%) | (Casellas et al., 2020) |
| Importance of adherence to medication information (n = 2, 2.67%) | (Wheat et al., 2016; Casellas et al., 2020) |
| Surgery information (n = 21, 28.00%) | (O'Sullivan et al., 2000; Quan et al., 2003; Rezailashkajani et al., 2006; Molnár et al., 2010; Bernstein et al., 2011; Conrad et al., 2012; Wong et al., 2012; Mukewar et al., 2013; Viazis et al., 2013; Lesnovska et al., 2014; Catalán-Serra et al., 2015; Pittet et al., 2016; Niv et al., 2017; Restall et al., 2017; Martin-Fernandez et al., 2018; McDermott et al., 2018; Wu and Zhong, 2018; Daher et al., 2019; Yu et al., 2019; Casellas et al., 2020; Volpato et al., 2021) |
| No medication therapies information (n = 3, 4.00%) | (O'Sullivan et al., 2000; Rezailashkajani et al., 2006; Casellas et al., 2020) |
| Alternative and complementary medicines information (n = 14, 18.67%) | (Molnár et al., 2010; Conrad et al., 2012; Mukewar et al., 2013; Becker et al., 2015; Pittet et al., 2016; Sephton et al., 2016; Wheat et al., 2016; Niv et al., 2017; Cho et al., 2018; Wu and Zhong, 2018; Daher et al., 2019; Casellas et al., 2020; Khalil et al., 2020; Goren et al., 2022) |
| COVID-19 information (n = 3, 4.00%) | (Karadag et al., 2020; Goodsall et al., 2021; Long et al., 2021) |
| Vaccination information (n = 8, 10.67%) | (Molnár et al., 2010; Yeung et al., 2012; Catalán-Serra et al., 2015; Pittet et al., 2016; Casellas et al., 2020; Aluzaite et al., 2021; Chan et al., 2021; Goren et al., 2022) |
| Lifestyle and daily life information (n = 10, 13.33%) | (Lesnovska et al., 2014; Yoo et al., 2015; Restall et al., 2017; McDermott et al., 2018; Wu and Zhong, 2018; Yu et al., 2019; Casellas et al., 2020; Khalil et al., 2020; Al Khoury et al., 2021; Goren et al., 2022) |
| Risky behaviors information (n = 6, 8.00%) | (Quan et al., 2003; Ryan et al., 2003; Cho et al., 2018; Martin-Fernandez et al., 2018; Cai et al., 2021; Goren et al., 2022) |
| Nutrition/ Diet information (n = 37, 49.33%) | (O'Sullivan et al., 2000; Rezailashkajani et al., 2006; Molnár et al., 2010; Subasinghe et al., 2010; Bernstein et al., 2011; Conrad et al., 2012; Wong et al., 2012; Mukewar et al., 2013; Viazis et al., 2013; Lesnovska et al., 2014, 2017; Becker et al., 2015; Catalán-Serra et al., 2015; Yoo et al., 2015; Berding et al., 2016; Pittet et al., 2016; Sephton et al., 2016; Wheat et al., 2016; Larsson et al., 2017; Niv et al., 2017; Restall et al., 2017; Cho et al., 2018; Kamp and Brittain, 2018; Martin-Fernandez et al., 2018; McDermott et al., 2018; Wu and Zhong, 2018; Daher et al., 2019; Yu et al., 2019; Casellas et al., 2020; Del Hoyo et al., 2020; Keller et al., 2020; Khalil et al., 2020; Al Khoury et al., 2021; Cai et al., 2021; Fawson et al., 2021; Volpato et al., 2021; Goren et al., 2022) |
| Nutritional deficiencies information (n = 3, 4.00%) | (Daher et al., 2019; Casellas et al., 2020; Cai et al., 2021) |
| Nutritional supplement information (n = 7, 9.33%) | (Bernstein et al., 2011; Wong et al., 2012; Wu and Zhong, 2018; Daher et al., 2019; Casellas et al., 2020; Cai et al., 2021; Goren et al., 2022) |
| Exercise/physical activity information (n = 6, 8.00%) | (Becker et al., 2015; Catalán-Serra et al., 2015; Cho et al., 2018; Casellas et al., 2020; Khalil et al., 2020; Fawson et al., 2021) |
| Rehabilitation information (n = 1, 1.33%) | (Conrad et al., 2012) |
| IBD-related travel information (n = 7, 9.33%) | (Greveson, 2014; Shepherd et al., 2014; Catalán-Serra et al., 2015; Greveson et al., 2016; Philip et al., 2018; Casellas et al., 2020; Aluzaite et al., 2021) |
| Pain and symptom management information (n = 5, 6.67%) | (Bernstein et al., 2011; Wong et al., 2012; Britt, 2017; Kamp and Brittain, 2018; Daher et al., 2019) |
| Disease management information (n = 17, 22.67%) | (Bernstein et al., 2011; Conrad et al., 2012; Wong et al., 2012; Lesnovska et al., 2014, 2017; Berding et al., 2016; Pittet et al., 2016; Sephton et al., 2016; Wheat et al., 2016; Britt, 2017; Larsson et al., 2017; Martin-Fernandez et al., 2018; Wu and Zhong, 2018; Daher et al., 2019; Casellas et al., 2020; Del Hoyo et al., 2020; Al Khoury et al., 2021) |
| Tip for coping information (n = 10, 13.33%) | (Bernstein et al., 2011; Wong et al., 2012; Berding et al., 2016; Sephton et al., 2016; Lesnovska et al., 2017; McDermott et al., 2018; Wu and Zhong, 2018; Daher et al., 2019; Khalil et al., 2020; Volpato et al., 2021) |
| Communication aspects information (n = 9, 12.00%) | (Politi et al., 2008; Becker et al., 2015; Pittet et al., 2016; Larsson et al., 2017; Niv et al., 2017; Cho et al., 2018; Yu et al., 2019; Casellas et al., 2020; Karadag et al., 2020) |
| Stories and experiences about defeating the disease information (n = 2, 2.67%) | (Yu et al., 2019; Khalil et al., 2020) |
| Psychological factors/dealing with stress (n = 12, 16.00%) | (O'Sullivan et al., 2000; Mukewar et al., 2013; Becker et al., 2015; Pittet et al., 2016; Restall et al., 2017; Daher et al., 2019; Casellas et al., 2020; Del Hoyo et al., 2020; Khalil et al., 2020; Cai et al., 2021; Fawson et al., 2021; Goren et al., 2022) |
| Quality of life information (n = 4, 5.33%) | (Mukewar et al., 2013; Khan et al., 2016; Pittet et al., 2016; Lesnovska et al., 2017) |
| Religious topics information (n = 1, 1.33%) | (Daher et al., 2019) |
| Gynecological issues information (n = 21, 28.00%) | (O'Sullivan et al., 2000; Quan et al., 2003; Rezailashkajani et al., 2006; Molnár et al., 2010; Bernstein et al., 2011; Wong et al., 2012; Selinger et al., 2013; Catalán-Serra et al., 2015; Yoo et al., 2015; Berding et al., 2016; Pittet et al., 2016; Sephton et al., 2016; Lesnovska et al., 2017; Cho et al., 2018; Martin-Fernandez et al., 2018; Wu and Zhong, 2018; Daher et al., 2019; Casellas et al., 2020; Al Khoury et al., 2021; Volpato et al., 2021; Goren et al., 2022) |
| Sexuality information (n = 2, 2.67%) | (Becker et al., 2015; Casellas et al., 2020) |
| Heredity/ genetic/microbiome information (n = 14, 18.67%) | (O'Sullivan et al., 2000; Politi et al., 2008; Molnár et al., 2010; Bernstein et al., 2011; Wong et al., 2012; Selinger et al., 2013; Becker et al., 2015; Catalán-Serra et al., 2015; Pittet et al., 2016; Lesnovska et al., 2017; Daher et al., 2019; Casellas et al., 2020; Volpato et al., 2021; Goren et al., 2022) |
| Family/significant others informing information (n = 9, 12.00%) | (Bernstein et al., 2011; Wong et al., 2012; Lahat et al., 2014; Lesnovska et al., 2014; Restall et al., 2017; Wu and Zhong, 2018; Daher et al., 2019; Khalil et al., 2020; Cai et al., 2021) |
| Family-related information (n = 3, 4.00%) | (Viazis et al., 2013; Restall et al., 2017; Martin-Fernandez et al., 2018) |
| Work-related issues information (n = 9, 12.00%) | (Bernstein et al., 2011; Conrad et al., 2012; Wong et al., 2012; Viazis et al., 2013; Becker et al., 2015; Catalán-Serra et al., 2015; Restall et al., 2017; Daher et al., 2019; Casellas et al., 2020) |
| Health care measures regarding IBD/ preventive care information (n = 1, 1.33%) | (Conrad et al., 2012) |
| Accessing resources to obtain medical care and socio-sanitary resources information (n = 2, 2.67%) | (Wheat et al., 2016; Casellas et al., 2020) |
| Hospitals and doctors' information (n = 4, 5.33%) | (Conrad et al., 2012; Wheat et al., 2016; Lesnovska et al., 2017; Niv et al., 2017) |
| When connecting to the IBD team/ specialist referrals information (n = 6, 8.00%) | (Bernstein et al., 2011; Wong et al., 2012; Daher et al., 2019; Casellas et al., 2020; Al Khoury et al., 2021; Goren et al., 2022) |
| Legal and policy aspects of information (n = 9, 12.00%) | (Conrad et al., 2012; Lahat et al., 2014; Catalán-Serra et al., 2015; Pittet et al., 2016; Daher et al., 2019; Yu et al., 2019; Casellas et al., 2020; Al Khoury et al., 2021; Volpato et al., 2021) |
| Insurance/ finance information (n = 7, 9.33%) | (Bernstein et al., 2011; Conrad et al., 2012; Wong et al., 2012; Restall et al., 2017; Cho et al., 2018; Daher et al., 2019; Khalil et al., 2020) |