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Table 3 Articles included in the review and divided considering the main theme and phase of the life cycle

From: The evolution of IBD perceived engagement and care needs across the life-cycle: a scoping review

 

Number of records

References

Children

Psychological needs and need to be accepted

3

Zmeskalova et al., 2016; Bokemeyer et al., 2013; Dignass et al., 2015

Needs related to physical needs and physical activity

2

Mählmann et al., 2017; Vedrana, Bramhagen, Idvall, and Wennick, 2017

Needs related to feeding

10

Pituch-Zdanowska et al., 2019; Miele et al., 2018; Rocha, Sousa, Reis, and Santana, 2019; Tomar, Sanjeevani K; Kedia, Saurabh; Upadhyay, Ashish D, Bopanna, Sawan et al., 2017; Cohen, Aaron B; Lee, Dale; Long, Millie D; Kappelman, Michael D., et al., 2014; Hou, Jason K; Lee, Dale; Lewis, James, 2014; De Vries, Jeanne H.M.; Dijkhuizen, Milou; Tap, Petra Witteman, Ben J.M., 2019; Kakodkar, Samir, Mutlu, Ece A, 2017

Parenting style and support

3

Kluthe et al., 2018; Lindström, Åman, Anderzén-Carlsson, and Lindahl Norberg, 2016; Zmeskalova et al., 2016

Social needs

2

Vedrana et al., 2017; Vejzovic, Bramhagen, Idvall, and Wennick, 2018

Adolescents

Need to understand

9

Olsen, Jensen, Larsen and Sorensen, 2016; Gumidyala et al., 2017; Cho et al., 2018; Cho et al., 2018; Fu et al., 2017; McCartney, 2011; Gumidyala et al., 2018; Gray et al., 2015; Klostermann, McAlpine, Wine,Goodman and Kroeker, 2018

Physical needs

3

Olsen, Jensen, Larsen and Sorensen, 2016; Zmeskalova et al., 2016; Smith and Gettings, 2016

Psychological needs

8

Gamwell et al., 2018; Wu and Zhong, 2018; Zmeskalova et al., 2016; Smith and Gettings, 2016; Cho et al., 2018; Cho et al., 2018; Hummel et al., 2013; Lugasi, Achille and Stevenson, 2011

Need of protection, safeness

3

Gray et al., 2018, 2015; Reiss, Gibson, and Walker, 2017; Smith and Gettings, 2016

Relational and social needs

13

Hummel et al., 2013; Vedrana et al., 2017; Adler and Sc, 2016; Olsen, Jensen, Larsen and Sorensen, 2016; Gamwell et al., 2018; Wu and Zhong, 2018; Zmeskalova et al., 2016; Cho et al., 2018; Cho et al., 2018; De Silva and Fishman, 2014; Rohatinsky, Risling, Kumaran, Hellsten and Thorp-Froslie, 2018; McCartney, 2011; Gumidyala et al., 2018; Gray et al., 2015

Need for gratitude, respect and respect for your needs

1

Olsen, Jensen, Larsen and Sorensen, 2016

Engagement needs

31

Stollon et al., 2017; Zeisler and Hyams, 2014; Rosen, Annunziato, Colombel and Benkov, 2015; Cho et al., 2018; Plevinsky, Gumidyala and Fishman, 2015; Gray et al., 2018; Yerushalmy-Feler et al., 2017; Escher, 2009; van Groningen, Ziniel, Arnold and Fishman, 2012; Karim, Porter, McCombie, Gearry and Day, 2019; Timmer et al., 2017; Adler, 2016; Szeto et al., 2018; Fishman, Mitchell, Lakin, Masciarelli and Flier, 2016; Fu et al., 2017; Fishman, Barendse, Hait, Burdick and Arnold, 2015; Jeganathan et al., 2017; De Silva and Fishman, 2014; Rohatinsky, Risling, Kumaran, Hellsten and Thorp-Froslie, 2018; McCartney, 2011; Bennett, Moore, Bampton, Bryant and Andrews, 2016; Otto et al., 2019; Cole et al., 2015; Gumidyala et al., 2018; Maddux, Ricks and Bass, 2017; Schmidt, Herrmann-Garitz, Bomba and Thyen, 2016; Gray et al., 2015; Gray et al., 2015; Van den Brink et al., 2019; Klostermann, McAlpine, Wine,Goodman and Kroeker, 2018; Lugasi, Achille and Stevenson, 2011

Adults

Needs of information

11

Wu and Zhong, 2018; Butcher, Law, Prudham and Limdi, 2011; Bernstein, Promislow, Rawsthorne, Walker and Bernstein, 2011; Catalan-Serra et al., 2015; Gordon, Mcewan, Maguire, Sugrue and Puelles, 2015; McDermott et al., 2018; van Deen et al., 2017; Wardle and Mayberry, 2014; Baker, Lee, Jones, Brown and Lobo, 2018; Kamp and Brittain, 2018; Mikocka-Walus, Power, Rook and Robins, 2015

Medical needs

1

Baker DM et al., 2018

Psychological needs

13

Jordan, Ohlsen, Hayee and Chalder, 2018; Knowles, Andrews and Porter, 2018; Klag et al., 2017; Goodhand, Wahed and Rampton, 2009; Chiarini et al., 2017; van Erp et al., 2017; Mcdermott et al., 2015; Tribbick et al., 2017; Vegni et al., 2018; Muller, Prosser, Bampton, Mountifield and Andrews, 2010; Wang et al., 2016; Trindade, Ferreira and Pinto-Gouveia, 2017; Gurková and Soósová, 2018

Social and work related needs

8

Calvet et al., 2018; Leso, Ricciardi and Iavicoli, 2015; Restall et al., 2016; Schreiner et al., 2017; van der Have et al., 2015; Haapamäki, Turunen, Roine, Färkkilä and Arkkila, 2009; Froes et al., 2018; Muller, Prosser, Bampton, Mountifield and Andrews, 2010

Support needs

10

Jordan, Ohlsen, Hayee and Chalder, 2018; Garcia-Sanjuan, Lillo-Crespo, Sanjuan-Quiles, Gil-Gonzalez and Richart-Martinez, 2016; Knowles, Andrews and Porter, 2018; Lahat, Neuman, Eliakim and Ben-Horin, 2014; Chiapponi, Witt, Dlugosch, Gulberg and Siebeck, 2016; Klag et al., 2017; Goodhand, Wahed and Rampton, 2009; Iglesias et al., 2009; Dibley et al., 2018; Kamp and Brittain, 2018

Practical needs

11

Limdi, Aggarwal and McLaughlin, 2016; Limdi, 2018; Kakodkar and Mutlu, 2017; De Vries, Dijkhuizen, Tap and Witteman, 2019; Larussa et al., 2019; Hou, Lee and Lewis, 2014; Cohen et al., 2014; Rocha, Uli, Reis and Santana, 2019; Tomar et al., 2017; Albenberg et al., 2019; Schreiner et al., 2019

Needs related to the future

2

Nutting and Grafsky, 2018; Ghorayeb, Branney, Selinger and Madill, 2018

Engagement needs

5

Dibley et al., 2018; Kamp and Brittain, 2018; Siegel et al., 2016; Mikocka-Walus, Power, Rook and Robins, 2015; Carpio et al., 2016

Transitions

Transition to school

0

 

Transition to adolescence

2

Cullen and Beattle, 2009; Fu et al., 2017

Transition to adulthood

46

van Groningen, Ziniel, Arnold and Fishman, 2012; Cullen and Beattle, 2009; Van den Brink et al., 2019; Stollon et al., 2017; Yerushalmy-Feler et al., 2017; Timmer et al., 2017; Gray et al., 2018; Plevinsky, Gumidyala and Fishman, 2015; Cho et al., 2018; Zeisler and Hyams, 2014; Rosen, Annunziato, Colombel and Benkov, 2015; Karim, Porter, McCombie, Gearry and Day, 2019; Adler, 2016; Szeto et al., 2018; Fishman, Mitchell, Lakin, Masciarelli and Flier, 2016; Fu et al., 2017; Fishman, Barendse, Hait, Burdick and Arnold, 2015; Jeganathan et al., 2017; De Silva and Fishman, 2014; Rohatinsky, Risling, Kumaran, Hellsten and Thorp-Froslie, 2018; McCartney, 2011; Bennett, Moore, Bampton, Bryant and Andrews, 2016; Otto et al., 2019; El-Matary, 2009; Elli et al., 2019; Clarke, Tilean, Lusher and Joanne, 2016; Afzali and Wahbeh, 2017; Bincy and Stacy, 2014; van Rheenen et al., 2017; Brooks et al., 2017; Brooks, Smith and Lindsay, 2018; Cole et al., 2015; Shapiro et al., 2019; Leung, Heyman and Mahadevan, 2011; Gumidyala et al., 2018; Hummel et al., 2013; Maddux, Ricks and Bass, 2017; Bollegala and Nguyen, 2015; Schmidt, Herrmann-Garitz, Bomba and Thyen, 2016; Gray et al., 2015; Gray et al., 2015; Van den Brink et al., 2019; Trivedi, Holl, Hanauer and Keefer, 2016; Klostermann, McAlpine, Wine,Goodman and Kroeker, 2018; Lugasi, Achille and Stevenson, 2011; Goodhand, Hedin, Croft and Lindsay, 2011;

Transition during the adulthood

3

Gordon, Mcewan, Maguire, Sugrue and Puelles, 2015; Ghorayeb, Branney, Selinger and Madill, 2018; Nutting and Grafsky, 2018

Transition to remissions

1

Iglesias et al., 2009

Transition to/from surgery

4

Olsen, Jensen, Larsen and Sorensen, 2016; Kamp and Brittain, 2018; Dibley et al., 2018; Baker, Lee, Jones, Brown and Lobo, 2018

Transition to ageing

0

 

No transition

53

Smith and Gettings, 2016; Gumidyala et al., 2017; Zmeskalova et al., 2016; Gamwell et al., 2018; Wu and Zhong, 2018; Butcher, Law, Prudham and Limdi, 2011; Carpio et al., 2016; Bernstein, Promislow, Rawsthorne, Walker and Bernstein, 2011; Catalan-Serra et al., 2015; McDermott et al., 2018; van Deen et al., 2017; Wardle and Mayberry, 2014; Jordan, Ohlsen, Hayee and Chalder, 2018; Garcia-Sanjuan, Lillo-Crespo, Sanjuan-Quiles, Gil-Gonzalez and Richart-Martinez, 2016; Knowles, Andrews and Porter, 2018; Lahat, Neuman, Eliakim and Ben-Horin, 2014; Chiapponi, Witt, Dlugosch, Gulberg and Siebeck, 2016; Klag et al., 2017; Calvet et al., 2018; Froes et al., 2018; Leso, Ricciardi and Iavicoli, 2015; Restall et al., 2016; Schreiner et al., 2017; van der Have et al., 2015; Siegel et al., 2016; Limdi, Aggarwal and McLaughlin, 2016; Limdi, 2018; Kakodkar and Mutlu, 2017; De Vries, Dijkhuizen, Tap and Witteman, 2019; Larussa et al., 2019; Schreiner et al., 2019; Hou, Lee and Lewis, 2014; Cohen et al., 2014; Rocha, Uli, Reis and Santana, 2019; Tomar et al., 2017; Chiarini et al., 2017; van Erp et al., 2017; Gurková and Soósová, 2018; Mcdermott et al., 2015; Tribbick et al., 2017; Vegni et al., 2018; Muller, Prosser, Bampton, Mountifield and Andrews, 2010; Wang et al., 2016; Trindade, Ferreira and Pinto-Gouveia, 2017; Mikocka-Walus, Power, Rook and Robins, 2015; Albenberg et al., 2019; Pituch-Zdanowska et al., 2019; Miele et al., 2018; Haapamäki, Turunen, Roine, Färkkilä and Arkkila, 2009; Goodhand, Wahed and Rampton, 2009

No needs

13

El-Matary, 2009; Elli et al., 2019; Clarke, Tilean, Lusher and Joanne, 2016; Afzali and Wahbeh, 2017; Bincy and Stacy, 2014; van Rheenen et al., 2017; Brooks et al., 2017; Brooks, Smith and Lindsay, 2018; Shapiro et al., 2019; Leung, Heyman and Mahadevan, 2011; Bollegala and Nguyen, 2015; Trivedi, Holl, Hanauer and Keefer, 2016; Goodhand, Hedin, Croft and Lindsay, 2011