Milea Timbergen

242 Supplemental Materials 1. Literature search, Embase.com, November 6th, 2017 (‘desmoid tumor’/exp OR Fibromatosis/exp OR ‘familial colon polyposis’/exp OR (desmoid* OR Fibromatos* OR ((familial* OR heredit* OR genetic* OR Adenomatous*) NEAR/6 polypos*)):ab,ti) AND (‘quality of life’/exp OR ‘quality of life assessment’/exp OR ‘functional assessment’/exp OR ‘general health status assessment’/exp OR ‘health status’/exp OR ‘health impact assessment’/de OR ‘daily life activity’/exp OR ‘ADL disability’/exp OR ‘patient satisfaction’/exp OR ‘distress syndrome’/exp OR ‘stress’/exp OR emotion/ exp OR ‘sexuality’/exp OR ‘self concept’/exp OR ‘family relation’/exp OR ‘family life’/exp OR ‘coping behavior’/exp OR ‘disability’/de OR invalidity/de OR ‘immobility’/de OR ‘esthetics’/de OR ‘pain assessment’/ exp OR ‘pain measurement’/de OR ‘social interaction’/exp OR ‘social life’/exp OR ‘social environment’/ de OR ‘psychosocial environment’/de OR ‘social support’/de OR ‘social stress’/de OR ‘social rejection’/de OR ‘mental health’/exp OR ‘wellbeing’/exp OR ‘interview’/exp OR ‘questionnaire’/exp OR ‘assessment of humans’/exp OR ‘psychological aspect’/exp OR ‘psychology’/exp OR ‘marriage’/exp OR ((quality NEAR/3 life) OR hrql OR qol OR (Functional* NEAR/3 (outcome* OR asses*)) OR (daily NEAR/3 (life OR living) ) OR ADL OR (patient NEAR/3 satisf*) OR ((health OR function*) NEAR/3 status*) OR eortc OR ((short-form OR sf) NEXT/1 (12 OR 20 OR 36)) OR sf12 OR sf20 OR sf36 OR distress OR (stress NEAR/3 (patient* OR personal* OR psycho* OR mental* OR life)) OR emotion* OR anxi* OR sexual* OR (self NEXT/1 (concept* OR esteem OR satisf* OR percept*)) OR body-image* OR burden* OR ((impact* OR problem* OR issue*) NEAR/6 (function* OR disease* OR personal* OR psycholog* OR body OR clinical* OR health* OR life OR daily OR tumor* OR tumour* OR social* )) OR psychosocial* OR worry* OR worrie* OR ((family OR interpersonal OR partner* OR spous*) NEAR/6 (relation* OR communicat* OR life OR involve*)) OR coping OR ((adaptive* OR adjustment* ) NEAR/6 (behav* OR psycho*)) OR impairment* OR disabilit* OR invalidit* OR esthetic* OR aesthetic* OR cosmetic* OR beauty OR fitness OR (physical* NEAR/3 (condition* OR mobility)) OR immobility OR (pain* NEAR/6 (assess* OR inventor* OR measure*)) OR attractiveness* OR (social* NEAR/3 (isolat* OR distan* OR interact* OR life* OR support OR reject* OR participat* OR environment*)) OR feeling* OR (mental NEAR/3 (health OR status OR suffer*)) OR wellbeing OR well-being OR insecur* OR resilien* OR (symptom* NEAR/6 (assess* OR inventor* OR check*)) OR karnofsk* OR (karno* NEXT/3 (score* OR scale* OR perform* OR function* OR stat* OR index* OR rating)) OR (focus NEAR/3 group*) OR interview* OR questionnaire* OR (assessment* NEAR/3 human*) OR hopeless* OR fear OR frustrat* OR hopeless* OR helpless* OR unhapp* OR mood OR uncertaint* OR (lack NEAR/3 informat*) OR disturb* OR concerned OR deficit* OR ((self OR patient*) NEXT/1 report*) OR marriage*):ab,ti) NOT ([animals]/lim NOT [humans]/lim) 8