64 Chapter 2 OR efficac* OR esteem OR assessment* OR diagnosis OR observation*)) OR (social* NEAR/3 adaptat*) OR (daily NEAR/3 (life OR living) NEAR/3 activit*) OR ((human OR interperson*) NEAR/3 relation*) OR ((physical OR mental) NEAR/3 (performance* OR functioning*)) OR (pain NEAR/3 (assessment* OR manag* OR inventor* OR scale* OR index*)) OR depression* OR depressive* OR sexuality OR (sexual NEAR/3 (functioning*)) OR (social NEAR/3 (behaviour* OR behavior* OR activit* OR contact*)) OR sociobehavi* OR fatigue* OR tiredness* OR ((health OR educational OR employment OR work) NEAR/3 (status OR state)) OR unemployment* OR ((descriptive OR qualitative) NEAR/3 (research* OR study OR studies)) OR ((patient*) NEAR/3 (preferenc*)) OR anxiety OR ((physical* OR sexual*) NEAR/3 (activ* OR behavior* OR behaviour*)) OR running OR swimming OR cycling OR jogging OR walking OR sexuality or locomotion* OR mobility OR absenteeism* OR ((absence* OR absent* OR time NEXT loss*) NEAR/3 (work*)) OR sleep* OR somnolen*):ab,ti,kw) Web of Science TS=((((((congenit* OR inherited OR heredit* OR "rare") NEAR/2 (blood-clotting* OR bleeding* OR coagulation* OR thrombocyt* OR platelet* OR fibrinogen*) NEAR/2 (diseas* OR disorder* OR syndrom* OR defect* OR deficien* OR anomal* OR abnormal* OR dysfunction*)) OR glanzmann* OR thrombasthenia* OR ((grey OR gray) NEAR/2 (platelet* OR thrombocyte*)) OR ((scott OR aldrich) NEAR/2 (syndrome*)) OR ((willebrand* OR vonwillebrand*) NEAR/2 (diseas*)) OR ((factor-10 OR factor-X OR factor-11 OR factor-XI OR factor-13 OR factor-XIII OR factor-5 OR factor-V OR factor-7 OR factor-VII OR factor-1 OR factor-I OR blood-clotting-factor* OR factor-2 OR factor-II OR prothrombin*) NEAR/2 (deficienc*)) OR dysprothrombinem* OR hypoprothrombinem* OR wiskott-aldrich* OR Bernard-Soulier* OR afibrinogen* OR dysfibrinogen* OR hypofibrinogen* OR ((storage-pool*) NEAR/2 (deficien*)) OR May-Hegglin*)) AND (((patient* OR self* OR child OR parent OR parents OR mother* OR father* OR caregiver* OR care-giver* OR carer OR carers) NEAR/1 (report* OR disclos* OR evaluat* OR perception*)) OR "prom" OR proms OR PROMIS OR interview* OR questionnaire* OR Psychometr* OR psycholog* OR psychosocial* OR psycho-social* OR well-being OR wellbeing OR "quality of life" OR qol OR hrql OR hrqol OR ("social" NEAR/2 (impact* OR anxi* OR phobia OR aspect* OR implication*)) OR (mental* NEAR/2 ("stress" OR distress OR "health")) OR (satisf* NEAR/2 (patient* OR "self" OR child)) OR emotion* OR "coping" OR ((adapt* OR adjust*) NEAR/2 (behav*)) OR resilien* OR stigma* OR empower* OR ("self" NEAR/1 (concept* OR efficac* OR esteem OR assessment* OR diagnosis OR observation*)) OR (social* NEAR/2 adaptat*) OR (daily NEAR/2 ("life" OR "living")
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