62 Chapter 2 Soulier Syndrome/ OR (((congenit* OR inherited OR heredit* OR rare) ADJ3 (blood-clotting* OR bleeding* OR coagulation* OR thrombocyt* OR platelet* OR fibrinogen*) ADJ3 (diseas* OR disorder* OR syndrom* OR defect* OR deficien* OR anomal* OR abnormal* OR dysfunction*)) OR glanzmann* OR thrombasthenia* OR ((grey OR gray) ADJ3 (platelet* OR thrombocyte*)) OR ((scott OR aldrich) ADJ3 (syndrome*)) OR ((willebrand* OR vonwillebrand*) ADJ3 (diseas*)) OR (VWD NOT HPLC-VWD) OR ((factor-10 OR factor-X OR factor11 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*) ADJ3 (deficienc*)) OR dysprothrombinem* OR hypoprothrombinem* OR wiskott-aldrich* OR Bernard-Soulier* OR afibrinogen* OR dysfibrinogen* OR hypofibrinogen* OR ((storage-pool*) ADJ3 (deficien*)) OR May-Hegglin*).ab,ti,kw.) AND (Patient Reported Outcome Measures/ OR Self Report/ OR Interviews as Topic/ OR exp Surveys and Questionnaires/ OR Psychometrics/ OR Psychology/ OR Psychology, Social/ OR Psychology, Child/ OR Psychology, Adolescent/ OR Health/ OR Quality of Life/ OR Value of Life/ OR Social Participation/ OR Adaptation, Psychological/ OR Mental Health/ OR Patient Satisfaction/ OR Interpersonal Relations/ OR Phobia, Social/ OR Resilience, Psychological/ OR Social Stigma/ OR Empowerment/ OR Self Concept/ OR Social Adjustment/ OR Activities of Daily Living/ OR Interpersonal Relations/ OR Physical Functional Performance/ OR Pain Measurement/ OR Depression/ OR Sexuality/ OR Social Behavior/ OR Fatigue/ OR Cognition/ OR Health Status/ OR Patient Outcome Assessment/ OR Health Status Indicators/ OR Educational Status/ OR exp Employment/ OR Qualitative Research/ OR exp Patient Satisfaction/ OR Anxiety/ OR exp Exercise/ OR exp Sexual Behavior/ OR Locomotion/ OR Mobility Limitation/ OR Absenteeism/ OR exp Sleep/ OR Diagnostic Self Evaluation/ OR SelfAssessment/ OR Perception/ OR (((patient* OR self* OR child OR parent OR parents OR mother* OR father* OR caregiver* OR care-giver* OR carer OR carers) ADJ (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 ADJ3 (impact* OR anxi* OR phobia OR aspect* OR implication*)) OR (mental* ADJ3 (stress OR distress OR health)) OR (satisf* ADJ3 (patient* OR self OR child)) OR emotion* OR coping OR ((adapt* OR adjust*) ADJ3 (behav*)) OR resilien* OR stigma* OR empower* OR (self ADJ (concept* OR efficac* OR esteem OR assessment* OR diagnosis OR observation*)) OR (social* ADJ3 adaptat*) OR (daily ADJ3 (life OR living) ADJ3 activit*) OR ((human OR interperson*) ADJ3 relation*) OR ((physical OR
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