Development and preliminary testing of the psychosocial adjustment to hereditary diseases scale.

摘要: The presence of Lynch syndrome (LS) can bring a lifetime uncertainty to an entire family as members adjust living with high cancer risk. research base on how individuals and families genetic-linked diseases following predictive genetic testing has increased our understanding short-term impacts but gaps continue exist in knowledge important factors that facilitate or impede long-term adjustment. failure existing scales detect psychosocial adjustment challenges this population led researchers question the adequate sensitivity these instruments. Furthermore, we have limited insight into role promoting purpose study was develop initially validate Psychosocial Adjustment Hereditary Diseases (PAHD) scale. This scale consists two subscales, Burden Knowing (BK) Family Connectedness (FC). Items for subscales were generated from qualitative data tested sample 243 participants LS. Multitrait/Multi-Item Analysis Program-Revised (MAP-R) used evaluate psychometric properties PAHD. findings support convergent discriminant validity subscales. Construct confirmed by factor analysis Cronbach’s alpha supported strong internal consistency BK (0.83) FC (0.84). Preliminary suggests PAHD is psychometrically sound capable assessing We conclude may be valuable monitoring tool identify who require therapeutic interventions.