Research on the health-related quality of life (HrQoL) impact of short stature and its treatment in children and adolescents has developed recently. Based on a PubMed literature search, studies addressing this issue were identified and considerable methodological problems mainly related to the HrQoL instruments used and conflicting results are discussed in this mini review. Additionally, this mini review identifies a need for further research and indicates potential directions.
OBJECTIVE
To identify problems in the long‐term psychosocial and developmental outcome specific to patients with the bladder exstrophy‐epispadias complex (BEEC), using a self‐developed semi‐structured questionnaire, as there are various techniques of reconstruction to repair BEEC but to date neither patients nor surgeons have a clear answer about which type gives the most acceptable long‐term results.
PATIENTS AND METHODS
Increasingly many patients with BEEC reach adulthood and wish to have sexual relationships and families. To date, no studies have used disease‐specific psychological instruments to measure the psychosocial status of patients with BEEC. Thus we contacted 208 patients with BEEC, and 122 were enrolled, covering the complete spectrum of the BEEC. The data assessed included the surgical reconstruction, subjective assessment of continence, developmental milestones, school performance and career, overall satisfaction in life, disease‐specific fears and partnership experiences in patients aged >18 years. We compared affected females and males to assess gender‐associated differences in quality of life.
RESULTS
Affected females had more close friendships, fewer disadvantages in relation to healthy female peers and more partnerships than the males. Family planning seemed to be less of a problem in affected females. There were no gender differences in the adjustments within school and professional career, which was very good in general.
CONCLUSION
Future studies are needed to assess the disease‐specific anxieties, considering gender‐specific differences.
Objective: To review the extant literature on functional abdominal pain in childhood through the lens of the developmental psychopathology perspective and to systematize research results by means of a two-stage pathway model in which the emergence of functional abdominal pain and its potential transition into a somatoform adjustment disorder is outlined. Methods: Using electronic searches for published studies and previous reviews about functional abdominal pain. Results: An association of functional abdominal pain with internalizing symptoms, poor well-being of family members, major life events and daily stressors is found. The impact of stress on pain seems to be moderated by the children’s coping style and their perceived competence and self-efficacy to manage the pain experience. There is evidence for the influence of modeling and operant mechanisms on pain experiences. A new term, ‘somatoform adjustment disorder’, and its relation to functional abdominal pain is discussed. Conclusions: It seems that those children with functional abdominal pain who cannot adapt to the pain indeed run the risk of developing a somatoform adjustment disorder.
The concept of health-related quality of life (HrQoL) reflects the subjective perception of health and includes aspects of well-being and functioning in physical, emotional, mental and social life domains. Nowadays, HrQoL has become a relevant treatment outcome from epidemiological and clinical perspectives and is also broadly employed in health economic analyses. To assess HrQoL generic as well as condition-specific instruments are used. The former are applicable to a wide range of health conditions and aim at measuring HrQoL across different conditions. The latter focus on capturing the impact of a specific disease. Although HrQoL research in adults is now well-advanced, there are still open questions regarding how to assess HrQoL in pediatric conditions, such as short stature. Eight generic (one chronic-generic) and seven condition-specific (one treatment-specific) instruments used in HrQoL research in short stature of youth are described. Additionally, this mini review identifies a need for further research and indicates potential directions.
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