Parents' Perception of the Benefit of Receiving a Patient Information Leaflet Prior to Attending a Craniofacial Multidisciplinary Team Appointment.

OBJECTIVE: To investigate how a patient information leaflet describing what to expect during a craniofacial multidisciplinary team (MDT) appointment is experienced by parents of children with craniofacial anomalies (CFAs) and whether it helps with preparation for the appointment. DESIGN: Combination of qualitative and quantitative design. SETTING: Norwegian National Unit for Craniofacial Surgery. PARTICIPANTS: Thirty-three parents of children with CFAs completed the questionnaire and fourteen were subsequently interviewed. INTERVENTIONS: A patient information leaflet, sent to all parents before their MDT appointment. MAIN OUTCOME MEASURES: Descriptive questionnaire data and interview data. RESULTS: All parents (N = 33, 100%) found the leaflet easy to understand, while 31 (93.9%) found it provided helpful information. However, many first-time attendees still found the MDT setting overwhelming. CONCLUSIONS: A leaflet may be helpful for parents when preparing for their child's MDT appointment. However, some parents may need additional support and information related to their child's treatment pathway.

Microtia and craniofacial microsomia: Content analysis of facebook groups.

OBJECTIVE: An increasing number of patients use social media for health-related information and social support. This study's objective was to describe the content posted on Facebook groups for individuals with microtia and/or craniofacial microsomia (CFM) and their families in order for providers to gain insight into patient and family needs and experiences to inform clinical care. METHODS: Two months of posts, images, comments, and "like" responses from two Facebook groups in the US and the UK were recorded and analyzed using content analysis. A secondary analysis identified statements of emotion. RESULTS: Posts (N = 254) had a total of 7912 "like" responses, 2245 comments, and 153 images. There were three categories of posts: seeking guidance (43%; 9 themes), promoting events/news (33%; 5 themes), and sharing experiences (24%; 3 themes). Across categories, 16% of posts had emotional content. Most comments were responding to posts seeking guidance, including medical care (20%), surgical care (9%), and hearing aids (5%). Promotional posts often aimed to increase CFM awareness. Posts sharing experiences were generally positive, with the highest number of "likes". CONCLUSIONS: Facebook groups members frequently exchanged health-related information, suggesting value placed on input from other families and the convenience of seeking information online. Posts also promoted awareness and shared experiences. Clinical care implications include the need for easily accessible accurate and tailored CFM-related health education. Additionally, providers should demonstrate awareness of health information on social media and may address the potential emotional impact of CFM by facilitating access to resources for social support.

Quality of life in adults with lymphedema cholestasis syndrome 1.

BACKGROUND: LCS1 (Lymphedema Cholestasis Syndrome 1/Aagenaes syndrome) is a rare, hereditary disorder, where the highest known prevalence is in Norway. The disorder is characterized by lymphedema and periodic cholestasis from birth or the neonatal period. This study aimed to examine internal reliability of the SF-36, in addition to the group's overall- and health related quality of life (OQoL and HRQoL) and psychosocial well-being. METHODS: Twenty adults (aged 18-65) in Norway have been diagnosed with LSC1. Eighteen of these patients were included in the study and completed four questionnaires on overall and health related quality of life and psychosocial well-being: Cantril's Ladder (CL), The Kaasa Test, the SF-36, and a lymphedema anamnesis questionnaire. Demographic data were registered, and 15 of the patients underwent a physical examination of the lymphedema. SF-36 scores were compared with those of 360 age and gender matched controls drawn from an earlier survey of the Norwegian general population. The Mann-Whitney U test and Chi-square (χ2) test were used to test internal differences in the patient group. RESULTS: Health-related quality of life (HRQOL) was significantly reduced in patients with LSC1 compared to controls, in three out of eight areas, role physical, general health and mental health. Females scored significantly better than males in the patient group in two areas of SF-36, in CL, and in one of three scales of The Kaasa Test. Severe lymphedema was found to be significantly correlated to bodily pain and reduced mental health. The level of education was positively correlated to mental health. CONCLUSION: Overall quality of life (OQoL), health related quality of life (HRQoL) and psycho-social well-being were good in the patient group, but some dimensions of HRQoL were reduced. More severe extent of lymphedema was associated with poorer HRQoL.