Parents' Experience of Administering Vosoritide: A Daily Injectable for Children with Achondroplasia.

Introduction: Vosoritide is the first approved pharmacological treatment for achondroplasia and is indicated for at-home injectable administration by a trained caregiver. This research aimed to explore parents' and children's experience of initiating vosoritide and administering this treatment at home.

Methods: Qualitative telephone interviews were conducted with parents of children being treated with vosoritide in France and Germany.

Internet discussion forums, an information and support resource for orthognathic patients.

Introduction: Orthognathic patients appear to be increasingly using the Internet to obtain information about their proposed treatment. The aim of this study was to investigate the information that orthognathic patients share and discuss with peers away from the clinical environment to improve the provision of information for orthognathic patients.

Methods: Posts made by persons in a large publicly accessible online orthognathic discussion forum were analyzed; 1912 randomly selected forum posts were evaluated using a qualitative analysis technique known as "thematic analysis" that involves coding the posts and collating them into meaningful and distinct themes.

Treatment Adherence in Type 1 Hereditary Tyrosinaemia (HT1): A Mixed-Method Investigation into the Beliefs, Attitudes and Behaviour of Adolescent Patients, Their Families and Their Health-Care Team.

Background: Type 1 hereditary tyrosinaemia (HT1) is a rare metabolic disorder caused by an enzymatic defect in the metabolism of the amino acid tyrosine. Primary treatment for HT1 is nitisinone (Orfadin) in conjunction with a low-tyrosine/phenylalanine diet. The appropriate use of nitisinone medication and adhering to specialist diet is thus central to the successful management of HT1.

Identifying successful outcomes and important factors to consider in upper limb amputation rehabilitation: an international web-based Delphi survey.

Purpose: To identify and gain agreement on successful outcomes of and important factors to consider in rehabilitation following upper limb absence (ULA).

Method: Fifty-three participants consisting of multi-disciplinary rehabilitation professionals, and individuals with ULA were invited to complete a three-round modified Delphi iterative survey. Following three Delphi questionnaire rounds, participants clarified the definitions of success in three areas (prosthesis use, activities and participation and self-image).

Looking 'the same': experiences of women who have had corrective surgery for breast asymmetry.

Qualitative interviews with ten women found that following corrective surgery for congenital breast asymmetry, women were still concerned with the symmetry of their breasts and expressed high ideals regarding symmetry. Although women found an improvement in body confidence, some felt their confidence and socializing would be further improved with time. Women were secretive about their breast asymmetry and their surgery, being fearful of negative reactions from other people.

Identifying the values and preferences of prosthetic users: a case study series using the repertory grid technique.

Purpose: The matching of prosthetic devices to the needs of the individual is a challenge for providers and patients. The aims of this study are to explore the values and preferences that prosthetic users have of their prosthetic devices; to investigate users' perceptions of alternative prosthetic options and to demonstrate a novel method for exploring the values and preferences of prosthetic users.

Methods: This study describes four case studies of upper limb and lower limb high tech and conventional prosthetic users.