Background and Objective New treatments for haemophilia are under development or entering the market, including extended half-life products, designer drugs and gene therapy, thereby increasing treatment options for haemophilia. It is currently unknown how people with haemophilia decide whether to switch to a new treatment. Therefore, the objective of this study was to explore what factors may play a role when Dutch patients and parents of boys with moderate or severe haemophilia make decisions about whether to switch to a different treatment, and how disease and treatment characteristics may affect these decisions. This may aid clinical teams in tailored information provision and shared decision making. Methods We conducted interviews among adults with moderately severe or severe haemophilia and parents of young boys with severe haemophilia. We aimed to include participants from a variety of backgrounds in terms of involvement in the haemophilia community, age, treatment centre and treatments. Participants were recruited through the Netherlands Haemophilia Society and a haemophilia treatment centre. Semi-structured interviews were recorded and transcribed verbatim. Thematic content analysis was used to analyse the data. Results Twelve people with haemophilia and two mothers of boys with haemophilia were included. In general, participants reported to be satisfied with their current treatment. However, they considered ease of use of the medication (fewer injections, easier handling, alternative administration) an added value of new treatments. Participants were aware of the high cost of coagulation factor products and some expressed their concern about the Netherlands Haemophilia Society's long-term willingness to pay for current and novel treatments, especially for increased usage due to high-risk activities. Participants also expressed their concerns about the short-and long-term safety of new treatments and believed the effects of gene therapy were not yet fully understood. Participants expected their treatment team to inform them when a particular new treatment would be suitable for them. Conclusions With the number of treatment options set to increase, it is important for healthcare providers to be aware of how patient experiences shape patients' decisions about new therapies.
Dental hygienists are important members of the oral health care team, providing preventive and prophylactic services and oral health education. However, scope-of-practice parameters in some states limit their ability to provide needed services effectively. In 2001 we developed the Dental Hygiene Professional Practice Index, a numerical tool to measure the state-level professional practice environment for dental hygienists. We used the index to score state-level scopes of practice in all fifty states and the District of Columbia in 2001 and 2014. The mean composite score on the index increased from 43.5 in 2001 to 57.6 in 2014, on a 100-point scale. We also analyzed the association of each state's composite score with an oral health outcome: tooth extractions among the adult population because of decay or disease. After we controlled for individual- and state-level factors, we found in multilevel modeling that more autonomous dental hygienist scope of practice had a positive and significant association with population oral health in both 2001 and 2014.
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