Background. Prior research has identified diverse worries that parents have about HPV vaccination. We sought to understand how parents prioritize worries and to identify subgroups of parents according to shared patterns of worry. Methods. We surveyed a national sample of 431 U.S. parents of adolescents who reported never having talked to their child's healthcare provider about HPV vaccination. Parents completed a best-worst scaling experiment designed to prioritize 11 common worries about HPV vaccination. The experiment used a balanced incomplete block design to present 11 choice tasks consisting of repeated subsets of worries. We used conditional logistic regression to prioritize worries and latent class models with 1-10 classes to identify subgroups of parents with shared worries. Results. Parents most often worried about long-term side effects of HPV vaccination, which about onethird (36%) ranked as their top worry. Other common top-ranked worries were how new the vaccine is (12%), motives of drug companies (12%), short-term side effects (10%), and that it may be unnecessary (10%). Latent class analyses suggested a relatively large number of distinct worry profiles, with most classes characterized by a worry about long-term side effects in combination with one other worry. Discussion. Our findings suggest that providers should be prepared to address concerns about longterm side effects, as this worry was prioritized across many subgroups of parents. However, to best address worry, a tailored, rather than targeted, communication approach may be needed.
Objective: With the global shift towards more person-centred approaches to care, where patients and clinicians engage in a shared decision-making partnership to identify the treatment best suited to an individual, it is important to understand all aspects of care that patients value in specific contexts and indications. The aim of this study was to develop a discrete choice experiment (DCE) to understand the heterogeneity in women's experiences and preferences for the different types of treatment for recurrent endometriosis. This paper reports on the development of this DCE. Methods: 8 qualitative, semi-structured telephone interviews were conducted with women with recurrent endometriosis. The interviews followed themes identified in the literature related to the symptoms of endometriosis, women's experiences with different treatments, experiences with recurrence and the effect of endometriosis on their quality of life. The interviews were analysed using thematic analysis. Results: Three main themes and 8 sub-themes emerged from the qualitative interview data. The three main themes were (1) burden of symptoms (2) diagnosis of endometriosis, and (3) treatment of endometriosis. The key concerns raised by women were unwanted side effects of hormonal treatments, and, to a lesser extent, the complications of surgery. Conclusion: The results of the qualitative analysis demonstrate the extent of heterogeneity in women's experiences, beliefs, concerns and preferences were for treatment. Women experienced a wide range of pain symptoms, which had a significant impact on their quality of life. Other issues highlighted by women were the misdiagnosis and delays in diagnosis due to dismissal of symptoms by the clinical team. There was also heterogeneity in preferences and beliefs about treatments, suggesting that a person-centred approach to care would ensure that these women receive the treatment they value most. The identified themes were used to develop a DCE to measure preference heterogeneity in treatment preferences for recurrence endometriosis.
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