Research Interview – “Pain and OI”
Interview with Rubén Muñoz Cortés, psychologist of Fundación AHUCE
Who are you? I am Rubén Muñoz Cortés. I live in Valencia, Spain. I am a psychologist with a Master’s Degree in Clinical Psychology and Neuropsychology. I am a PhD candidate in Clinical and Health Psychology at the University of Valencia. Throughout my career, I have been involved in clinical practice and since 2015 I have been working in the psychology department of Fundación AHUCE.
What is the project about? The project aims to contribute to increase the knowledge on chronic pain experience in the adult population with OI. In order to do so, we will observe variables such as the frequency with which pain appears, its characteristics and the relationships it establishes with other important factors.
With this goal in mind, we first selected the most appropriate standardized questionnaires and created an anonymous 20-minute online survey, which can be filled out from a computer, tablet or mobile phone.
The second phase of the project, which we are currently in, consists of the dissemination of the survey by email, social media and through the OI-organizations. This is an international study, so anyone can participate regardless of his or her country of residence. The questionnaire is available in English and Spanish.
Later we will proceed to the statistical analysis of the data and publication of the results. This descriptive study is part of a doctoral thesis and a collaboration agreement between Fundación AHUCE and the University of Valencia.
PhD Jose F. Soriano, professor at the Faculty of Psychology of the University of Valencia, and Vicente Monsalve Dolz, psychologist at the Pain Unit of the General University Hospital of Valencia and professor at the University of Valencia, also participate as researchers in the project and co-directors of my thesis. Julia Piniella, technical director of Fundación AHUCE, is involved in the organization, presentation and supervision of the project, as well as in the dissemination and distribution of the questionnaires and the cooperation with OI patients and groups.
Why the topic Pain? In our daily work at the foundation, we observed that chronic pain is a reality in adults affected by OI. After reviewing the existing scientific literature, we realized that it was an important and under-researched topic. Although we are aware of the need for a multidisciplinary approach, we believe that a study from a psychological perspective will contribute to the knowledge about pain in OI and will potentially open new lines of research.
What is the goal of the study? The main objective of the study is to evaluate the distribution of chronic pain in the adult population with OI and to observe how it relates to sociodemographic, clinical and psychological variables. Among other measures, we intend to observe the proportion of adults with OI affected by chronic pain in a large sample and the characteristics of this type of pain in relation to factors such as age, exercise or type of mutation. Furthermore, we are going to evaluate the role of psychological variables such as assessment, coping and personality. The study will also assess the impact of pain on day-to-day activities and perceived quality of life.
Who is the target group? People with OI who are over 18 years of age, whether or not they have chronic pain and regardless of the country in which they live. The survey is available in Spanish and English in a simple language. With a minimum knowledge of one of the two languages, it is possible to answer the questions. The translation and validation of questionnaires into other languages is a very time-consuming and costly process. That is why we have chosen these two languages.
What is the time frame? Initially the survey will remain open until December 31st 2018.
How were patients involved in the planning? Working with patient associations is essential. They are a bridge between the academic world and the reality of people affected by OI. Through email or videoconference, we contact them to explain the project and ask for their collaboration in the dissemination of the survey. Without their help, it would not be possible to get a meaningful sample of people and the study would not be successful. As far as design is concerned, it has mainly emerged from the joint work of Fundación AHUCE and the University of Valencia, following scientific criteria and in line with other similar research projects. However, recognized professionals in the field of the OI have advised us and we are always open to suggestions and recommendations from other stakeholders. In fact, we have made some important changes thanks to them.
Any messages to the readers of OIFE Magazine? First, we would like to thank all the people interested in this project, especially those who have participated by completing the survey and sharing it. We would also like to thank OIFE and the other associations and groups for their support and help in disseminating the study. Your participation is necessary to advance in research. Thank you very much