Intro
The Welsh School of Pharmacy is developing a new patient centred instrument (measure/index) for evaluating the quality of life of HH patients.
Our goal is to create a user friendly measure that could act as a two way communication tool useful to HH patients as well physicians, enhancing the physician-patient communication in HH. On one hand the tool will allow patients to understand their condition better. On the other hand, the new measure will enable physicians to more accurately understand how their HH patients really feel and how their condition is affecting their lives.
In order to develop a tool of the highest usefulness, HH patients will be involved throughout the development process of the new measure.
As a first step in the process, a group discussion on “how HH affects the everyday life (everyday activities) and the quality of life (i.e. social life, emotional life, satisfaction) of HH patients” has been planned. We are interested in learning how the various dimensions of the participants’ lives are affected by HH.
The discussions will be convened online (text based), via a secure platform. We intend to run three sessions, each taking a period of 7 to 10 days, with different participants. Each participant will take part in one session.
Your role as a participant
Once you confirm to be a participant you will receive a link, a username and a password to ensure your secure access to the platform. Only the moderator will know your real name, to ensure anonymity in the discussions.
Your role, as a participant, will be to take time everyday, during a session, to read the posts made by the moderator (Paul Kamudoni) and the responses of other participants and to give your responses.
Everyone with HH is invited to participate! Drop me an email on KamudoniP@cardiff.ac.uk
Paul Kamudoni
(Lead – Hyperhidrosis Quality of Life Research Team, CSER Welsh School of Pharmacy)
No comments:
Post a Comment