Dear potential study participant,

I hope this letter finds you well. I am writing to invite you to participate in a research study to better understand suffering among patients with Multiple Sclerosis (MS). Your participation would help healthcare professionals to assess and develop individualized interventions to ease suffering.

This study aims to evaluate a newly created scale that measures MS-related suffering. This scale measures the frequency and impact of physical, psychological, existential/spiritual, social, healthcare-related suffering, as well as  factors that alleviate suffering. Your responses will allow us to learn if the scale is valid and reliable, as well as give basic information about how much suffering persons with MS experience. Participation in this study is a one-time commitment of 20-30 minutes spent completing the questionnaires. These can be completed online, in the comfort of your own home

Your Participation

Your participation in this study is entirely voluntary. Whether you decide to participate or not will have no effect on the quality of care you receive. If you agree to participate, you will be contributing to new knowledge that has the potential to benefit many individuals in the future. As many as 600 persons with MS may participate.

Confidentiality and Consent

Your responses to the survey will remain completely anonymous. I am committed to protecting your privacy. Your information will be stored securely and only accessible to authorized research personnel. I will ensure that all findings are reported in a way that does not identify any individual participants.

If you are willing to participate, you will be asked to provide a "yes" or "no" response to a screening question and then directed to the questionnaires. By submitting your answers, you are giving your consent to participate. Upon completion of the study questionnaires, you will receive a notification that your study participation has ended. This is your confirmation that I have received your response.

You may contact an impartial third party not associated with this study regarding any question or complaint by calling +1 (909) 558-4647 or e-mailing patientrelations@llu.edu for information and assistance. If you have questions specifically about the study, please contact me at cwilder@students.llu.edu.

With much respect and appreciation, 

Carolyn Wilder, PhD(c), BSN RN

 

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