Survey on Dealing with VHL

Melissa Savage recently graduated with a Master’s degree in Genetic Counseling from Arcadia University in Pennsylvania. She wrote her master’s thesis on “Discovering Self-Efficacy in Patients with von Hippel-Lindau disease,” or in other words how medical professionals can evaluate the patient’s ability to cope. The term “self-efficacy” is defined as “a broad and stable sense of personal competence to deal effectively with a variety of stressful situations.”

Melissa composed a survey, obtained permission from the Internal Review Board at Arcadia and from the VHLFA, and posted an invitation in the online discussion to complete her survey on the internet. A total of 59 people responded, providing her with the raw data used in her paper.

Over all the general self-efficacy of the participants was slightly higher than expected. This group of respondents was already participating in an online support group, and was well informed about VHL, both of which are factors that help patients cope with their illness. Many people cited the importance to them of understanding how VHL works, how to screen for issues, and obtaining information on new treatments.

She concludes that it is not only important to treat each patient as an individual, but it is also important to inquire about their feelings and emotions. She hopes that the emotional side of VHL will get more attention both when doing research about VHL and when seeing patients with VHL.

Melissa would like to thank all those who participated in her study, and we would like to congratulate her on completing her degree.

As printed in the VHL Family Forum 14:2, August/September 2006. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org