Written information for potential living kidney donors

Abstract

To meet the constantly growing demand for organs for transplantation the use of living related and unrelated donors continues to increase. Transplant units with a living-donor programme often provide written information to their potential kidney donors. We saw a need to assess the contents of these brochures. Written information for potential live kidney donors was requested from different Transplant units throughout the world. We obtained and analysed 16 different brochures from 14 countries. The general approach ranged from persuasive to almost deterring. Sixteen main themes were identified in the information material. Eight of those were considered paramount, namely voluntarism, medical suitability, short-term donor risks, longterm donor risks, risk of graft loss, outcome with and without a living donor, postoperative course, and financial conditions. Five brochures covered a11 these crucial matters. When mentioned, examples and interpretations of donor risks were very dissimilar. Furthermore, the conditions for donation were obviously very different in the various countries. This review points at essential issues to be included in the written information for living kidney donors. All transplant units with a living-donor programme should provide such information, thus enabling the potential donor to make a thorough decision.

Living kidney organ donation: experiences of spousal support of donors

“…Overall, the information on financial implications, as reported by these husbands, received little attention by health care providers. Lennerling and Nyberg (2004) agree that some transplant brochures fail to mention financial burden.…”

The Need for a Standardized Informed Consent Procedure in Live Donor Nephrectomy

“…Authors agree that although medical aspects of donation are usually well covered, psychosocial and financial aspects are much less frequently discussed (22,23,27). Worsened familial relations associated with live kidney donation are reported in a small number of cases and up to 25% of donors deal with adverse financial effects (28).…”

Living Kidney Donors and Their Family Caregivers: Developing an Evidence-Based Educational and Social Support Website

“…22–24 Areas that have been acknowledged as inadequate include donor reports of unexpected financial hardships related to the donation, 22–25 recovery from surgery being more painful than they had anticipated, 23,24 and seeking further information regarding surgery from the Internet. This finding was consistent with results of studies of family caregivers across many types of illness.…”

“…By using a variety of engaging and interactive methods, Internet-based resources can reach out to a more heterogeneous patient population, cross over generational barriers benefiting multiple learning styles. 22,23 However, very few studies have prospectively examined the adequacy of education for living donors and their caregivers. In an exploratory study 24 of living kidney donors, fewer than 20 participants (20%) reported that they “felt well informed.” Researchers must invest more time in developing theory-based online interventions and modes of educational delivery.…”