This one is from 2012. 74% of living kidney donors who donated between 1997 and 2009 at the Leiden University Medical Center filled out the questionnaires, including the Short-Form 36 (yep, that one again; popular with the researchers);the Multidimensional Fatigue Inventory; and the Utrecht Scale for Evaluation of Rehabilitation-Participation (regarding societal participation).
The following is important, in regards to analyzing the results (emphasis mine):
The component summary scores are standardized to the general Dutch population, using the Dutch regression coefficients, so that a score of 50 is the reference value (the expected HRQoL) for the Dutch population of that age and gender. A reduced HRQoL was defined as a PCS or MCS lower than 45, because a 5-point difference is regarded as clinically relevant and which is 10% lower than the average expected HRQoL in the general population (standardised for age and gender). Given that the average HRQoL in living kidney donors is known to be higher on average than the general population, a cut-off of 45 means that these donors do not only have a 10% lower score than the general population, but can be considered very low compared to the average HRQoL scores among other donors.
Fatigue was measured with the Multidimensional Fatigue Inventory (MFI-20) , which covers the following dimensions of fatigue: (i) general fati- gue; (ii) physical fatigue; (iii) mental fatigue; (iv) reduced motivation and (v) reduced activity. In each of the five subscales, scores range from 4 to 20, with higher scores indicating greater fatigue.
the Utrecht Scale for Evaluation of Rehabilitation- Participation (USER-Participation) . The USER-Participation covers three aspects of societal participation: frequency of participation, restriction in participation and satisfaction with participation. In each of the three sub-scales, scores range from 0 to 100, with higher scores indicating higher frequency of participation, fewer restrictions in participation and more satisfaction with participation.
Of all donors 35% were male. The mean age at donation was 51.7 years and the mean time since donation was 5 years (range 0.9–13.5 years). Most of the donors had donated a kidney to a first degree relative (child, father/mother) or to a second degree relative (brother, sister).
Note: in the U.S. the average age at donation is 40/41. More women than men, but not this lop-sided, and yes, most donate to a first-degree relative (and overwhelming majority donate to someone they are emotionally related to).
Results (all emphasis mine again):
A reduced PCS was associated with a higher BMI and smoking prior to donation.
18% of LKDs had a reduced Mental Component Summary. “They did not differ in BMI, blood pressure, kidney function, percentage of cardiovascular events compared to donors without reduced MCS, but on average had higher expectations regarding interpersonal benefits, health consequences and quid pro quo prior to donation.”
“No difference was found between donors of whom the recipient had graft failure (immediate or later), graft loss or died, with the other donors in the expectations they reported to have had prior to donation. This suggests that donors who reported more negative expectations are not just donors with worse outcomes in the recipient.”
“Donors with reduced PCS (physical component summary) and MCS subscales reported significantly higher fatigue on all dimensions of the MFI-20 (multidimensional fatigue inventory) and lower societal participation both in terms of frequency and satisfaction, as well as more restrictions.”
“…donors with reduced PCS/MCS clearly have higher fatigue scores indicating more fatigue than the general population, particularly for general and physical fatigue”
About that fatigue:
“Donors with reduced MCS had a lower blood hemoglobin level post donation.”
Hemoglobin carries oxygen from the lungs via red blood cells throughout the body. Low hemoglobin is commonly known as anemia. Some of the symptoms of anemia include fatigue, paleness, and shortness of breath. Anemia forces the heart to work harder to distribute oxygen, which can cause an erratic heart rate or other heart problems down the road. Having only one kidney also puts a strain on the heart, so anemia would be sort a double-whammy.
This is the fourth study I’ve run across recently (three of them published quite recently) finding that a significant chunk of living kidney donors experience a reduced quality of life post-donation. So when will the transplant industry begin to care for us?
de Groot, I., Stiggelbout, A., van der Boog, P., Baranski, A., Marang-van de Mheen, P., & , . (2012). Reduced quality of life in living kidney donors: association with fatigue, societal participation and pre-donation variables Transplant International, 25 (9), 967-975 DOI: 10.1111/j.1432-2277.2012.01524.x