Categories
Living Donor Protections Living Donor Research Living Kidney Donor Psychosocial Risks

Resilience and Quality of Life in Living Kidney Donors

Resilience, according to various sources on the net, is described as an ability to recover quickly from misfortune, change or difficulty; moderating the negative effects of stress, and promoting adaptation.

 

In this study, 161 potential living kidney donors took the RS-13 (Short version of the Resilience Scale), which “measures the competence to moderate the negative effects of stress, and acceptance of life and self”. The prospective kidney donors had higher resilience scores than the norm. The 12 excluded potential living donors had resilience scores comparable to the norm.

 

For quality of life, the researchers “used the German version of WHOQOL-Bref, which includes four domains such as physical health, psychological health, social relationships and environmental conditions.”

“In all domains of quality of life, eligible donors had significantly higher values than the normative sample”

 

(emphasis mine)

Three months after donation health-related quality of life was significantly impaired in all domains compared to pre-donation values

“Out of the whole group of potential kidney donors (n=?161) 111 have undergone a nephrectomy. 41 (46.7 %) donors responded to follow-up questionnaires by mail*. Three months after donation, all domains of health related quality of life were correlated significantly with pre-donation resilience score”

“Our results indicate donors may have higher distress levels in the early period after nephrectomy. Psychosocial support may be most necessary at this point in time.”

 

One more note (emphasis mine):

“The authors reported emotional summary score for quality of life was lower in female donors, caused by a reduced role functioning. The world-wide higher incidence of depressive disorders in women may explain the differences. Women may be burdened by multiple familial role requirements in the context of donation, e.g. as donors and simultaneously as care giving marital partners. Nevertheless this finding requires further investigation and women should be regarded as a risk group.”

This echoes another recent study, which found that female living donors experienced greater fatigue, role function reduction and depression post-donation.

 

*Gotta wonder about that other half.
Erim, Y., Kahraman, Y., Vitinius, F., Beckmann, M., Kröncke, S., & Witzke, O. (2015). Resilience and quality of life in 161 living kidney donors before nephrectomy and in the aftermath of donation: a naturalistic single center study BMC Nephrology, 16 (1) DOI: 10.1186/s12882-015-0160-z

Categories
Living Donor Research Living Donor Risks Living Kidney Donor Psychosocial Risks

Fatigue, Decreased Quality of Life in Living Kidney Donors

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.

And:

Fatigue was measured with the Multidimensional Fatigue Inventory (MFI-20) [21], 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.

And finally:

the Utrecht Scale for Evaluation of Rehabilitation- Participation (USER-Participation) [22]. 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.

 

Demographics:

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

Categories
Living Donor Research Living Kidney Donor Psychosocial Risks

Female Living Kidney Donors Show Impairment

ETA 10-3-2015: more info and links.

Researchers at the Transplant Center at Heidelberg provided inventories to 400+ of their living donors, an average of 77 months post-donation. From the abstract:

  • 27% were receiving hypertensive medication.
  • SF-36 mental component summary score was lower for female donors, caused by a reduced role functioning.
  • Prevalence of fatigue was increased in female donors between the ages of 40 and 59 years.

 

This is how this particular transplant center selects and treats their living kidney donors:

“According to the Center’s practice, a medically low-risk population is eligible for donation. Body mass index should
be <35 kg/m2 and blood pressure has to be well controlled with at least two antihypertensives (systolic/diastolic blood pressure <140/90 mmHg). Donors with diabetes or impaired fasting glucose concentrations as well as donors
with obvious psychiatric diseases are not accepted as living renal donors.”

“In addition,medical history, clinical data, laboratory, and extensive body examination results were collected during the regular visits at the Transplant Center prior to living donation and yearly thereafter.”

US transplant centers are supposed to provide follow-up at six weeks, six-months, one-year and two-years post-donation. However, as of 2013, 35% were reported lost by one year with no indication contact was attempted. LKDs are on their own after two years, and mental health care is never required.

 

About the assessment tools used:

“The SF-36 is a self-assessment of day-to-day function and well-being over the previous 4 weeks. The SF-36 contains eight multi-item subscales: general health perceptions, physical functioning, physical role (role limitations due to physical problems), bodily pain, general mental health, vitality (vitality, energy, fatigue), emotional role (role limitations due to emotional problems), and social functioning.”

“The MFI-20 [Multidimensional Fatigue Inventory] is a 20-item self-administered questionnaire developed to assess fatigue and to reflect feelings over the previous few days [17]. The MFI-20 consists of five subscales: general fatigue, physical fatigue, mental fatigue, reduced activity, and reduced motivation.”

“Depression was measured with the depression part of the Psychosomatic Health Questionnaire PHQ-9 [19]. The
PHQ-9 is the summary of nine items on a three-point scale with higher scores indicating more depressive symptoms
within the previous 4 weeks. Somatization was measured using the PHQ-15 somatic symptom module [20], which
consists of 15 items on somatic symptoms and answered on a three-point scale.”

 

Composition of the study participants:

“In total, 430 of 519 living renal donors were eligible to participate. Eleven previous living kidney donors (median time after donation 245 (43–555) months) had already died (two from cancer, three from cardiac disease, two from liver cirrhosis, and four unknown).”

“…completed questionnaires were returned by 295 living donors [106 (35.9%) male]. Non-responding donors were younger than the responding donors at the time of donation (43  vs. 49) and at the time of questionnaire distribution (55  vs. 57). In the responding donor cohort, the mean age at donation was 49  11 years, with 19 donors over the age of 65 years. The median time after donation was 77 (24–484) months, with 85 (28.8%) donors being ?10 years post-donation”

“68.6% of all donors at the Transplant Center provided informed consent and answered the questionnaires.”

(emphasis below mine)

Most of the donors were first-degree relatives [mother n = 78 (26.4% of total); father n = 58 (19.7%); (brother n = 15 (5.1%); sister n = 32 (10.8%)] and second-degree relative spouses [wife n = 69 (23.4%); husband n = 24 (8.1%)].

Health risks can have a biological component. Also, some transplant professionals seem to hold the belief that relatives have an obligation or duty to donate. Complicated familial relationships can make the decision not to donate nearly impossible.

“93% donors would again donate the kidney to the specific recipient.”

Which is exactly why researchers need to stop asking living donors if they don’t donate again or if they regret donating. Because the question is really asking: Would you try to help your loved one again? Which is an incredibly biased and unfair question.

 

  • Kidney function (GFR) decreased 30% or more in 36.95 of LKDs; 2 donors lost more than 50% of their pre-donation GFR.
  • Significant protein excretion (?150 mg/l) was noted in 2.4% donors before donation and in 5.8% donors post-donation (So that doubled).
  • Antihypertensive medication was administered to 19.0% donors before and to 27.1% donors post-donation. New onset or worsening of hypertension,defined as de novo antihypertensives or >30% increase of
    MAP, was documented in 12.9% donors.

 

Living donors are *supposed to be* healthier and more well-adjusted than the general population. At least this is what the transplant industry keeps telling the public. So, when analysis results say “LDs fare better than the general population”, that’s a reason to yawn. We *should* be, according to the transplant industry’s insistence. But when we are “equal to” or “less than” the general population. we’ve most assuredly been harmed and diminished in some way.

 

  • The role function of female donors was rated lower by living kidney donors compared with the German population.
  • Physical fatigue or mental fatigue above the average results of the general population was detected in 15% and 17% of all the donors.
  • Detailed analysis revealed female donors ranging in age from 40 to 59 years were a more vulnerable population for general and physical fatigue,
  • Depressive disorders, including minor symptoms, were noted in 82.8% of donors with signs of fatigue.
  • Fatigue scores correlated inversely with quality of life assessed by the SF-36 physical
    and mental component score. [This means that as fatigue scores increased, quality of life scores decreased]

 

I’m including the information below not just for the sciency types, but so living donors can understand what symptoms to look for and know they’re not alone:

  • The Mental Component Score measured: disturbances in concentration and memory, brooding, reduced motivation
    (fatigue scale), depression sum score, and partnership problems.
  • The Physical Component Score measured: health concerns, muscle weakness, arthralgia, and deterioration of athleticism.
  • (emphasis mine) Recipient health did not independently predict either of the above two scores.
  • General fatigue was determined by depression symptoms (PHQ-9 sum scale), exhaustion, muscle weakness, the burden of caring for a family member, and having nobody to talk to.
  • The depression sum scale was predicted by Mental Component Scale, Physical Component Scale, sleeplessness, exhaustion, having nobody to talk to, stress at work or school, emotional distress, scar numbness or prickling, and financial difficulties.

 

This is the third recent study demonstrating fatigue, loss of vitality or a decreased quality of life for living kidney donors.The first that revealed a more significant issue in women.

“…guidelines on psychosocial donor evaluation are inconsistent among various transplant centers and countries. There is a need for prospective psychosocial outcome studies on living donors and the use of uniform terminology to label psychosocial screening criteria”

No kidding.

“Detailed analysis shows that fatigue was present in female donors aged between 40 and 59 years. This cohort represents an emotionally and physically highly engaged population. These results have important implications, because this cohort includes a considerable number of donors”

Yes. Exactly.

 

 

Post-script: This little nugget was buried in the middle of the “discussion” portion of the paper (emphasis mine again) –

In the present evaluation, approximately 8.5% of the donors were re-hospitalized after kidney donation; approximately 50% of these were possibly caused by donation (mostly wound problems). Schold et al. reported a cumulative 3-year incidence of re-hospitalization of 9% following donation; readmission resulting from surgical complications in the early post-transplant period might be common.

Common, huh? Wow. Tell that to all the transplant industry folks who keep claiming that complications are non-existent to rare.

 

 

Sommerer, C., Feuerstein, D., Dikow, R., Rauch, G., Hartmann, M., Schaier, M., Morath, C., Schwenger, V., Schemmer, P., & Zeier, M. (2015). Psychosocial and physical outcome following kidney donation-a retrospective analysis Transplant International, 28 (4), 416-428 DOI: 10.1111/tri.12509

Categories
Ethical Considerations Follow-Up Informed Consent Living Donor Research Living Donor Risks Living Kidney Donor Psychosocial Risks

Living Kidney Donors Lose Vitality

The folks at Beth Israel Deaconess Medical Center sent one-year and two-year post-donation surveys to the people who donated kidneys at their hospital from September 2005 through August 2012. Here are what they found:

 

  • Surveys were only returned by half the living kidney donors (59% at one year; 47% at two years). In fact, only 37% of living kidney donors returned both surveys, while 31% returned neither.
  • The non-responding living kidney donors were more likely to be young, non-white, and uninsured at the time of donation.

Non-insured living donors are less likely to seek post-donation follow-up and care, which puts both their short and long-term health at risk. It would be nearly impossible for transplant centers to justify the ethics of performing an elective and health-compromising procedure on an individual they knew doesn’t have access to healthcare – if they were ever asked to justify it, that is. Fortunately for them, there seems to be an implicit belief that living kidney donors don’t require healthcare maintenance and that any means necessary to “save” a recipient is perfectly acceptable. What happens to the person used as the sick recipient’s medical supply is rarely questioned.

 

  • The kidney donors who reported physical health problems associated with donation were less likely to feel informed about donation risks than those without donation-related health concerns (63 vs.
    16 %, p\0.001).

This is a no-brainer if you think about it. OPTN policy is deficient in regards to information about short and long-term risk. Consequently, transplant centers are notoriously lax in what they tell potential living donors. If you’re lucky enough not to experience immediate or short-term complications, there’s no reason for you, as the LKD, to think/believe you weren’t fully informed. It’s only when you’re a donor who *does* have post-donation issues, and you’re unprepared to address them, that it becomes obvious the hospital omitted some crucial information.

 

  • 46% of living kidney donors report more post-surgery pain than expected.
  • 8% reported worse scarring than expected.
  • 30% described the recovery time as slower than expected.
  • Compared to non-obese LKDs, obese donors were more likely to feel that surgical scarring was worse than expected (5 vs. 21 %, p = 0.03) and that the recovery took longer than expected (26 vs. 47 %,
    p = 0.02).

It’s well known that obesity is an independent risk factor for surgical death and/or complications. Obesity also makes the kidneys work harder; many obese individuals with two kidneys experience hypertrophy. Consequently, if one is removed, the remaining kidney, already at 100%, has no capacity to further compensate, leaving the LKD with potentially dangerously low kidney function.

Just like the situation with uninsured living donors, transplant centers have *no* solid ethical ground for exposing obese people to this kind of risk. Luckily for them, no one ever confronts them on it.

 

  • Employed living kidney donors reported being out of work an average of 5.3 (±3.1) weeks. Half were out of work for 5 weeks or more.

Take a gander at transplant-industry related websites and read what they say about recovery time and time off work. Kind of all over the place, aren’t they? Two weeks… six weeks… It’s no wonder people are ill-prepared.

 

  • 18 % of living kidney donors reported donation-related health problems at one-year post-donation. 5 more living kidney donors reported new onset health problems in the second year after donation. These included persistent fatigue, chronic pain or discomfort, infertility, muscle weakness due to positional injury, and new-onset hypertension requiring medication.
  • 31% of living kidney donors gained weight in the first year after donation. They gained a median 10.3 lbs, with an average mean = 2.2 ± 13.1, range = 6–93 lbs.
  • 70% of living kidney donors reported out-of-pocket expenses. The most common expense was for travel (55%), medications related to donation (30%), meals during required transplant center appointments (27%), and lodging (10%).

Costs can be minimized by transplant centers not asking or expecting living donors to travel great distances to donate. But then again, they get paid for surgeries performed, so…

 

  • Also, 20% did not have sufficient paid medical leave or vacation to cover the entire time away from work and consequently lost wages/income.

It wouldn’t be a stretch to think that part of this result is because transplant centers are minimizing recovery time. It’s also probably not a coincidence that approximately the same percentage reporting “insufficient paid leave” is similar to the percentage of LKDs that experience complications.

 

  • 28% of LKDs reported a clinically meaningful decline in vitality at both follow-up time points, relative to pre-donation levels, which indicates a decline in energy and an increase in fatigue.

I didn’t intentionally save the best for last; the article was written that way. But this finding is quite important. The SF-36 Health Survey is a generic tool (meaning that it’s not targeted to a specific age or disorder), that measures eight quality-of-life dimensions.

“Vitality” is both a physical and mental component. The questions use words like “pep” and “nervous” and “energy” and “worn out” and “downhearted”; sentiments many living donors have expressed to me and elsewhere (online forums, etc). Transplant centers regularly minimize or ignore these symptoms, – or flat-out deny they’re associated with donation. (Or my favorite: claim they’ve never heard of such thing – not from their donors!).

But here we have one transplant center’s living kidney donors – folks who donated over a eight-year period –  reporting a significant loss of “vitality”. Due to the kidney donation, of course, but still from varying origins: adrenal dysfunction, reduced kidney function, thyroid dysfunction, depression, etc.

Hopefully this result can be used to influence other transplant professionals’ attitudes and policies. Living donors deserve that much.

 

 

Rodrigue, J., Vishnevsky, T., Fleishman, A., Brann, T., Evenson, A., Pavlakis, M., & Mandelbrot, D. (2015). Patient-Reported Outcomes Following Living Kidney Donation: A Single Center Experience Journal of Clinical Psychology in Medical Settings DOI: 10.1007/s10880-015-9424-9