Donors' Health-related Quality-of-Life and Psychosocial Outcomes 3 Years After Uterus Donation for Transplantation

Stina Järvholm; Niclas Kvarnström; Pernilla Dahm-Kähler; Mats Brännström


Hum Reprod. 2019;34(7):1270-1277. 

In This Article

Abstract and Introduction


STUDY QUESTION: What are the effects on donors' health-related quality-of-life, mood and marital relationship 2 and 3 years after uterus donation for transplantation?

SUMMARY ANSWER: Overall, uterus donors were relatively stable regarding health-related quality-of-life, mood and marital relationship after donation, although slight negative deviations existed in a few participants, presumably associated with older age or with continued non-pregnancy outcomes from the donation.

WHAT IS KNOWN ALREADY: Uterus transplantation has recently proved to be a successful treatment for absolute uterine factor infertility. However, there is no previous research on health-related quality-of-life and long-term psychosocial outcomes of donors. The present cohort of nine donors represents the cases of the first clinical uterus transplantation study, which took place in Sweden. Long-term follow-up studies of health-related quality-of-life in other living donors, such as of kidneys and livers, suggest that donors have above average quality-of-life prior to donation and that this typically continues during the years after donation. In our previous 1-year report on psychosocial and quality-of-life outcomes, we found that two out of nine donors showed decreased health-related quality-of-life at 6 and 12 months post donation.

STUDY DESIGN, SIZE, DURATION: This complete, prospective cohort study included the nine donors of the first uterus transplantation trial, which took place in Sweden in 2013. Donors were assessed by questionnaires 2 and 3 years after surgery for uterus donation.

PARTICIPANTS/MATERIALS, SETTING, METHODS: The nine donors (aged 39 to 62 years) were all a close relative or friend of their recipient. Physical and mental component summaries of health-related quality-of-life were measured with the SF-36 questionnaire. Mood was assessed by the Hospital Anxiety Depression Scale. Relationship with partner was measured with the Dyadic Adjustment Scale.

MAIN RESULTS AND THE ROLE OF CHANCE: The physical and mental components of the SF-36 were generally above the mean scores for a normative population. At Year 3, the two oldest donors (above 60 years of age at surgery) showed clear negative deviations in the physical component. The mental component summary of SF-36 was essentially unaltered overall at Year 2, but slight negative deviations were seen in three donors at Year 3. These three donors were among the four with unsuccessful pregnancy outcomes for the recipients following donation. Scores of anxiety and depression (mood) were within normative values for all donors at Year 2, but one donor presented with increased (worse) values for both variables at Year 3. Two donors showed signs of relationship distress during the follow-up period and another had divorced during this period.

LIMITATIONS, REASONS FOR CAUTION: The small sample size is a limitation.

WIDER IMPLICATIONS OF THE FINDINGS: The present study suggests that live uterus donation does not in general negatively influence health-related quality-of-life, mood and relationship in a 2 to 3-year perspective follow-up. Longer follow-up studies, including larger number of donors and in different cultural settings, are needed.

STUDY FUNDING/COMPETING INTEREST(S): The Jane and Dan Olsson Foundation for Science; the Wallenberg Foundation; an ALF grant from the Swedish state under an agreement between the government and the county councils; the Swedish Research Council; a Ferring Pharmaceuticals scholarship in memory of Robert Edwards; and the Iris Jonzén-Sandbloms and Greta Jonzéns Foundation. The authors have no competing interests.


Uterus transplantation (UTx) is a quality-of-life enhancing transplantation and the first available treatment for absolute uterine factor infertility (AUFI), which affects around 20 000 women of fertile age in a general population of 100 million (Milliez, 2009; Sieunarine et al., 2005). The success of this type of transplantation was initially demonstrated in September 2014, when the first live birth after UTx took place (Brännström et al., 2015) in a woman who received a transplant in early 2013, as one of nine women undergoing live donor UTx in a Swedish trial (Brännström et al., 2014), which includes the cohort of the present study. The initial proof of concept of UTx as a realistic AUFI treatment has later been confirmed within this initial Swedish trial (Brännström et al., 2016) and also in a live donor UTx trial in the USA (Testa et al., 2018) and deceased donor UTx trial in Brazil (Ejzenberg et al., 2018).

Prior to the initial Swedish trial, two separate single UTx cases had been performed with the first one in 2000 involving a live donor case (Fageeh et al., 2002) and the second case involving a deceased donor (Ozkan et al., 2013). Live births were not reported from these cases.

In recent years, the activity in the UTx field has increased considerably and published cases, covering the results of surgery, now exist from live donor trials in China (Wei et al., 2017), Germany (Brucker et al., 2018), the USA (Testa et al., 2018) and the Czech Republic (Chmel et al., 2018), as well as from deceased donor trials initiated in the USA (Flyckt et al., 2017), Brazil (Ejzenberg et al., 2018) and the Czech Republic (Chmel et al., 2018). The majority of the published cases of UTx has involved live donors, both related and non-related. The ethical debate associated with UTx is evolving, with the risk–benefit ratio now considered acceptable for live donor UTx, although the debate also includes deceased versus live donor UTx (Olausson et al., 2014; Testa and Johannesson, 2017).

Living donation in transplantation is established in the areas of kidney and liver transplantation and may also be applied in lung transplantation. There is extensive research following up on the psychological well-being and health-related quality-of-life of donors, particularly kidney donors. A systematic review of the psychosocial health of live kidney donors included around 50 studies with an average follow-up of 4 years (Clemens et al., 2006). A clear majority (between 75% and 95%) reported no depression or anxiety post donation and relationships with partners generally remained good and stable. However, adverse outcomes such as reduced quality of relationships, reduced quality-of-life and an increase of psychiatric symptoms were found in a small proportion of donors, and it was suggested that careful selection, with good donor support and follow-up, are essential to ensure successful outcomes (Clemens et al., 2006).

The present trial included nine procedures from live donors, and the characteristics concerning both donors and recipients have been described previously (Brännström et al., 2014). Two grafts were lost during the initial months while embryo transfer (ET) was initiated in seven women from 12 months after surgery. We were aware of the fact that during the introductory phase of a new type of live-donation transplantation, with unknown medical and psychosocial risks, it is of great importance to follow-up all aspects of donor health. Psychologically, a donor hysterectomy is not comparable to a hysterectomy on a benign indication, as the latter provides the patient with a fairly immediate medical benefit and there are no additional worries about the health of a third person (the recipient) and the uterus function. Moreover, the time frames after a hysterectomy for donation are different from the time frames for a hysterectomy required due to uterine disease. After uterus donation, the birth of a healthy child is the end point, and there may be several years from transplantation until this is achieved.

For the present trial, data regarding 1-year psychosocial and medical outcomes of the donors have been reported previously (Kvarnström et al., 2017). In that study, by tracking results every 3 months after transplantation up to 1 year, we found that two out of nine donors showed decreased health-related quality-of-life at 6 and 12 months. There were no signs of increased anxiety or depression.

Here, we report the 2- and 3-year outcomes on health-related quality-of-life, mood and relationships of the first series of UTx donors.