Family planning after transplantation: sex- and organ-related differences in the perception of medical counseling and social challenges

TL;DR

This study explores how transplant patients, especially women, perceive medical counseling and social challenges related to family planning after receiving a visceral or thoracic organ transplant.

Contribution

The study identifies sex- and organ-specific differences in family planning counseling needs and highlights gaps in contraceptive and reproductive advice for transplant recipients.

Findings

Female participants expressed a stronger desire for children and greater concern about pregnancy risks compared to males.

A significant proportion of both men and women reported not receiving adequate contraceptive counseling.

Women, especially thoracic organ recipients, showed higher awareness of pregnancy-related risks and a stronger desire to plan pregnancies in advance.

Abstract

Transplant patients are increasingly of childbearing age. Organ-related health as well as pregnancy-related risks require a standardized approach to family planning counseling. The aim of this study was to explore sex- and organ-related counseling differences and expectations in family planning to improve counseling services and reduce risks after transplantation.

The study was designed as a cross-sectional, multi-center cohort study. A total of 251 participants aged between 18 and 45 years with a visceral or thoracic transplant completed a questionnaire on their attitude toward family planning and experience with medical consultation.

More female than male participants had a desire to have children. Males believed their transplantation-related medication had an influence on their fertility, while women worried it could harm their child. Contraceptive counseling was negated by 43.6% of the women and 73.4% of the men. Medical advice regarding family planning was highly requested by both sexes. Women felt more influenced in their family planning than men. Female thoracic organ recipients worried about a pregnancy more than visceral organ recipients. Women showed great awareness for pregnancy-related risks with the majority wanting to plan a pregnancy beforehand.

The findings revealed a lack of contraceptive counseling and a lack of family planning advice by physicians.

Full text

What does this study add to the clinical work

Transplant recipients receive alarmingly little counseling and support on family planning, with strong gaps particularly evident for female thoracic recipients acutely aware of risks. Standardizing preconception counseling is imperative to optimize patient education and reduce pregnancy-related risks.

Introduction

The gain in life span after an organ transplantation is often experienced as a new chance in life and accompanied by an improvement in perceived quality of life and a reduction in disease symptoms. Transplant patients are increasingly of childbearing age and female [1]. Reproductive plans are similar to those of women in the general population and a majority of previously childless women would like to give birth after transplantation [2].

As fertility returns rapidly after transplantation [3], not every transplant patient receives adequate family planning information and guidance. Obstacles such as organ-related health, mental health, continued medication intake, pregnancy-related risks, and limited life expectancy [4, 5] require a standardized approach to family planning counseling.

Pregnancy is considered high risk, due to a significant rate of prematurity and low birth weight as well as maternal complications like preeclampsia and hypertension [6]. Accurate counseling also includes male transplant recipients since they also share important parts of parenthood such as life expectancy, and the possible transmission of inherited diseases [4] and immunosuppressant medication can negatively affect male hormone levels [7].

Women who were counseled regarding pregnancy after transplantation had more planned pregnancies than those who were not counseled [8] and pre‐pregnancy counseling was significantly associated with post‐transplant pregnancy success [9].

Despite increasing knowledge about the risks of pregnancy in transplant patients, it is important to provide information to patients and their spouses to enable them to make thoughtful decisions regarding family planning, to plan for a pregnancy if they wish, and to make suggestions for safe contraception to delay or to prevent pregnancy. Therefore, the aim of this multi-center study was to explore sex- and organ-related counseling differences, by differentiating between existing knowledge and wishes for further advice as well as to analyze social hurdles.

Materials and methods

Participants and procedure

The study population included female and male recipients of a visceral (kidney, liver) or thoracic (lung, heart) transplantation between 18 and 45 years by the time the survey was conducted.

The study was designed as a cross-sectional, multi-center cohort study and approved by the Institutional Review Board of Hannover Medical School. All participants gave their informed consent. An anonymous web-based questionnaire was generated with a secure online survey platform (Unipark). The questionnaire was accessible from July until December of 2020. During the 6-month recruitment period, patients were mainly approached by written inquiries directed at transplant- and self-help networks as well as by advertisements on the social media account of the primary university hospital. Flyer and posters providing information about the study and the link to participation were available in selected transplant centers in Germany. Eligible participants were also directly informed about the study during their routine clinical follow-up visits or by phone and provided with the link to the online survey.

Questionnaire

The questionnaire was designed by a team of specialists from the Department of Obstetrics and Gynecology and of the Department of Psychosomatic Medicine and Psychotherapy. In addition to sociodemographic and medical information of the participants, questions about family planning, medical counseling, and psychosomatic aspects were assessed using self-constructed questions. The final questionnaire consisted of 148 items covering seven domains. This analysis focuses on 64 questions in the following six domains: demographic and professional characteristics, attitude toward family planning, pregnancy-related health concerns, experience with medical consultation, and social challenges. When appropriate, the level of agreement was assessed using Likert scales.

Statistical analysis

Descriptive statistics were performed to describe the sociodemographic characteristics of the participants and to display their attitude toward family planning, experience with medical consultation, and social challenges after transplantation. To emphasize significant differences, the answers given in a five-point Likert scale were transformed into a three-point Likert scale. To further analyze sex differences and differences within the respective groups of visceral and thoracic transplant recipients, the Mann–Whitney U test was used for data not normally distributed. In all tables, p-values less than 0.05 derived from Mann-Whitney U tests are presented in bold to denote statistical significance. The chi-square-test was applied to test for an association between sex and sexual behavior, the desire to have children, and physician–patient communication about having children and contraceptive counseling. A sample size of 109 was calculated for our study design assuming a small effect size and a power of 90%. For statistical analysis, IBM SPSS Statistics 28.0 and Microsoft Excel (Microsoft Office 2019, version Professional Plus) were used. The level of statistical significance was set at p < 0.05.

Results

Characteristics of the study participants

Baseline demographic, professional, and clinical characteristics of the participants are summarized in Table 1. The group of participants was divided into subgroups based on two distinguishable key characteristics: sex and transplanted organ. Of the 251 participating transplant recipients, 68.5% (n = 172) were female (f), whereas 31.5% (n = 79) were male (m). These two groups were further divided into two subgroups each, based on the transplanted organ. Of the female sample, 64% (n = 110) received a visceral organ, more precisely a kidney or liver transplant. A thoracic organ, consisting of a lung or heart transplant, was received by 36% (n = 62) of women. A visceral organ was received by 70.9% (n = 56) of the male sample, while 29.1% (n = 23) had a thoracic transplant.Table 1. Demographic and professional characteristics of the participants: 251 participants, Germany, 2020Female transplantMale transplantpU-statisticZ-statisticMiddle rankRecipients (n = 172)Recipients (n = 79)Female (f)Male (m)Age (years)33.4 ± 6.337.3 ± 6.9** < 0.001Age (years) at the time of (first) transplantation23.6 ± 9.326.3 ± 12.30.049**[%][n][%][n]TransplantVisceral organ (kidney, liver)64.011070.9560.062611− 1.85279.2491.88Thoracic organ (lung, heart)36.06229.1230.93707− 0.08243.1042.74Employment0.95In education (student, vocational training, university)13.42311.49Employed (full-time)23.34045.636Employed (part-time)31.45412.710Unemployed9.3167.66Retired22.73922.818Education0.36 < 10 years7.0127.6610 years34.35943.034 > 10 years58.710149.439Relationship status0.806693.5− 0.253125.42127.27In a relationship76.213174.759Single23.84125.320Data are presented as mean ± standard deviation or as percentage [%] and absolute number [n]; p—sex differences

At the time of study participation, female transplant recipients were on average younger than men. This also applied to the age at (first) transplantation. While the rate of participants in education, unemployed or in retirement was comparable, more men worked full-time, while more women had part-time employments. The majority of individuals received an education of more than 10 years, while more men than women graduated from school after 10 years. Women and men were as likely to live in a relationship.

Attitude toward family planning and desire to have children

Table 2 illustrates the responses regarding family planning, comparing male and female transplant recipients with a subanalysis of transplanted individuals with a visceral and thoracic organ.Table 2. Participants' attitudes toward family planning: 251 participants, Germany, 2020Female transplant recipients (n = 172)Male transplant recipients (n = 79)[%][n][%][n][%] [n][n^1^/n][%][n][%][n][%][n]YesNoYesNoI am currently sexually active75.012925.04375.96024.119I currently have the desire to have children36.66363.410926.62173.458I can imagine myself having (more) children in the future54.79445.37843.03457.045My attitude towards the desire to have children has changed since my transplantYes, in a positive wayYes, in a negative wayNoYes, in a positive wayYes, in a negative wayNoHaving children is part of a fulfilled life for me19.23326.24554.79424.11919.01557.045The thought of not being able to have (more) children makes me sadAgreePartly agreeDisagreeAgreePartly agreeDisagreePregnancy-related health concerns62.210718.63219.23378.5627.6613.911I believe my medication has an influence on my fertility60.510416.92922.73944.33516.51339.231I believe my medication could harm my childI believe my medication could cause malformations of my child37.26422.73940.16954.44313.91131.625Risking the current state of my health for pregnancy is not an option56.49721.53722.13844.33516.51339.231In case of pregnancy my medication would have to be changed56.49718.03125.64445.63615.21239.231I believe pregnancy could cause damage to my transplant48.88421.53729.751Not applicable (n.a.)I believe I would have a higher risk for complications during pregnancy81.41409.9178.715n.an.aI believe I would have a higher risk for miscarriages during pregnancy47.18129.15023.841n.an.aI believe I would have a higher risk for premature birth during pregnancy79.713715.1265.29n.an.aI am good at assessing the risk of pregnancy for myself59.1101 (171^1^/172)21.136 (171^1^/172)19.934 (171^1^/172)n.an.a67.411621.53711.019n.an.a59.910325.64414.525n.an.ap aU-statisticZ-statisticMiddle rankX^2^PhiFemale (f)Male (m)I am currently sexually active0.870.03− 0.01I currently have the desire to have children0.122.450.10I can imagine myself having (more) children in the future0.092.920.11My attitude towards the desire to have children has changed since my transplantHaving children is part of a fulfilled life for me0.966771− 0.048126.13125.71The thought of not being able to have (more) children makes me sadPregnancy-related health concerns0.025765.5− 2.325120.02139.02I believe my medication has an influence on my fertility0.015500− 2.702133.52109.62I believe my medication could harm my childI believe my medication could cause malformations of my child0.035732− 2.141119.83139.44Risking the current state of my health for pregnancy is not an option0.025646− 2.365132.67111.47In case of pregnancy my medication would have to be changed0.0495842− 1.969131.53113.95I believe pregnancy could cause damage to my transplantI believe I would have a higher risk for complications during pregnancyI believe I would have a higher risk for miscarriages during pregnancyI believe I would have a higher risk for premature birth during pregnancyI am good at assessing the risk of pregnancy for myselfFemale visceral organ transplant recipients (n = 110)Female thoracic organ transplant recipients (n = 62)[%][n][%][n][%][n][%][n][%][n][%][n][n^1^/n]YesNoYes****NoI am currently sexually active80.98919.12164.54035.522I currently have the desire to have children35.53964.57138.72461.338I can imagine myself having (more) children in the future59.16540.94546.82953.233Yes, in a positive wayYes, in a negative wayNoYes, in a positive wayYes, in a negative way****NoMy attitude toward the desire to have children has changed since my transplant22.72520.02257.36312.9837.12350.031AgreePartly agreeDisagreeAgreePartly agree****DisagreeHaving children is part of a fulfilled life for me67.37418.22014.51653.23319.41227.417The thought of not being able to have (more) children makes me sad58.26420.92320.92364.5409.7625.816Pregnancy-related health concernsI believe my medication has an influence on my fertility33.63720.02246.45143.52727.41729.018I believe my medication could harm my child47.35221.82430.93472.64521.0136.54I believe my medication could cause malformations of my child50.05516.41833.63767.74221.01311.37Risking the current state of my health for pregnancy is not an option40.94521.82437.34162.93921.01316.110In case of pregnancy my medication would have to be changed75.58311.81312.71491.9576.541.61I believe pregnancy could cause damage to my transplant40.94532.73626.42958.13622.61419.412I believe I would have a higher risk for complications during pregnancy75.58318.2206.4787.1549.763.22I believe I would have a higher risk for miscarriages during pregnancy52.75824.52722.72570.543 (61^1^/62)14.89 (61^1^/62)14.89(61^1^/62)I believe I would have a higher risk for premature birth during pregnancy67.37422.72510.01167.74219.41212.98I am good at assessing the risk of pregnancy for myself59.16524.52716.41861.33827.41711.37p bU-statisticZ-statisticMiddle rankX^2^Phi(f) Visceral(f) ThoracicI am currently sexually active0.025.680.18I currently have the desire to have children0.670.18-0.03I can imagine myself having (more) children in the future0.122.430.12My attitude toward the desire to have children has changed since my transplant0.863361.5-0.17286.9485.72Having children is part of a fulfilled life for me0.042857-2.04291.5377.58The thought of not being able to have (more) children makes me sad0.7123309-0.36985.5888.13Pregnancy-related health concernsI believe my medication has an influence on my fertility0.052836.5-1.95881.2995.75I believe my medication could harm my child** < 0.0012374-3.69477.08103.21I believe my medication could cause malformations of my child0.012627.5-2.79379.3999.12Risking the current state of my health for pregnancy is not an option0.0022513.5-3.10678.35100.96In case of pregnancy my medication would have to be changed0.012826.5-2.74681.295.91I believe pregnancy could cause damage to my transplant0.0492838-1.97081.395.73I believe I would have a higher risk for complications during pregnancy0.073012-1.81182.8892.92I believe I would have a higher risk for miscarriages during pregnancy0.032768-2.14880.6695.62I believe I would have a higher risk for premature birth during pregnancy0.9453392-0.70086.6686.21I am good at assessing the risk of pregnancy for myself0.633276.5-0.48785.2988.65Male visceral organ transplant recipients (n = 56)Male thoracic organ transplant recipients (n = 23)[%][n][%][n][%][n][%][n][%][n][%][n]YesNoYesNoI am currently sexually active75.04225.01478.31821.75I currently have the desire to have children30.41769.63917.4482.619I can imagine myself having (more) children in the future46.42653.63034.8865.215Yes, in a positive wayYes, in a negative wayNoYes, in a positive wayYes, in a negative wayNoMy attitude toward the desire to have children has changed since my transplant19.61119.61160.73434.8817.4447.811Having children is part of a fulfilled life for me78.6445.4316.1978.31813.038.72AgreePartly agreeDisagreeAgreePartly agreeDisagree**The thought of not being able to have (more) children makes me sad39.32217.91042.92456.61313.0330.47Pregnancy-related health concernsI believe my medication has an influence on my fertility53.63017.91028.61656.6134.3139.19I believe my medication could harm my child46.42616.1937.52139.1917.4443.510I believe my medication could cause malformations of my child48.22714.3837.52139.1917.4443.510p cU-statisticZ-statisticMiddle rank (m) visceral (m) thoracicX^2^PhiI am currently sexually active0.760.1− 0.04I currently have the desire to have children0.241.410.13I can imagine myself having (more) children in the future0.340.910.11My attitude toward the desire to have children has changed since my transplant0.20539− 1.27141.8835.43Having children is part of a fulfilled life for me0.90635.5− 0.12839.8540.37The thought of not being able to have (more) children makes me sad0.19532− 1.31238.0044.87Pregnancy-related health concernsI believe my medication has an influence on my fertility0.83626− 0.21740.3239.22I believe my medication could harm my child0.56594− 0.58640.8937.8I believe my medication could cause malformations of my child0.51587.5− 0.66541.0137.54Data are reported as percentage [%] and absolute number [n]; where applicable, the number of answering participants/total participants [n^1^/n] are given, p a sex differences, p b differences between female visceral and thoracic organ transplant recipients, p c differences between male visceral and thoracic organ transplant recipients

Around two-thirds of the participating women and men answered being sexually active. A desire to currently have children was stated by 36.6% of females and 26.6% of males. More than half of the participants considered having (more) children in the future with no difference with regard to sex. More than half of the participants of both sexes felt their attitude toward the desire to have children had not changed after their transplantation. Of the other half, 19.2% of females and 24.1% of males developed a positive attitude toward this topic. Within the female sample, roughly twice as many recipients with a visceral organ felt a positive change compared to thoracic organ recipients.

Especially men (78.5%) felt having children was part of a fulfilled life, while only 62.2% of women shared this opinion. Moreover, within the female participants, visceral transplant recipients agreed significantly more with this statement than thoracic transplant recipients.

On the contrary, significantly more women felt sad about the possibility of not being able to have (more) children than men. No significant differences were found within the same-sex groups based on the transplanted organ.

In terms of health concerns, especially men believed their transplantation-related medication had an influence on their fertility. Women, on the other hand, worried significantly more that their medication could harm their child or cause malformations. About half of the women stated that risking their own current state of health for pregnancy was not an option either. Nevertheless, 30% disagreed with the statement. Whereas the male sample showed no difference related to the transplanted organ, in the female group, thoracic transplant recipients perceived significantly higher risks in harming or causing fetal malformations through their medication, as well as risking their own current state of health for pregnancy. Consequently, the majority of women believed their medication would have to be changed in case of a pregnancy. Half of them also felt pregnancy could cause damage to their transplant. Following this trend, women also showed great awareness for pregnancy-related risks. Because of their transplant, the majority agreed or partly agreed to have a higher risk for complications, miscarriages, and premature birth during pregnancy. Risks were perceived very similar unrelated to the type of transplanted organ. Only the risk of having a miscarriage was significantly more perceived as a threat by thoracic transplant recipients. Overall, 60% of the women felt fully capable of assessing the risk of pregnancy themselves.

Experience with medical consultation and wishes for advice

Table 3 displays sex-related differences in the participants’ experience with medical consultation regarding family planning and a subanalysis based on the transplantation of a visceral or thoracic organ.Table 3. Participants' experience with medical consultation. 251 participants, Germany, 2020Female transplant recipients (n = 172)Male transplant recipients (n = 79)YesNoYesNo[%][n][%][n][%][n][%][n]I attend a gynecological examination on a regular basis94.21625.810././././Doctors have talked to me about contraception56.49743.67526.62173.458Doctors have talked to me about the desire of having children50.08650.08639.23160.848AgreePartly agreeDisagreeAgreePartly agree****Disagree[%][n][n^1^/n][%][n][n^1^/n][%][n][n^1^/n][%][n][n^1^/n][%][n][n^1^/n][%][n][n^1^/n]I wish for (more) medical advice regarding the topic of family planning58.710111.62029.75141.83322.81835.428Current desire to have children: yes77.849(63^1^/172)7.95(63^1^/172)14.39(63^1^/172)52.411(21^1^/79)38.18(21^1^/79)9.52(21^1^/79)Current desire to have children: no47.752(109^1^/172)13.815(109^1^/172)38.542(109^1^/172)37.922(58^1^/79)17.210(58^1^/79)44.826(58^1^/79)Thinking about the topic of having children is difficult for me27.94820.33551.78922.81812.71064.451Current desire to have children: yes31.720(63^1^/172)27.017(63^1^/172)41.326(63^1^/172)19.04(21^1^/79)14.33(21^1^/79)66.714(21^1^/79)Current desire to have children: no25.728(109^1^/172)16.518(109^1^/172)57.863(109^1^/172)24.114(58^1^/79)12.17(58^1^/79)63.837(58^1^/79)I wish for open doctoral communication about the topic of family planning72.712512.22115.12657.04520.31622.818Current desire to have children: yes95.260(63^1^/172)3.22(63^1^/172)1.61(63^1^/172)66.714(21^1^/79)28.66(21^1^/79)4.81(21^1^/79)Current desire to have children: no59.665(109^1^/172)17.419(109^1^/172)22.925(109^1^/172)53.431(58^1^/79)17.210(58^1^/79)29.317(58^1^/79)My doctors have advised against (another) pregnancy/fathering43.07415.72741.3716.3513.91179.763I assume my doctors would support my desire to have (more) children43.07422.13834.96062.04925.32012.710I feel well advised by my doctors in terms of family planning34.35930.25235.56126.62140.53232.926I would consult doctors before getting pregnant/fathering a child93.61613.562.9574.75913.91111.49I would take advantage of in vitro fertilization50.053(106^1^/172)20.822(106^1^/172)29.231(106^1^/172)57.120(35^1^/79)17.16(35^1^/79)25.79(35^1^/79)I would plan a pregnancy beforehand90.11554.175.81069.254(78^1^/79)19.215(78^1^/79)11.59(78^1^/79)p aU-statisticz-statisticMiddle rankX^2^Phi(f) FemaleMale (m)I attend a gynecological examination on a regular basisDoctors have talked to me about contraception0.0019.320.28Doctors have talked to me about the desire of having children0.112.520.1I wish for (more) medical advice regarding the topic of family planning0.0445821.5− 2.019131.65113.69Current desire to have children: yes0.08524.5− 1.78344.6735.98Current desire to have children: no0.282867− 1.07786.7078.93Thinking about the topic of having children is difficult for me0.105998.5− 1.662130.63115.93Current desire to have children: yes0.70497.5− 1.83245.1034.69Current desire to have children: no0.542999.5− 0.62085.4881.22I wish for open doctoral communication about the topic of family planning0.025745.5− 2.379132.10112.73Current desire to have children: yes** < 0.001474.5− 3.43945.4733.60Current desire to have children: no0.382929− 0.87886.1380.00My doctors have advised against (another) pregnancy/fathering < 0.0013841− 6.130143.1788.62I assume my doctors would support my desire to have (more) children < 0.0015093− 3.457116.11147.53I feel well advised by my doctors in terms of family planning0.666569.5− 0.446127.31123.16I would consult doctors before getting pregnant/fathering a child < 0.0015509− 4.212133.47109.73I would take advantage of in vitro fertilization0.511728.5− 0.66269.8174.61I would plan a pregnancy beforehand < 0.0015350.5− 3.980133.39108.10Female visceral organ transplant recipients (n = 110)Female thoracic organ transplant recipients (n = 62)YesNoYesNo[%][n][%][n][%][n][%][n]I attend a gynecological examination on a regular basis95.51054.5591.9578.15Doctors have talked to me about contraception64.57135.53941.92658.136Doctors have talked to me about the desire of having children59.16540.94533.92166.141AgreePartly agreeDisagreeAgreePartly agreeDisagree**[%][n][n^1^/n][%][n][n^1^/n][%][n][n^1^/n][%][n][n^1^/n][%][n][n^1^/n][%][n][n^1^/n]I wish for (more) medical advice regarding the topic of family planning51.8579.11039.14371.04416.11012.98Current desire to have children: yes74.429(39^1^/110)2.61(39^1^/110)23.19(39^1^/110)83.320(24^1^/62)16.74(24^1^/62)././Current desire to have children: no39.428(71^1^/110)12.79(71^1^/110)47.934(71^1^/110)63.224(38^1^/62)15.86(38^1^/62)21.18(38^1^/62)Thinking about the topic of having children is difficult for me22.72521.82455.56137.12317.71145.228Current desire to have children: yes20.58(39^1^/110)30.812(39^1^/110)48.719(39^1^/110)50.012(24^1^/62)20.85(24^1^/62)29.27(24^1^/62)Current desire to have children: no23.917(71^1^/110)16.912(71^1^/110)59.242(71^1^/110)28.911(38^1^/62)15.86(38^1^/62)55.321(38^1^/62)I wish for open doctoral communication about the topic of family planning68.27512.71419.12180.65011.378.15Current desire to have children: yes92.336(39^1^/110)5.12(39^1^/110)2.61(39^1^/110)10024(24^1^/62)././././Current desire to have children: no54.939(71^1^/110)16.912(71^1^/110)28.220(71^1^/110)68.426(38^1^/62)18.47(38^1^/62)13.25(38^1^/62)My doctors have advised against (another) pregnancy24.52720.92354.56075.8476.5417.711I assume my doctors would support my desire to have (more) children60.96722.72516.41811.3721.01367.742I feel well advised by my doctors in terms of family planning45.55030.93423.62614.5929.01856.535I would consult doctors before getting pregnant93.61033.642.7393.5583.223.22I would take advantage of in vitro fertilization52.937(70^1^/110)17.112(70^1^/110)30.021(70^1^/110)44.416(36^1^/62)27.810(36^1^/62)27.810(36^1^/62)I would plan a pregnancy beforehand90.91002.736.4788.7556.544.83p bU-statisticz-statisticMiddle rankX^2^Phi(f) Thoracic(f) VisceralI attend a gynecological examination on a regular basis0.340.90.07Doctors have talked to me about contraception0.0048.240.22Doctors have talked to me about the desire of having children0.00110.10.24I wish for (more) medical advice regarding the topic of family planning0.0032582-3.00978.9799.85Current desire to have children: yes0.24408-1.17130.4634.50Current desire to have children: no0.01963-2.69149.5665.16Thinking about the topic of having children is difficult for me0.092920.5-1.71282.0594.40Current desire to have children: yes0.03324.5-2.16728.3237.98Current desire to have children: no0.631281,5-0.48454.0556.78I wish for open doctoral communication about the topic of family planning0.062946.5-1.89182.2993.98Current desire to have children: yes0.17432-1.38131.0833.50Current desire to have children: no0.111127-1.60851.8760.84My doctors have advised against (another) pregnancy < 0.0011668.5-6.03870.67114.59I assume my doctors would support my desire to have (more) children < 0.0011310-7.192105.5952.63I feel well advised by my doctors in terms of family planning < 0.0011994-4.79499.3763.66I would consult doctors before getting pregnant0.983406-0.03086.5486.44I would take advantage of in vitro fertilization0.661199-0.44454.3751.81I would plan a pregnancy beforehand0.693344.5-0.40487.1085.44Male visceral organ transplant recipients (n = 56)Male thoracic organ transplant recipients (n = 23)YesNoYesNo[%][n][%][n][%][n][%][n]Doctors have talked to me about contraception30.41769.63917.4482.619Doctors have talked to me about the desire of having children42.92457.13230.4769.616AgreePartly agreeDisagreeAgreePartly agreeDisagree**[%][n][n^1^/n][%][n][n^1^/n][%][n][n^1^/n][%][n][n^1^/n][%][n][n^1^/n][%][n][n^1^/n]I wish for (more) medical advice regarding the topic of family planning35.72025.01439.32256.61317.4426.16Current desire to have children: yes47.18(17^1^/56)41.27(17^1^/56)11.82(17^1^/56)75.03(4^1^/23)25.01(4^1^/23)././Current desire to have children: no30.812(39^1^/56)17.97(39^1^/56)51.320(39^1^/56)52.610(19^1^/23)15.83(19^1^/23)31.66(19^1^/23)Thinking about the topic of having children is difficult for me21.41212.5766.13726.1613.0360.914Current desire to have children: yes11.82(17^1^/56)17.63(17^1^/56)70.612(17^1^/56)50.02(4^1^/23)././50.02(4^1^/23)Current desire to have children: no25.610(39^1^/56)10.34(39^1^/56)64.125(39^1^/56)21.14(19^1^/23)15.83(19^1^/23)63.212(19^1^/23)I wish for open doctoral communication about the topic of family planning55.43123.21321.41260.91413.0326.16current desire to have children: yes70.612(17^1^/56)23.54(17^1^/56)5.91(17^1^/56)50.02(4^1^/23)50.02(4^1^/23)././Current desire to have children: no48.719(39^1^/56)23.19(39^1^/56)28.211(39^1^/56)63.212(19^1^/23)5.31(19^1^/23)31.66(19^1^/23)My doctors have advised against (another) fathering3.6216.1980.44513.038.7278.318I assume my doctors would support my desire to have (more) children73.24116.1910.7634.8847.81117.44I feel well advised by my doctors in terms of family planning28.61646.42625.01421.7526.1652.212I would consult doctors before fathering a child75.04216.198.9573.9178.7217.44I would take advantage of in vitro fertilization48.113(27^1^/56)18.55(27^1^/56)33.39(27^1^/56)87.57(8^1^/23)12.51(8^1^/23)././I would plan a pregnancy beforehand69.138(55^1^/56)16.49(55^1^/56)14.58(55^1^/56)69.61626.164.31p cU-statisticz-statisticMiddle rankX^2^Phi(m) visceral(m) thoracicDoctors have talked to me about contraception0.241.40.13Doctors have talked to me about the desire of having children0.301.10.12I wish for (more) medical advice regarding the topic of family planning0.12508− 1.57337.5745.91Current desire to have children: yes0.2923.5− 1.05010.3813.63Current desire to have children: no0.11280.5− 1.61727.1934.24Thinking about the topic of having children is difficult for me0.64607.5− 0.46539.3541.59Current desire to have children: yes0.4124− 1.07410.4113.50Current desire to have children: no0.95367− 0.06829.5929.32I wish for open doctoral communication about the topic of family planning0.86629.5− 0.17539.7440.63current desire to have children: yes0.5228− 0.65111.359.50Current desire to have children: no0.56338.5− 0.58628.6831.18My doctors have advised against (another) fathering0.70619− 0.38539.5541.09I assume my doctors would support my desire to have (more) children0.004**411.5− 2.91044.1529.89I feel well advised by my doctors in terms of family planning0.07486− 1.81842.8233.13I would consult doctors before fathering a child0.78624− 0.28440.3639.13I would take advantage of in vitro fertilization0.0761− 2.07516.2623.88I would plan a pregnancy beforehand0.76610− 0.30439.0940.48Data are reported as percentage [%] and absolute number [n]; where applicable, the number of answering participants/total participants [n^1^/n] are given, p a sex differences; p b—differences between female visceral and thoracic organ transplant recipients, *p c *differences between male visceral and thoracic organ transplant recipients

The vast majority of female transplant recipients attended a gynecological examination on a regular basis without a difference between the transplanted organs. However, regarding the important topic of contraceptive counseling, almost half of the women and three-quarters of the men did not feel informed enough by their caregivers. When differentiating by the transplanted organ, more than half of the female thoracic transplant recipients negated contraceptive counseling compared to about one-third of visceral recipients. Meanwhile, physicians had not talked about the desire of having children to half of the women and to over 60% of the men. An organ-related difference could be found within the female group with over 60% of thoracic organ recipients not receiving medical advice on this topic compared to 40% of visceral organ recipients.

In contrast, the wish for further medical advice regarding family planning was very present among the majority of participants. Advice was especially highly requested by both sexes when the participant currently had a desire to have children. Nevertheless, patients showed considerable interest in family planning advice even without a desire to have children at that time. Within the female group, significantly higher numbers of thoracic transplant recipients with no current desire for children wished for more advice. Within the female group, thoracic transplant recipients found it significantly more mentally challenging to think about the topic of having children than visceral transplant recipients. Especially women wished for open doctoral communication about the topic of family planning. Having stated a current desire to have children, participants requested it more prominently than participants without the desire.

Significantly more number of women than men had been advised against (another) pregnancy by their doctors. Women with a thoracic transplant were more discouraged by their caregivers compared to women with a visceral transplant. In addition, less number of women than men felt supported by their doctors to have (more) children. Both female and male thoracic transplant recipients felt significantly less supported than visceral recipients of the same sex. In terms of family planning, only 34.3% of females and 26.6% of males fully agreed to feel well-advised by their doctors. Moreover, less than 15% of female thoracic patients felt well-advised compared to 45% of visceral organ recipients.

Nevertheless, almost all women and three-quarters of men would consult their doctor before trying to conceive with their partner. Resembling this viewpoint, especially women, independent of the kind of transplant they received, felt the need to plan a pregnancy beforehand. Given the medical necessity, a minority of less than 30% of both sexes would not take advantage of assisted reproduction technologies if recommended to fulfill their desire to have a child.

Social challenges in family planning after transplantation

Information on social challenges in family planning are summarized in Table 4.Table 4. Participants' social challenges in family planning after transplantation. 251 participants, Germany, 2020Female transplant recipients (n = 172)Male transplant recipients (n = 79)[%] [n][n^1^/n][%] [n][n^1^/n][%] [n][n^1^/n][%] [n][n^1^/n][%] [n][n^1^/n][%][n][n^1^/n]AgreePartly agreeDisagreeAgreePartly agreeDisagreeBeing a transplant patient has an influence on my family planning65.711314.52519.83448.1810.1841.833Having a child is possible for me just as for non-transplant parents28.54925.64445.97954.44320.31625.320Being a female transplant recipient is more difficult in terms of family planning81.414011.0197.61378.261(78^1^/79)15.412(78^1^/79)6.45(78^1^/79)Having (another) child would be irresponsible in my situation40.16917.43042.27327.82217.71454.443I couldn't cope with a pregnancy (of my partner) right now43.07417.43039.56832.819(58^1^/79)13.88(58^1^/79)53.431(58^1^/79)I couldn't do justice to (another) child right now41.97212.22145.97935.42815.21249.439If I had (another) child I would neglect my aftercare and medication intake3.562.3494.21622.521.3196.276I am scared I might not be able to see my (possible) children growing up50.987(171^1^/172)19.333(171^1^/172)29.851(171^1^/172)55.64413.91130.424My environment would be critical about me having (another) child33.75823.34043.07416.51311.4972.257I can easily manage my daily life at the moment86.014810.5183.5688.6706.355.14Medication intake and aftercare are a burden14.02420.33565.711313.91126.62159.547I am on top of taking my medication99.41710.61././97.5772.52././(very) goodmedium(very) bad****(very) goodmedium(very) badCurrent health status77.913418.0314.1784.86713.9111.31Current quality of life80.813915.1264.1781.06416.5132.52RangeMeanRange****MeanDepression (PHQ-9)0–275.1 ± 4.00–275.5 ± 5.0Anxiety (GAD-7)0–214.2 ± 3.50–214.5 ± 4.0p aU-statisticz-statisticMiddle rankFemale (f)Male (m)Being a transplant patient has an influence on my family planning0.0025322− 3.159134.56107.37Having a child is possible for me just as for non-transplant parents** < 0.0014839.5− 3.910114.64150.74Being a female transplant recipient is more difficult in terms of family planning0.626524.5− 0.501126.57123.15Having (another) child would be irresponsible in my situation0.0495826.5− 1.967131.63113.75I couldn't cope with a pregnancy (of my partner) right now0.084283− 1.745119.6103.34I couldn't do justice to (another) child right now0.456422.5− 0.763128.16121.30If I had (another) child I would neglect my aftercare and medication intake0.516658− 0.663126.79124.28I am scared I might not be able to see my (possible) children growing up0.666544.5− 0.435124.27128.16My environment would be critical about me having (another) child < 0.0014814− 4.074137.51100.94I can easily manage my daily life at the moment0.636641− 0.488125.11127.94Medication intake and aftercare are a burden0.436432− 0.795123.9130.58I am on top of taking my medication0.196661.5− 1.318126.77124.32Current health status0.196302− 1.327123.14132.23Current quality of life0.936761− 0.090125.81126.42Depression (PHQ-9)0.956759.5− 0.065125.8126.44Anxiety (GAD-7)0.776641.5− 0.287125.11127.93Female visceral organ transplant recipients (n = 110)Female thoracic organ transplant recipients (n = 62)[%] [n][n^1^/n][%] [n][n^1^/n][%] [n][n^1^/n][%] [n][%] [n][%][n]AgreePartly agreeDisagreeAgreePartly agree****DisagreeBeing a transplant patient has an influence on my family planning61.86817.31920.92372.6459.7617.711Having a child is possible for me just as for non-transplant parents33.63727.33039.14319.41222.61458.136Being a female transplant recipient is more difficult in terms of family planning80.08811.8138.2983.9529.766.54Having (another) child would be irresponsible in my situation32.73614.51652.75853.23322.61424.215I couldn't cope with a pregnancy right now38.24215.51746.45151.63221.01327.417I couldn't do justice to (another) child right now39.14312.71448.25346.82911.3741.926If I had (another) child I would neglect my aftercare and medication intake1.820.9197.31076.544.8388.755I am scared I might not be able to see my (possible) children growing up45.950(109^1^/110)20.222(109^1^/110)33.937(109^1^/110)59.73717.71122.614My environment would be critical about me having (another) child23.62621.82454.46051.63225.81622.614I can easily manage my daily life at the moment84.59310.9124.5588.7559.761.61Medication intake and aftercare are a burden14.51619.12166.47312.9822.61464.540I am on top of taking my medication99.1 1090.91././100.062././././(very) goodmedium(very) bad****(very) goodmedium(very) badCurrent health status79.18717.3193.6475.84719.4124.83Current quality of life78.28618.2203.6485.5539.764.83RangeMeanRangeMeanPHQ-90–275.5 ± 4.30–274.4 ± 3.2GAD-70–214.6 ± 3.80–213.6 ± 2.9p bU-statisticz-statisticMiddle rank(f) Visceral(f) ThoracicBeing a transplant patient has an influence on my family planning0.213078.5− 1.25983.4991.85Having a child is possible for me just as for non-transplant parents0.012684− 2.49293.1074.79Being a female transplant recipient is more difficult in terms of family planning0.533277− 0.62685.2988.65Having (another) child would be irresponsible in my situation < 0.0012425− 3.40077.55102.39I couldn't cope with a pregnancy right now0.032765− 2.22780.6496.90I couldn't do justice to (another) child right now0.353144.5− 0.93184.0990.78If I had (another) child I would neglect my aftercare and medication intake0.023119− 2.28983.8591.19I am scared I might not be able to see my (possible) children growing up0.072863− 1.81581.2794.32My environment would be critical about me having (another) child < 0.001**2144− 4.33074.99106.92I can easily manage my daily life at the moment0.423259− 0.80185.1388.94Medication intake and aftercare are a burden0.893375− 0.13386.1887.06I am on top of taking my medication0.453379− 0.75186.2287.00Current health status0.613293.5− 0.51587.5684.62Current quality of life0.283179− 1.07684.4090.23PHQ-90.182993.5− 1.33490.2979.78GAD-70.102893− 1.65991.2078.16Male visceral organ transplant recipients (n = 56)Male thoracic organ transplant recipients (n = 23)[%] [n][n^1^/n][%] [n][n^1^/n][%][n][n^1^/n][%] [n][n^1^/n][%] [n][n^1^/n][%][n][n^1^/n]**AgreePartly agreeDisagreeAgreePartly agreeDisagreeBeing a transplant patient has an influence on my family planning41.12312.5746.42665.2154.3130.47Having a child is possible for me just as for non-transplant parents57.13223.21319.61147.81113.0339.19Being a female transplant recipient is more difficult in terms of family planning76.84316.197.1481.818(22^1^/23)13.63(22^1^/23)4.51(22^1^/23)Having (another) child would be irresponsible in my situation25.01421.41253.63034.888.7256.613I couldn't cope with a pregnancy of my partner right now34.114(41^1^/56)14.66(41^1^/56)51.221(41^1^/56)29.45(17^1^/23)11.82(17^1^/23)58.810(17^1^/23)I couldn't do justice to (another) child right now41.12314.3844.62521.7517.4460.914If I had (another) child I would neglect my aftercare and medication intake1.811.8196.4544.31././95.722I am scared I might not be able to see my (possible) children growing up55.43114.3830.41756.51313.0330.47My environment would be critical about me having (another) child12.5712.5775.04226.168.7265.215I can easily manage my daily life at the moment85.7487.147.1495.7224.31././Medication intake and aftercare are a burden14.3825.01460.73413.0330.4756.513I am on top of taking my medication98.2551.81././95.7224.31././(very) goodmedium(very) bad****(very) goodmedium(very) bad**Current health status82.14616.191.8191.3218.72././Current quality of life76.84319.6113.6291.3218.72././p cU-statisticz-statisticMiddle rank(m) Visceral(m) ThoracicBeing a transplant patient has an influence on my family planning0.10500− 1.72137.4346.26Having a child is possible for me just as for non-transplant parents0.22542− 1.22041.8235.57Being a female transplant recipient is more difficult in terms of family planning0.62583.5− 0.50138.9240.98Having (another) child would be irresponsible in my situation0.86629− 0.18039.7340.65I couldn't cope with a pregnancy of my partner right now0.63323− 0.48430.1228.00I couldn't do justice to (another) child right now0.12513.5− 1.54442.3334.33If I had (another) child I would neglect my aftercare and medication intake0.86638.5− 0.17939.9040.24I am scared I might not be able to see my (possible) children growing up0.95639− 0.06039.9140.22My environment would be critical about me having (another) child0.29567− 1.05738.6343.35I can easily manage my daily life at the moment0.20578− 1.29238.8242.87Medication intake and aftercare are a burden0.81624− 0.24639.6440.87I am on top of taking my medication0.51627.5− 0.65440.2939.28Current health status0.30584− 1.04038.9342.61Current quality of life0.13548.5− 1.51338.2944.15Data are reported as percentage [%] and absolute number [n] or as mean ± standard deviation; where applicable, the number of answering participants/total participants [n^1^/n] are given, *p a *sex differences, p b differences between female visceral and thoracic organ transplant recipients,p c differences between male visceral and thoracic organ transplant recipients

Being a transplant patient, women felt significantly more influenced in their family planning than men. While less than a third of the female participants fully believed that having a child was possible for them just as for non-transplant parents, more than half of the men believed so. In terms of the transplanted organ, less than a fifth of female thoracic recipients fully agreed to the statement which is significantly less compared to a third of female visceral organ recipients. The majority of participants agreed that being a female transplant recipient was more difficult in terms of family planning than a male. Consequently, 40.1% of women worried that having (another) a child would be irresponsible in their situation, while less than a third of men shared this opinion. Female thoracic transplant recipients worried significantly more compared to visceral recipients of the same sex.

Around 40% of females and 30% of males could neither cope with a pregnancy nor did they feel they could do justice to a (another) child at the time. More female thoracic recipients worried about a pregnancy compared to visceral recipients. In general, females and especially thoracic organ recipients felt more judged by their social environment in case of having a child.

A minority of participants believed they would neglect their aftercare and medication intake if they had a (another) child. Life after transplantation, medication intake, and aftercare did not seem to be perceived as a burden by either sex and the perception did not differ depending on the transplanted organ.

To further investigate the involved psychosocial factors, the participants’ current health status and current quality of life were assessed. Around 80% of females and males estimated their quality of life and current health status to be (very) good.

Discussion

To our knowledge, the present study is the first multi-center study to comprehensively explore the attitudes and experiences of solid organ transplant recipients regarding family planning and to investigate sex- and organ-related differences. Our findings on sex- and organ-specific differences provide clues as to how better counseling can be provided in the future to reduce the risks and improve satisfaction in relation to reproductive health after transplantation.

Attitude toward family planning and desire to have children

In this study, independent of sex and the transplanted organ, most participants were sexually active and could imagine having (more) children in the future. Especially female visceral organ recipients developed a desire to have children after transplantation compared to thoracic organ recipients. Coherent with these findings, the literature showed that a similar desire to become a mother was expressed by 42% of post-transplant women compared to 40% of women in the general population [10].

Pregnancy is in fact a valid option for visceral organ transplanted women, as fertility is at least partly restored and there is experience with successful pregnancies [3]. In fertile liver transplant patients, successful transplantation will lead to a return of the menstrual cycle in 97% [11, 12] and women may conceive as early as 1 month after transplantation [13, 14]. However, associated risks of preeclampsia and hypertensive disorders indicate the need for close monitoring of pregnant transplant recipients [15, 16].

Health concerns differed in our cohort with men being worried mainly about fertility issues and women being worried about harming their unborn child by their immunosuppressant medication. The male assessment of risks caused by their medication is also represented in studies showing that after transplantation, hormonal changes improved the possibility of fathering a child [17]. However, choosing the right immunosuppressant medication is important. Patients should be counseled regarding possible adverse effects of mTOR-inhibitors resulting in lower sperm counts and decreased spontaneous pregnancy rates [18]. Another study showed that offspring fathered by males under immunosuppressant medication did not have higher rates of major malformations and preterm delivery; however, it raised the odds to develop preeclampsia [19].

Klewitz et al. revealed a high dissatisfaction in female transplant patients regarding information on their immunosuppressant medication, especially on how it affects their sexuality [20]. Another study indicated knowledge about medication was associated with female sex rather than male sex which implies necessary improvement in counseling [21], preferably starting before conception since all drugs enter fetal circulation [22]. Patients should be aware that some drugs are considered teratogenic and therefore contraindicated during pregnancy and some medical regimens are linked to prematurity and low birth weight [23]. Fetal malformations could be avoided if medication was switched to non-teratogenic drugs before conception [3] underlining our aim to establish a more standardized and profound approach in family planning counseling.

Within our female group, thoracic organ recipients perceived significantly higher risks and were more hesitant to risk their current state of health for pregnancy. For patients who received a thoracic organ, data suggests that the risk of graft rejection can make up to 21% reported by the National Transplantation Pregnancy Registry (NTPR) which should be discussed prior to conceiving [4]. To reduce the risk conception should be delayed until a stable graft function is given [4]. An impairment or loss in graft function during pregnancy has also been shown for women with a visceral graft [24]. However, if kidney function was good beforehand, it remained stable after pregnancy [25].

In this study, women showed great awareness for pregnancy-related risks independent of the transplanted organ with thoracic organ recipients worrying significantly more about miscarriages. The risk of a spontaneous miscarriage after cardiac transplantation is reported to be 15–20% and possibly higher depending on the immunosuppressive regimen [26]. Women with a male partner who received a thoracic transplant should also be counseled accordingly since spermatogenic abnormalities caused by immunosuppressant medication may lead to genetic defects in the fetus with the potential of causing a spontaneous abortion [4]. Spontaneous abortion, preterm birth, intrauterine growth restriction, and fetal distress as well as hypertensive disorders of pregnancy are significantly more present in transplanted women compared to the general population [27, 28]. There is a direct correlation between pre-pregnancy graft function and the gestational age at delivery [29]. Since there is a risk of inheriting cardiac diseases to the fetus, cardiac transplant patients should have access to genetic counseling prior to conception [7]. However, the current findings showed not all women could assess the risks associated with pregnancy for themselves sufficiently, indicating the need to establish a more consistent access to preconception counseling.

Experience with medical consultation and wishes for advice

With females being under regular gynecological supervision, the findings revealed a lack of contraceptive counseling especially in men and in female thoracic organ recipients as well as a lack of communication about the desire to have children by physicians.

Contraception after transplantation is especially important, since the patients’ fertility as well as sexual function returns rapidly [30, 31]. A shorter interval between transplantation and conceiving has been associated with worse outcomes, and hence the recommendation to wait with a conception is at least 12–24 months [32]. Receiving advice on effective contraception post-transplantation has been shown to increase the likelihood of selecting an effective birth control method [10, 33].

Consistent with the findings of the current study, French et al. found that females after heart transplantation were least often counseled (22%) [8]. Women with a kidney transplant on the other hand were the most counseled (42%), followed by female liver transplant patients (30%). In total, less than half of transplant recipients were counseled by a health-care provider either before (43%) or after (37%) transplantation to use birth control and only half of the women used any form of reliable contraception [8]. Counseled patients had more planned pregnancies (78%) compared to non-counseled (45% [8]). Despite recommendations, 51% of the pregnancies in thoracic transplant patients were unplanned as reported by the NTPR of North America 2017 [34]. Supporting our results, Phillips et al. found a sex-related difference in post-transplant counseling with liver-transplanted men being counseled less than liver-transplanted women [9].

In our cohort, advice and open doctoral communication regarding family planning were highly requested by both sexes independent of a desire to have children. Based on the International Society for Heart and Lung Transplantation (ISHLT) guidelines, preconception counseling either prior to transplantation or soon afterward [35] should include the patient and his/her spouse [36] covering topics like maternal and fetal risks, safe contraception, rejection risks, and genetic counseling. Patients who decided to avoid pregnancy should be targeted as well [7]. Further advice should include the patient’s life span, the possibility of re-transplantation, and the impact of a worsening medical condition on the life of the children [36]. Counseling is advised to reduce both maternal and fetal risks [37] to achieve a successful pregnancy. For this, a multidisciplinary approach beginning in the preconception period should be established [38].

In this study, women, especially thoracic organ recipients, had been advised against pregnancy significantly more often than visceral recipients and felt less supported in planning another pregnancy by their doctors. An explanation for the transplant units‘ restrained approach could be that female heart transplant patients can be affected severely by the hemodynamic changes during pregnancy [39] and that diabetes and hypertension are common among these patients [7] with a development or worsening of hypertension in almost half of the pregnancies [26] as well as the possibility of inheritance of cardiomyopathies or congenital heart defects by the fetus in 3–7% of cases [40–42].

While both sexes did not feel well-advised in terms of family planning, they showed a sense of responsibility as the majority of women wanted to consult their health-care provider and plan a pregnancy beforehand independent of the transplanted organ. Interestingly, recent findings from our group revealed that, despite careful planning, women who have undergone organ transplantation experienced more complications during pregnancy. Additionally, even partners of transplanted men exhibited lower birth rates. Given the heightened risks associated with transplantation, it is essential to provide early counseling before pregnancy and ensure thorough monitoring during pregnancy. Since pregnancies after transplantation are considered high risk, they need to be closely monitored by an interdisciplinary team of transplant specialists and an obstetrician with experience in the care of high-risk pregnancies [7].

Social challenges in family planning after transplantation

Showing a strong sex-related difference, women felt more influenced in family planning by transplantation and only a minority believed they could be having a child like non-transplant parents.

Considering a possible decline of physical health when deciding about growing a family should be addressed in the counseling process, since data showed that a mother who underwent heart transplantation will have medical problems when the child reaches teenage years and might only live until the child turns 18 years [37]. Of all solid organ recipients, patients who received a lung transplant have the highest morbidity as well as the highest mortality [43]. While 5 years post-transplantation only half of them will be alive, only 31% will survive 10 years [43].

Independent of sex and organ, aftercare seemed to not be perceived as a burden with most participants having a good quality of life and good health status. Considering that the organ transplant increases the lifetime of a patient, it also positively affects the quality of life [38]. Two-thirds of heart transplant recipients are content with their life after transplantation [38, 44]. Hasan et al. also reported that “gender was not related to health-related quality of life“ [38].

With an increasing quality of life after transplantation, mental health improvements also take place. However, poor emotional well-being pre-transplantation and hardships in adjusting to the immunosuppressant regimen can lead to worse mental health outcomes post-transplantation [45] which underlines the necessity to start screening for mental health issues early.

Study limitations

Interpreting the results, it should be taken into consideration that the character of the study was exploratory and designed to generate hypotheses which have to be further explored by each individual transplant unit. The questionnaire was designed based on research in literature and expert interviews; therefore, it is not a validated instrument which limits the generalizability of the findings. Test runs were performed to prove comprehensibility. The male sample size was comparatively smaller as well as the thoracic organ group. However, it represents the distribution of transplanted organs in Germany in 2022 [46]. The average male age at participation and at the time of transplantation was significantly higher which could lead to the desire of becoming a parent being more present in the female group, since males might have already started a family. Another limitation is that answers were self-reported, meaning that a certain recall bias is possible. With the majority of participants being in a long-term relationship, the desire to have children and therefore the interest in taking part in the study could be more present in this group. Since participation was voluntarily, transplanted patients currently active in family planning or with a comparatively better health status could have had a higher interest in completing the survey.

Conclusions

Study participants of both sexes showed a high interest in comprehensive counseling regarding family planning while revealing a significant lack of patient education on the part of health-care providers. Female transplant patients who felt most influenced in their family planning were less satisfied with the information they received. Thoracic organ recipients who perceived the highest risks were the least counseled. The data suggests that counseling for women provided by the transplant center on pregnancy after transplantation by gynecological specialists could be well accepted. This may lead to better maternal/paternal health with a higher emotional well-being as well as better organ function with fewer long-term complications and could prevent unwanted pregnancies.