© 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
Clin Transplant 2014: 28: 1294–1302 DOI: 10.1111/ctr.12454
Clinical Transplantation
Sexual concerns among kidney transplant recipients Muehrer RJ, Lanuza DM, Brown RL, Djamali A. Sexual concerns among kidney transplant recipients. Abstract: Background: Little is known about the specific sexual concerns of kidney transplant (KTx) recipients. The primary objectives of this study were to: (i) describe the importance of sexuality to KTx recipients; (ii) investigate the sexual concerns of KTx recipients; and (iii) examine the relationship between sexual concerns and quality of life (QOL). A secondary objective was to examine potential sexual concern differences by gender, pre-transplant dialysis status, and donor type. Methods: This study employed a cross-sectional, descriptive, correlational design. Sexual concerns were identified using the Sexual Concerns Questionnaire, which contains seven subscales. QOL was measured with the SF-8 and the QOL Uniscale. Results: Nearly 73% of subjects rated sexuality as important. Subscales indicating highest area of sexual concerns were communication with healthcare providers about sexuality (Mean (M) = 2.70) and sexual pleasure concerns (M = 2.45). Higher concern ratings regarding health consequences of sexual activity, quality of sexual relationship, sexual pleasure, sexual functioning problems, and pessimistic beliefs about treatment were significantly, inversely related to QOL. Women had significantly higher scores on the Sexual Pleasure and Communication with Healthcare Providers subscales than men. Conclusions: This study reports the sexual concerns of KTx recipients’ who are an average of four yr since surgery, and the relationship of these concerns to QOL.
Kidney transplantation is the treatment of choice for persons with end stage renal disease (ESRD) (1, 2). In general, people who receive a kidney transplant (KTx) have increased survival rates (3) and overall better quality of life (QOL) than those on dialysis (4, 5). Despite overall improvements in QOL, sexuality does not improve post-transplant (6–10). Previous studies report approximately 50% of male KTx recipients (11) and about the same percent of female KTx recipients (12) are diagnosed with a sexual dysfunction, making it a significant problem after transplantation. To effectively provide care for people with organ transplants, clinicians must understand what difficulties and concerns their patients have about sexuality and sexual function. However, most prior research on sexuality after KTx (7–9, 13–15) included only one or two general questions about sexuality or focused primarily on sexual functioning concerns such as erectile dysfunction. While these studies have provided a basic understanding
1294
Rebecca J. Muehrera,b, Dorothy M. Lanuzaa, Roger L. Browna and Arjang Djamalib a
School of Nursing, University of WisconsinMadison and bSection of Nephrology, Department of Medicine, School of Medicine and Public Health, University of WisconsinMadison, Madison, WI, USA
Key words: kidney transplant – quality of life – sexual concerns – sexual functioning – sexuality – transplant recipients Corresponding author: Rebecca J. Muehrer, RN, PhD, School of Nursing, University of Wisconsin Madison, Cooper Hall, 701 Highland Avenue, Madison, WI 53705, USA. Tel.: (608) 265-3241; fax: (608) 263-5458; e-mail: [email protected] Conflict of interest: None. Accepted for publication 18 August 2014
of the prevalence and the significance of sexuality concerns after a KTx, they have done little to help clinicians understand the specific sexual concerns of KTx recipients. Knowledge of these concerns is important to guide accurate patient assessment and design effective interventions. To address this gap in the literature, the authors developed the Sexual Concerns Questionnaire (the SCQ) with assistance from KTx recipients and clinicians specializing in KTx. The SCQ was designed to be a more comprehensive assessment of the sexual concerns of KTx recipients than existing measures. The primary objectives of this study were to: (i) describe the importance of sexuality to KTx recipients; (ii) investigate the sexual concerns of KTx recipients; and (iii) examine the relationship between sexual concerns and QOL. A secondary objective was to examine potential sexual concern differences by gender, pre-transplant dialysis status (i.e., whether on dialysis pre-transplant or not), and type of donor (living or deceased).
Sexual concerns of KTx recipients Patients and methods Design, setting, and participants
This study employed a cross-sectional, descriptive, correlational design. Data were collected at a major Midwestern University Hospital with one of the largest KTx programs in the United States. Persons were eligible to participate if they received a KTx at the hospital where the study was being conducted, were over 18 yr old, had a functioning KTx, were at least six months post-transplant, had received their transplant after January 1st 2000, and could read and write English. Data collection
After the study was approved by the human subjects committee, eligible persons were mailed a packet containing a letter from the transplant clinic, an informational sheet, an opt out card, the questionnaires, a dollar, and a stamped return envelope. Persons not wanting to participate returned the opt out card. Completed questionnaires constituted implied consent. Participants were instructed not to put their name on the questionnaires. Instruments
Demographic questionnaire. The demographic questionnaire elicited information about the subject’s: (i) characteristics such as age, marital status, etc.; (ii) dialysis and transplant histories; and (iii) medical history. Participants were asked to report their chronic illnesses using a checklist and list their current medications. Participants were also asked to provide information about the importance of their sexuality, frequency of sexual relations, and their satisfaction with information given to them about sexuality after transplant. Sexual Concerns Questionnaire (SCQ). SCQ development—The SCQ was developed to address KTx recipients’ sexual concerns. Preliminary items for the SCQ were developed based on an extensive literature review and prior research (10). Next, a panel of KTx recipients reviewed the items in the SCQ for content validity using the procedure described by Lynn (16). Then, two expert panels reviewed the SCQ items for relevance/importance, clarity, and completeness. The first panel consisted of seven clinicians who work with the KTx population and the second panel consisted of 10 female and 10 male KTx recipients. The panels judged the items to be relevant, clear, and thought no additional items were needed. After the judgment of
the expert panels was obtained, content validity indices (CVI) were calculated for each panel separately and then combined. The CVI of an instrument identifies the extent to which the entire instrument represents the content domain of the concept being measured. It is computed based on the relevance/importance ratings given to each item by panels of experts (16–19). The CVI represents the proportion of items on an instrument that received a rating of 3 or 4 on a scale of 1 (not important/relevant) to 4 (very important/relevant). The CVI was 0.95 and 0.80 for the clinician and KTx recipients, respectively. The overall CVI was 0.81 reflecting acceptable content validity for a new scale. To further examine content and face validity, the questionnaire was sent to a nationally known renal transplant researcher with decades of expertise in QOL and KTx research. This expert gave the questionnaire to five doctorally prepared nurses who work with transplant recipients. These experts examined the questionnaire. Overall, they thought the questionnaire was comprehensive but they recommended an additional item related to pain be added to the SCQ. They then concluded that the SCQ adequately covered the concept of sexual concerns giving evidence for both content and face validity (20). Their suggested item was added to the SCQ. The preliminary SCQ contained 38 items. Construct validity of the preliminary 38-item questionnaire was tested using an exploratory/confirmatory factor analysis method developed by Kroonenberg and Lewis (21). Before factor analysis was conducted, five items were deleted because a majority of the participants considered them not applicable. Exploratory factor analysis was conducted to evaluate the factor structure of the SCQ, and a seven-factor solution was accepted as it was the most meaningful, parsimonious, and theoretically consistent. Each item in the seven-factor solution was examined for fit. Five additional items were deleted because they did not fit with the factor solution. Then, confirmatory factor analysis was conducted, and the fit of the seven-factor model from the EFA was supported. The overall model fit indices were v2/df ratio = 4.87, the Comparative Fit Index (CFI) = 0.919, the Tucker-Lewis Index (TFI) = 0.943, and the RMSEA = 0.102. These fit indices indicate the 7-factor model had a good to adequate fit (22). The Sexual Concerns Questionnaire (SCQ)—The SCQ contains 28 items and 7 subscales including health consequences of sexual activity, quality of sexual relationship, partner reactions, sexual
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Muehrer et al.
pleasure, sexual functioning problems, pessimistic beliefs about treatment, and communication with healthcare providers about sexuality. Each item is rated using a 6-point Likert-like scale from 0 (Not at all) to 5 (Extremely). Higher scores indicate higher levels of concern. Internal consistency reliability was measured using the Cronbach a. In this study, the Cronbach a for the overall questionnaire was 0.87 and ranged from 0.73 to 0.91 for the subscales. The QOL uniscale. Global QOL was measured using a single-item visual analog scale (VAS). Scores range from 0 to 100 with higher scores indicating higher QOL. This QOL VAS has evidence for reliability and validity (23, 24). The SF-8. The SF-8 Health Survey is a survey of QOL derived from the SF-36. It contains eight items measuring eight dimensions of QOL including physical functioning, role limitations due to physical health and/or emotional problems, bodily pain, general health, vitality, social functioning, and mental health. Higher scores indicate higher levels of QOL. The SF-8 has evidence for reliability and validity (25). For this study, only physical composite and mental composite scores were used. Statistical analysis
Data were analyzed using the Statistical Package for the Social SciencesTM version 21. (SPSS Inc., Chicago, IL, USA). Descriptive statistics were calculated to describe sample demographics. To describe the sexual concerns of KTx recipients, mean scores for each subscale were calculated. For each item, the mean and the upper confidence interval (CI) were calculated. Further, item scores were dichotomized to “not concerned” (those who answered “not at all,” or “slightly” concerned) and “concerned” (those who answered “somewhat,” “very,” “quite a bit,” or “extremely” concerned). The percent of individuals who were classified as “concerned” was calculated for each item. To examine the relationship between sexual concerns and QOL, partial correlations were calculated between the mean score for each subscale of the SCQ and the QOL questionnaires while controlling for self-reported depression, anxiety and whether or not they were in a relationship. Independent sample t-tests were used to examine potential differences between sexual concerns and gender, pre-transplant dialysis status and donor type. To control for multiple comparisons, the Type I error rate was a = 0.01.
1296
Results Subjects
Thirteen hundred people received questionnaire packets. Two hundred fifty-eight people opted out. Three hundred ninety-one people returned the questionnaires for an approximate 30% response rate. Of the 391 surveys, 17 were excluded because over 33% of the data were missing. A total of 374 surveys were analyzed. The mean age of subjects was 50.7 yr, the majority were male, white, and in a relationship (see Table 1). The average time since transplant was 44.7 months. Importance of sexuality
The majority of subjects reported their sexuality was important (72.8%), they were sexually active (71.4%), and had a regular sexual partner (80.2%; See Table 2). Only 60% of subjects reported being given post-transplant information about sexuality from healthcare providers. Of the 40% who reported that they were never given information related to sexuality, 64% stated they wanted the information. Sexual concerns of KTx recipients
The SCQ subscales rated as being the greatest areas of concern (i.e., highest means) were Communication with Healthcare Providers about Sexuality (M = 2.70 1.24) and Sexual Pleasure (M = 2.45 1.34; see Fig. 1A,B). Four subscales had at least one item where over 50% of subjects were classified as concerned. In the Quality of Sexual Relationship subscale nearly 53% of subjects were concerned about being satisfied with their sexual performance. In the Sexual Pleasure subscale, 70% of subjects indicated having a concern about the strength of their sex drive, 67% were concerned about their sexual arousal, and 78% were worried about the spontaneity of their sexual activity. In the Sexual Functioning subscale, 58% of subjects reported they were concerned about the effects of medications on their sexuality and 60% of males were concerned about erectile functioning. In the Communication with Healthcare Providers about Sexuality subscale, 69% of respondents reported being concerned that their MD/RN were not open to talking about their sexual concerns, 81% were concerned that their MD/RN did not think sexuality was important, 72% indicated a concern about being comfortable with discussing sexuality with their MD/RN, and 64% indicated they thought it was important to discuss sexual concerns with their RN/MD.
Sexual concerns of KTx recipients Table 1. Demographic and disease-related characteristics of the study sample (N = 374)
Table 2. Sexuality-related characteristics of the sample (n = 374) Characteristics
Characteristics
M
Age (Range: 19–81) 50.69 Gender Female Male Race American Indian/Alaskan Native African American Caucasian Asian More than one race Other Marital statusa Single, never married Single, in a relationship Married Separated Divorced Widowed Other End stage renal disease (ESRD) causea Glomerular diseases Polycystic kidney disease Diabetes Chronic tubulointerstitial Nephritis Hypertension Other/Unknown Dialysis prior to transplanta No – not on dialysis Yes – on dialysis Type of dialysisa Hemodialysis Peritoneal dialysis Both Length of time on dialysis (in months; 27.32 Range:
Clin Transplant 2014: 28: 1294–1302 DOI: 10.1111/ctr.12454
Clinical Transplantation
Sexual concerns among kidney transplant recipients Muehrer RJ, Lanuza DM, Brown RL, Djamali A. Sexual concerns among kidney transplant recipients. Abstract: Background: Little is known about the specific sexual concerns of kidney transplant (KTx) recipients. The primary objectives of this study were to: (i) describe the importance of sexuality to KTx recipients; (ii) investigate the sexual concerns of KTx recipients; and (iii) examine the relationship between sexual concerns and quality of life (QOL). A secondary objective was to examine potential sexual concern differences by gender, pre-transplant dialysis status, and donor type. Methods: This study employed a cross-sectional, descriptive, correlational design. Sexual concerns were identified using the Sexual Concerns Questionnaire, which contains seven subscales. QOL was measured with the SF-8 and the QOL Uniscale. Results: Nearly 73% of subjects rated sexuality as important. Subscales indicating highest area of sexual concerns were communication with healthcare providers about sexuality (Mean (M) = 2.70) and sexual pleasure concerns (M = 2.45). Higher concern ratings regarding health consequences of sexual activity, quality of sexual relationship, sexual pleasure, sexual functioning problems, and pessimistic beliefs about treatment were significantly, inversely related to QOL. Women had significantly higher scores on the Sexual Pleasure and Communication with Healthcare Providers subscales than men. Conclusions: This study reports the sexual concerns of KTx recipients’ who are an average of four yr since surgery, and the relationship of these concerns to QOL.
Kidney transplantation is the treatment of choice for persons with end stage renal disease (ESRD) (1, 2). In general, people who receive a kidney transplant (KTx) have increased survival rates (3) and overall better quality of life (QOL) than those on dialysis (4, 5). Despite overall improvements in QOL, sexuality does not improve post-transplant (6–10). Previous studies report approximately 50% of male KTx recipients (11) and about the same percent of female KTx recipients (12) are diagnosed with a sexual dysfunction, making it a significant problem after transplantation. To effectively provide care for people with organ transplants, clinicians must understand what difficulties and concerns their patients have about sexuality and sexual function. However, most prior research on sexuality after KTx (7–9, 13–15) included only one or two general questions about sexuality or focused primarily on sexual functioning concerns such as erectile dysfunction. While these studies have provided a basic understanding
1294
Rebecca J. Muehrera,b, Dorothy M. Lanuzaa, Roger L. Browna and Arjang Djamalib a
School of Nursing, University of WisconsinMadison and bSection of Nephrology, Department of Medicine, School of Medicine and Public Health, University of WisconsinMadison, Madison, WI, USA
Key words: kidney transplant – quality of life – sexual concerns – sexual functioning – sexuality – transplant recipients Corresponding author: Rebecca J. Muehrer, RN, PhD, School of Nursing, University of Wisconsin Madison, Cooper Hall, 701 Highland Avenue, Madison, WI 53705, USA. Tel.: (608) 265-3241; fax: (608) 263-5458; e-mail: [email protected] Conflict of interest: None. Accepted for publication 18 August 2014
of the prevalence and the significance of sexuality concerns after a KTx, they have done little to help clinicians understand the specific sexual concerns of KTx recipients. Knowledge of these concerns is important to guide accurate patient assessment and design effective interventions. To address this gap in the literature, the authors developed the Sexual Concerns Questionnaire (the SCQ) with assistance from KTx recipients and clinicians specializing in KTx. The SCQ was designed to be a more comprehensive assessment of the sexual concerns of KTx recipients than existing measures. The primary objectives of this study were to: (i) describe the importance of sexuality to KTx recipients; (ii) investigate the sexual concerns of KTx recipients; and (iii) examine the relationship between sexual concerns and QOL. A secondary objective was to examine potential sexual concern differences by gender, pre-transplant dialysis status (i.e., whether on dialysis pre-transplant or not), and type of donor (living or deceased).
Sexual concerns of KTx recipients Patients and methods Design, setting, and participants
This study employed a cross-sectional, descriptive, correlational design. Data were collected at a major Midwestern University Hospital with one of the largest KTx programs in the United States. Persons were eligible to participate if they received a KTx at the hospital where the study was being conducted, were over 18 yr old, had a functioning KTx, were at least six months post-transplant, had received their transplant after January 1st 2000, and could read and write English. Data collection
After the study was approved by the human subjects committee, eligible persons were mailed a packet containing a letter from the transplant clinic, an informational sheet, an opt out card, the questionnaires, a dollar, and a stamped return envelope. Persons not wanting to participate returned the opt out card. Completed questionnaires constituted implied consent. Participants were instructed not to put their name on the questionnaires. Instruments
Demographic questionnaire. The demographic questionnaire elicited information about the subject’s: (i) characteristics such as age, marital status, etc.; (ii) dialysis and transplant histories; and (iii) medical history. Participants were asked to report their chronic illnesses using a checklist and list their current medications. Participants were also asked to provide information about the importance of their sexuality, frequency of sexual relations, and their satisfaction with information given to them about sexuality after transplant. Sexual Concerns Questionnaire (SCQ). SCQ development—The SCQ was developed to address KTx recipients’ sexual concerns. Preliminary items for the SCQ were developed based on an extensive literature review and prior research (10). Next, a panel of KTx recipients reviewed the items in the SCQ for content validity using the procedure described by Lynn (16). Then, two expert panels reviewed the SCQ items for relevance/importance, clarity, and completeness. The first panel consisted of seven clinicians who work with the KTx population and the second panel consisted of 10 female and 10 male KTx recipients. The panels judged the items to be relevant, clear, and thought no additional items were needed. After the judgment of
the expert panels was obtained, content validity indices (CVI) were calculated for each panel separately and then combined. The CVI of an instrument identifies the extent to which the entire instrument represents the content domain of the concept being measured. It is computed based on the relevance/importance ratings given to each item by panels of experts (16–19). The CVI represents the proportion of items on an instrument that received a rating of 3 or 4 on a scale of 1 (not important/relevant) to 4 (very important/relevant). The CVI was 0.95 and 0.80 for the clinician and KTx recipients, respectively. The overall CVI was 0.81 reflecting acceptable content validity for a new scale. To further examine content and face validity, the questionnaire was sent to a nationally known renal transplant researcher with decades of expertise in QOL and KTx research. This expert gave the questionnaire to five doctorally prepared nurses who work with transplant recipients. These experts examined the questionnaire. Overall, they thought the questionnaire was comprehensive but they recommended an additional item related to pain be added to the SCQ. They then concluded that the SCQ adequately covered the concept of sexual concerns giving evidence for both content and face validity (20). Their suggested item was added to the SCQ. The preliminary SCQ contained 38 items. Construct validity of the preliminary 38-item questionnaire was tested using an exploratory/confirmatory factor analysis method developed by Kroonenberg and Lewis (21). Before factor analysis was conducted, five items were deleted because a majority of the participants considered them not applicable. Exploratory factor analysis was conducted to evaluate the factor structure of the SCQ, and a seven-factor solution was accepted as it was the most meaningful, parsimonious, and theoretically consistent. Each item in the seven-factor solution was examined for fit. Five additional items were deleted because they did not fit with the factor solution. Then, confirmatory factor analysis was conducted, and the fit of the seven-factor model from the EFA was supported. The overall model fit indices were v2/df ratio = 4.87, the Comparative Fit Index (CFI) = 0.919, the Tucker-Lewis Index (TFI) = 0.943, and the RMSEA = 0.102. These fit indices indicate the 7-factor model had a good to adequate fit (22). The Sexual Concerns Questionnaire (SCQ)—The SCQ contains 28 items and 7 subscales including health consequences of sexual activity, quality of sexual relationship, partner reactions, sexual
1295
Muehrer et al.
pleasure, sexual functioning problems, pessimistic beliefs about treatment, and communication with healthcare providers about sexuality. Each item is rated using a 6-point Likert-like scale from 0 (Not at all) to 5 (Extremely). Higher scores indicate higher levels of concern. Internal consistency reliability was measured using the Cronbach a. In this study, the Cronbach a for the overall questionnaire was 0.87 and ranged from 0.73 to 0.91 for the subscales. The QOL uniscale. Global QOL was measured using a single-item visual analog scale (VAS). Scores range from 0 to 100 with higher scores indicating higher QOL. This QOL VAS has evidence for reliability and validity (23, 24). The SF-8. The SF-8 Health Survey is a survey of QOL derived from the SF-36. It contains eight items measuring eight dimensions of QOL including physical functioning, role limitations due to physical health and/or emotional problems, bodily pain, general health, vitality, social functioning, and mental health. Higher scores indicate higher levels of QOL. The SF-8 has evidence for reliability and validity (25). For this study, only physical composite and mental composite scores were used. Statistical analysis
Data were analyzed using the Statistical Package for the Social SciencesTM version 21. (SPSS Inc., Chicago, IL, USA). Descriptive statistics were calculated to describe sample demographics. To describe the sexual concerns of KTx recipients, mean scores for each subscale were calculated. For each item, the mean and the upper confidence interval (CI) were calculated. Further, item scores were dichotomized to “not concerned” (those who answered “not at all,” or “slightly” concerned) and “concerned” (those who answered “somewhat,” “very,” “quite a bit,” or “extremely” concerned). The percent of individuals who were classified as “concerned” was calculated for each item. To examine the relationship between sexual concerns and QOL, partial correlations were calculated between the mean score for each subscale of the SCQ and the QOL questionnaires while controlling for self-reported depression, anxiety and whether or not they were in a relationship. Independent sample t-tests were used to examine potential differences between sexual concerns and gender, pre-transplant dialysis status and donor type. To control for multiple comparisons, the Type I error rate was a = 0.01.
1296
Results Subjects
Thirteen hundred people received questionnaire packets. Two hundred fifty-eight people opted out. Three hundred ninety-one people returned the questionnaires for an approximate 30% response rate. Of the 391 surveys, 17 were excluded because over 33% of the data were missing. A total of 374 surveys were analyzed. The mean age of subjects was 50.7 yr, the majority were male, white, and in a relationship (see Table 1). The average time since transplant was 44.7 months. Importance of sexuality
The majority of subjects reported their sexuality was important (72.8%), they were sexually active (71.4%), and had a regular sexual partner (80.2%; See Table 2). Only 60% of subjects reported being given post-transplant information about sexuality from healthcare providers. Of the 40% who reported that they were never given information related to sexuality, 64% stated they wanted the information. Sexual concerns of KTx recipients
The SCQ subscales rated as being the greatest areas of concern (i.e., highest means) were Communication with Healthcare Providers about Sexuality (M = 2.70 1.24) and Sexual Pleasure (M = 2.45 1.34; see Fig. 1A,B). Four subscales had at least one item where over 50% of subjects were classified as concerned. In the Quality of Sexual Relationship subscale nearly 53% of subjects were concerned about being satisfied with their sexual performance. In the Sexual Pleasure subscale, 70% of subjects indicated having a concern about the strength of their sex drive, 67% were concerned about their sexual arousal, and 78% were worried about the spontaneity of their sexual activity. In the Sexual Functioning subscale, 58% of subjects reported they were concerned about the effects of medications on their sexuality and 60% of males were concerned about erectile functioning. In the Communication with Healthcare Providers about Sexuality subscale, 69% of respondents reported being concerned that their MD/RN were not open to talking about their sexual concerns, 81% were concerned that their MD/RN did not think sexuality was important, 72% indicated a concern about being comfortable with discussing sexuality with their MD/RN, and 64% indicated they thought it was important to discuss sexual concerns with their RN/MD.
Sexual concerns of KTx recipients Table 1. Demographic and disease-related characteristics of the study sample (N = 374)
Table 2. Sexuality-related characteristics of the sample (n = 374) Characteristics
Characteristics
M
Age (Range: 19–81) 50.69 Gender Female Male Race American Indian/Alaskan Native African American Caucasian Asian More than one race Other Marital statusa Single, never married Single, in a relationship Married Separated Divorced Widowed Other End stage renal disease (ESRD) causea Glomerular diseases Polycystic kidney disease Diabetes Chronic tubulointerstitial Nephritis Hypertension Other/Unknown Dialysis prior to transplanta No – not on dialysis Yes – on dialysis Type of dialysisa Hemodialysis Peritoneal dialysis Both Length of time on dialysis (in months; 27.32 Range:
