Sexual and Reproductive Health Education for Adolescents with Cystic Fibrosis

Abstract

Objective: To assess the SRH needs of adolescents with CF and create a SRH education guideline for CF providers.

Methods: Adolescents and young adults (AYA) were asked to complete a questionnaire about SRH educational needs. If the AYA was under the age of 18 years, their parent was also asked to participate. Survey data were analyzed using descriptive statistics, the Mann Whitney U test, and content analysis of the qualitative data. An evidence-based SRH education guideline was developed and presented to key stakeholders. CF clinic staff were asked to complete a pre- and a post-intervention survey to assess their perspectives of the guideline and report perceived barriers to SRH education. Surveys were created using recommendations from previous SRH education research and CF content experts.

Results: 29 AYA and 17 parents completed the survey. 13 CF staff completed the pre-intervention survey and 8 completed the post-intervention survey. Of the AYA surveyed, 18 (62.1%) were female and 11 (37.9%) were male. 31% (9/29) of AYA reported they had talked with a CF provider about SRH. 47.2% (8/17) of parents reported their child had talked about SRH with a CF provider. Almost all participants reported they want CF-related reproduction included in SRH education. Although not statistically significant, CF clinic staff who reported that they currently include or would include SRH education in their practice increased from 50% to 87.5%.

Conclusions: The findings confirm the significant need for improved SRH education for adolescents with CF and the need for standardization in care. Adolescents in this CF center want SRH education from their CF care team. The lack of statistically significant differences in the results of CF staff could be related to sample size or resistance to practice change.

Implications: Future action is needed to address barriers to SRH education and implement an SRH education guideline.

Introduction

Problem Description

Adolescents and young adults (AYA) with cystic fibrosis (CF) encounter similar sexual and reproductive challenges as their healthy counterparts. They also have disease-specific sexual and reproductive health (SRH) concerns.1 42% of adolescent girls with CF report being sexually active.1 Survival rates and overall health are improving for CF, with more individuals living into adulthood.1-4 This creates a greater need for SRH information for AYA with CF.

Available Knowledge

There are no guidelines for SRH education for AYA with CF.5 The Cystic Fibrosis Foundation has information regarding SRH for individuals with CF, but there are no guidelines for providers.6 Studies have looked at patient preferences for SRH education.5, 7, 8

Rationale

The ACE Star Model of Knowledge Transformation was used to conceptualize the implementation. This is a model for knowledge transfer and application in healthcare quality improvement.9 It includes discovery research, evidence summary, translation to guideline, practice integration, and evaluation (Figure 1).10

Figure 1: The ACE Star Model of Knowledge Transformation

Specific Aims

The purpose of this project was to assess the SRH educational needs of AYA with CF by surveying these individuals, their parents, and the CF care team, and to create an evidence-based SRH education guideline, present it to key stakeholders, and evaluate the CF care team’s assessment of the guideline.

Methods

Context

This project was completed at a Cystic Fibrosis Foundation-accredited CF center associated with an academic medical center in the Intermountain West serving five states. The center has an adult and a pediatric clinic; both clinics were involved with this project. The pediatric and adult teams consist of physicians, nurse practitioners, physician assistants, pharmacists, social workers, dietitians, respiratory therapists, registered nurses, and other health team members. Most patients seen in the CF center are White. For this project, only patients aged 14 to 24 years were included. For patients under the age of 18 years, their parents were also asked to participate. 

Intervention

Surveys were created to assess AYA and parent needs related to SRH education. A survey for CF clinic staff was also created to assess SRH education needs, barriers, and attitudes. For four months, AYA and parents seen in the CF center were asked to participate by completing a paper questionnaire. Additionally, the parent survey was made available online via a link posted on a regional CF social media page. The CF staff survey was emailed to clinic staff to complete.

Based on the results from the needs assessment, a SRH education guideline for CF providers was developed using evidence-based recommendations related to SRH in pediatric chronic disease. The purpose of the guideline was to help clinicians in educating adolescents with CF. While developing the guideline, stakeholders were asked for their input and recommendations.

A report of the results from the needs assessment and the SRH education guideline were prepared and presented to key stakeholders in the CF center. A survey was created to assess the CF care team’s perspective on the satisfaction, feasibility, and usability of the SRH education guideline as well as their confidence, attitudes, and perceived barriers to using it. Following the presentation, this survey was sent to the CF clinic staff via email.

Study of the Intervention

13 CF clinic staff participated in the pre-intervention survey (pre-survey), and 8 CF staff in the post-intervention survey (post-survey). CF staff were surveyed before and after they were presented with the clinic needs assessment findings and SRH education guideline to compare findings and evaluate the guideline. Pre- and post-surveys were sent via email. This project did not have a comparison group. There were no other quality improvement projects related to SRH education being implemented at the same time in the CF center at this institution.

Measures

The surveys used to measure processes and outcomes were created using recommendations from previous research done in SRH education. The surveys were reviewed and piloted by content experts and CF providers for content appropriateness, face validity, and ease of completion. Surveys included closed, open-ended, and Likert scale questions. The AYA and parent survey included a Likert scale of very satisfied to very dissatisfied to measure participant satisfaction with SRH education they had received and current SRH knowledge. CF staff’s perceived importance of SRH education and topics were measured in the pre-survey using a Likert scale of 1 to 5, with 5 representing very important. Additionally, the CF staff survey included measurements of confidence, comfort, resources, and skills needed to provide SRH education using a Likert scale of strongly agree to strongly disagree. The CF staff post-survey included the same measures and were compared to pre-survey results using the Mann Whitney U test. Pilot data demonstrated that each survey took less than 10 minutes to complete.

The data from paper surveys for AYA and parents were entered electronically into a secure data base for statistical analysis. After entry, the paper survey data was compared carefully to the electronic data to ensure no errors were made. Additionally, the surveys from CF clinic staff that were completed electronically were reviewed for completeness and accuracy.

Analysis

Quantitative survey results were analyzed using descriptive statistics, including frequency distributions and summary statistics for central tendency and variability. The Mann Whitney U test was used to evaluate pre- and post-survey data, as data was non-parametric and unpaired. A content analysis was completed for qualitative survey results by carefully reading and coding responses. The coded data were then categorized, organized, and summarized to identify common themes.

Ethical Considerations

This study was approved by the University of Utah Institutional Review Board. Participation in the study was completely voluntary, and participants could withdraw at any time. Parental permission, consent, and assent were explained on the survey cover letter, and completion of the survey implied consent. No signatures were obtained. Participants were assured that their survey responses were confidential; furthermore, surveys remained anonymous to protect confidentiality. There were no conflicts of interest to disclose.

Results

29 AYA 14 to 24 years of age participated in the survey (Table 1). Most participants reported they had received SRH education regarding CF (89.7%), however, only 19.2% reported receiving this education from a healthcare provider. It was reported as being most frequently received at school, from a parent, or the internet. School and a parent were most frequently reported as the most important source of information on SRH. The majority (57.7%) of AYA reported they were satisfied with the SRH education they had received, but only 31% reported they had talked with a CF provider about SRH. Of those who said they had talked with a CF provider regarding SRH, the majority (66.6%) was either very satisfied or satisfied with the education. Puberty and fertility/pregnancy were the most common topics to have been discussed with a CF provider (Figure 2). 55.2% of participants reported that age 13 to 15 would be their preferred age to start discussing SRH. When asked about preferences regarding from whom they would want to receive SRH education, 38% had no preference, 24% preferred a CF provider, 24% preferred a parent; 48.3% had no gender preference. The majority (65%) of AYA reported that their ideal educational resource would be an online resource. Almost all respondents (96%) reported they would want CF-related reproduction included in SRH education (Figure 3).

Table 1: Demographic Characteristics, Adolescent and Young Adult Survey
Figure 2: SRH Topics Discussed, Adolescent/Young Adult
Figure 3: Preferred SRH Topics, Adolescent/Young Adult

In reviewing open-ended survey questions, the AYA who participated repeatedly stated that they want more information regarding SRH or would have wanted more information as an adolescent (N=16). These responses included statements such as “make it more of a topic during the teenage years,” “talk about it more,” “giving more information,” and “have the discussion early.” Another common theme identified was patient comfort during SRH discussions (N=5). Responses included “make it not sound gross” and “ask them if they feel comfortable talking about it.” Two respondents spoke about privacy, such as “no parents in the room” and “speak about it without parents present.” Family (N=10), health (N=8), and SRH (N=5) were common themes in responses when participants were asked what they value for their future life. Responses included “a healthy one,” “being sexually healthy,” “being healthy enough to have kids,” “family,” and “I want to have safe sex practices, effective contraception and a family eventually.”

17 parents of CF adolescents participated in the parent survey (Table 2). The majority (58.8%) of parents reported that their child had received SRH education regarding CF. Of those who had received SRH education regarding CF, 90% of parents reported it was from a CF provider, and 70% reported it was from a parent. 41.2% of parents reported their child had not talked about SRH with a CF provider, while 47.1% reported their child had. If their child had talked to a CF provider about SRH, 50% of parents were either very satisfied or satisfied with the education. The most discussed topic was puberty, followed by fertility/pregnancy (Figure 4). 41.2% of parents reported they would prefer their child receive SRH education from both the parent and a CF care team member, and 35.3% had no preference. Over 40% of parents felt that before age 13 was the most appropriate age for SRH education, and 35% felt age 13 to 15 was the most appropriate. Most parents reported the ideal educational resource would be a written resource (52.9%). The top three topics that parents want to be included in their child’s SRH education were CF-related reproduction, healthy relationships, and puberty.

Table 2: Demographic Characteristics, Parent Survey
Figure 4: SRH Topics Discussed, Parent

According to open-ended responses in the parent survey, parents consistently reported the desire for the CF care team to understand the needs of the parent and patient (N=8) such as “don’t be nervous about discussing sex and make it a natural discussion when the patient is ready,” “listening and allowing time for them to open up, ask questions…” and “find out how much the parents want this discussed with their child.” One parent felt that standardization would be helpful. They said, “just making it a routine part of the exam and discussing [it] openly from childhood to adulthood.” Other common themes for how to support adolescents with SRH education included resources (N=3) and CF-specific information (N=2). Family (N=6) and knowledge (N=3) were common themes of what parents value for their children’s future. Responses included “that she be comfortable and knowledgeable in her own body…have all information and education to be able to make choices that are right for her” and “that she understands what she needs to happen in order to get pregnant and have a safe and healthy pregnancy.”

The CF staff pre-survey was sent via email to 24 participants and left open for a 7-week time frame. A reminder email was sent after 5 weeks. The response rate was 54% (N=13). The largest number of respondents were pediatric CF providers (38.5%). No adult CF providers responded. Half of the respondents reported that they currently include SRH education in their practice. 84.6% of participants felt that the CF provider or team has a role in the discussion or provision of SRH care for adolescents with CF. The large majority (83.3%) felt that the CF provider should be the one to initiate SRH discussions. Of note, 23% reported that multiple team members should be involved in the discussion of SRH issues. The pre-survey results showed that the CF staff’s perceived importance of SRH care averaged 4.3 (± 0.75) on a scale of 1 to 5, with 5 representing very important. Additionally, results showed that CF staff’s perceived importance of including urinary incontinence, contraception, and fertility in SRH education averaged 4 or greater using the same scale (4 ± 0.8, 4.2 ± 0.9, 4.3 ± 0.8 respectively). There was a wide range of the perceived importance of including puberty, menstruation, and vulvovaginal candidiasis in SRH education with averages of 3.8 (± 1.5), 3.8 (± 1.4), and 4 (± 1.4), respectively, using the same scale. Table 3 shows the results for all SRH topics.

Table 3: CF Staff SRH Topic Importance

According to the open-ended responses from CF staff, standardization of SRH education (N=8) and more information (N=11) were consistently reported as ways to improve confidence and comfort with SRH care. Responses included statements such as “a culture that it is an expected part of adolescent care,” “having aligned goals or standards that all providers and team members in clinic discuss,” “protocols and ownership from all of the CF providers,” and “information, talking points, a standardized way to dismiss family from room.” Identified barriers to providing SRH education included the following common themes: culture (N=4), family concerns (N=7), time (N=2), and provider comfort/confidence (N=7).

The CF staff post-survey was sent via email to 10 participants and left open for 3 weeks. A reminder email was sent after 2 weeks. The response rate was 80% (N=8). The largest number of respondents were pediatric CF providers and pediatric CF nurses. The large majority of respondents reported they plan to include SRH education in their practice (87.5%).

CF staff’s perceived confidence and comfort in providing SRH education averaged 3.75 (± 0.6) and 4 (± 0.6) in the pre-survey and 3.6 (±0.9) and 3.5 (± 1.0) in the post-survey, respectively, on a scale of strongly agree to strongly disagree. The CF care team’s perception of having the resources and skills to provide SRH education averaged 3.25 (± 0.8) and 4 (± 0.6) in the pre-survey and 2.9 (±0.8) and 3.75 (±0.7) in the post-survey, respectively, using the same scale. There was no statistically significant difference in the CF care team’s self-assessment of their confidence and comfort in providing SRH education and their perception of having the needed resources and skills. Additionally, there was no statistical difference found in the perceived importance of SRH education (Table 4). Although not statistically significant, there was an increase in participants who reported they would include SRH education in their practice to 87.5%, compared to the 50% who reported they currently include SRH education in their practice in the pre-survey.

Table 4: CF Staff Pre-Post Frequency Table

Half of the participants in the CF staff post-survey either strongly agreed or agreed with the statements “the proposed SRH guideline is sustainable” and “the proposed SRH guideline is easy to use.” Most participants, 75%, reported they neither agreed nor disagreed with the statement, “I will use the proposed SRH guideline.” Only 37.5% agreed that “the proposed CF SRH guideline can be implemented in the CF clinic.”

In the open-ended responses from CF staff in the post-survey, time (N=5) and resistance from parents (N=3) were consistently reported as barriers and concerns to providing SRH education and using the proposed SRH guideline. Additionally, the importance of SRH education was described by participants (N=4).

The missing data included one incomplete CF staff pre-survey. The survey was completed online, and 1 participant failed to answer all the questions. Since the survey was anonymous, it was not possible to recover the missing data.

Discussion

Summary

The results demonstrate that adolescents with CF and their parents want information about SRH from their CF care team. Adolescents reported that more information about SRH from their CF care team would help them feel better supported in their SRH decisions and concerns. Although members of the CF care team reported the importance of SRH education, only 50% reported that they currently include it in their practice. Prior to this project, the CF center identified a gap in care with no standard SRH education guidelines for CF providers to follow and no data specific to their patients’ SRH needs. Following the presentation of the SRH education guideline, there was no statistically significant difference found in the CF clinic staff’s self-assessment of confidence and comfort in providing SRH education and their access to needed resources and skills. Although not statistically significant, there was an improvement in the percentage of staff that stated they would include SRH education in their practice.

The study was strengthened by the overall number of surveys completed and the fact that multiple groups were surveyed, including AYA, parents, and CF staff. Additionally, there was a wide range of ages surveyed among AYA with CF, from 14 to 24 years.

Interpretation

The results support current literature on SRH education for adolescents with CF. In addition, our study found that more than half of AYAs surveyed reported they had not discussed SRH with a CF provider. Frayman and Sawyer reported that young adults receive the majority of their SRH knowledge from their parents2; we found that 70% of AYAs surveyed received SRH education from their parents. Our study found that the CF care team feels SRH education is important and that they play a role in discussions around SRH, but only 50% of care team members are currently including it as part of the care they provide. Qualitative results from this study found that CF clinic staff lack confidence and comfort to provide SRH education; Kazmerski et al reported comparable findings.11

The impact of the project on people and systems was evident when presenting the proposed SRH education guideline to the CF care team. The guideline was met with resistance: there was general resistance to practice change as well as concerns regarding the difficulties of implementing new activities in a busy specialty clinic, such as lack of time, need for training, and individual comfort level. The proposed SRH education guideline is inexpensive but may be time-intensive to execute. However, based on the results of this study that indicate that adolescents with CF want SRH education, the effort would be worthwhile. 

The lack of statistically significant differences in the CF staff results could be related to several factors. Although there was a robust overall survey response, there was a small CF staff sample size with 13 pre-survey and 8 post-survey participants. Additionally, barriers within the clinic, including resistance to practice change, could have contributed to the lack of statistically significant findings.  

Limitations

There are several limitations to the generalizability of the study. Only 1 parent survey was completed online via social media. Efforts were made to adjust for this limitation by allowing more time to complete the survey and a reminder post. The sample was homogenous, with almost all respondents identifying as White and English speaking, but this is consistent with the ethnic demographics of CF.

The risk of selection bias on results is another identified limitation. More females completed the AYA survey than males (62.1% and 37.9%, respectively). Additionally, there were more parents of daughters with CF than sons with CF (82.4% and 41.2%, respectively). It is possible that females and parents of females were more willing and comfortable to complete the survey and return it. Although CF is not a sex-linked genetic disease, it is also possible that more females were seen in the clinic during the timeframe of the project.

Health Implications

The findings in this project confirm the significant need for improved SRH education for adolescents with cystic fibrosis and the need for standardization in care. This project provided valuable data to the CF center regarding their own patients’ needs and a proposed SRH education guideline based on those needs as well as evidence-based recommendations. The proposed guideline has the potential to improve SRH education for adolescents with CF. The next steps for this project include addressing identified barriers and implementation of the proposed SRH education guideline in this CF center. Given the significant response from adolescent girls and their parents, this may be the first group to target.

Acknowledgements

Thank you to Fadi Asfour, MD, for his input and feedback regarding project development and implementation. Thank you to Sue Meihls, RN, and Jennifer Kinsfather, RN, for their support and assistance in the project implementation.

Funding

No outside funding was utilized in the design or implementation of this project.

References

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2.  Frayman KB, Sawyer SM. Sexual and reproductive health in cystic fibrosis: a life-course perspective. Lancet Respir Med. Jan 2015;3(1):70-86. doi:10.1016/s2213-2600(14)70231-0

3. Scotet V, L’Hostis C, Férec C. The Changing Epidemiology of Cystic Fibrosis: Incidence, Survival and Impact of the CFTR Gene Discovery. Genes (Basel). May 26 2020;11(6)doi:10.3390/genes11060589

4. Kazmerski TM, Borrero S, Sawicki GS, et al. Provider Attitudes and Practices toward Sexual and Reproductive Health Care for Young Women with Cystic Fibrosis. J Pediatr Adolesc Gynecol. Oct 2017;30(5):546-552. doi:10.1016/j.jpag.2017.01.009

5.  Kazmerski TM, Hill K, Prushinskaya O, et al. Perspectives of adolescent girls with cystic fibrosis and parents on disease-specific sexual and reproductive health education. Pediatr Pulmonol. Aug 2018;53(8):1027-1034. doi:10.1002/ppul.24015

6. Reproductive Health and Fertility. Cystic Fibrosis Foundation. Accessed September 3, 2021. https://www.cff.org/Life-With-CF/Transitions/Reproductive-Health-and-Fertility/

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8. Kazmerski TM, Miller E, Sawicki GS, et al. Developing Sexual and Reproductive Health Educational Resources for Young Women with Cystic Fibrosis: A Structured Approach to Stakeholder Engagement. Patient. Apr 2019;12(2):267-276. doi:10.1007/s40271-018-0342-4

9. Schaffer MA, Sandau KE, Diedrick L. Evidence-based practice models for organizational change: overview and practical applications. J Adv Nurs. May 2013;69(5):1197-209. doi:10.1111/j.1365-2648.2012.06122.x

10.  Stevens K. Stevens Star Model of Knowledge Transformation. Academic Center for Evidence-Based Practice: The University of Texas Health Science Center at San Antonio. Accessed September 3, 2021. https://nursing.uthscsa.edu/onrs/starmodel/star-model.asp

11. Kazmerski TM, Prushinskaya OV, Hill K, et al. Sexual and Reproductive Health of Young Women With Cystic Fibrosis: A Concept Mapping Study. Acad Pediatr. Apr 2019;19(3):307-314. doi:10.1016/j.acap.2018.08.011

Citation

Taylor CS and Hamilton JL. (2021). Sexual and Reproductive Health Education for Adolescents with Cystic Fibrosis. Utah Women’s Health Review. doi: 10.26054/0d-2vdj-c5d8.

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