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Table of Contents
ORIGINAL ARTICLE
Year : 2021  |  Volume : 4  |  Issue : 2  |  Page : 65-73

Effectiveness of health education on knowledge, attitude, and practice of fertility preservation among parents of adolescents, young adults and among young adults with malignancies at a tertiary care centre in South India


1 Obstetrics and Gynecology, JIPMER, Pondicherry, India
2 Medical Oncology, JIPMER, Pondicherry, India

Date of Submission19-Apr-2022
Date of Acceptance15-Jul-2022
Date of Web Publication30-Dec-2022

Correspondence Address:
Prof. Papa Dasari
Dept. of Obstetrics and Gynecology, JIPMER, Puducherry
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/tofj.tofj_2_22

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  Abstract 

Background: The incidence of cancer among children, adolescents and young adults is on the rise and 80% survive. Fertility preservation is not practiced due to lack of knowledge of affects of cancer and its therapy on fertility and the availability of fertility preservation methods. The objective of this study was to assess Knowledge, Attitude and Practice (KAP) of Fertility preservation among parents of adolescents, young adults and among young adults at base line and after intervention of a dedicated health education programme. Materials and Methods: Prospective interventional study undertaken in a tertiary care set up. Assuming baseline knowledge of fertility preservation as10% with absolute precision of 5%, 67 parents of adolescents and 75 young adults with cancer were included. Preformed questionnaire was used to assess the KAP at base line and after health education programme. The pre-test and post- test values were expressed as proportions and were compared by using McNemar test. SPSS version 20 was usedResults: Baseline knowledge about affect of cancer and its treatment on fertility and availability of fertility preservation methods was 26.7% and16.4%. After health education it was improved to 97.2% and 93.8%. Baseline knowledge about awareness of starting Fertility preservation prior to cancer, types of fertility preservation methods available was 8.9%, and 3.4%, and it was increased to 93.1% and 62.4%. Willingness to practice FP methods increased from 44.7% to 70.2% among parents and 40.5% to 59.5% among young adults. Conclusion: Baseline knowledge regarding fertility preservation and methods available was very poor. The health education programme is the need of the hour as it significantly improved their knowledge and attitude to practice fertility preservation.

Keywords: Adolescents and young adults, cancer, fertility preservation methods, knowledge attitude and practice, parents


How to cite this article:
Harshit D J, Dasari P, Dubashi B. Effectiveness of health education on knowledge, attitude, and practice of fertility preservation among parents of adolescents, young adults and among young adults with malignancies at a tertiary care centre in South India. Onco Fertil J 2021;4:65-73

How to cite this URL:
Harshit D J, Dasari P, Dubashi B. Effectiveness of health education on knowledge, attitude, and practice of fertility preservation among parents of adolescents, young adults and among young adults with malignancies at a tertiary care centre in South India. Onco Fertil J [serial online] 2021 [cited 2023 Feb 4];4:65-73. Available from: https://www.tofjonline.org/text.asp?2021/4/2/65/366153




  Introduction Top


Fertility preservation is the process of saving or protecting eggs, sperm, or reproductive tissue so that a person can use them to have biological children in future. The incidence of cancer among children, adolescents has been on raising trend. The survival rates are as high as 80%[1] because of early diagnosis and effective treatment, the quality of life is improved and hence the importance of preserving the fertility needs to be addressed in these population as cancer affects fertility due to the disease itself and also due to the treatments like, surgery, chemotherapy and radiotherapy. Effect on fertility depends on drug which is used in chemotherapy and site of radiation along with dose of therapy used and it is most often distressing effect of cancer therapy.[2]

In developing countries like ours the public, parents and adults lack the knowledge regarding the option of preserving their fertility and the issue is not discussed as a whole. The treatment plan is centred on the overall survival of the patient and cure of cancer. Once survival improves, the issues of fertility arises and by the time already damage would have occurred to the gonads due to chemotherapeutic agents and radiotherapy and infertility results and restoration of fertility with their own gametes becomes difficult. Moreover, mutations occur due to chemoradiation and the chances of abnormal gametes with chromosomal anomalies increases. Hence it is important to offer fertility preservation techniques before treatment planning.

It is essential to improve their knowledge regarding fertility preservation techniques so as to enable them to opt in or opt out of fertility preservation and not informing them in the beginning of the treatment plan may lead to medicolegal issues later once, they survive and want to start the family. Health education programme regarding fertility preservation is the way forward to achieve this. Studies on this aspect are less. JIPMER being a tertiary care Institute with Regional cancer centre has high load of cancer patients and has greater need for practising fertility preservation and hence this study was undertaken to sensitise the target population.


  Materials and methods Top


This was an interventional study (pre-post design) conducted in department of Obstetrics and Gynecology with department of Medical Oncology JIPMER, Puducherry. The Inclusion criteria were parents of adolescents and young adults with malignancies who were seeking care in the department of Gynaecology and Medical Oncology (group1) and Young adults (20 to 40) years of age with malignancies who were seeking care in the department of Gynaecology and Medical Oncology(group2). The Exclusion criteria were malignancies in the age of <12 years and >40 years and young adults who have completed their family. Sampling method was convenient sampling. Assuming baseline knowledge of 10%, calculation based on 95% confidence interval using Open epi software version 2.1. with a non response rate of 5%, final sample size is calculated as 146.[3] This study was approved by JIPMER ethics committee no. JIP/IEC/2018/390.

After taking informed consent, the participants who fulfilled the inclusion criteria were given a pre-test questionarie in the local language as well as in English. The type of malignancy, the adolescents and young adults are suffering is noted along with the stage of the disease from the case records. Demographic data and other clinical data were noted on a predetermined proforma. Health education was given using PPT (power point presentation) regarding effects of cancer on fertility and the available methods to preserve fertility based on SEOM 2016[4] and ASCO 2018[5] clinical guidelines of fertility preservation in cancer patients. Participants were encouraged to ask doubts and these were clarified by investigators. Fertility preservation techniques such as semen cryopreservation, oocyte cryopreservation, embryo cryopreservation were explained in detail. They were appraised of survival rates as per stage of specific malignancies and affects of chemotherapy, radiotherapy and surgery by PPT. Post-test questionnaire were given at the end of health education and change in the knowledge and attitudes was measured by statistical tests.

Statistical analysis

Data were entered in MS excel an was expressed as Mean, SD for continuous variables like age, categorical variables like education, socioeconomic status, type of cancer and awareness in various domains were expressed as proportions. The pre-test and post- test values were expressed as proportions. The pre- test and post- test values were compared by using McNemar test. Differences in the proportions along with 95% confidence intervals were determined. Statistical analysis was carried out with 5% level of significance using SPSS version 20. P value of <0.05 was considered as statistically significant.


  Results Top


Response rate in this study was 100%. Among study population, parents were 45.9% and young adults were 54.1% [Table 1a] and [Table 1b]. Demographic characteristics are depicted in [Table 1]. The Spectrum of malignancies in this study were mostly haematological (54.6%). Breast cancer, bone cancer (10.3%) and ovarian cancer (9.5%) were the next common [Figure 1]. The other malignancies wergastrointestinal, testicular, skin and gestational trophoblastic neoplasia. Stage of the malignancies at recruitment was shown in [Figure 2].
Table 1: a. Sociodemographic profile of Adolescents and young adults with malignancies

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Table 1: b. Sociodemographic profile of parents of adolescents and young adults with malignancies

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Figure 1: Type of malignancies among adolescents and young adults

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Figure 2: Stage of malignancy at diagnosis

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Regarding cancer and its affects:

Overall, among the study population: Baseline knowledge regarding type of cancer and survival was good (>80%). Type of therapy received by adolescents and young adolescents with malignancies is shown in [Table 2]. Baseline knowledge about affect of cancer and its treatment on fertility was poor (26.7%). Baseline knowledge regarding availability of fertility preservation methods is very poor (16.4%) After health education, their knowledge in above areas improved to >93% [Figure 3]a and b.
Table 2: Type of Therapy for Malignancy

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Figure 3: a. Knowledge regarding cancer and its therapy before health Education. b. Knowledge regarding cancer and its therapy after health Education

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Among parents of adolescents and young adults, baseline knowledge about type of cancer and awareness of survival is good, but affect of cancer and its treatment on fertility and fertility preservation methods were poor and after health education their knowledge is improved to>90%.

All young adults had good knowledge regarding type of cancer, 85% knew regarding survival. Knowledge regarding affect of cancer and its treatment on fertility was poor 27.8% and awareness regarding fertility preservation methods was also poor. After health education their knowledge improved to >95%

Regarding fertility preservation

Overall, among study population

  • ➢ Baseline knowledge about awareness of starting fertility preservation (FP) prior to cancer, types of fertility preservation methods available, preservation of fertility if FPM is practiced were poor (8.9%, 3.4% and 25.3% respectively). Baseline knowledge about chances of fertility when FP methods were practiced was very poor 1.3%


  • ➢ Major source of information about the availability of fertility preservation methods were from doctors in both parents and young adults’ group (70% and 57%) followed by media (16.6%,) friends (12.5%) and family (8.4%)


Among the parents of adolescents and young adults’ awareness of starting FP prior to cancer therapy, types of FP methods available, preservation of fertility if FP method is practiced was increased to 89.6%, 52.2%and 86.5% respectively [Figure 4]a & b.
Figure 4: a. Knowledge about fertility preservation methods before health education. b. Knowledge about fertility preservation methods after health education

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In young adults, awareness of starting FP prior to cancer, types of FP methods available, preservation of fertility if FPM is practiced, had been increased to 96.2%, 70.9%and 89.8% respectively. Though improvement in knowledge regarding chances of fertility when FP methods were practiced was statistically significant, only small number of parents and young adults (23.9% and 32.9% respectively) could understand this.

Attitudes for practice of FPM if freely available at base line was 44.7% in parents of adolescents and young adults, 40.5% in young adults’ group. After health education70% of parents and more than 60% young adult group opted to practice fertility preservation methods [Figure 5].
Figure 5: Assessment of attitudes for practice or adapting fertility preservation

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The reasons to accept fertility preservation methods among the young adults was to have their own biological child in future and parents gave reason that in later life their child might ask why their fertility is not preserved [Table 3a] & [Table 3b].
Table 3: a. Reasons for acceptance or non-acceptance of fertility preservation methods among parents of adolescents and young adults before and after health education

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Table 3: b. Reasons for acceptance or non-acceptance of fertility preservation methods in young adults before and after health education

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  Discussion Top


There are many studies regarding assessment of knowledge of cancer and its affect on fertility, and availability of fertility preservation methods. But only few have studied among the adolescent and young adult cancer patients. No studies could be found which assessed the effect of health education programme on fertility preservation among adolescents and young adults. A pilot study published in the journal of cancer in 1999 assessed young cancer survivors’ attitudes and experiences regarding having children after cancer revealed that 57% were given information about infertility about cancer.

In the present study, majority of the (49%) belonged to age group of 20 to 25 years with the mean age of 24.75 ± 4.20 years. This is similar to the study of Hohmann C et al. in which the mean age 25.7 ± 5.3 years. But Leslie R et al. reported the mean age as 32 ± 7 years [Table 4]. In the present study, 47.2% of the subjects were males and 52.8% were females. Gender distribution across the study population was found to be consistent with other studies.[6]
Table 4: Description of demographic characteristics in various studies

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In the present study, 54.8% have health insurance which was less when compared to the study conducted by Margarett et.al in united states. This disparity in the health insurance status of the subjects can be partially explained by economic status of the country/ region where study was conducted, utilisation of health insurance policies and involvement of non-government organisation. This disparity in the health insurance status also could be one of the reasons for low acceptance rates of FPM in our study.

In the present study, 6.8% of the subjects (n = 10) were illiterate and 20% finished only primary education 44% were graduates which is comparable to Margarett et al. study where 45.6% were graduates and 54.4% finished primary education. In Hohmann ‘s study 48% completed primary education and 50% completed secondary education.

Occupation of the patient or parent of adolescents and young adults can influence the baseline knowledge regarding fertility preservation and attitude regarding fertility preservation practices. It was found that 40% of parents of the study subjects were daily wage workers which can partially explain the poor baseline knowledge (16.4%) regarding fertility preservation in our study. Information regarding occupation, marital status, number of living issues at the time of health education of study subjects were not available in previous studies for comparison. We included occupation of the subjects as it may influence this study outcomes. Another important factor that can influence the attitude towards fertility preservation and its acceptance rate is number of living issues at the time of counselling. It was noticed that all the study subjects in adolescents’ group were unmarried and more than 50% (n = 58) of the patients in young adults’ group were married and 77.6%(n = 45) of the married people were having one living issue. This can explain the higher acceptance rate of FPM in parents of adolescents group when compared to young adults.

Concerns regarding affect of cancer treatment on fertility and methods of fertility preservation will be better addressed in patients with gonadal cancers when compared to other malignancies. It was observed that only11.5% (n = 17) of the study subjects were having gonadal cancers which was less when compared to U.S study (40%, n = 179).[6] this may be the reason for the high baseline knowledge regarding affect of cancer treatment on fertility, initiation of fertility preservation methods prior to treatment in U.S study (77.3%, 56.8% respectively) when compared to our study (26.7%, 8.9% respectively).

Among studies in which the majority of the patients had non gonadal malignancies the baseline knowledge was less (34.9%, 57% Hohmann study, Leslie study respectively) [Table 5] when compared to U.S study[6] where majority of patients were having gonadal malignancies (77.3%). This could be due to lack of awareness regarding the affect of chemotherapeutic drugs which were used in non-gonadal malignancies on fertility. This issue can be resolved by proper health education regarding the risk of gonadal toxicity of various chemotherapeutic drugs and other treatment modalities that were used in non-gonadal malignancies.
Table 5: Baseline knowledge regarding cancer and fertility preservation methods

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In the present study, knowledge regarding fertility preservation was very poor among parents of adolescents and young adults as well as young adults. The attitude towards practice of fertility preservation was present at baseline among 45% of parents and 40% of young adults but they were not aware of the methods or techniques and their success. The health education programme helped in improving their knowledge and attitude towards the fertility preservation. A written document regarding various fertility preservation issues due to cancer and its therapy fertility preservation methods, their availability and their success rate may improve their knowledge as well as acceptance rate of fertility preservation methods.

Strengths

Study strengths were prospective study, it included various types of malignancies which occur mainly in adolescents and young adults, both Parents of adolescents, young adults and young adults are included, both baseline, post counselling knowledge attitude and practice towards the fertility preservation methods have been assessed unlike previous studies.

Limitations

The limitations were less sample size, the study included both early and advanced stage of cancer, which could influence attitude and acceptance of fertility preservation methods and health education programme was generalised and not focused on educating the entire family.


  Conclusion Top


Baseline knowledge on fertility preservation and methods available to preserve future fertility was very poor among parents of adolescents and young adults as well as young adults though they had good knowledge regarding type of cancer and its affects on fertility. The health education programme has improved their knowledge and attitude to practice fertility preservation significantly.[8]

Financial support and sponsorship

Source(s) of support in the form of grants, equipment, drugs, or all of these

Registration number in case of a clinical trial and where it is registered (name of the registry and its URL): NA

Conflicts of interest

There are no conflicts of interest.

Authors contributors

Papa Dasari: Concept and preparation of protocol and Questinairre, Data analysis manuscript checking

Harshith DJ: Conducted the Study: Data analysis; Manuscript drafting

Biswajith Dubhashi: Inputs as a medical aoncologist and allowed to recruit patients from his OPD, Manuscript checking



 
  References Top

1.
Pritchard-Jones K, Hargrave D. Declining childhood and adolescent cancer mortality: Great progress but still much to be done. Cancer 2014;120:2388-91.  Back to cited text no. 1
    
2.
Jones GL, Hughes J, Mahmoodi N, Greenfield D, Brauten-Smith G, Skull J, et al; (On behalf of the Cancer, Fertility and Me research team). Observational study of the development and evaluation of a fertility preservation patient decision aid for teenage and adult women diagnosed with cancer: The cancer, fertility and me research protocol. BMJ Open 2017;7:e013219.  Back to cited text no. 2
    
3.
Letourneau JM, Ebbel EE, Katz PP, Katz A, Ai WZ, Chien AJ, et al. Pretreatment fertility counseling and fertility preservation improve quality of life in reproductive age women with cancer. Cancer 2012;118:1710-7.  Back to cited text no. 3
    
4.
Cotterill SJ, Parker L, Malcolm AJ, Reid M, More L, Craft AW Incidence and survival for cancer in children and young adults in the north of england, 1968-1995: A report from the northern region young persons’ malignant disease registry. Br J Cancer 2000;83: 397-403.  Back to cited text no. 4
    
5.
Miller KD, Fidler-Benaoudia M, Keegan TH, Hipp HS, Jemal A, Siegel RL Cancer statistics for adolescents and young adults, 2020. CA Cancer J Clin 2020;70:443-59.  Back to cited text no. 5
    
6.
Shnorhavorian M, Harlan LC, Smith AW, Keegan TH, Lynch CF, Prasad PK, et al.; AYA HOPE Study Collaborative Group. Fertility preservation knowledge, counseling, and actions among adolescent and young adult patients with cancer: A population-based study. Cancer 2015;121:3499-506.  Back to cited text no. 6
    
7.
Hohmann C, Borgmann-Staudt A, Rendtorff R, Reinmuth S, Holzhausen S, Willich SN, et al. Patient counselling on the risk of infertility and its impact on childhood cancer survivors: Results from a national survey. J Psychosoc Oncol 2011;29:274-85.  Back to cited text no. 7
    
8.
Schover LR, Rybicki LA, Martin BA, Bringelsen KA Having children after cancer. A pilot survey of survivors’ attitudes and experiences. Cancer 1999;86:697-709.  Back to cited text no. 8
    


    Figures

  [Figure 1], [Figure 2], [Figure 3], [Figure 4], [Figure 5]
 
 
    Tables

  [Table 1], [Table 2], [Table 3], [Table 4], [Table 5], [Table 6], [Table 7]



 

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