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Research Article
Revised

Developing an Indonesian fertility preservation questionnaire for health care providers treating patients with cancer: A preliminary pilot study

[version 2; peer review: 2 approved]
Achmad Kemal Harzif
https://orcid.org/0000-0002-3552-1610
1, Raymond Surya
https://orcid.org/0000-0001-5119-0674
2, Mila Maidarti1, Ana Mariana
https://orcid.org/0000-0001-9961-4958
3, Bara Tracy Lovita
https://orcid.org/0000-0003-0081-9414
3, Budi Wiweko1
Achmad Kemal Harzif
https://orcid.org/0000-0002-3552-1610
1, Raymond Surya
https://orcid.org/0000-0001-5119-0674
2, [...] Mila Maidarti1, Ana Mariana
https://orcid.org/0000-0001-9961-4958
3, Bara Tracy Lovita
https://orcid.org/0000-0003-0081-9414
3, Budi Wiweko1
PUBLISHED 10 May 2019
Author details Author details
OPEN PEER REVIEW
REVIEWER STATUS

Abstract

Background: Early detection and advanced treatment increases the five-year survival rate of patients with cancer. However, long-term cancer therapy, such as chemotherapy and radiotherapy, can have negative effects, such as infertility. This study aimed to develop a standardized Indonesian questionnaire, which would be used to assess the quality of health care providers’ knowledge, attitude, and practice regarding fertility preservation in patients with cancer.
Methods: A pilot study was performed in January and February 2018 at Dr. Cipto Mangunkusumo Hospital, Jakarta, Indonesia. An existing questionnaire was translated from English to Indonesian using forward translation, back translation, expert panel, pretesting, and cognitive interviewing. Ten subspecialists in the following departments made up an expert panel, who were involved in pretesting and cognitive interviewing: pediatric hematology-oncology, hematology-oncology/internal medicine, gynecologic oncology, gynecologic immune-endocrinology, radiology-oncology, and surgical oncology.
Results: The questionnaire was successfully translated. The ten respondents stated that the maximum age for women’s fertility preservation is 40 years of age (60%), 45 years of age (30%), or had no maximum age (10%). Additionally, the respondents stated that the maximum age for men’s fertility preservation is 40 years of age (30%), 50 years of age (20%), or had no maximum age (50%). The respondents’ knowledge stated that > 50% of them were aware but do not know enough about fertility preservation. The respondents stated that more than 50% of them give feedback agreeing to fertility preservation, and they always give advice about fertility preservation to their patients.
Conclusion: The translation of the questionnaire followed translation steps from the World Health Organization and was adjusted based on the expert panel’s comments concerning fertility preservation. This validated questionnaire tool in Indonesian can be used for research purposes and clinical evaluation of fertility preservation among health care providers in Indonesia.

Keywords

Knowledge, Attitude, Practice, Indonesian Questionnaire

Corresponding author: Achmad Kemal Harzif
Competing interests: No competing interests were disclosed.
Grant information: This work is supported by Hibah PITTA 2018 funded by DRPM Universitas Indonesia (No.5000/UN2.R3.1/HKP.05.00/2018).
The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
Copyright:  © 2019 Harzif AK et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
How to cite: Harzif AK, Surya R, Maidarti M et al. Developing an Indonesian fertility preservation questionnaire for health care providers treating patients with cancer: A preliminary pilot study [version 2; peer review: 2 approved]. F1000Research 2019, 7:1890 (https://doi.org/10.12688/f1000research.15948.2) First published: 04 Dec 2018, 7:1890 (https://doi.org/10.12688/f1000research.15948.1) Latest published: 10 May 2019, 7:1890 (https://doi.org/10.12688/f1000research.15948.2)

Revised Amendments from Version 1

In the Discussion section, we discussed the comments about the difficulty of the questionnaire. We have also slightly re-written the Limitations section.

See the authors' detailed response to the review by Jane A. Stewart

Introduction

Based on data from the US Cancer Statistics Working Group, the five most common cancers in 2014 were breast, prostate, lung and respiratory tract, colon and rectum, and uterine and ovary1. The Riset Kesehatan Dasar 2013 showed that the prevalence of cancer in Indonesia was 0.14% (347,782 people), with cervical (0.08%; 98,692 people) and breast (0.05%; 61,682 people) cancers ranked highest2. In Indonesia, more than 135,000 people below 45 years of age are diagnosed with cancer annually2.

Early detection and advanced treatments increase the five-year survival rate of patients with cancer. However, long-term cancer therapy, such as chemotherapy and radiotherapy, can have negative psychologic, economic, social, sexual, and biologic effects3,4. In 2014, the Guidelines from National Comprehensive Cancer Network stated that fertility preservation is an essential component when treating young and adolescent patients with cancer5,6. In fact, few patients are offered treatment choices based on fertility preservation due to lack of knowledge on optimal time, methods, and counselling approaches7. The American Academy of Pediatrics, American Society of Clinical Oncology, and American Society of Reproductive Medicine suggest discussing potential complications and choice of fertility preservation as early as possible8,9.

Because there are no fertility preservation questionnaires available in Indonesia, this study aimed to develop a standardized Indonesian questionnaire that can be used to assess quality of health care providers’ knowledge, attitude, and practice regarding fertility preservation in patients with cancer.

Methods

Ethical statement

This study was approved by The Ethics Committee of Faculty of Medicine, University of Indonesia under number 926/UN2.F1/ETIK/2017. Written informed consent was obtained from all participants prior to participation.

Questionnaire translation

This study was performed in January and February 2018 at Dr. Cipto Mangunkusumo Hospital, Jakarta, Indonesia. An existing questionnaire, “Fertility preservation in cancer survivors: A national survey of oncologists’ current knowledge, practice, and attitudes,” published in English in 201310 was translated to Indonesian by two independently certified medical translators whose first language is Indonesian, with permission from the publisher.

To check the accuracy of the translation, the Indonesian questionnaire was back translated to English by another medical translator (RS). Misunderstandings or unclear word choices in the initial translations were resolved by an author (RS) as appropriate to the aim of this study. After the translation had been completed, an expert (AKH) familiar with the construct of interest and methodology reviewed all versions of translations and determined whether the translation had achieved semantic, idiomatic, experiential, and conceptual equivalence.

The final translation of the Indonesian pilot questionnaire (Supplementary File 1) was given to specialists and subspecialists who completed the questionnaire and were interviewed verbally to ensure clarity of answers11. These interviews took place in Dr. Cipto Mangunkusumo Hospital. Specialist and subspecialists were chosen randomly from all staff at Dr. Cipto Mangunkusumo Hospital who fit the inclusion criteria (see below). Researchers contacted these experts directly, providing an explanation of the study and gaining informed consent from the expert to get involved in this study. Interviews were not recorded.

Questionnaire validation

Ten subspecialists or specialists in the following departments who directly treat patients with cancer were recruited to take part in the study: pediatric hematology-oncology, hematology-oncology/internal medicine, gynecologic oncology, gynecologic immune-endocrinology, radiology-oncology, and surgical oncology. The subspecialist or specialist in Dr. Cipto Mangunkusumo Hospital were randomly chosen and recruited to this study based on their experience for at least 5 years. They were considered as an expert panel. Inclusion criteria for this study were (a) subspecialists or specialists aged 30–45 years; and (b) subspecialists or specialists who have studied in their field for at least 5 years; and exclusion criteria for this study were (a) respondents who not willing to be a participant in this study; and (b) incomplete filling of the informed consent.

Due to the qualitative nature of this study, only face validity and construct validity were assessed. Face validity was used to determine whether the instrument was understandable and relevant to the targeted population. Construct validity was used to determine the reason and consequence describing the real condition. Content validity was not assessed because the purpose of this questionnaire was not to determine good/bad knowledge and positive/negative attitude about practice.

Data analysis

The data gathered from completed questionnaires were distributed by frequency and percentage. The analysis used SPSS Statistics for Windows, version 23.0.

Results

In this preliminary pilot study, ten respondents from Dr Cipto Mangunkusumo Hospital (8 males) participated in this study from the following specialties: pediatric hematology-oncology (n=2), hematology-oncology/internal medicine (n=1), gynecologic oncology (n=2), gynecologic immune-endocrinology (n=2), radiology-oncology (n=1), and surgical oncology (n=2).

Responses to the completed questionnaires

In total, 60% (6/10), 30% (3/10), and 10% (1/10) of respondents stated that the maximum age for women’s fertility preservation is 40 years of age, 45 years of age, or had no maximum age, respectively. A total of 30% (3/10), 20% (2/10), and 50% (5/10) of respondents stated the maximum age for men’s fertility preservation is 40 years of age, 50 years of age, or had no maximum age, respectively.

Table 1 describes the frequency that health care providers encounter patients who have used/are using fertility preservation options. Table 2 describes the familiarity of health care providers about methods of fertility preservation.

Table 1. Frequency of health care providers encountering patients who have used/are using fertility preservation options.

NeverRarelyUsuallyAlways
Ovarian tissue cryopreservation8/102/1000
Oocyte cryopreservation6/103/101/100
In vitro fertilization with embry o cryopreservation6/1001/103/10
Sperm cryopreservation7/10003/10
Testicular tissue cryopreservation8/102/1000
Pre-treatment cancer using GnRH agonist5/102/101/102/10

Table 2. Health care providers’ knowledge of fertility preservation options.

Not at all
knowledgeable		Aware of but do
not know well		KnowledgeableVery
knowledgeable
Ovarian tissue cryopreservation06/104/100
Oocyte cryopreservation05/103/102/10
In vitro fertilization with embryo
cryopreservation		06/101/103/10
Sperm cryopreservation05/103/102/10
Testicular tissue cryopreservation2/106/102/100
Pre-treatment cancer using GnRH agonist 05/105/100

Table 3 shows the health care providers’ practice of giving advice about fertility preservation, and Table 4 shows their attitudes towards fertility preservation. Table 5 shows the factors influencing health care providers when initiating a discussion about fertility preservation.

Table 3. Health care providers’ practice of giving advice about fertility preservation.

NeverRarelyUsuallyAlways
I consider how essential fertility is in the future 03/102/105/10
When I plan the patient’s treatment regimen, I take into account their desire for future fertility1/103/1006/10
I discuss the impact of a patient’s condition and/or treatment might have on their future fertility002/108/10
I provide my patients with written information about fertility preservation1/103/101/105/10
I consult a fertility specialist or reproductive endocrinologist with questions about potential
fertility issues of my patients		3/104/101/102/10
I refer patients who have questions about fertility to a fertility specialist or reproductive
endocrinologist		5/103/1002/10

Table 4. Health care providers’ attitudes towards fertility preservation.

Strongly
disagree		DisagreeNeither agree
or disagree		AgreeStrongly
agree
Fertility preservation is a high priority to discuss with
newly diagnosed cancer patients		0007/103/10
Treating the primary cancer is more important than fertility
preservation		02/102/104/102/10
The success rates of fertility preservation are not as yet
good enough to make it a viable option		03/106/101/100
I feel comfortable discussing fertility preservation with my
patients		01/101/106/102/10
I am willing to provide a less effective cancer treatment
regimen in order to attempt to preserve a patients’ fertility		06/1002/102/10

Table 5. Factors that health care providers consider when deciding to initiate a discussion about fertility preservation.

FactorsNot at allTo some
extent		To a large
extent
Poor success rates of fertility preservation options1/105/104/10
Lack of fertility services in the area2/103/105/10
Constraints on my time4/105/101/10
My limited knowledge of fertility preservation options1/108/101/10
Burden to patients1/106/103/10
Someone else within my practice discusses fertility
preservation with my patients		4/102/104/10
The patient …
… is too ill to delay treatment to pursue fertility preservation07/103/10
… cannot afford fertility preservation3/106/101/10
… has a hormonally-sensitive malignancy07/103/10
… does not want to discuss fertility preservation2/107/101/10
… has a poor prognosis05/105/10
... is single06/104/10
… is lesbian or gay8/102/100
… already has a child or children1/107/102/10

Feedback from the participants about the questionnaire

All comments have been translated from Indonesian.

The following are comments made during the verbal interview about the format and definitions used in the translated questionnaire:

  • “The questionnaire should contain [an] explanation of each fertility preservation.” (hematology-oncologic internal medicine.)

  • “The identity [of a patient requiring fertility preservation] is only initial. [The] number of cases on Q2 should be made [into categories] and focused to the last year. [The] format [of the] questionnaire should be adjusted to [be easier for] the readers.” (hematology-oncologic pediatrician.)

  • “The questionnaire is too difficult. It should contain the explanation of what the definition [is for] each fertility preservation.” (hematology-oncologic pediatrician.)

  • “The length of clinical practice in the oncology field should be included to the questionnaire.” (oncology gynecologic.)

  • “On identity column, it should add the last major educational background and radio-oncology should be included. Number of cases taking care by health care providers should be shown [by] percentage.” (radio-oncology.)

The following are comments made during the verbal interview about the use of cultural background used in the translated questionnaire:

  • “Cultural background around social, racial, and religion should be omitted.” (hematology-oncologic internal medicine.)

  • “On cultural background [questions], [due to the] culture [in] Indonesia [concerning] gay or lesbian, or towards social [status], race, and religion should be omitted to minimalize the possibility of conflict.” (immune endocrinology gynecologic.)

Dataset 1.All raw data included the medical background of respondents, the health care providers’ knowledge, attitude, and practice regarding fertility preservation and also factors that health care providers consider when deciding to initiate a discussion about fertility preservation.

Discussion

This study includes the pilot results of the measures of success of a translation of an existing questionnaire to Indonesian to determine knowledge, attitude, and practice of providers regarding fertility preservation in patients with cancer. The results of this study are not applicable to all health care providers because the questionnaire is very specific for clinicians treating patients with cancer.

The World Health Organization proposes various steps to achieve different language versions of English instruments that are equivalent in each target country/culture: forward translation, expert panel, back translation, pretesting and cognitive interviewing, leading to a final version12. In this study, the expert panel, made up of ten subspecialists and specialists, provided feedback after the back translation via pretesting and cognitive interviewing. After this pilot study, we would like to distribute this questionnaire to health care providers treating patients with cancer.

Based on respondents’ feedback, we conclude that, in Indonesia, fertility preservation still is not common and familiar among practitioners taking care of patients with cancer. In total, 50% of respondents were aware of but not experts in fertility preservation. Additionally, 50% of respondents never had patients who had used or were using fertility preservation; however, respondents were subspecialist oncologists or clinicians directly taking care of patients with cancer. This may be because there is still no availability of fertility preservation in Indonesia. In Hong Kong, 45.6% of clinicians were familiar with fertility preservation13.

Our study also shows that most respondents had discussed the impact of treatment to future fertility with patients. In total, 30% of respondents had referred patients to a fertility specialist. A similar study in Lebanon found that 90% of clinical practitioners and 94% of oncologists agreed to discuss fertility preservation with patients before cancer treatment14. Clinicians in Hong Kong did not refer patients to fertility specialists due to lack of available time before treatment, considerable risk of recurrence, poor prognosis, financial constraints, cancer treatment as top priority at the time, and lack of awareness of such service13.

A comment said that difficulty of this questionnaire was about the explanation for each definition of fertility preservation. The providers treating patients with cancer were not familiar for options of fertility preservation. Harzif, et al.15 proved that most obstetricians and gynaecologists knew about fertility preservation (86.3%); however, they were not familiar enough for each option. The knowledge of sperm, oocyte, embryo, ovarian tissue, testicular tissue preservation, and pre-treatment with GnRH agonist was less than 50%. Moreover, other specialists treating cancer patients might not be familiar enough for each option of preservation. Therefore, this Indonesian questionnaire should include the definition for each method of preservation. Apart from that, issue about gay, lesbian, race, and religion was still taboo in Indonesia.

Limitations

As shown by the quotes in the Results section, limitations of the questionnaire were that cultural background factors influenced health care providers’ decisions to initiate discussions about fertility preservation. The questions about this issue can result contradiction between pro and contra of this issue. That is why respondents suggested to omit it for Indonesian questionnaire. For example, British respondents stated that their decision to discuss fertility preservation was influenced by poor prognosis (88%) and whether the patient already had children (45%)10.

Conclusion

Based on data obtained in this preliminary pilot study, we translated the English questionnaire to Indonesian and revised it following processes adopted from World Health Organization and adjusted through expert respondents’ comment. Supplementary File 1 contains the Indonesian version of the questionnaire about the quality of health care providers’ knowledge, attitude, and practice regarding fertility preservation in patients with cancer.

By having this validated tool questionnaire in Indonesian, it can be used for both research purposes and clinical evaluation of fertility preservation among health care providers in Indonesia.

Data availability

F1000Research: Dataset 1. All raw data included the medical background of respondents, the health care providers’ knowledge, attitude, and practice regarding fertility preservation and also factors that health care providers consider when deciding to initiate a discussion about fertility preservation, https://doi.org/10.5256/f1000research.15948.d22787816

Grant information

This work is supported by Hibah PITTA 2018 funded by DRPM Universitas Indonesia (No.5000/UN2.R3.1/HKP.05.00/2018).

The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

Acknowledgments

The authors wish to thank everyone who supported this study and also to DRPM Universitas Indonesia by Hibah Pitta 2018. We also would like to thank to Monica Helton through AuthorAid for helping us improve our manuscript by copyediting and giving us thoughtful comments.

Supplementary material

Supplementary File 1: Questionnaire and informed consent form in Bahasa Indonesia.

Click here to access the data

References

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  • 3.  Goldhirsch A, Ingle JN, Gelber RD, et al.: Thresholds for therapies: highlights of the St Gallen International Expert Consensus on the primary therapy of early breast cancer 2009. Ann Oncol. 2009; 20(8): 1319–29. PubMed Abstract | Publisher Full Text | Free Full Text
  • 4.  Cancer_fertility_effects_Jan08.pdf [Internet]. [cited 2017 Jul 25]. Reference Source
  • 5.  Coccia PF, Altman J, Bhatia S, et al.: Adolescent and young adult oncology. Clinical practice guidelines in oncology. J Natl Compr Canc Netw. 2012; 10(9): 1112–50. PubMed Abstract | Publisher Full Text
  • 6.  Levine J, Canada A, Stern CJ: Fertility preservation in adolescents and young adults with cancer. J Clin Oncol. 2010; 28(32): 4831–41. PubMed Abstract | Publisher Full Text
  • 7.  Taylor JF, Ott MA: Fertility Preservation after a Cancer Diagnosis: A Systematic Review of Adolescents’, Parents’, and Providers’ Perspectives, Experiences, and Preferences. J Pediatr Adolesc Gynecol. 2016; 29(6): 585–98. PubMed Abstract | Publisher Full Text | Free Full Text
  • 8.  Loren AW, Mangu PB, Beck LN, et al.: Fertility preservation for patients with cancer: American Society of Clinical Oncology clinical practice guideline update. J Clin Oncol. 2013; 31(19): 2500–10. PubMed Abstract | Publisher Full Text | Free Full Text
  • 9.  Fallat ME, Hutter J, American Academy of Pediatrics Committee on Bioethics, et al.: Preservation of fertility in pediatric and adolescent patients with cancer. Pediatrics. 2008; 121(5): e1461–9. PubMed Abstract | Publisher Full Text
  • 10.  Adams E, Hill E, Watson E: Fertility preservation in cancer survivors: a national survey of oncologists’ current knowledge, practice and attitudes. Br J Cancer. 2013; 108(8): 1602–15. PubMed Abstract | Publisher Full Text | Free Full Text
  • 11.  Tsang S, Royse CF, Terkawi AS: Guidelines for developing, translating, and validating a questionnaire in perioperative and pain medicine. Saudi J Anaesth. 2017; 11(Suppl 1): S80–9. PubMed Abstract | Publisher Full Text | Free Full Text
  • 12.  World Health Organization: Process of translation and adaptation of instruments. 2009. Reference Source
  • 13.  Chung JP, Lao TT, Li TC: Evaluation of the awareness of, attitude to, and knowledge about fertility preservation in cancer patients among clinical practitioners in Hong Kong. Hong Kong Med J. 2017; 23(6): 556–61. PubMed Abstract | Publisher Full Text
  • 14.  Ghazeeri G, Zebian D, Nassar AH, et al.: Knowledge, attitudes and awareness regarding fertility preservation among oncologists and clinical practitioners in Lebanon. Hum Fertil (Camb). 2016; 19(2): 127–33. PubMed Abstract | Publisher Full Text
  • 15.  Harzif AK, Maidarti M, Iswaranti, et al.: Knowledge and Attitude of Indonesian Obstetrician and Gynecologists Regarding Fertility Preservation in Cancer Patients. Adv Sci Lett. 2017; 23(7): 6954–9. Publisher Full Text
  • 16.  Harzif AK, Surya R, Maidarti M, et al.: Dataset 1 in: Developing an Indonesian fertility preservation questionnaire for health care providers treating patients with cancer: A preliminary pilot study. F1000Research. 2018. http://www.doi.org/10.5256/f1000research.15948.d227878

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Harzif AK, Surya R, Maidarti M et al. Developing an Indonesian fertility preservation questionnaire for health care providers treating patients with cancer: A preliminary pilot study [version 2; peer review: 2 approved]. F1000Research 2019, 7:1890 (https://doi.org/10.12688/f1000research.15948.2)
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Reviewer Report 28 May 2019
Jane A. Stewart, Newcastle Fertility Centre, International Centre for Life, Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK 
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https://doi.org/10.5256/f1000research.21101.r48355
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Stewart JA. Reviewer Report For: Developing an Indonesian fertility preservation questionnaire for health care providers treating patients with cancer: A preliminary pilot study [version 2; peer review: 2 approved]. F1000Research 2019, 7:1890 (https://doi.org/10.5256/f1000research.21101.r48355)
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Reviewer Report 11 Apr 2019
Jane A. Stewart, Newcastle Fertility Centre, International Centre for Life, Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK 
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https://doi.org/10.5256/f1000research.17418.r45599
This paper describes a pilot study of a questionnaire to assess the practice of health care providers' (namely oncologists') understanding and attitudes to fertility preservation in a local setting to consider its utility nationally. The authors describe the process of ... Continue reading
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Stewart JA. Reviewer Report For: Developing an Indonesian fertility preservation questionnaire for health care providers treating patients with cancer: A preliminary pilot study [version 2; peer review: 2 approved]. F1000Research 2019, 7:1890 (https://doi.org/10.5256/f1000research.17418.r45599)
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  • Author Response 10 May 2019
    Achmad Kemal, Division of Immuno-Endocrinology and Fertility, Department of Obstetrics and Gynecology, Faculty of Medicine, Universitas Indonesia, Dr. Cipto Mangunkusumo Hospital, Jakarta, Indonesia
    10 May 2019
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    Thank you for the review.
    We uploaded revision on our manuscript. We hope to hear your review.
    Competing Interests: No competing interests were disclosed.
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  • Author Response 10 May 2019
    Achmad Kemal, Division of Immuno-Endocrinology and Fertility, Department of Obstetrics and Gynecology, Faculty of Medicine, Universitas Indonesia, Dr. Cipto Mangunkusumo Hospital, Jakarta, Indonesia
    10 May 2019
    Author Response
    Thank you for the review.
    We uploaded revision on our manuscript. We hope to hear your review.
    Competing Interests: No competing interests were disclosed.
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Reviewer Report 22 Jan 2019
Yutaka Osuga, Department of Obstetrics and Gynecology, Faculty of Medicine, University of Tokyo, Tokyo, Japan 
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https://doi.org/10.5256/f1000research.17418.r42438
In this study, the authors aimed to develop a standardized Indonesian questionnaire from already published English questionnaire that was successfully used to survey oncologists’ current knowledge, practice and attitudes in a Western country. The authors translated the questionnaire, and the ... Continue reading
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Osuga Y. Reviewer Report For: Developing an Indonesian fertility preservation questionnaire for health care providers treating patients with cancer: A preliminary pilot study [version 2; peer review: 2 approved]. F1000Research 2019, 7:1890 (https://doi.org/10.5256/f1000research.17418.r42438)
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  1. Yutaka Osuga, University of Tokyo, Tokyo, Japan
  2. Jane A. Stewart, Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK

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