Fertility preservation and cancer treatment: Use of narratives to integrate multidisciplinary approaches in a single network

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Authors:

Alessandra Razzano, Psy.D., Paola Chesi, M.Nat.Sc., Marta Sestero, M.D., Francesca Salvagno, M.D., Alberto Revelli, M.D., Ph.D., Chiara Benedetto, M.D., Ph.D. 

Abstract:

Objective: 

To study the Italian scenario of the cares for fertility preservation addressed to women with cancer, this research evaluated the experience of women offered oocyte cryopreservation before starting cancer treatment, with the aim to individuate value and critical elements of the care pathway and strengthen the multidisciplinary network among health care practitioners.

Design: 

The research was composed of a first phase of collection of narratives and a second phase for content analysis.

Setting: 

The research was carried out in Italy between June and October 2016 and disseminated online.

Patients: 

The collection of narratives was addressed to adult and reproductive-age women who pursued oocyte cryopreservation prior to cancer treatment, and health providers working in or collaborating with a fertility preservation service.

Interventions: 

Semi-structured plots were used to collect narratives from patients and healthcare
practitioners about their experiences of the care pathway. The narratives were analysed using content analysis methods and compared between the two groups of respondents.

Main Outcome Measures: 

58 narratives were collected, respectively 33 from women and 25 from
healthcare practitioners.

Results: 

Most patients revealed to have been well informed and supported by the multidisciplinary team of care (78%), and after the fertility preservation to have  faced the cancer treatment with a more positive attitude (89%). Healthcare practitioners confirmed the positive effects of oocyte cryopreservation on patients (65%), although the multidisciplinary network was rated as inadequate (65%).

Conclusions: 

The best practices and the critical elements reported in the experiences of care suggest the need to structure a national multidisciplinary care pathway involving oncological teams of care. Using narratives to explore how patients and health providers proceed through fertility preservation and cancer treatment may help to integrate this multidisciplinary network.


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Introduction

Advances in early cancer diagnosis and treatment have increased cancer survivorship in young women. Though the rates of complete recovery from cancer have gradually risen, the side effects of chemotherapy and radiotherapy continue to reduce fertility and impact on reproductive and endocrine functioning [1,2]. Cancer treatments can disrupt ovarian function and cause amenorrhea [3,4]. Depending on patient age, type, duration and cumulative dose of therapy, between 20 and 70% of women under age 40 experience primary ovarian failure [5]. Moreover, cancer-related infertility can lead to psychosocial morbidity and diminish quality of life [6,7]. While fertility preservation methods do not assure future parenthood, they may offer an opportunity to overcome sterility. Assisted reproductive technology procedures and fertility preservation programs have expanded rapidly in the past decade, yet the need remains to raise awareness of the importance of oncofertility for cancer patients of reproductive age and among healthcare providers in Italy.

“Fertisave” is an oocyte cryopreservation program instituted in 2001 at the Reproductive Medicine Unit, Department of Gynaecology and Obstetrics, Ospedale Sant’Anna, University of Turin, Italy. The care model is characterized by multidisciplinary integration of approaches in which physicians, psychologists, nurses and biologists collaborate. The fertility preservation services are offered to women under age 40 with newly diagnosed cancer before starting oncological treatment [8].

Narrative Medicine

Narrative medicine has been defined as “what is circumscribed between the physician and the patient, from the collection of information on events before the disease, to how it has been revealed, focusing on psychological, social and ontological implications.” Narratives from patients and healthcare practitioners allow to understand how the person lives a condition of illness and gives meaning to the care plan [9]. While evidence-based medicine (EBM) focuses on clinical processes and problem solving, narrative-based medicine (NBM) includes the person’s experience in coping with distress [10]. The integration of EBM and NBM provides clinicians with fresh methods to fortify their clinical practice with narrative competences [11-13]. Furthermore, the World Health Organization (WHO) recommends the use of narrative research to improve healthcare policies: “the rigorous use of narrative methods should be encouraged when reporting on the cultural contexts of health. Narrative approaches offer potential to improve health at the level of the individual, the community, the health professional, the health care organization and the health care system.” [14]

The present project was carried out at our institution in collaboration with ISTUD Foundation. The aim was to evaluate the experiences and attitudes of reproductive-age women who pursued oocyte cryopreservation prior to cancer treatment, in comparison with those of health providers working in or collaborating with a fertility preservation service. The research investigated: the type of information about fertility preservation options offered cancer patients before starting chemotherapy; the stakeholders’ needs, expectations and emotions along the care pathway; the perceived requisites for building a multidisciplinary network of specialist providers, including oncologists, gynaecologists, fertility preservation team members and psychologists. 

Material and Methods

The narratives were collected between June and October 2016 via advertisement on the project website (www.medicinanarrativa.eu/preserviamo), at the study centre and nationally through associations. All the participants were informed of the research aim and submitted their narratives voluntarily. Written informed consent was gained in compliance with Italian data privacy law [15]. The project was approved by the hospital ethics committee.

Two semi-structured narrative plots were respectively addressed to patients and practitioners, to guide them in writing their stories (Files 1 and 2 in the Supplemental Material). Throughout the plot, the patients were stimulated to relate their experience of the entire process of fertility preservation, starting from the diagnosis of cancer, to the following oncological treatment. The practitioners were asked their opinion about current fertility preservation options for cancer patients, daily clinical practice and relationships of care related to this issue. All the participants were asked to provide their main general data.

Two researchers independently read and analyzed the narratives according to frameworks for thematic content and then clustered them as follows:

1. Launer and Robinson classification: progressive versus stable narratives. This model is based on the individual’s ability to cope with a difficult, uncertain situation. Progressive narratives show coping strategies, whereas in stable narratives the person fails to control the situation [16,17].

2. Kleinman classification: disease and illness-centred stories. In this model, disease narratives focus on the clinical evolution of the condition, using a highly technical language, whereas illness narratives highlight the individual’s emotional and relational experiences in an open and flowing narration [18].

Semantic clustering was performed using NVivo 10 (QSR International, Melbourne Australia), a qualitative data analysis software program based on Grounded Theory [19].

The narratives from the two groups of respondents were analysed separately and then compared for their similarities and differences.

Findings from patients’ narratives

Thirty-three adult women who accepted oocyte cryopreservation before starting cancer treatment participated in the research. The majority (82%) were attending the hospital’s reproductive centre. The mean age was 34 years; most were married or living with a partner (79%), had a college degree (64%) and were in employment (88%). Over half had opted for oocyte cryopreservation within the 2 years prior to the project (Table 1).

Table 1. Patient Characteristics


Some 78% of patients stated that they had received information about cryopreservation from their healthcare practitioner: oncologist (56%), haematologist or surgeon (each 14%) or gynaecologist (11%); 16% had sought information over the Internet. The respondents felt they were supported in their choice by their healthcare practitioner (86%) and family members (76%). Lack of support or disagreement about undergoing fertility preservation was less frequent and was related to delays in cancer treatment. Patients reported that they felt overwhelmed and worried (each 36%) on their first visit to the fertility treatment centre. Although the tension about facing preparation for oocyte cryopreservation (42%), they described the care experience as being overall positive: they felt well informed (62%), supported (20%) and reassured (18%). Some 89% of respondents had a positive attitude toward the cancer treatments after undergoing fertility preservation: serenity, strength and trust being the most frequent emotions (each 20%), expressed both by women who survived cancer and those still undergoing treatment. Independently of their current health status, 36% stated they were satisfied with their decision to undergo oocyte cryopreservation, 28% stated that they were convinced and 8% felt proud. Writing the narrative was judged as a positive experience by 94% of the contributors, who defined it as pleasant and potentially useful for other women facing similar decisions about cancer treatment and fertility preservation.

According to the Kleinman model, 76% of the narratives were clustered as “disease/illness-centred”, alternating clinical aspects and inner reflections on emotional state. In the Launer and Robinson scheme, progression was a predominant feature in 62% of the narratives, indicating that the patients employed coping strategies during their care and maintained a positive attitude toward the future. Hope and optimism (19%), strength (13%) and awareness (10%) were the most frequent coping elements in the stories. Lack of coping strategies (38% of narratives) was mainly related to the ongoing cancer treatment, fear, insecurity, and the need for support (each 4%).

Findings from healthcare practitioners’ narratives

A total of 25 healthcare practitioners responded to the research, 80% of which were women. The mean age was 42 years, 92% of them resided in northwest Italy, 52% worked at the centre promoting the project; the breakdown by specialty was: gynaecologist (56%), biologist (16%), oncologist (12%), psychologist (8%), nurse/midwife (4% each)  (Table 2).

Table 2. Healthcare practitioners characteristics


Some 78% stated they had a good level of knowledge of fertility preservation programs since in most cases it was part of their daily activities; the remaining 22% was composed of healthcare practitioners who occasionally collaborated with fertility treatment centres and reported they needed to be better informed about the programs. All the respondents viewed the integration of fertility preservation and cancer care pathways positively, suggesting that it should be offered as a treatment option (59%) and a way to provide support (25%). Nevertheless, 23%  expressed concern about the risk of raising false hopes among patients. As emerged from the women’s narratives, 65% of practitioners stated that oocyte cryopreservation had a positive effect on their patients, perceiving them as being more serene, satisfied, motivated, aware and focused on their cancer treatment. Sixty-five percent of the healthcare practitioners rated the current state of the multidisciplinary network as inadequate, fragmented and inefficient. To improve patient care, a wider multidisciplinary network (26%) and more structured care pathway for fertility preservation (22%) were reportedly needed. Again, like their patients, the practitioners evaluated the experience of writing narratives positively (89%).

When the Kleinman model was applied, the disease element was predominant (48%), while 44% of the narratives were classified as “disease and illness-centred”, since clinical considerations were integrated with inner reflections on the daily practice. For the partial disclosure of narratives, Launer and Robinson’s model could be applied to 56% of the narratives; in 36% of which, progression was predominant, along with professional motivation, trust in fertility preservation programs, incentive to improve delivery of care and optimism related as coping strategies. Among the remaining 20%, a sense of powerlessness and frustration prevented them from developing coping strategies.

Discussion

This research presents the results of the first systematic activity of listening to the Italian stakeholders involved in a fertility preservation program. The narrative plot proved to be the right tool for this purpose, since it allowed the respondents to follow a guide along the care pathway, without limiting their freedom of expression. Content analysis using the Kleinman model of narratives showed that the majority were disease/illness-centred, indicating a balanced integration of clinical aspects and inner reflections and emotions.

Although the survey was conducted nationally, most of the respondents resided in the area where the fertility treatment centre operates. The number and origin of the narratives could be considered a limitation of the research; however, it reflects the local scenario of knowledge and information about fertility preservation programs.

The respondents’ inner reflections revealed the deep meaning fertility preservation has for them; it was defined by patients and practitioners alike as a source of hope. Even when facing disease, most patients felt that preserving fertility was as important as surviving cancer. The offered opportunity of oocyte cryopreservation represented a resource which gave them energy, a welcome tool to help them get through cancer treatments. Despite the uncertainty of the outcomes and the lack of guarantees, the patients considered the integration of fertility preservation and cancer treatments as an added value that improved the overall care pathway. In these patient narratives, practitioners can discover what is meaningful for their patients and lessen their concern about the risk of raising “false hopes”.

At the organizational level, the results suggest that fertility preservation programs and cancer treatments can be integrated and that this could have positive effects on the overall care pathway. Most of the patient narratives depicted a scenario of multidisciplinary cooperation in which the women were provided the best personalized care and respect for quality of life. Nevertheless, the healthcare practitioners often described the network as being fragmented and not formally recognized, as previous studies have shown [20]. The present research may be considered representative of a local best practice that contributes to improve the delivery of care. Nonetheless, the need remains to expand the network including professionals who care for young people with cancer.

Finally, the narratives do not represent cancer patients who could not benefit from the option of fertility preservation because they lacked information, or collaboration among healthcare practitioners was absent. These stories are still unknown and their number is unexplored.

Authorship

The authors actively contributed to the design of the survey, collection and analysis of the narratives and approved the final version of the manuscript. Conflict of interest: none.

Acknowledgments

The authors wish to thank the respondents for contributing their narratives; the “Gemme Dormienti” Association; the “Medicina a misura di donna” Foundation; the PRO-FERT Italian Society of Fertility Preservation. This research was unconditionally supported by Ferring Italia.

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