Qualitative Inquiry into Determinants of Decision Making for Therapeutic Mastectomy Amongst Pre and Peri- Menopausal Women, at Urban Gujarat

Introduction :

Breast cancer is the most common cancer occurring in females worldwide, representing nearly a quarter (25%) of all cancers in India.^[1] It ranks as the fifth cause of mortality around the globe^[2] where 18% of all females have been affected and over a million incident cases occur annually worldwide^[3]. The rate of incidence in India is 25.8 per lac population, whereas the mortality rate is 12.7 per lac population^[1]. With the increasing incident rate, breast cancer has become the most common cancer among urban females of India^[4]. A survey carried out by the Indian Council of Medical Research (ICMR) in the metropolitan cities from 1982 to 2005 had shown that the incidence of breast cancer has almost doubled.^[1] The annual rate of incidence increases by 0.5-2% in India, though preferentially it is more among younger age, contrasting the age-adjusted rate in western countries. The median age of breast cancer patients is postmenopausal in western countries, whereas in India, about 50% of patients are of premenopausal age.^[4] The average age of diagnosis is 10yrs younger in the country when compared to the western world.^[5]

Most of the females diagnosed with non- metastatic breast cancer are advised breast conservation surgery (also known as lumpectomy) or mastectomy.^[6] For breast cancer patients, making decisions forms an integral part of diagnosis, confirmatory and treatment phase.^[7] The decision of treatment choice is based on the clinical as well as non- clinical factors. Factors like age, income, residence, education, women's attitudes and beliefs about cancer recurrence, the chance of survival, body image and sexuality, are associated with cancer surgical decision.^[6]

Charles & Colleagues in 1999 designed three models for decision making for treatment choice. The models were a paternalistic model, a shared model, and an informed model. According to the paternalistic model, the doctor's decision is considered to be the best. It assumes that the doctor knows the best and will suggest appropriate treatment options. The second model is a shared model, where there is a shared decision between the physician and patient, but in Asia, there is an elongated version of the shared decision, where along with the patients; family members are included. And the last model is informed model, in which physician just informs the patients about the treatment choices available, and no further participation of physician is present in the decision-making process.^[7]

Diagnosis of this grave chronic disease is often emotionally challenging for patients, with a lot of emotions being pouring in like that of fear, despair, distress, anxiety, depression, grief, hopelessness, helplessness and a high degree of passivity. Research studies have shown that mastectomy causes more trauma than the disease itself.^[2] Though several studies in developed countries have explored aspects of the support system, body image, psychological reactions and quality of life.^[8] But in developing countries like India to the best of knowledge, there are empirically no studies documented regarding the psychosocial determinants of undertaking decision for therapeutic mastectomy in breast cancer patients of pre and peri-menopausal women. Hence the present study aims to explore the psychosocial determinants to undertake surgical decisions.

Methodology:

The study was conducted in a tertiary care health facility in urban Gujarat. The participants were pre and peri- menopausal women selected purposively. Women with no history of the menstrual period during the last 12 months and women with a history of hysterectomy or oophorectomy (not related to breast cancer treatment) were classified as postmenopausal, the women except these were considered pre and peri-menopausal women. The study included pre and peri-menopausal female participants aged more than 18 years, and who were diagnosed with breast cancer and had undergone a therapeutic mastectomy for the same.

Qualitative inquiry using Key informant interview (KII) method was used as the participants who were patients had better insights about the experiences they undergo during the decision-making process. The data was collected till saturation in responses was achieved. According to Alan, 2008 ^[9] numbers in qualitative research are not important in ensuring adequate samples as the concern in qualitative sampling is about the depth of the data; not with the empirical generalization. Interviews were done in a separate room with the participants. We used a piloted semi­structured topic guide, which was prepared based on the review of literature. All the interviews were conducted in vernacular language and audio recorded with adequate privacy. Each interview lasted 40-45 minutes. The researcher also took detailed noted to facilitate transcription. Written informed consent was sought before the start of the interview.

Transcription was done in Gujarati (Vernacular Language) and then translated into English. Data analysis was done inductively, simple content analysis was done using Atlas. ti 7.5.4. The approach involves reading and familiarizing with the data, coding, emerging sub-themes from the codes and finally consolidating sub-themes into major themes. All procedures performed in the study were carried out according to the ethical standards of the institutional ethics committee and ethical clearance for conducting the study was obtained from the Indian Institute of Public Health Gandhinagar (IEC No: 10/06/STUD/2019).

Results:

Discussion

This study explores various determinants and psychosocial dilemmas in the process of decision making for therapeutic mastectomy. From the analysis, it emerged that in the majority, men along with family members played an active role in decision making, commencing from the disclosure of information regarding having the disease to where to seek treatment from. Though the major decisions regarding surgical treatment were always backed by physician's advice, whereas women's role in decision making was found mainly passive. The findings coincided with 'paternalistic model', where the decision was either physician-led or men led, though the surgical decision was mostly physician paternalistic which was also reported by Beaver et al., 1999, Butow et al, 1997, Sekimoto et al., 2004, and Yusuf et al., 2013. ^{[10][11][12][8]} Health professionals' creditability was a driving factor to trust in the decision of the physician and even leaving decision completely onto them, congruent with Lauren, 2017 and Shariff et al., 2008. In some cases, the shared model was present, where the decision was taken collectively by the physician, family, and patients.^[13][7] It also supports the view of Williamson that for seriously ill disease, patients do prefer paternalism as initial shock and distress condition lowers the coping mechanism for pessimistic information or decision.^[11] The qualitative design was not meant to explore the relationship between the sociodemographic profile and role in decision making, but it is found in several studies that less educated patients are mostly passive in decision making.^[7,11,12] The study also revealed different information needs during treatment. Friends, family, known doctors played the primary source of informers which showed the relevance to interpersonal communication networks. Other than this, different sources of media also acted its part as informers. A review of literature by Ankem, 2005 on seeking information by cancer patients, revealed that disease-related information like diagnosis, chances of cure, reoccurrence, etc. and therapy-related information like options for treatment, side-effects, etc. were indicated as most important to cancer patients. ^[14] However, priorities for the types of information might also depend on various factors such as age, time since diagnosis, patients' fondness for a role in decision making, knowledge, and gender.^[14]

The treatment decision completely relied on physician's advice, no other option for a therapeutic mastectomy was sought for, when faced with a potentially fatal alternative. However, there was a distinction in making a decision and then living with it, while the latter being more emotionally challenging, and was more like a burden which was needed to be shovel off. Though studies confided with the findings of initial despair or emotional breakdown at the time of diagnosis being experienced by patients^[7], there was a grave concern about being the loss of femininity. Hairs and breasts which were metaphorized as a symbol of femininity, indicating womanhood, this scar of being was forever itched in mind of patients, along with scar of surgery. The perception of participants is being influenced by societal objectification of breasts with sexuality, femininity, and eroticism.^[13] Though this emotional fragility didn't concern in delaying the treatment, or opting for other options of treatment, as to get cured was of prime importance. But still, this fear leads to the ignition of social fear followed by exclusion. These findings were also documented by Saxena et al, 2018, whereas Storm- Dickerson et al., 2018 documented that retaining attractiveness, breast and feminity was not a concerning factor at the time of deciding the treatment, which was also reported in the present study.^[2,15]

From the time of diagnosis to coping with stressful conditions, a strong support system was standing hand in hand with the patients. According to Janis and Mann (1977), two factors were identified for influencing decision making, internal factors and external factors.^[7] The reported internal factors which were also motivators were a strong will power, urge to live a long and healthy life and fear of reoccurrence. The main external factor as a motivator was support from friends, family, physicians, and society. The studies have suggested that a good and strong support system is a strong motivator factor in enduring support from the initial diagnosis phase, confirmation of it, adhering to the treatment till completion of it.^[2^,8,13,16] Though society has a dual role, in a positive one, they motivate participants by setting good exemplars whereas in other it causes unwanted stress by spreading misconception and misguidance about disease. But most of the participants were not showing any concern much during the treatment phase. Despite this, participants never fail to be good exemplars themselves and indeed encouraged other women to seek consultation and go for treatment if required.

The study was an extensive exploration of the determinants for undertaking surgical decisions of breast cancer patients. To the best of knowledge, it is the first of its kind in the country, where the decision-making process was looked at with a psychosocial lens. With a small size of five participants, the results can't be generalized. The study location was a tertiary care hospital, where all the cancer patients were not managed, which also halted the generalizability of the results. One of the participants wasn't aware of the disease, which led to under exploration of the patient's emotional dilemma during the treatment. Nevertheless, more research is still required in this arena for further implications in the decision-making process for cancer patients.

Conclusion:

The study gives a prominent and complex view on determinants of undertaking surgical decisions. The current study highlighted the passivity of women as decision-makers even while taking the wrath of treatment affecting her mentally more than physically or biologically. Hence a patient-centered approach should be utilized to discuss and acknowledge the women's preferences in the decision­making process. It can be through the early use of appropriate psychometric measures to gain an initial understanding of how an individual might be conceptualizing the experience. The findings from the study would contribute to better strategizing the management of patients in the local context from all aspects and not just from the clinical lens. The participants were taking treatment from a hospital having a counselor, which many facilities don't have. ^[2] So along with strategies like having breast cancer education programs for patients and their family, and improving the interaction between the patients and healthcare providers, counseling services would address the emotional context of the treatment.