Breast Cancer Patient Adherence to Endocrine Therapy in Malaysia
Table of contents
Breast cancer is the most commonly occuring disease in women both in the developed and less developed world and the second most common cancer in general. (World Cancer Research Fund International, 2019) It is estimated that worldwide over 508 000 women died in 2011 due to breast cancer (Global Health Estimates, WHO 2013). As opposed to the West, where breast cancer growth rate rates have stabilised or even decreased, the occurrence of this disease has increased in most Asian countries in the course of recent decades, which includes Malaysia. Information obtained from the National Cancer Registry of Malaysia 2004 gave an age-institutionalized rate (ASR) of 46.2 per 100,000 ladies. This implies roughly 1 out of 20 ladies in Malaysia developed breast cancer in their lifetime. (Har Yip. et al., 2005)
Endocrine or hormonal therapy works by adding, blocking or removing hormones from the patient’s body to slow down or stop cancer growth. In some instances, the same hormone used could slow, halt or exterminate cancer cells. When it comes to breast cancer, aromatase inhibitors are most frequently selected and applied then used on patients to treat breast cancer. According to a Journal of Clinical Oncology article “Early Discontinuation and Nonadherence to Adjuvant Hormonal Therapy in a Cohort of 8,769 Early-Stage Breast Cancer Patients”, it was mentioned in that study that with the scientific findings obtained, it was known to the researchers that hormone therapy for breast cancer will lower down relapse and mortality, patients still do not stick to the medication and therapy prescribed thus, not adhering. (Hershman et al., 2010) Adherence which is regularly alluded to as compliance can be defined as the extent to which a patient’s behaviour coincides with medical advice. (The Johns Hopkins University Press, 1979) Numerous patients neglect to take the medication once a day as endorsed (nonadherence), or to proceed long term with the medication and ending the cycle earlier, and such habits from ideal medication duration consumption oftentimes result in treatment failure. “…adherence to adjuvant therapy in clinical practice is relatively poor, with only about 50% of women successfully completing 5-year therapy. Importantly, good adherence (>80% use) has been associated with lower recurrence risk.” (Chlebowski, Kim & Haque, 2019)
Oncology has made eminent development in the advancement of successful treatments to enhance cancer survival. It is, subsequently, astonishing that adherence seems, by all accounts, to be nearly as huge of an issue in oncology. It is important for breast cancer patients to stick to prescribed endocrine hormonal therapy and adhere to the treatment course. It is therefore necessary to investigate breast cancer patient adherence to endocrine therapy in Malaysia. By using a pilot qualitative study and interviews with the participants, this study will then aim to find causal reasons that influence whether breast cancer patients stick or do not stick to their prescribed endocrine therapy.
The qualitative research found on databases like Pubmed etc. seems to mostly explore on facilitating adherence to endocrine therapy on patients undergoing it, or side effects. For example the stability and predictive power of treatment expectations by Yigi Pan et al, 2018. There has been a qualitative research of factors associated with adherence regarding adjuvant endocrine therapy after breast cancer by Jo Brett. et all, 2018, but as of now, there has been no qualitative research done regarding adherence to endocrine therapy among breast cancer patients in Malaysia specifically. By proposing this study design, the previous studies regarding side effects or facilitating adherence could be connected and a different qualitative side of why patients fail to adhere to therapy will benefit multiple sides to come to a better understanding regarding this topic.
Aim and Research Questions
The aim for this pilot qualitative study is to investigate breast cancer patient adherence to endocrine therapy in Malaysia. By using interviews, the study will then investigate the causal reasons that influence whether breast cancer patients adhere or do not adhere to their prescribed endocrine therapy. The research questions resulting from this aim is : What motivated breast cancer patients to adhere to their prescribed endocrine therapy? Why did the non-adherent patients stop the prescribed therapy? Which reasons are believed by the non-adherence patients that made them have a change of heart and mind to endocrine therapy? Are there different reasons that made them stop endocrine therapy? What perceived barriers prevented patients from adhering to sticking to their medication routine? What are the factors associated to adherence or non-adherence to endocrine therapy among patients with breast cancer that has been prescribed to it?
The qualitative approach that this study intend to take, is by using semi-structured focus group one to one interviews for the following reasons: first, the interview that the interviewer and participant will be having is a formal interview verbal exchange but, because there will be a guide and list of questions that has been formulated beforehand, the conversation can still move away from the guide when the interviewer feels like it is necessary to do so. A one to one interview approach will be more personal, building trust and will also avoid any “group effect” kind of answers. This kind of flexibility would be great to the study, as it is a one-person researcher doing this pilot qualitative study and that researcher could adapt it to what he feels appropriate. There will still be a list of questions that need to be covered during the interview according to the order at hand, but with flexibility, participants will feel more at ease to disclose the factors they feel or think made them not adhere to the prescribed endocrine therapy. Semi-structured interviewing, according to RWJF – Qualitative Research Guidelines Project, Semi-structured Interviews, 2019 is best used when the researcher would not get more than one chance to interview the participant. By picking this method that is usually followed by observation and informal way of interviewing, the researcher will then develop a better understanding of the topic at hand which is vital to develop better semi-structured questions. As this pilot qualitative study design involves one researcher only, he will conduct the interview while recording it using a tape-recorder. By having the transcript, a better analysis could be reached post-interview. Second, by using semi-structured interview, the participant that is being interviewed could freely express their thoughts and views in their own time. And, lastly, it will eventually provide the researcher with a better quality and much more reliable qualitative data that could be compared.
The participants will be patients with breast cancer that has been told to go on an endocrine therapy prescription and started it. There will be two sources of participants:
- The first recruitment process and source will be done by advertising on oncology department notice board and sites, breast cancer forums and charity websites. Patients who respond back to the advertisement and self-report non-adherence to endocrine therapy will be called for an interview, then recruited as a participant in this study.
- The second recruitment process and source will be done by giving out questionnaire surveys at the oncology department in a public hospital in Kuala Lumpur, Malaysia. Patients who took part in this survey whether they reported adherence or non-adherence to endocrine therapy will be invited for an interview, then recruited as a participant in this study.
Quantity, Data Collection and Setting
We will begin the investigation by recruiting 50 participants, with a few expected drop offs of 5 participants and an estimated 45 interviews is proposed for this pilot qualitative design. The participant will be eligible for the study if they have been treated under the Malaysian cancer treatment guidelines and prescribed endocrine therapy. Participants must also have already begun their endocrine therapy before the patient interview, irrespective if they adhere or not to it. This study will exclude patients who are not willing to participate, had died, or could not take their medication on their own terms. The data will be collected via medical records which includes medical history, physical examination, tumour staging and grading etc and self-reports by each participant.
The interviews will be held in either Malay or English language and the entire interview will be recorded using a tape recorder. Additional field notes will be taken by the researcher moderating the focus groups. The timeframe of the interview will be 60-90 minutes, depending on the interview pace between the researcher and the interviewee. The interviews will be held in a seminar room at a convenient assigned location. Beverages (hot and cold) and small snacks in form of nuts, biscuits, cookies, sandwiches, and fruits will be provided before, during and after the interview.
The data obtained from the semi structured interviews will be categorised and analysed on Nvivo. Once a sufficient amount of transcript has been analysed, saturation process follows through, and eventually the categorisation will stabilise. Each participant could be match to “attribute data” on the spreadsheets. The researcher will manually go through the interview transcript and then creating nodes, inductive coding or codes amounts along the way. A Microsoft Excel sheet will also be created.
Ethics approval was obtained for this study from the Ministry of Health, Government of Malaysia. In accordance with ethics regulations, consent was obtained from all patients to participate in the study. Participation is voluntarily. All participants involved in this pilot qualitative study will always have the right to not answer questions asked, stop or leave the interview at any time and withdraw their data completely. All data will be treated confidential by the researcher. The participants that is in this study is only known by the researcher.
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