Why do Insured Patients Discontinue Fertility Treatment?
A.D. Domar, K. Smith, L. Conboy, M. Iannone, M. Alper
A.D. Domar, K. Smith, L. Conboy, M. Iannone, M. Alper
It should come as no surprise that individuals and couples who seek fertility treatments have good reason to desire to continue their treatment until a successful pregnancy is achieved. However, some patients drop their pursuit of fertility treatments before achieving their goal. A team of researchers set out to investigate the possible reasons why individuals may drop out of fertility treatments before achieving pregnancy, and the results point to the importance of patient care and support throughout the treatment process.
A team of academics, one science doctor, and one medical doctor published the scientific article “A prospective investigation into the reasons why insured United States patients drop out of in vitro fertilization treatment” in 2010 to discuss why some patients of fertility treatments – specifically, IVF – fail to continue their treatments to the point of successful pregnancy and delivery. It is difficult to track patients who fail to follow-up with their healthcare providers, so the exact number of lost patients who fail to return are often lost to the abyss. It has been thought that in vitro fertilization (IVF) treatments are terminated for three main reasons: 1) pregnancy; 2) cost; and 3) active censoring – the refusal of the physician to continue treatment due to poor patient response to treatment or poor prognosis.
However, the authors of this study point to prior research to state that a significant number of patients terminate fertility treatment based on their own personal choice and not for financial reasons. Furthermore, the authors refer to previous studies to highlight that active censoring is actually a small contributor to reasons why patients fail to continue treatment. It is additionally stated that scientific studies on a global scale consistently cite psychological burden as a main reason for failure to continue treatment. As this is the case, the researchers felt it was important to accomplish two main goals in their study:
1. Determine what the source of stress (i.e. impact on a couple’s relationship, transportation issues, psychological consequences of infertility itself, inability to withstand the invasive procedures, or fear of potential side effects of medications or treatments) is causing this psychological burden
2. Determine what actions can be taken to lessen this psychological burden so patients can remain in treatment
To determine the source of stress for patients and what could have been done to evade this stress, the researchers conducted a survey. All patients of Boston IVF who were under the age of 40, did not use testicular biopsy, and who began their first IVF cycle between June 1, 2004 and November 2005 were included in the study. A year after each subject started this first cycle the researchers assessed the subjects’ records. Additional criteria that had to be met for inclusion in the study were at least three IVF cycles were covered by insurance, a viable pregnancy was not conceived, and no third IVF cycle was begun (thus, subjects stopped after one or two IVF cycles).
Each woman who qualified for the study was mailed a study packet containing a survey questionnaire that explained the research study, implied informed consent, and offered a relaxation CD as a type of reward for survey completion. The survey questionnaire included five sections that inquired about demographic information, one reason for treatment termination, and additional questions if the individual responded that the termination of treatment was due to psychological burden. Primary and secondary causes of psychological burden were inquired after (choices were provided) and individuals were also asked to note what could have helped them cope with the psychological burden (choices were provided).
Only 41 individuals provided usable responses to the survey questionnaire. The respondents ranged in age from 20 to 41 years old. The most common reason for seeking treatment was unexplained infertility (39% of responses), followed by male factor (24% of responses), followed by high FSH (17% of responses), followed by endometriosis or a tubal factor (12% of responses), and finally the remaining 8% claimed “other” (i.e. ovulatory disorder, polycystic ovary syndrome). Individuals who responded to the survey cited emotional reasons as the most common reason (39%) for discontinuing treatment. After this, 27% of subjects said they changed IVF centers, 10% cited the loss their insurance coverage, 5% stated that they changed paths and decided to pursue adoption or third-party conception instead, 5% reported they received advice from their physician to stop, and the remaining 10% failed to provide a reason for discontinuing treatment.
When individuals cited psychological burden as their reason for discontinuing treatment, they were asked to provide information regarding the most stressful part of the process. The two answers that appeared most frequently regarded 1) fertility taking too much of a toll on the patient’s relationship and 2) the patient felt too anxious or depressed to continue with the treatment protocol (if you can relate to this, see below). The answer that appeared the least frequently regarded a distaste for the large number of injections required during treatment. Researchers also asked individuals to provide information regarding why the medications involved in IVF treatment caused them stress. The most frequent answer in this category involved the injection of the medication, the second most frequent answer involved the necessity of having the injection when away from home. The least commonly picked reasons for this category were the following: 1) bubbles were present in the medication after mixing; and 2) there was the possibility of spilling the medication.
When asked how the medical center where the patients received treatment could have provided a better, easier experience for patients, the respondents again provided insights. The top answers included 1) the center should have provided written information about how to deal with the stress/psychological issues; 2) patients would have benefitted from easy and immediate access to a mental health professional, such as a psychologist or social worker; 3) stress reduction classes should be offered by the center; and 4) patients would have benefitted from more access to their IVF nurse coordinator. Two of the least frequent answers were 1) more locations would have benefitted patients; and 2) a female doctor would have eased psychological burden. Half of the 128 individuals originally sent the survey returned to the medical center within three years following the study for a thaw cycle of the frozen embryos they had left at the center upon discontinuation of treatment.
The authors discuss how it has been advocated that individuals who elect to stop fertility treatments be called “discontinuers” rather than “treatment discontinuers”, “rejecters”, “therapy terminators”, “premature terminators”, and “dropouts.” Indeed, as I am sure you will agree, the term “discontinuer” has a more positive connotation than any of the other terms. This study was conducted on a small number of individuals which decreases the ability of this study to be used to generalize trends within the population of individuals undergoing IVF. In spite of this, however, it is very important to note this study’s emphasis on mental health. A majority of participants in this study cited declining mental health as their major reason for discontinuing treatment, and mental health is something that should be taken as seriously as physical health. Physical and mental health are undeniably connected, so it is important for individuals seeking fertility treatments to keep a keen eye on maintaining both mental and physical health. It is the physician’s responsibility to provide education about possible mental health consequences of such treatments, but it is the patient’s duty to look out for their own mental health as they seek IVF or other fertility treatments. This is true of any and all individuals seeking such treatments, regardless of age, body mass index, and/or family history of mental health issues.
If you or someone you know is experiencing mental health issues as a result of fertility treatment (or for any reason) talk to a medical professional immediately. If the situation is an emergency, call 911. I have included a list of free online mental health resources below for you or anyone you know who may be struggling with mental health issues:
National Suicide Prevention Hotline (1-800-273-8255)
Mental Wellness Awareness Association
This list is not exhaustive, and I am not a medical nor mental health professional. If you are concerned about your own mental wellbeing or the mental well-being of a loved one, contact one of these resources and/or talk to a medical and/or mental health professional right away. The information provided here is meant to empower you and inform you about the research conducted regarding fertility. This information is provided in the hope that you can have discussions with your doctor and advocate for yourself, but it is not meant to serve as a medical recommendation or medical advice. Please always consult your doctor prior to deciding on a treatment plan that is the best option for you, your body, and your mind.
As always, stay informed, stay empowered, and good luck on your journey.