Select Body Image Concerns Unique to People with CF

During a CFReSHC Patient Task Force meeting on body image (3.1.2020), adult women with CF identified the following body image concerns [4]:

BMI as a Measure of Nutritional Status and Physical Wellbeing

Stature, weight, and body mass index (BMI) are commonly used in CF clinical care to assess nutritional status. Studies have found an association between low BMI and decreased lung function and mortality. For its part, the Cystic Fibrosis Foundation (CFF) has offered clinical care guidelines for clinicians to follow to ensure optimal health outcomes. Under this guidance, CF care teams have, for decades, recommended a high calorie diet to their patients [6]. 

Yet, Sheikh et al have interrogated the nature of this association, noting that researchers have not yet described the extent to which poor nutritional status directly causes poor pulmonary function status. In fact, Sheikh cites a dearth of studies that directly measure body composition in the CF community. Rather, because researchers have specifically shown an association of a higher BMI in the CF population with better pulmonary function (and vice versa), clinicians and researchers have conjectured that this link reflects the influence of lean body mass on muscle strength of the lung [5]. Sheikh points out, however, that BMI in the general population is used as an indicator of “body fatness,” not muscle strength. As such, Sheikh et al reassessed the value and efficacy of BMI as a measure of patients’ nutritional status, citing the particular need instead to study the relationship between fat, muscle stores, and CF health [5]. They conclude that, although BMI may be a fine screening tool, ascertaining patients’ lean body mass may be more helpful than BMI in determining the relationship between body composition and pulmonary function [5].

CFReSHC Patient Task Force (PTF) members have also raised questions about the value of BMI in CF clinical care. At a PTF meeting on Body Image in CF (3.1.2020), attendees wondered, like Sheikh, whether there were other methods to assess the health of a patient’s body, like the proportion of muscle mass, instead of low/high BMI. Many women expressed they felt pressure by their CF care team to reach a certain BMI and to eat high-calorie diets. They noted that such pressure impacts their stress levels, increases anxiety, and influences their body image [4]. 

Low Body Weight with CF

Malabsorption and undernutrition are well-documented in the CF literature and well known in CF care so our discussion here will be limited. The CFF recommends that patients routinely consult with a CF nutritionist to access the necessary resources to improve their health outcomes [1]. Individualized approaches to nutrition are becoming increasingly necessary in light of changing therapies and new health outcomes for patients with CF. 

Nutritionists provide dietary guidance, including information about increased caloric intake to combat low body weight. They also can offer recommendations about the appropriate fat intake to promote the proper absorption of CFTR modulators. 

We should be reminded, however, that interventions to treat poor nutritional status, can create important body image concerns. To address these challenges, some providers prescribe medications like Megace™ (Megestrol), Marinol™(dronabinol), or Remeron™ (Mirtazapine) as appetite stimulants. Megestrol is a progestin originally developed as a form of birth control. Dronabinol is a man-made form of cannabis. Mirtazapine is an antidepressant. Depo-ProveraⓇ may also help women gain weight [6]. 

Yet, when a woman becomes preoccupied with intense dietary regimens or other interventions to address undernutrition, her mental and physical health, including lowered self-esteem and body satisfaction, may be adversely affected [1,2]. 

Patients’ Perceptions and Behaviors

Body Image Post-Transplant

Many women with CF who have undergone a transplant confront changes to their body, inside and out. Indeed, the transplantation process can impact body image in very significant ways. Oftentimes, women with CF find themselves unprepared for these changes since they have overwhelmingly focused on the immediate health benefits of transplantation [10]. 

However, visible physical changes to one’s body can also impact one’s body image. In transplant, there are numerous such changes. The operation itself involves scarring. The steroids patients must take post-operatively can cause facial swelling (“moon face”) and increased appetite. Many women fight to put on weight pre-transplant so when they can gain weight post-transplant, they may see it as a huge positive in their lives. Since transplant can improve appetites, women might find they can enjoy food once again and can rely on ‘real’ food rather than supplements and overnight feeds, which can boost their morale [11]. Lastly, there are a variety of side effects to new transplant medications. Some immunosuppressants increase hair growth all over the body, which can be a particularly difficult side-effect for women to cope with [12]. Immunosuppressant drugs that are taken after transplant can also cause hair to thin. Tremors are another side-effect of transplant medications, though this does tend to improve with time and does not affect everyone [10]. While our society may over-exaggerate the need to uphold beauty norms, feeling good about oneself can make adjusting to transplantation easier [12].

Recommendations from CFReSHC’s Patient-Partners

Women participating in our Patient Task Force meeting on Body Image recommended that providers and patients have conversations about body image as part of routine clinical care. This dialogue can help patients feel more comfortable with their bodies. CFReSHC patient-partners also felt it important to address the mental and emotional components of body image [3]. 

Attendees at the CFReSHC body image meeting wanted their CF providers to support and comfort them when discussing this topic. Such support, they believe, will enable patients and providers to have open and honest communication about sensitive topics like body image. Some patients also expressed the desire to speak with their primary health care provider or with a psychosocial specialist about their body image concerns [3].  Furthermore, some of our patient-partners expressed a preference for discussing body image separately from pulmonary and nutritional discussions in the CF clinic. Patients may find discussing body image difficult to do with their CF provider, especially when their own health or weight goals differ from those of the medical team (e.g. feeling satisfied with themselves at a lower BMI than their medical team’s recommendation, conflicting opinions about g-tubes, etc.) [3].  

These women’s insights reveal that discussing body image is a fraught task, one that should be undertaken by providers with care and with various approaches, depending upon the individual. Acknowledging that CF providers may lack experience in having these conversations, patient-partners expressed uncertainty about how best to structure this dialogue [3].  

Perhaps when a patient is struggling with adherence to their CF regimen or engages in few social interactions, a provider can assess and address any existing body image issues and/or refer the patient to a CF social worker or mental health provider for further evaluation and help. Through that process, she may improve her health behaviors and doctor-patient communication may improve [10]. If a patient is not taking a medication as prescribed in order to avoid weight gain, the provider must assess the patient’s body image issues and work with her/them to develop a regimen that will best serve her/them.

Insights from Studies about Body Image and Communication

Researchers have offered insights that both comport with, and differ from, the advice and preferences of our patient-partners. Helms et al., for example, found that providers believe body image concerns should be discussed as a routine part of clinical care. These conversations can be a part of the annual screening, with more frequent follow-ups as needed [3]. The researchers stress that it is important for the patient to feel comfortable enough to have these conversations. 

Although the study looked at young adults, some of its findings can also be applied to older adults. Helms acknowledges that a strong interpersonal connection between the patient and provider is needed in order to have conversations about body image. The timing and circumstances of these conversations is also important to make the patient feel comfortable enough to disclose their concerns and issues [3]. Unlike CFReSHC patient-partners, who believe body image exceeds the scope of weight and growth, these researchers found that participants preferred that providers broach conversations about body image within the context of health-related topics, such as weight, growth, and nutrition since they saw a close link between nutritional status and its effect on overall health and lung function [3]. Like our patient-partners, Helms found most providers are unsure how best to bring up this topic with their patients; they feel they do not have adequate knowledge or familiarity with body image concerns. This knowledge gap can be a significant barrier to providing more routine, in-depth discussions, and can affect providers’ personal comfort level with raising the topic [3].  

Other researchers provide additional insights about conversations and knowledge gaps about body image in people with chronic illness. Quick et al. recommend that healthcare professionals attain training in methods to increase patient empowerment with regard to body image issues. Empowerment may, in turn, have positive effects on attitudes toward those with chronic health conditions as it provides these patients with social-environmental support [2]. Watson et al.’s work on diet and exercise in Cystic Fibrosis recommends providers consider taking a nutritional management approach that takes into account patients’ attitudes toward eating, shape, and personal appearance. Utilizing this approach involves a paradigm shift, especially after the emergence of CFTR modulators. With this type of approach, they can emphasize healthy eating rather than a high calorie and fat diet [16]. Watson also suggests one way of improving body image among young people with CF is to teach them that being attractive does not depend on their physical appearance [16]. Other ways to improve patients’ physical self-image can include addressing and challenging media messages head-on that endanger a patient’s body image on a regular basis [16]. 

Managing Body Image Disturbance

Many disease processes, medical and surgical interventions, and specific patient factors contribute to changes in body image. Providers who can assess and manage their patients’ body image issues can help facilitate positive patient experiences and outcomes [3]. Though there are surgical interventions that can address some body issues, these do not work if a woman believes that she is disfigured, yet, does not actually have an impairment. In the latter cases, providers can suggest ways to reframe her experience, like meeting someone with a similar problem and learning about her coping strategies [3]. Providers can also manage patients’ body image via pharmacologic interventions for anxiety or depression, or they can use behavioral modification to teach coping skills and relaxation techniques. They can also suggest lifting weights to build muscle. In short, patients and their providers may need to collaboratively problem-solve on many levels – psychological, emotional, medical, physical, spiritual, and cultural – to assist with managing body image issues [3]. 

The Impact of Body Image Concerns on Women’s Lives: Patients’ Perspectives

Our patient-partners acknowledge that poor body image can lead to feelings of low self-esteem. They state they are embarrassed or feel ashamed from PICC lines, ports, feeding tubes, and transplant scars. These markings and devices can negatively affect their relationships and intimacy. Many women with CF also feel self-conscious over how others view them and what others may say because of the physical manifestations of CF. Women are bothered, for example, that other people may notice when they cough, when people comment about being too thin, about having clubbed fingers, about taking enzymes when eating, or about gaining weight of more than 20+ pounds. 

Significant weight gain since starting CFTR modulators has also impacted women’s self-esteem and feelings of attractiveness. Their clothes don’t fit. They don’t recognize the bodies they are now inhabiting. Yet, while many women have negative body image concerns, some women with CF view their issues as sources of strength and survival.